My plan for this morning was to sit down and blog about Christmas. I planed to encourage everyone to be grateful for the time together with loved ones and not be overly concerned with "what you did or didn't receive" as a gift this year. However, things don't always go as planned.
As I pulled this page up, Dylanne looks over my shoulder and says, "Why am I not on there, Dad?"
Heather jumps in and starts explaining to Dylanne that she doesn't want to be on this page. It is a page about fighting diabetes and trying to find a cure. It is a page that is written to encourage others to join in our fight and offer some insight on the diabetic life. I also pitched in and let Dylanne know that she is often mentioned on the page for all of the great stuff that she does to help us find a cure for Micheala.
"Yeah, but Micheala is famous", Dylanne quickly states.
Oh boy.....
Often times I forget that I am dealing with a 9 and 7 year old in my house. I don't take the time to think about how what I do or say will be viewed through their simplistic minds. I make the mistake that what I am thinking and put out there, will be translated by them the same way that I intend other adults to translate. This, funding a cure for diabetes, has become more tricky than I ever imagined. Maybe I am the one thinking like a 9 or 7 year old.
The first step to answering Dylanne is letting her know that she should be grateful for her health and the fact that she doesn't have to deal with this disease. But she does deal with this disease, not directly within herself, but as a big sister, she has to deal with diabetes. Whether it be the mood swings from her sister or having to stop sledding early due to her sister's low blood sugars...she has to deal with it. As most 9 year olds would, Dylanne pulls the "not fair" card when things like this come up. You know what Dylanne, you're right, it's not fair.
Next, we have to put out any belief that we are doing this to make Micheala famous. Explaining to Dylanne that a cure is not only for Micheala, but for the whole family is something that we have never really been able to get across to her. In her mind, she sees this blog, posters and have heard me speak...all about Micheala. I get that. Explaining to Dylanne that we are just trying to put a face with this disease is not been an easy task. I start to rethink the methods in which I choose to raise awareness, but know that I cannot alter too much or I cheat the public out of really knowing about type 1 diabetes.
Do I go a bit overboard? I don't know if that is possible. I ask all of you parents out there, "What would you do in my situation?" I am trying to offer a better future for Micheala and Dylanne, which unfortunately means spending a lot of my focus on curing diabetes.
I love the fact that Dylanne asks questions like this because it means that she is aware of what we are doing. Even if it means trying to answer her tough questions, she is witnessing what I hope gets translated in her mind as hard work and determination.
Dylanne will always be a part of my campaign for the cure, hopefully in the way that she is now and not as someone that needs a cure herself. Her picture may not be all over the place, but she is very much a big reason on why we are doing what we do.
Monday, December 24, 2012
Wednesday, December 5, 2012
Walk By Faith
This year, we walk by faith. It's all we have, but it's all we need.
The past 3 years I have been painting the vision for Micheala. A vision that someday we will have a cure for T1D. Someday she can be a normal kid. Someday there will be no blood sugar checks, CGM site changes or pump site changes.
I paint this vision with an extreme amount of faith that our funded researchers will make the discovery that will lead to the cure.
Faith is what inspires me to fundraise. Faith is what keeps us going forward. Faith is what eliminates the fear of speaking in front of large groups of people. Faith is what helps us turn the other cheek to nay sayers. Faith is what helps us organize our fundraisers. Faith is what helps us speak with conviction.
We are walking by faith this year.
Faith is telling me that all of our efforts are not going without reward. The funds, coupled with the awareness, that we are raising is helping those that are trying to help us. Faith is leading us, because it is all we have.
This past week has been a diabetic week from hell. Prior to belief, our life support (insulin pumps and CGM sensors) don't always work like they are suppose to. Micheala was at the bad end of this dilemma this week.
It started with a CGM sensor not communicating her blood sugars to her pump. At this point, her blood sugars were still normal, but we always get a bit concerned when things don't operate as advertised. Then her pump started only delivering half of her insulin doses. Thank God we have a fantastic support person in our pump rep, who walked us through many different scenarios over the phone. Blood sugars started to increase, which resulted in a sleepless night for me on Monday night.
Pump and CGM site changes; we thought we were on the right path to recovery. Micheala missed school on Tuesday due to a restless night. Diabetes messes with your life that way and it sucks. Starting to feel better, but her pump was only delivering half doses of insulin. A walk through with the rep once again, and we finally solved the problem. No more high blood sugars! However......she started to drop.
Now we found ourselves dealing with extremely low blood sugars. Dipping below 60 today at school and unable to bring them up on a consistent level, we couldn't let her ride the bus home, so Heather had to pick her up from school. Thankfully tonight, we have them back on track. What a roller coaster of a week so far!
I have to have faith that someday this madness will be over. At 35 years old, I still have my own issues with trying to control my own blood sugars, but adding a 7 year old is a nightmare. I was asked today why I don't include my battle with diabetes in our fundraising efforts. It was never and will never be about me. I have learned to live with the pain of having diabetes. I know that I look alright from the outside, but quite honestly...I hurt.
I love it when I have good days. Days in which I feel good and my body doesn't hurt as much. A recent doctor's appointment has verified that I am in good health, but 20 years of diabetes still makes you sore. My feet hurt the most. Long periods of being on my feet make for a sore evening at home. After a day of wearing dress shoes, there is nothing better than coming home and putting my feet up. With 2 young girls, putting my feet up at night is rare. I have learned to live with this pain because I would rather have the pain in my own 2 feet than have my girls feel pain in their heart because their dad wouldn't play with them.
Blood sugars have a mind of their own and love to mess with you in the middle of the night. Whether it be waking up in the middle of the night, stiff and sore, from having high blood sugars, or waking up covered in sweat because your blood sugars have dropped; sleepless nights are just part of the gig. This causes fatigue throughout the day. I feeling like you are constantly tired and lying about it to those that witness you yawn throughout the day.
I am walking with faith. Faith that this will all someday go away.
I ask you to join us and walk with faith. I don't have any promises to offer you other than that if you choose to join us and walk with faith, that you are making a difference to me, Micheala and those others with T1D.
Be a difference maker...walk by faith.
The past 3 years I have been painting the vision for Micheala. A vision that someday we will have a cure for T1D. Someday she can be a normal kid. Someday there will be no blood sugar checks, CGM site changes or pump site changes.
I paint this vision with an extreme amount of faith that our funded researchers will make the discovery that will lead to the cure.
Faith is what inspires me to fundraise. Faith is what keeps us going forward. Faith is what eliminates the fear of speaking in front of large groups of people. Faith is what helps us turn the other cheek to nay sayers. Faith is what helps us organize our fundraisers. Faith is what helps us speak with conviction.
We are walking by faith this year.
Faith is telling me that all of our efforts are not going without reward. The funds, coupled with the awareness, that we are raising is helping those that are trying to help us. Faith is leading us, because it is all we have.
This past week has been a diabetic week from hell. Prior to belief, our life support (insulin pumps and CGM sensors) don't always work like they are suppose to. Micheala was at the bad end of this dilemma this week.
It started with a CGM sensor not communicating her blood sugars to her pump. At this point, her blood sugars were still normal, but we always get a bit concerned when things don't operate as advertised. Then her pump started only delivering half of her insulin doses. Thank God we have a fantastic support person in our pump rep, who walked us through many different scenarios over the phone. Blood sugars started to increase, which resulted in a sleepless night for me on Monday night.
Pump and CGM site changes; we thought we were on the right path to recovery. Micheala missed school on Tuesday due to a restless night. Diabetes messes with your life that way and it sucks. Starting to feel better, but her pump was only delivering half doses of insulin. A walk through with the rep once again, and we finally solved the problem. No more high blood sugars! However......she started to drop.
Now we found ourselves dealing with extremely low blood sugars. Dipping below 60 today at school and unable to bring them up on a consistent level, we couldn't let her ride the bus home, so Heather had to pick her up from school. Thankfully tonight, we have them back on track. What a roller coaster of a week so far!
I have to have faith that someday this madness will be over. At 35 years old, I still have my own issues with trying to control my own blood sugars, but adding a 7 year old is a nightmare. I was asked today why I don't include my battle with diabetes in our fundraising efforts. It was never and will never be about me. I have learned to live with the pain of having diabetes. I know that I look alright from the outside, but quite honestly...I hurt.
I love it when I have good days. Days in which I feel good and my body doesn't hurt as much. A recent doctor's appointment has verified that I am in good health, but 20 years of diabetes still makes you sore. My feet hurt the most. Long periods of being on my feet make for a sore evening at home. After a day of wearing dress shoes, there is nothing better than coming home and putting my feet up. With 2 young girls, putting my feet up at night is rare. I have learned to live with this pain because I would rather have the pain in my own 2 feet than have my girls feel pain in their heart because their dad wouldn't play with them.
Blood sugars have a mind of their own and love to mess with you in the middle of the night. Whether it be waking up in the middle of the night, stiff and sore, from having high blood sugars, or waking up covered in sweat because your blood sugars have dropped; sleepless nights are just part of the gig. This causes fatigue throughout the day. I feeling like you are constantly tired and lying about it to those that witness you yawn throughout the day.
I am walking with faith. Faith that this will all someday go away.
I ask you to join us and walk with faith. I don't have any promises to offer you other than that if you choose to join us and walk with faith, that you are making a difference to me, Micheala and those others with T1D.
Be a difference maker...walk by faith.
Wednesday, November 21, 2012
2012 Eastern Iowa JDRF Fund-A-Cure Video
This video was played the night of the Gala. Wanted to share with all of my friends and family.
Friday, November 16, 2012
The Fighter
Lately I have been inspired by the song "The Fighter" by the Gym Class Heroes. Anyone that has ever heard this song, knows exactly what I am talking about. If you haven't heard the song, I suggest you go to You Tube and watch the video, which offers more inspiration.
Micheala introduced me to this song. Yes, you read right. My seven year old daughter introduced me to this song. She heard it on the radio and was singing it one day. She mentioned that she would like to use this song as her song for her JDRF video this year. So I gave it a listen and decided right a way that this was the perfect song. The song talks about the Olympic gymnastic from the Bronx who overcame difficult obstacles in his life to make it to the 2012 Olympics. Truly inspirational.
This year's Pump Princess JDRF campaign is taking a different perspective. In the past, our videos have shown the struggles that come with being a T1D accompanied with a slow sad song, geared to pull at the viewers heart strings a bit. This year, we want people to know that we are in this fight. We are stepping in the ring with the heavyweight know as T1D, standing toe-to-toe with it and preparing to knock it out.
I love this song because it really describes Micheala....a fighter.
Tonight, Micheala was invited to spend the night with a friend and unfortunately she is not able to do this. She is only a week and a half into wearing her new insulin pump and we are still getting into the swing of regulating her sugars and working the new pump. This was a big disappointment for Micheala, but it came down to a night of fun with a friend or keeping her alive for more fun opportunities in the future. Her disappointment will pass, but it still stings. Diabetes has landed the first punch in this fight.
The past 3 years have been full of punches landed by diabetes. Different hospitalizations, missed sleepovers, timeouts while playing with friends and a lot of sleepless nights. Despite the many blows landed by diabetes, Micheala keeps getting back up. She rolls with the punches. She is small but she is strong. She knows that if she can keep getting up after each punch, that she will eventually land that devastating blow on Diabetes. However, each blow leaves her scarred and weaker.
Every time diabetes lands a punch, it starts to raise questions of doubt and hopelessness. Is this fight really worth fighting? Am I matched up against an opponent that bigger than me? If diabetes is going to beat me, then why even fight back? Am I going to lose this fight? Confidence fades with every blow, desperation sets in, the will to fight back starts to slowly become vacant.
Micheala keeps fighting. She gets angry and fights back with even more confidence. She knows that she has people in her corner doing everything they can to keep her in this fight. She knows that she has the support from friends, family and strangers. She knows that her T1D friends are counting on her to stay strong. Like the song states....Micheala is a fighter.
I am proud of Micheala. There was a point in my life while I was standing in the ring with diabetes, that I wanted to stay down after a devastating blow. My heart attack at the age of 30 took everything out of me. Had it not been the support of my family standing next to my bed as I battled back, I may have given up. I wanted to give up, but I couldn't give up. The people in my corner were not ready to throw in the towel, but I was. Had I thrown in the towel, I wouldn't be here today fighting this battle with Micheala. Sometimes perspective is a bitch and it slaps you right in the face....this is one of those moments.
I am ready to starting landing some punches on diabetes and we already have started working the "jabs". The awareness and funds that we have raised over the past 3 years for JDRF is making a difference in this fight. In terms of research, or researchers are very close to having the artificial pancreas ready to go. Although there is no date for the artificial pancreas, I know that it is near. This is not a cure for diabetes, but this will make kids with diabetes have the ability to live a normal life. Studies are being funded with the money that is being raised to find out the answers to the "whys" and the "hows" with diabetes. Money being raised is bringing advancements in the Cure, Treat and Prevention of diabetes. We are landing blows and fighting back.
Diabetes has met it's match with Micheala. She is little, she is cute but she is a fighter.
With all honesty, I have visions of this fight ending with Micheala standing in the middle of the ring with her hands raised in victory. I can see that and fight for that. That day is coming.
I get laughed at when I share that vision. If it hasn't happened yet, it will never happen....bullshit, not if we have anything to do with it. I can't just sit around and watch my daughter continuously get knocked down by diabetes. I'm tired of holding my breathe every time she gets knocked down, hoping she will get back up. I cannot accept the fact that she is outmatched, an underdog, in this fight and has no chance of winning. She will win...she is a fighter.
Who is your fighter or what are you fighting for? When you get knocked down, are you getting back up? Finally, when you walk into a room, do people turn and say:
"HERE COMES A FIGHTER!"
I blog because I want Micheala to someday read and realize her own strength and all of the great things she is doing for T1D research. Micheala, at this point, we have made it through 3 rounds of this fight and almost through the 4th. You are strong, you are my hero and you are a FIGHTER!
Love you sweetheart.
Micheala introduced me to this song. Yes, you read right. My seven year old daughter introduced me to this song. She heard it on the radio and was singing it one day. She mentioned that she would like to use this song as her song for her JDRF video this year. So I gave it a listen and decided right a way that this was the perfect song. The song talks about the Olympic gymnastic from the Bronx who overcame difficult obstacles in his life to make it to the 2012 Olympics. Truly inspirational.
This year's Pump Princess JDRF campaign is taking a different perspective. In the past, our videos have shown the struggles that come with being a T1D accompanied with a slow sad song, geared to pull at the viewers heart strings a bit. This year, we want people to know that we are in this fight. We are stepping in the ring with the heavyweight know as T1D, standing toe-to-toe with it and preparing to knock it out.
I love this song because it really describes Micheala....a fighter.
Tonight, Micheala was invited to spend the night with a friend and unfortunately she is not able to do this. She is only a week and a half into wearing her new insulin pump and we are still getting into the swing of regulating her sugars and working the new pump. This was a big disappointment for Micheala, but it came down to a night of fun with a friend or keeping her alive for more fun opportunities in the future. Her disappointment will pass, but it still stings. Diabetes has landed the first punch in this fight.
The past 3 years have been full of punches landed by diabetes. Different hospitalizations, missed sleepovers, timeouts while playing with friends and a lot of sleepless nights. Despite the many blows landed by diabetes, Micheala keeps getting back up. She rolls with the punches. She is small but she is strong. She knows that if she can keep getting up after each punch, that she will eventually land that devastating blow on Diabetes. However, each blow leaves her scarred and weaker.
Every time diabetes lands a punch, it starts to raise questions of doubt and hopelessness. Is this fight really worth fighting? Am I matched up against an opponent that bigger than me? If diabetes is going to beat me, then why even fight back? Am I going to lose this fight? Confidence fades with every blow, desperation sets in, the will to fight back starts to slowly become vacant.
Micheala keeps fighting. She gets angry and fights back with even more confidence. She knows that she has people in her corner doing everything they can to keep her in this fight. She knows that she has the support from friends, family and strangers. She knows that her T1D friends are counting on her to stay strong. Like the song states....Micheala is a fighter.
I am proud of Micheala. There was a point in my life while I was standing in the ring with diabetes, that I wanted to stay down after a devastating blow. My heart attack at the age of 30 took everything out of me. Had it not been the support of my family standing next to my bed as I battled back, I may have given up. I wanted to give up, but I couldn't give up. The people in my corner were not ready to throw in the towel, but I was. Had I thrown in the towel, I wouldn't be here today fighting this battle with Micheala. Sometimes perspective is a bitch and it slaps you right in the face....this is one of those moments.
I am ready to starting landing some punches on diabetes and we already have started working the "jabs". The awareness and funds that we have raised over the past 3 years for JDRF is making a difference in this fight. In terms of research, or researchers are very close to having the artificial pancreas ready to go. Although there is no date for the artificial pancreas, I know that it is near. This is not a cure for diabetes, but this will make kids with diabetes have the ability to live a normal life. Studies are being funded with the money that is being raised to find out the answers to the "whys" and the "hows" with diabetes. Money being raised is bringing advancements in the Cure, Treat and Prevention of diabetes. We are landing blows and fighting back.
Diabetes has met it's match with Micheala. She is little, she is cute but she is a fighter.
With all honesty, I have visions of this fight ending with Micheala standing in the middle of the ring with her hands raised in victory. I can see that and fight for that. That day is coming.
I get laughed at when I share that vision. If it hasn't happened yet, it will never happen....bullshit, not if we have anything to do with it. I can't just sit around and watch my daughter continuously get knocked down by diabetes. I'm tired of holding my breathe every time she gets knocked down, hoping she will get back up. I cannot accept the fact that she is outmatched, an underdog, in this fight and has no chance of winning. She will win...she is a fighter.
Who is your fighter or what are you fighting for? When you get knocked down, are you getting back up? Finally, when you walk into a room, do people turn and say:
"HERE COMES A FIGHTER!"
I blog because I want Micheala to someday read and realize her own strength and all of the great things she is doing for T1D research. Micheala, at this point, we have made it through 3 rounds of this fight and almost through the 4th. You are strong, you are my hero and you are a FIGHTER!
Love you sweetheart.
Thursday, November 8, 2012
A Ton Of Bricks
On Wednesday I was down at the University of Iowa Fieldhouse at the U of I Wellness Fair. I was working a booth for JDRF primarily to raise awareness for T1D. It gave me the opportunity to meet with all sorts of people and explain to them what JDRF is about and what we fund. Anytime JDRF has the opportunity to promote our mission, it is always a win for us.
Shortly before the noon hour, an older woman approached my booth. We started with the usually greeting, but then she started to ask questions about JDRF. Her questions were very specific, which started to make me wonder or become curious about her connection to T1D. She didn't appear to be a nurse, or at least she wasn't wearing a hospital ID badge like most of the wellness fair goers. Curiosity took over and so I asked her about her connection to T1D.
She started to tell me that she had a grandson that was a T1D. The story was short and to the point as she then told me that a few years back they lost her grandson to T1D at the age of 4. She described him as a very sick young man that just didn't have any fight left in him. It still seemed very fresh in her mind, although she didn't show any emotion. She then told me that she appreciates everything that we (JDRF) do to help find a cure for diabetes. I explained to her that JDRF is focused on finding the cure, but also discovering better ways to treat and funding research to someday prevent T1D. She wished me a good day and went on to the next booth.
The rapid flow of people at the fair prevented me from really processing what this woman had shared with me. Her story did stick in my mind but later on that night, it hit me like a ton of bricks.
Micheala was 4 years old when she was diagnosed.
I couldn't stop thinking about the reality or possibility of me being that person sharing that story at the wellness fair to a JDRF staff member. I can honestly say that I don't worry about my daughter falling victim to diabetes on a daily basis. I don't because I have faith in the things that we do to take care of her. However, there is always that possibility that just doesn't ever completely vacate my mind.
One bad string of events that go wrong with Micheala can make her very sick. The common cold and flu often times has Heather and I on "red alert" with Micheala. She is 7 years old and little; it doesn't take much to wipe her out. That's just reality.
I also thought long and hard about purpose. Parents and grandparents should not have to deal with the pre-mature passing of their T1D loved ones. I started thinking about the things that I am doing and really questioning if it was "enough". What else can be done that is not being done right now?
I don't think of T1D is a death sentence. I encourage other T1Ds not to think of T1D as a death sentence either. Death sentences have a pre-determined ending, which in this case would mean that T1D wins and we are the victims. T1D is more of a temporary situation. Yes we have T1D now, but the research is going to provide us with a cure someday...I believe that.
I find it difficult to stomach the fact that I simple do not have enough hours in my day to help the thousands of families that live with T1D in the Eastern Iowa area. That list of families is long and continues to grow....daily. In the month of October I welcomed 15 new families to Eastern Iowa JDRF, and those are just the families we know about. Today I welcomed 2 new families. The families are all the same...they never change...they are T1Ds now and scared as hell. I tell them that things will get better, but do they believe me?
Wednesday hit me like a ton of bricks. I pray every night for the strength to carry those bricks on my back and continue to march forward. Not just for me, Micheala or all the families that are part of Eastern Iowa JDRF, but for that woman and those like her that have loved ones that just couldn't fight any longer. This cure will be for them. A cure will not bring their loved ones back, but it will prevent others from being that stranger across the table at a wellness fair sharing a tragic story in which T1D is the victor.
Shortly before the noon hour, an older woman approached my booth. We started with the usually greeting, but then she started to ask questions about JDRF. Her questions were very specific, which started to make me wonder or become curious about her connection to T1D. She didn't appear to be a nurse, or at least she wasn't wearing a hospital ID badge like most of the wellness fair goers. Curiosity took over and so I asked her about her connection to T1D.
She started to tell me that she had a grandson that was a T1D. The story was short and to the point as she then told me that a few years back they lost her grandson to T1D at the age of 4. She described him as a very sick young man that just didn't have any fight left in him. It still seemed very fresh in her mind, although she didn't show any emotion. She then told me that she appreciates everything that we (JDRF) do to help find a cure for diabetes. I explained to her that JDRF is focused on finding the cure, but also discovering better ways to treat and funding research to someday prevent T1D. She wished me a good day and went on to the next booth.
The rapid flow of people at the fair prevented me from really processing what this woman had shared with me. Her story did stick in my mind but later on that night, it hit me like a ton of bricks.
Micheala was 4 years old when she was diagnosed.
I couldn't stop thinking about the reality or possibility of me being that person sharing that story at the wellness fair to a JDRF staff member. I can honestly say that I don't worry about my daughter falling victim to diabetes on a daily basis. I don't because I have faith in the things that we do to take care of her. However, there is always that possibility that just doesn't ever completely vacate my mind.
One bad string of events that go wrong with Micheala can make her very sick. The common cold and flu often times has Heather and I on "red alert" with Micheala. She is 7 years old and little; it doesn't take much to wipe her out. That's just reality.
I also thought long and hard about purpose. Parents and grandparents should not have to deal with the pre-mature passing of their T1D loved ones. I started thinking about the things that I am doing and really questioning if it was "enough". What else can be done that is not being done right now?
I don't think of T1D is a death sentence. I encourage other T1Ds not to think of T1D as a death sentence either. Death sentences have a pre-determined ending, which in this case would mean that T1D wins and we are the victims. T1D is more of a temporary situation. Yes we have T1D now, but the research is going to provide us with a cure someday...I believe that.
I find it difficult to stomach the fact that I simple do not have enough hours in my day to help the thousands of families that live with T1D in the Eastern Iowa area. That list of families is long and continues to grow....daily. In the month of October I welcomed 15 new families to Eastern Iowa JDRF, and those are just the families we know about. Today I welcomed 2 new families. The families are all the same...they never change...they are T1Ds now and scared as hell. I tell them that things will get better, but do they believe me?
Wednesday hit me like a ton of bricks. I pray every night for the strength to carry those bricks on my back and continue to march forward. Not just for me, Micheala or all the families that are part of Eastern Iowa JDRF, but for that woman and those like her that have loved ones that just couldn't fight any longer. This cure will be for them. A cure will not bring their loved ones back, but it will prevent others from being that stranger across the table at a wellness fair sharing a tragic story in which T1D is the victor.
Saturday, November 3, 2012
Are You Crazy? You're Thankful For That?
November. I have noticed that the latest Facebook craze has been posting something on your wall, every single day, in which you are thankful for in your life. Reading through these posts, I can't help but notice that all of them have the same theme. Family, friends, God and so on. Which I agree, are all very important things and I am very thankful for those things as well. I have made the decision to not participate in this latest facebook craze. I am not defiant, but have chosen not to participate based on my anticipation of the public's perception. That's why I have a blog.
Yes November is highlighted by the ever so popular holiday of Thanksgiving. Not many people know that November is National Diabetes Month. I mention this because it leads into what I am truly thankful for in this life that I am currently living.
I am thankful for having diabetes. More specifically, type 1 diabetes (T1D).
Why in the hell would someone be thankful for a disease that has no cure and will eventually end his life someday?
I think of it like this. By me having T1D, maybe I took the place of some child having this disease. Being an adult, even though it is still very difficult, I am better equip to battle this disease. Many of you have heard me say that I wish that just me having this disease would have filled the quota for diabetes in our household. Unfortunately, that wasn't the case. I am also thankful for this disease because I feel as if it has changed my life for the good. I wasn't always the "poster child" for diabetes, but my daughter's diagnosis has flipped the script in my life. I do care about diabetes and am now focused on finding her cure.
T1D has also led to many great friendships and relationships. Not exactly how I would like to meet people, but I know that I may have never crossed paths with these people if diabetes was not the common denominator. These people have been so supportive and very unselfish with their time.
Diabetes has led us to JDRF. JDRF is by far one of the best organizations around. What I like about JDRF is the personal connection that the staff makes with each and every person with diabetes. I like that their focus is on the cure, prevention and treatment of T1D. I like that with their fundraising efforts, 82.5% of every dollar raised goes directly to funding research, which is a leader amongst all organizations when it comes to efficiency.
Yes I am thankful for a disease that is killing me slowly everyday. But while this disease destroys me from the inside, it has also made me a better person (or at least i think so).
Do I wish that we didn't have to "deal" with diabetes? Yes. That wasn't a choice we were given. God dealt us our cards, it is up to us to come up with the best hand to win. That doesn't happen if we look at those cards as a bad hand and fold. We don't have the option to fold. We will not fold.
Yes November is highlighted by the ever so popular holiday of Thanksgiving. Not many people know that November is National Diabetes Month. I mention this because it leads into what I am truly thankful for in this life that I am currently living.
I am thankful for having diabetes. More specifically, type 1 diabetes (T1D).
Why in the hell would someone be thankful for a disease that has no cure and will eventually end his life someday?
I think of it like this. By me having T1D, maybe I took the place of some child having this disease. Being an adult, even though it is still very difficult, I am better equip to battle this disease. Many of you have heard me say that I wish that just me having this disease would have filled the quota for diabetes in our household. Unfortunately, that wasn't the case. I am also thankful for this disease because I feel as if it has changed my life for the good. I wasn't always the "poster child" for diabetes, but my daughter's diagnosis has flipped the script in my life. I do care about diabetes and am now focused on finding her cure.
T1D has also led to many great friendships and relationships. Not exactly how I would like to meet people, but I know that I may have never crossed paths with these people if diabetes was not the common denominator. These people have been so supportive and very unselfish with their time.
Diabetes has led us to JDRF. JDRF is by far one of the best organizations around. What I like about JDRF is the personal connection that the staff makes with each and every person with diabetes. I like that their focus is on the cure, prevention and treatment of T1D. I like that with their fundraising efforts, 82.5% of every dollar raised goes directly to funding research, which is a leader amongst all organizations when it comes to efficiency.
Yes I am thankful for a disease that is killing me slowly everyday. But while this disease destroys me from the inside, it has also made me a better person (or at least i think so).
Do I wish that we didn't have to "deal" with diabetes? Yes. That wasn't a choice we were given. God dealt us our cards, it is up to us to come up with the best hand to win. That doesn't happen if we look at those cards as a bad hand and fold. We don't have the option to fold. We will not fold.
Thursday, November 1, 2012
New Beginnings....Well...Kind Of
Today is National T1D (type 1 diabetes) Day. It's not really a day to celebrate. Let's be honest, diabetes sucks and who wants to celebrate that shit. It's more of a day in which we think about those that live with type 1 diabetes and honor those people for being courageous. We think about those that have lost their battle with T1D and unfortunately will never get to experience what it will be like when we find the cure. Today, we spent the day thinking about new beginnings....well...kind of.
Heather and I have made the decision to switch Micheala's insulin pump. After doing some research, we found an insulin pump that will better fit her needs. Her old insulin pump was fine, but we needed more. We needed something to help us better control the roller coaster that is her blood sugars. Our new insulin pump has a built in CGM (Continuous Glucose Monitor). The new feature will alarm us when her blood sugars are getting too high or getting too low. It will even warn us if her blood sugars are starting to rapidly trend up or down. This feature will help us give her insulin or back off on insulin before she either gets too high or bottoms out. Basically takes a lot of the guessing game out of the equation.
Meeting with the pump rep was like starting all over again. We had to learn about the insulin pump, just like when we started the other pump over 3 years ago. Micheala went through the same anxiety with this pump, as she did when starting her other pump. We had to bribe her to put in her new sites and she resisted and cried in fear. Eventually she was brave and allowed us to insert the new pump sites.
Even at 7 years old, I hate to see Micheala scared. I saw a fear in her eyes that I haven't seen in quite awhile. Someone who has been so brave over the past 3 years with her diabetes, was once again scared. She just didn't want to hurt. As parents, we knew that this was the best for her and had to be strong, but tears the size of beach balls coming from her eyes did not make being a Dad very easy for me.
Today marks the first day of us battling diabetes with better equipment and I am looking forward to finally have an upper hand.
This morning at work, I decided that I had enough of this damn disease. My daughter can't even trick-or-treat without her blood sugars dropping to 40. We walk a short route (to prevent getting too much candy) and didn't even make it half way before we had to stop and load Micheala up with sugar. I ended up carrying her the rest of the way. Happy Halloween Micheala. Sure is a lot of fun trick-or-treating from your dad's shoulders. Micheala was up a couple times last night because her blood sugars got down to 40 again. At one point she started "hallucinating" and though we had monkeys outside our window. She also was saying that she couldn't move her hands. She was alright, but left us scared because of how low her sugars were...on Halloween of all days.
Sleep deprived, Heather and I continue to fight through our days. We want nothing more than a full 8 hours of sleep, but know that those days are behind us and have been for the past 3 years. We work full time jobs during the day and spend our evenings working the night shifts with Micheala. I am tired of this disease.
It's days like today that I question "why"? What did my daughter do to deserve this? This is when I get stuck in my negative space and start feeling sorry for Micheala and our family. Over the years I have learned to erase the question of "why me" from my thoughts and start asking questions like "what am I going to do to change this"? However, I feel like we are entitled to a day or so in which we grumble and hate the situation that we live in.
Tonight, I am now thinking about how to change the world that Micheala currently lives in. How do I erase the nights like we had tonight and get rid of the insulin supply cabinet that serves as an eye sore in our living room. I dream of those nights in which I can lay my head on my pillow and not worry. I dream of the days when I don't have to call and talk to a family that has been newly diagnosed. I long for the days that the school nurse and us do not have to be best friends based on my daughters disease.
Some of you reading this may have big hopes and dreams for your kids like being successful business men or women, sports stars or even just finding their soul mate and starting a family. My dream is that my kid doesn't have to suffer from this disease anymore. I can't see the future, but I can look into her eyes and see that she is going to be someone special when she gets older, because at the age of 7, she already is someone special.
So for today, I'm telling diabetes to piss off! Tomorrow it's new beginnings...well..kind of...it's more like back to fighting the good fight.
Heather and I have made the decision to switch Micheala's insulin pump. After doing some research, we found an insulin pump that will better fit her needs. Her old insulin pump was fine, but we needed more. We needed something to help us better control the roller coaster that is her blood sugars. Our new insulin pump has a built in CGM (Continuous Glucose Monitor). The new feature will alarm us when her blood sugars are getting too high or getting too low. It will even warn us if her blood sugars are starting to rapidly trend up or down. This feature will help us give her insulin or back off on insulin before she either gets too high or bottoms out. Basically takes a lot of the guessing game out of the equation.
Meeting with the pump rep was like starting all over again. We had to learn about the insulin pump, just like when we started the other pump over 3 years ago. Micheala went through the same anxiety with this pump, as she did when starting her other pump. We had to bribe her to put in her new sites and she resisted and cried in fear. Eventually she was brave and allowed us to insert the new pump sites.
Even at 7 years old, I hate to see Micheala scared. I saw a fear in her eyes that I haven't seen in quite awhile. Someone who has been so brave over the past 3 years with her diabetes, was once again scared. She just didn't want to hurt. As parents, we knew that this was the best for her and had to be strong, but tears the size of beach balls coming from her eyes did not make being a Dad very easy for me.
Today marks the first day of us battling diabetes with better equipment and I am looking forward to finally have an upper hand.
This morning at work, I decided that I had enough of this damn disease. My daughter can't even trick-or-treat without her blood sugars dropping to 40. We walk a short route (to prevent getting too much candy) and didn't even make it half way before we had to stop and load Micheala up with sugar. I ended up carrying her the rest of the way. Happy Halloween Micheala. Sure is a lot of fun trick-or-treating from your dad's shoulders. Micheala was up a couple times last night because her blood sugars got down to 40 again. At one point she started "hallucinating" and though we had monkeys outside our window. She also was saying that she couldn't move her hands. She was alright, but left us scared because of how low her sugars were...on Halloween of all days.
Sleep deprived, Heather and I continue to fight through our days. We want nothing more than a full 8 hours of sleep, but know that those days are behind us and have been for the past 3 years. We work full time jobs during the day and spend our evenings working the night shifts with Micheala. I am tired of this disease.
It's days like today that I question "why"? What did my daughter do to deserve this? This is when I get stuck in my negative space and start feeling sorry for Micheala and our family. Over the years I have learned to erase the question of "why me" from my thoughts and start asking questions like "what am I going to do to change this"? However, I feel like we are entitled to a day or so in which we grumble and hate the situation that we live in.
Tonight, I am now thinking about how to change the world that Micheala currently lives in. How do I erase the nights like we had tonight and get rid of the insulin supply cabinet that serves as an eye sore in our living room. I dream of those nights in which I can lay my head on my pillow and not worry. I dream of the days when I don't have to call and talk to a family that has been newly diagnosed. I long for the days that the school nurse and us do not have to be best friends based on my daughters disease.
Some of you reading this may have big hopes and dreams for your kids like being successful business men or women, sports stars or even just finding their soul mate and starting a family. My dream is that my kid doesn't have to suffer from this disease anymore. I can't see the future, but I can look into her eyes and see that she is going to be someone special when she gets older, because at the age of 7, she already is someone special.
So for today, I'm telling diabetes to piss off! Tomorrow it's new beginnings...well..kind of...it's more like back to fighting the good fight.
Tuesday, October 30, 2012
T1D Day and The Irony
November 1st will be a day in which every diabetic in the world will be focused on their blood sugars. 2 reasons for such focus:
1. It is the day after Halloween. Diabetic kids trick-or-treat too! The urge to eat candy is at it's peak. Parents will be trying to manage the intake of candy and kids will be trying to sneak as much as possible. It is a horrible combination that happens at least 2 times a year, Halloween and Easter.
2. November 1st is National T1D day. How ironic.
November is National Diabetes Month and it starts with November 1st being National T1D Day. This day was declared to bring awareness to Type 1 diabetes. A day in which we (JDRF and parents) can raise awareness to this disease that causes so much trouble on days like Halloween.
So what can you do? I simply ask that you share a story with someone about a loved one who lives with T1D. That alone will help raise awareness. If you don't know anyone with T1D, then share our story, we don't mind.
Awareness is something that I never considered to be a part of being involved with JDRF. At the time of our initial involvement, i figured that the staff at JDRF took care of all of the PR involved with JDRF and never really considered it to be part of our fundraising efforts. As a JDRF staff, I now can see how much we rely on everyone to help raise awareness. The more people that talk about T1D, the more educated the community becomes which then leads to more participation.
I ask that you all take a few minutes of your day on Thursday to think about those that live with T1D. Think about the damage control that those diabetics are doing after a night of splurging on candy. Think about the newly diagnosed, those living with diabetes, those losing their battles with diabetes and those that have lost their battles. Let everyone know that it's time to end this disease for good.
1. It is the day after Halloween. Diabetic kids trick-or-treat too! The urge to eat candy is at it's peak. Parents will be trying to manage the intake of candy and kids will be trying to sneak as much as possible. It is a horrible combination that happens at least 2 times a year, Halloween and Easter.
2. November 1st is National T1D day. How ironic.
November is National Diabetes Month and it starts with November 1st being National T1D Day. This day was declared to bring awareness to Type 1 diabetes. A day in which we (JDRF and parents) can raise awareness to this disease that causes so much trouble on days like Halloween.
So what can you do? I simply ask that you share a story with someone about a loved one who lives with T1D. That alone will help raise awareness. If you don't know anyone with T1D, then share our story, we don't mind.
Awareness is something that I never considered to be a part of being involved with JDRF. At the time of our initial involvement, i figured that the staff at JDRF took care of all of the PR involved with JDRF and never really considered it to be part of our fundraising efforts. As a JDRF staff, I now can see how much we rely on everyone to help raise awareness. The more people that talk about T1D, the more educated the community becomes which then leads to more participation.
I ask that you all take a few minutes of your day on Thursday to think about those that live with T1D. Think about the damage control that those diabetics are doing after a night of splurging on candy. Think about the newly diagnosed, those living with diabetes, those losing their battles with diabetes and those that have lost their battles. Let everyone know that it's time to end this disease for good.
Sunday, October 28, 2012
She Still Doesn't Quite Understand
This past Saturday evening, Eastern Iowa JDRF hosted the 10th Annual Promise Gala. An evening packed with silent auction items, live auction items, a dinner, dancing and 500 guests that support our organization. This is the 3rd year that I have attended this event, but the first year that I have actually "worked" the event as a staff member. The Gala surpassed our projected expectations and was a very inspirational and successful evening. With all of the success and the "high" from the event, I find myself thinking about something else on this Sunday evening.
As much as we all wished it would, the Promise Gala doesn't just happen. It takes 364 days of planning and 1 day of execution. Our Gala committee and staff work on planning and preparing for this event beyond anyones' imagination. Without their hard work and dedication...this event doesn't happen. With that being said, "Gala Week" (as we call it in the office) is pretty much a week in which your personal life takes a back seat and Gala becomes priority. Being involved with the Gala, this is understood and not questioned by anyone because we all have the same purpose in mind....funding a cure for T1D.
Thursday night before the Gala, I found myself in the hallway with my co-workers, preparing bidding cards, programs and so on. Before we knew it, the clock said 7pm and I had to make a quick run to Taco Bell to get food for our staff so we could have a very short dinner break. At 8:30pm, we all hit a wall and decided that 12 hours on this day was enough. Exhausted mentally and not so much physically, we knew that we needed to pace ourselves for what still was ahead of us. I arrived home and my kids were in bed.
Friday was another long day. We, with the help of many volunteers, moved all of the auction items, props and other needed things to the Marriott Hotel. Once there, it was time to start setting up and getting things in place. Dinner with my co-workers once again and getting home in time to see my kids off to bed. I was fortunate on Friday night to have a 20 minute conversation with my wife; the first time I had talked to her in 2 days.
Saturday morning had me up at 6am and headed to the hotel to set up for the evening event. I had to miss Dylanne's soccer game even though the other team failed to show up. I didn't watch the Iowa football game with my wife, which is something we always do and I didn't have the weekend to play around with Micheala. I didn't see my kids on Saturday.
I wouldn't change a single thing mentioned above. I made a promise to Micheala.
I knew what I was getting into when I spoke those words ("I will do everything I can until the day that I die to help you become undiabetic") to Micheala in July 2010. I knew that when I accepted the position at Eastern Iowa JDRF that the position would include some weekends and some extended days; the staff was very clear about that from day 1. I knew that starting this crusade back in 2010 that it would require an amazing woman, such as my wife, to be flexible with her wants and needs so that I could work towards making the future of our daughter a little brighter. She does this on a day-to-day basis and is very humble about her very busy schedule. What I didn't prepare for or do, was communicate with my daughters about "What dad is doing and where he is at?"
Once again, a simple question from Micheala made me aware of this void. Micheala asked me tonight if I had any meetings next week. I told her that I did not and asked her why she was asking me about my meetings. She told me that she just thinks that I should be home by supper time. I initially just laughed it off, but then decided to ask her if she understood why I was gone so much last week. As I expected, she knew what I was doing. So I asked her if she knew why I was doing those things and she quickly responded by saying so I could help cure diabetes. It was the end of that conversation, but was invitational to a conversation that will need to be had in the future. I just have to figure out how to have this conversation with her without crying like a baby.
I know what your thinking..She gets it. She knows why you were gone and what you were doing. She even has a concept of why you are doing what you were doing. I guess that my expectations for what a 7 year old can comprehend is just a bit too high or I haven't done a good enough job of communicating my purpose to her.
At the end of the day, whether they be short days or long days, this is about her and her future. This is about eliminating the unpredictable days that she has with her diabetes so that she can extend more focus on achieving her goals and dreams. This is about finding relief for my wife; who spends a majority of her day doing blood sugar damage control. This is about allowing her sister to not worry about Micheala when she has to be admitted into the hospital or even gets the flu. It's personal...very personal.
Passion and disgust is what fuels those that are fighting for a cure for T1D. We have a personal purpose for what we do and that takes center stage as we charge on in this fight. The understanding is that even though our involvement is personal, our victories for our loved ones means victories for those that share this disease.
Although she wanted me at home this past week, I hope that she will someday understand that I was away doing things that will make her future better. I hope she can someday understand that the sacrifices that were made last week will offer much greater rewards for the future. I hope she realizes that her dad was absent because he loves her too much to watch her hurt everyday.
Right now, the $900,000 that the Eastern Iowa walk program earns or even the $300,000+ that was raised Saturday night doesn't calculate in her mind but I have faith that someday it will. It's hard for me to listen to her question my whereabouts and frustrating to know that she still doesn't quite understand. She's 7 years old and knows just about every word to every song that comes on the radio but can't quite put together the significance of my efforts today and her future. I guess I prefer it that way and will have to be patient and prepared for that day when she does finally put it all together. Until that day, I need to remember and have faith that I am doing what I am suppose to be doing.
Victory does not come without making sacrifices along the way.
As much as we all wished it would, the Promise Gala doesn't just happen. It takes 364 days of planning and 1 day of execution. Our Gala committee and staff work on planning and preparing for this event beyond anyones' imagination. Without their hard work and dedication...this event doesn't happen. With that being said, "Gala Week" (as we call it in the office) is pretty much a week in which your personal life takes a back seat and Gala becomes priority. Being involved with the Gala, this is understood and not questioned by anyone because we all have the same purpose in mind....funding a cure for T1D.
Thursday night before the Gala, I found myself in the hallway with my co-workers, preparing bidding cards, programs and so on. Before we knew it, the clock said 7pm and I had to make a quick run to Taco Bell to get food for our staff so we could have a very short dinner break. At 8:30pm, we all hit a wall and decided that 12 hours on this day was enough. Exhausted mentally and not so much physically, we knew that we needed to pace ourselves for what still was ahead of us. I arrived home and my kids were in bed.
Friday was another long day. We, with the help of many volunteers, moved all of the auction items, props and other needed things to the Marriott Hotel. Once there, it was time to start setting up and getting things in place. Dinner with my co-workers once again and getting home in time to see my kids off to bed. I was fortunate on Friday night to have a 20 minute conversation with my wife; the first time I had talked to her in 2 days.
Saturday morning had me up at 6am and headed to the hotel to set up for the evening event. I had to miss Dylanne's soccer game even though the other team failed to show up. I didn't watch the Iowa football game with my wife, which is something we always do and I didn't have the weekend to play around with Micheala. I didn't see my kids on Saturday.
I wouldn't change a single thing mentioned above. I made a promise to Micheala.
I knew what I was getting into when I spoke those words ("I will do everything I can until the day that I die to help you become undiabetic") to Micheala in July 2010. I knew that when I accepted the position at Eastern Iowa JDRF that the position would include some weekends and some extended days; the staff was very clear about that from day 1. I knew that starting this crusade back in 2010 that it would require an amazing woman, such as my wife, to be flexible with her wants and needs so that I could work towards making the future of our daughter a little brighter. She does this on a day-to-day basis and is very humble about her very busy schedule. What I didn't prepare for or do, was communicate with my daughters about "What dad is doing and where he is at?"
Once again, a simple question from Micheala made me aware of this void. Micheala asked me tonight if I had any meetings next week. I told her that I did not and asked her why she was asking me about my meetings. She told me that she just thinks that I should be home by supper time. I initially just laughed it off, but then decided to ask her if she understood why I was gone so much last week. As I expected, she knew what I was doing. So I asked her if she knew why I was doing those things and she quickly responded by saying so I could help cure diabetes. It was the end of that conversation, but was invitational to a conversation that will need to be had in the future. I just have to figure out how to have this conversation with her without crying like a baby.
I know what your thinking..She gets it. She knows why you were gone and what you were doing. She even has a concept of why you are doing what you were doing. I guess that my expectations for what a 7 year old can comprehend is just a bit too high or I haven't done a good enough job of communicating my purpose to her.
At the end of the day, whether they be short days or long days, this is about her and her future. This is about eliminating the unpredictable days that she has with her diabetes so that she can extend more focus on achieving her goals and dreams. This is about finding relief for my wife; who spends a majority of her day doing blood sugar damage control. This is about allowing her sister to not worry about Micheala when she has to be admitted into the hospital or even gets the flu. It's personal...very personal.
Passion and disgust is what fuels those that are fighting for a cure for T1D. We have a personal purpose for what we do and that takes center stage as we charge on in this fight. The understanding is that even though our involvement is personal, our victories for our loved ones means victories for those that share this disease.
Although she wanted me at home this past week, I hope that she will someday understand that I was away doing things that will make her future better. I hope she can someday understand that the sacrifices that were made last week will offer much greater rewards for the future. I hope she realizes that her dad was absent because he loves her too much to watch her hurt everyday.
Right now, the $900,000 that the Eastern Iowa walk program earns or even the $300,000+ that was raised Saturday night doesn't calculate in her mind but I have faith that someday it will. It's hard for me to listen to her question my whereabouts and frustrating to know that she still doesn't quite understand. She's 7 years old and knows just about every word to every song that comes on the radio but can't quite put together the significance of my efforts today and her future. I guess I prefer it that way and will have to be patient and prepared for that day when she does finally put it all together. Until that day, I need to remember and have faith that I am doing what I am suppose to be doing.
Victory does not come without making sacrifices along the way.
Monday, October 15, 2012
Keeping The Dreams Alive
Today...I count my blessings for the opportunity that I have to be part of history.
3 years ago, when we decided to get involved with JDRF, I had no idea what we (our family) were getting involved in. We honestly got involved with JDRF to give Micheala the opportunity to be around other children with T1D. We were no strangers to diabetes, as I had lived with it for 17 years at that point, and we somewhat went into Micheala's T1D with knowledge of how to "manage" the disease. Our involvement started simply for the social side of what was offered by JDRF. My oh my, what 3 years, a full heart and an open mind can do for one's perspective.
It's no secret that we are JDRF! I know that others may get tired of my constant mention of JDRF and what our family is doing to try and create T1D free futures for those with this disease. I have learned to shut those people out as my daughter's future and the future of those friends that I have made through JDRF are far too important to me to care about what others may say behind my back. I have been told, through the grapevine, that my efforts are pointless as there will never be a cure. I ask those people to look at the same little girl that I do every night and tell that to her. It's no secret that people have gotten tired of watching us succeed in our fundraising efforts. I don't blame that on people being cold hearted about raising money for the cure, I believe that they just don't like to see others succeed. i am fine with that as well. Being humble is something that I struggle with because I am proud of what my family and dedicated committee of Pump Princess team members achieve. I celebrate because I need to celebrate. There is a lot of hard work that goes in to what we do, anyone associated with Team Pump Princess knows this....it doesn't come without stress, elbow grease and time commitment. I need to stop...I am not here tonight to talk about the negative or defend what we do and how we do it.
After 3 years, we have embraced the opportunity that JDRF has offered us. The opportunity to be part of history.
There is going to be a cure for T1D. It is just a matter of time. Being part of the staff at JDRF and having access to all of the research updates, i get excited because I am reading about all of the advancements made in research to cure, prevent and treat T1D. I believe that when my girls decided to start their own families that diabetes will not be a concern. I am excited to think about the possibility of someday wearing an artificial pancreas as the technology of making this a reality is advancing everyday.
We are going to be in the history books. Everyone who makes the commitment to donate, volunteer or assist JDRF in anyway is going to be remembered as being part of the cure. I am not sure about all of you, but an opportunity to be part of something so special is a unique lifetime opportunity....so why not embrace it?
The issue with T1D is that we appear to be healthy to the naked eye. That is not a bad thing, but it does make it more difficult for the outsider to understand or embrace the disease. I could put a diabetic in a classroom full of kids their age and it would be difficult to pick the diabetic out (unless their pump was visible). It's not just kids that deal with T1D. These kids eventually grow up and become adults with T1D. in a conversation the other night I was having with a parent of a T1D, the parent mention to me that her daughter is "graduating from JDRF" because she was turning 15 and getting too old for JDRF. My challenge as a staff member is to keep this young girl's involvement with JDRF because T1D doesn't go away at a certain age. She has come so far and done so much through JDRF, I would hate for her to feel or even think that she has reached an age in which JDRF can no longer assist her.
It's not easy to ask someone to donate to a cause that is working to cure a disease that they cannot see. We, the T1D community, all have our stories that we tell about the day-to-day struggles that we have with T1D and that helps, but I really dream of people embracing the opportunity to be part of history. Be part of something that we will only read about in the history books. I believe this..I have no reason not too.
It's easy to turn and look the other way. Not everyone feels called upon to dedicate their lives to a mission to cure T1D, I understand that. But...
What if ten minutes of your life could result in an action that would be remembered for a lifetime and beyond? What if?
What if $10 of your annual earnings was the $10 that assisted in funding a cure for T1D? What if?
I ask these questions because it only takes 10 minutes to donate $10. Not that $10 has to be your maximum donation, I just use that amount to prove that every dollar counts. It really does.
When I was growing up I wanted to be a professional baseball player. I let a disease called T1D give me an excuse to not work hard and pursue my dreams. Allowing myself to fall victim to this disease allowed me to live my life with mediocre expectations and a sense of "I will never accomplish anything worth while because diabetes will always stop me". I spent my childhood playing baseball (which I love and still do), played in high school and a couple years at a division 3 college until I finally gave up. The point is not being a professional baseball player because the odds of making it to the MLB is difficult even for those that work hard at making it. The point is that I gave up on that dream because of a disease that I got, (didn't ask for or cause). How many other T1Ds are there out there that feel the same way? (My dreams will not come true because I have diabetes).
We are in the process of making history and changing history. No more giving up on those things we dream about as kids. No more feeling defeated before we have even stepped foot into the ring. Help us keep the dreams alive...help us change history.
3 years ago, when we decided to get involved with JDRF, I had no idea what we (our family) were getting involved in. We honestly got involved with JDRF to give Micheala the opportunity to be around other children with T1D. We were no strangers to diabetes, as I had lived with it for 17 years at that point, and we somewhat went into Micheala's T1D with knowledge of how to "manage" the disease. Our involvement started simply for the social side of what was offered by JDRF. My oh my, what 3 years, a full heart and an open mind can do for one's perspective.
It's no secret that we are JDRF! I know that others may get tired of my constant mention of JDRF and what our family is doing to try and create T1D free futures for those with this disease. I have learned to shut those people out as my daughter's future and the future of those friends that I have made through JDRF are far too important to me to care about what others may say behind my back. I have been told, through the grapevine, that my efforts are pointless as there will never be a cure. I ask those people to look at the same little girl that I do every night and tell that to her. It's no secret that people have gotten tired of watching us succeed in our fundraising efforts. I don't blame that on people being cold hearted about raising money for the cure, I believe that they just don't like to see others succeed. i am fine with that as well. Being humble is something that I struggle with because I am proud of what my family and dedicated committee of Pump Princess team members achieve. I celebrate because I need to celebrate. There is a lot of hard work that goes in to what we do, anyone associated with Team Pump Princess knows this....it doesn't come without stress, elbow grease and time commitment. I need to stop...I am not here tonight to talk about the negative or defend what we do and how we do it.
After 3 years, we have embraced the opportunity that JDRF has offered us. The opportunity to be part of history.
There is going to be a cure for T1D. It is just a matter of time. Being part of the staff at JDRF and having access to all of the research updates, i get excited because I am reading about all of the advancements made in research to cure, prevent and treat T1D. I believe that when my girls decided to start their own families that diabetes will not be a concern. I am excited to think about the possibility of someday wearing an artificial pancreas as the technology of making this a reality is advancing everyday.
We are going to be in the history books. Everyone who makes the commitment to donate, volunteer or assist JDRF in anyway is going to be remembered as being part of the cure. I am not sure about all of you, but an opportunity to be part of something so special is a unique lifetime opportunity....so why not embrace it?
The issue with T1D is that we appear to be healthy to the naked eye. That is not a bad thing, but it does make it more difficult for the outsider to understand or embrace the disease. I could put a diabetic in a classroom full of kids their age and it would be difficult to pick the diabetic out (unless their pump was visible). It's not just kids that deal with T1D. These kids eventually grow up and become adults with T1D. in a conversation the other night I was having with a parent of a T1D, the parent mention to me that her daughter is "graduating from JDRF" because she was turning 15 and getting too old for JDRF. My challenge as a staff member is to keep this young girl's involvement with JDRF because T1D doesn't go away at a certain age. She has come so far and done so much through JDRF, I would hate for her to feel or even think that she has reached an age in which JDRF can no longer assist her.
It's not easy to ask someone to donate to a cause that is working to cure a disease that they cannot see. We, the T1D community, all have our stories that we tell about the day-to-day struggles that we have with T1D and that helps, but I really dream of people embracing the opportunity to be part of history. Be part of something that we will only read about in the history books. I believe this..I have no reason not too.
It's easy to turn and look the other way. Not everyone feels called upon to dedicate their lives to a mission to cure T1D, I understand that. But...
What if ten minutes of your life could result in an action that would be remembered for a lifetime and beyond? What if?
What if $10 of your annual earnings was the $10 that assisted in funding a cure for T1D? What if?
I ask these questions because it only takes 10 minutes to donate $10. Not that $10 has to be your maximum donation, I just use that amount to prove that every dollar counts. It really does.
When I was growing up I wanted to be a professional baseball player. I let a disease called T1D give me an excuse to not work hard and pursue my dreams. Allowing myself to fall victim to this disease allowed me to live my life with mediocre expectations and a sense of "I will never accomplish anything worth while because diabetes will always stop me". I spent my childhood playing baseball (which I love and still do), played in high school and a couple years at a division 3 college until I finally gave up. The point is not being a professional baseball player because the odds of making it to the MLB is difficult even for those that work hard at making it. The point is that I gave up on that dream because of a disease that I got, (didn't ask for or cause). How many other T1Ds are there out there that feel the same way? (My dreams will not come true because I have diabetes).
We are in the process of making history and changing history. No more giving up on those things we dream about as kids. No more feeling defeated before we have even stepped foot into the ring. Help us keep the dreams alive...help us change history.
Tuesday, October 9, 2012
6 for 6...Time To Swat The Fly
This month......we are 6 for 6. The month being October. The "we" being Eastern Iowa JDRF. The first 6 is the number of days our office has been open this month. The other 6 is the number of new type 1 diabetes diagnosis that have reached my desk. That's right, one new diagnosis for every day that our office has been open this month.
In most cases, 6 for 6 is a good thing. It means your operating at 100%, but in this case it is just a sad statistic in the rapidly rising number of T1D cases in the Eastern Iowa area. It is out of control and there is nothing that we can do to stop it. Or is there?
JDRF is asking the question, "Who is your reason to walk?" A few years ago, you may not have been able to answer this question. Today, with the rising number of new diagnosis, it is almost impossible to find someone without a direct connection to T1D. So who is your reason to walk?
Followers of this blog know our reason to walk. She is a cute little girl that smiles at you and makes it impossible to tell her "No". It is an innocent little girl that had her life altered at the precious age of 4. It is a little girl who learned about carbs and insulin before she learned to do simple addition and subtraction. It is a little girl who cries when we tell her that she can't have the same treats as her friends and is disappointed when she has to stop playing because her blood sugar is too low. This little girl is our Pump Princess....also know as Micheala.
I like to think of T1D as that annoying house fly in your house. It just hangs around, buzzing by your face and eventually landing on your cheek. You swat at the fly to get rid of it, but it never seems as if you are quick enough to swat it away for good. It flies away for a moment, only to land on your face again. Once again you swat, but can only claim victory for a moment. The process repeats. You look for other means to get rid of the fly. A fly swatter perhaps, but there is not one within your reach. So there you sit, feeling defeated, as this fly continues pester and interfere with what you are trying to do. A little fly that is capable of altering your mood and interfering with your life.
A crazy metaphor...I know, but think about it. T1D doesn't go away and it bothers the hell out of you. So what is the solution? How do we eliminate the fly?
All problems have a solution and with every solution, there is a call for action. JDRF is funding some of the top researchers in the world to work on three key areas in T1D (cure, treat and prevent). As we all know, money doesn't grow on trees, but it does fuel the existence of our research. As a community with neighbors, children and loved one's living with T1D, it is our call to action to make sure that the current research efforts are funded so that they may continue.
JDRF's Walk to Cure diabetes is the most popular of the JDRF events nationwide. Annually, the Walk to Cure events draw thousand upon thousands of people and raises millions upon millions of dollars for research. Do you know that nationally, 82.5% of all funds raised for and by JDRF goes directly towards research? That is just a testament to how dedicated JDRF is to finding a cure for T1D.
As a JDRF staff member, a T1D and most importantly a parent of a T1D, I ask that you please join forces with your local JDRF chapter and support the efforts in funding a cure for T1D. If you don't have a walk team, I ask that you join one or develop your own walk team. If you have a walk team, I challenge you to set your goal higher this year. If you are a local business owner, I ask that you consider sponsoring the walk. The point being is that everyone has the ability to get involved in some way, shape or form. It's just a question of whether or not you are willing.
As much as I hate to play "what if", I have allow you the opportunity to think, "What if this happen to my loved one?" Nobody wants to think of their loved one being diagnosed with a chronic illness, but wouldn't be comforting to know that during your time of stress that you had a local JDRF chapter there to support you every step of the way?
While the mission is clear at JDRF, the support offered by the local JDRF chapters is often overlooked. In our office, T1D is very personal. We have 3 of us that are T1D's ourselves and 2 of us that are parents of T1D's. I must add that we have 5 people that work for Eastern Iowa JDRF. We know what families are going through and can relate with the stress, anxiety and uncertainty that comes with a new diagnosis. We have all experienced the ups and downs of diabetes and have all reached that peak point of frustration. We have all asked the same questions that you want to ask, especially the "why me" or "why my little child". We've all been angry and we've all cried, but we have all pushed through. We are all now embracing the opportunity to make a difference in our own lives or the lives of our loved ones. We are on a mission because most of us had made PROMISES that we don't intend on breaking.
We are recruiting. Recruiting people to lock arms with the JDRF community and start making a difference. We are looking for people who have that loved one living with diabetes and just are not alright with them spending the rest of their life that way. Please join our team. Statistically, there are new diagnosis happening across the United States right now. When is this going to end? Will you help us find that answer?
In most cases, 6 for 6 is a good thing. It means your operating at 100%, but in this case it is just a sad statistic in the rapidly rising number of T1D cases in the Eastern Iowa area. It is out of control and there is nothing that we can do to stop it. Or is there?
JDRF is asking the question, "Who is your reason to walk?" A few years ago, you may not have been able to answer this question. Today, with the rising number of new diagnosis, it is almost impossible to find someone without a direct connection to T1D. So who is your reason to walk?
Followers of this blog know our reason to walk. She is a cute little girl that smiles at you and makes it impossible to tell her "No". It is an innocent little girl that had her life altered at the precious age of 4. It is a little girl who learned about carbs and insulin before she learned to do simple addition and subtraction. It is a little girl who cries when we tell her that she can't have the same treats as her friends and is disappointed when she has to stop playing because her blood sugar is too low. This little girl is our Pump Princess....also know as Micheala.
I like to think of T1D as that annoying house fly in your house. It just hangs around, buzzing by your face and eventually landing on your cheek. You swat at the fly to get rid of it, but it never seems as if you are quick enough to swat it away for good. It flies away for a moment, only to land on your face again. Once again you swat, but can only claim victory for a moment. The process repeats. You look for other means to get rid of the fly. A fly swatter perhaps, but there is not one within your reach. So there you sit, feeling defeated, as this fly continues pester and interfere with what you are trying to do. A little fly that is capable of altering your mood and interfering with your life.
A crazy metaphor...I know, but think about it. T1D doesn't go away and it bothers the hell out of you. So what is the solution? How do we eliminate the fly?
All problems have a solution and with every solution, there is a call for action. JDRF is funding some of the top researchers in the world to work on three key areas in T1D (cure, treat and prevent). As we all know, money doesn't grow on trees, but it does fuel the existence of our research. As a community with neighbors, children and loved one's living with T1D, it is our call to action to make sure that the current research efforts are funded so that they may continue.
JDRF's Walk to Cure diabetes is the most popular of the JDRF events nationwide. Annually, the Walk to Cure events draw thousand upon thousands of people and raises millions upon millions of dollars for research. Do you know that nationally, 82.5% of all funds raised for and by JDRF goes directly towards research? That is just a testament to how dedicated JDRF is to finding a cure for T1D.
As a JDRF staff member, a T1D and most importantly a parent of a T1D, I ask that you please join forces with your local JDRF chapter and support the efforts in funding a cure for T1D. If you don't have a walk team, I ask that you join one or develop your own walk team. If you have a walk team, I challenge you to set your goal higher this year. If you are a local business owner, I ask that you consider sponsoring the walk. The point being is that everyone has the ability to get involved in some way, shape or form. It's just a question of whether or not you are willing.
As much as I hate to play "what if", I have allow you the opportunity to think, "What if this happen to my loved one?" Nobody wants to think of their loved one being diagnosed with a chronic illness, but wouldn't be comforting to know that during your time of stress that you had a local JDRF chapter there to support you every step of the way?
While the mission is clear at JDRF, the support offered by the local JDRF chapters is often overlooked. In our office, T1D is very personal. We have 3 of us that are T1D's ourselves and 2 of us that are parents of T1D's. I must add that we have 5 people that work for Eastern Iowa JDRF. We know what families are going through and can relate with the stress, anxiety and uncertainty that comes with a new diagnosis. We have all experienced the ups and downs of diabetes and have all reached that peak point of frustration. We have all asked the same questions that you want to ask, especially the "why me" or "why my little child". We've all been angry and we've all cried, but we have all pushed through. We are all now embracing the opportunity to make a difference in our own lives or the lives of our loved ones. We are on a mission because most of us had made PROMISES that we don't intend on breaking.
We are recruiting. Recruiting people to lock arms with the JDRF community and start making a difference. We are looking for people who have that loved one living with diabetes and just are not alright with them spending the rest of their life that way. Please join our team. Statistically, there are new diagnosis happening across the United States right now. When is this going to end? Will you help us find that answer?
Friday, September 14, 2012
T1D Won't Stop Me
With my new job, one of my responsibilities is running the Eastern Iowa JDRF Facebook page. This is actually really fun, because I enjoy interacting with the families and use it as one way to reach all of them. This week, I asked the families to post a picture of their diabetic child participating in one of their 2012 activities. I also asked them to caption the pictures "T1D Won't stop (child's name) from...". I got such an outstanding response, that I decided to take the pictures and place them into a collage.
I wanted to share this with everyone on my blog for a couple reasons. First, I think the project turned out awesome. Secondly, I wanted everyone to see that T1D doesn't have to control or stop our kids from participating in the activities that they love.
It's true that T1D have a "little" extra work and preparation to do during and before the game...but that doesn't slow these kids down. Just like the saying goes.."It takes a little more to make a champion", these kids are all champions.
I also encourage any of you that are not Facebook friends with Eastern Iowa JDRF, to do so immediately. I promise I will accept your request.
Monday, August 27, 2012
What Shape Is Your Quarter?
One of the things that we have tried to do over the last three years is turn all of our bad situations into something positive. You know....find the "good" in every situation. It just seemed like everytime something took a turn for the worst in our family, we got flooded with the cliches. "God wouldn't give you something you guys couldn't handle" or 'You guys are strong and have each other, so you'll work through it". The people that said those things to us had nothing but good intentions, and it meant the world to us. However, we had come to realize that those things don't come true without us first, believing in what they were saying and second, us changing the way we viewed each and every situation.
I realize that everyone that reads this blog doesn't deal with diabetes like we do, meaning 50% of our family is diabetic. I realize that in regards to health, some of you have been blessed to have a healthy life and family, which is fantastic. I realize that some of you are exactly like us. When it seems like things are smooth sailing, you get hit with a sucker punch that knocks you down and you're not sure you can ever get back up. So for everyone, I wanted to share the philosophy of the quarter. I will often refer back to this philosophy, something I learned in college, to change my views and feelings on certain situations that I face. Let me explain....
It starts by digging in your pocket and pulling out a quarter. If you don't have a quarter, borrow one from a friend. Take that quarter and lay it flat on the table. Now stand directly above the quarter and look down at it. What shape is the quarter? It's a perfect circle.
Now, leave the quarter where it is at, and step back about 3-5 feet. Look at the quarter. What shape is the quarter now? If done right, it should be more of an oval shape.
Perspective. If you ask anyone to tell you what the shape of a quarter is, they are going to say that it is a circle. It's just common knowledge right? Getting into a bit of philosophy for a bit, is a quarter really a circle in shape? From one angle...yes it is. But once we step back and take a different angel, the quarter appears to take a different shape....an oval.
What if we substituted the quarter with whatever problems or issues we were dealing with in life? I will use our situation and walk through or process.
Our quarter was Micheala being diagnosed with Type 1 diabetes on May 10, 2009. We stood directly above our quarter. We didn't like the shape of our quarter. It was defeating, filled with hopelessness, sadness, guilt, pity and tension. We stood above our quarter and it changed the shape of our family in a way that caused heartache and depression.
One day, unhappy with our perspective or the shape of our quarter, we decided to step back and get a different perspective. Our quarter needed a new shape. What we previously viewed as negative, now turned into something positive. With our new perspective we saw opportunity. We saw the opportunity to make a difference. The opportunity to meet new people and help them. The opportunity to start doing something positive and leave a legacy. The opportunity to change our world and the world of those who were viewing their quarters like we once did.
Don't get me wrong, diabetes still sucks and we sometimes find ourselves standing directly above that quarter. We have to remind ourselves to take a deep breather and step back from the quarter so we can again gain that perspective that we so desire.
The moral of the night is to try and change your perspective. If there is something in this world that you don't like...it's up to you to change it. It starts with how you look at it. I could easily spend the rest of my life feeling sorry for myself and all of the things that have happened to us. I would be miserable, plus I know that there are people in this world that deal with much worse. I want to see the good in every situation.
If you have a situation that is not good right now...try changing your perspective...it may change your life. It has changed ours.
I realize that everyone that reads this blog doesn't deal with diabetes like we do, meaning 50% of our family is diabetic. I realize that in regards to health, some of you have been blessed to have a healthy life and family, which is fantastic. I realize that some of you are exactly like us. When it seems like things are smooth sailing, you get hit with a sucker punch that knocks you down and you're not sure you can ever get back up. So for everyone, I wanted to share the philosophy of the quarter. I will often refer back to this philosophy, something I learned in college, to change my views and feelings on certain situations that I face. Let me explain....
It starts by digging in your pocket and pulling out a quarter. If you don't have a quarter, borrow one from a friend. Take that quarter and lay it flat on the table. Now stand directly above the quarter and look down at it. What shape is the quarter? It's a perfect circle.
Now, leave the quarter where it is at, and step back about 3-5 feet. Look at the quarter. What shape is the quarter now? If done right, it should be more of an oval shape.
Perspective. If you ask anyone to tell you what the shape of a quarter is, they are going to say that it is a circle. It's just common knowledge right? Getting into a bit of philosophy for a bit, is a quarter really a circle in shape? From one angle...yes it is. But once we step back and take a different angel, the quarter appears to take a different shape....an oval.
What if we substituted the quarter with whatever problems or issues we were dealing with in life? I will use our situation and walk through or process.
Our quarter was Micheala being diagnosed with Type 1 diabetes on May 10, 2009. We stood directly above our quarter. We didn't like the shape of our quarter. It was defeating, filled with hopelessness, sadness, guilt, pity and tension. We stood above our quarter and it changed the shape of our family in a way that caused heartache and depression.
One day, unhappy with our perspective or the shape of our quarter, we decided to step back and get a different perspective. Our quarter needed a new shape. What we previously viewed as negative, now turned into something positive. With our new perspective we saw opportunity. We saw the opportunity to make a difference. The opportunity to meet new people and help them. The opportunity to start doing something positive and leave a legacy. The opportunity to change our world and the world of those who were viewing their quarters like we once did.
Don't get me wrong, diabetes still sucks and we sometimes find ourselves standing directly above that quarter. We have to remind ourselves to take a deep breather and step back from the quarter so we can again gain that perspective that we so desire.
The moral of the night is to try and change your perspective. If there is something in this world that you don't like...it's up to you to change it. It starts with how you look at it. I could easily spend the rest of my life feeling sorry for myself and all of the things that have happened to us. I would be miserable, plus I know that there are people in this world that deal with much worse. I want to see the good in every situation.
If you have a situation that is not good right now...try changing your perspective...it may change your life. It has changed ours.
Thursday, August 23, 2012
I Didn't Intend To Make The HR Director Cry...
A few days ago, I got a message at work from one of the corporate HR Directors. It was a message to call her back because JDRF likes welcome all new employees personally. Unfortunately, I was unable to return her message until today. This 10 minute phone conversation was a life changing conversation. It furthered my belief that I am doing what I was meant to be doing and with the best possible organization.
I call the HR Director and was instantly greeted with a great big "Welcome to JDRF". She created instant small talk and asked me how things were going during my first week and a half of the job. f course, i work in a fantastic office, with four of the best and most determined co-workers possible, so it was easy to answer that all was well. Then she asked me the question. The question in which she was not prepared for the answer. She asked me, "Why JDRF?"
I told her that I would have to take her back 3 years. 3 years ago, our lives changed forever. I told her our story. I started with my 17 year battle with diabetes and having no knowledge of JDRF. Then the diagnosis of Micheala and having JDRF enter our lives.
I went into detail about how as a parent, it wasn't okay to just sit on the sidelines and watch my 4 year old daughter start this life long battle. I felt the need to do something to change her future, so our family decided to get involved with JDRF. I told her that my daughter, at 4 years old, asked me if she was ever going to be undiabetic, and how I could only promise her that I would do everything that I could to make it go away some day. I told her about the various struggles with her and her blood sugars and how it has completely changed our family. I told her that we have raised over $34,000 as a family team in the past 3 years, but feel that we have not done enough. Finally, I told her that every night, I have to look into my daughters eyes and answer one question....Did I do everything I could today to make her tomorrow a little bit better?
I finished.......and it was quiet for a minute. I then heard a bit of sniffling. She tells me that I made her cry. A bit shocked...I quickly apologize. She tells me that it is okay, it just means that JDRF has the right person in the right position.
She then shares a story with me that I will never forget.
She starts telling me about a boy, 11 years old, that spoke in front of Congress during the Type 1 Diabetic Children's Congress. T1D Children's Congress is when delegates (T1D kids) from each state, travel too Washington DC to encourage Congress to keep funding research for T1D.
This boy stood in front of Congress and told them that they needed to keep funding research, but not for him. He explained that he was 11 years old and that he is strong. He wanted them to keep funding research for his 4 year old brother, who he was worried about because he was only 4 and not as strong. This is a story I will never forget. What courage from such a young man.
This HR Director hears these types of stories all of the time. There are numerous JDRF Chapters across the United States, which all have similar stories about kids in their chapters with such courage. Yet, she still is touched by all of them...she still is passionate about the cause.
I sat in my office for a few minutes after that phone call and just had a huge sense of relief....God has put me in the right place.
I didn't intend to make the HR Director cry, but she told me everything I needed to know about JDRF with the shedding of her tears.
What's really great about JDRF is that you do not have to be a staff member to make a huge impact with JDRF. JDRF is fueled by volunteers. Volunteers that are passionate and want to make a difference. If you are wanting to join our fight, I encourage you to contact you local chapter and ask how you can help. You will not be turned away. We love our volunteers and their is always something or someway to help out. Be part of the cure.
I call the HR Director and was instantly greeted with a great big "Welcome to JDRF". She created instant small talk and asked me how things were going during my first week and a half of the job. f course, i work in a fantastic office, with four of the best and most determined co-workers possible, so it was easy to answer that all was well. Then she asked me the question. The question in which she was not prepared for the answer. She asked me, "Why JDRF?"
I told her that I would have to take her back 3 years. 3 years ago, our lives changed forever. I told her our story. I started with my 17 year battle with diabetes and having no knowledge of JDRF. Then the diagnosis of Micheala and having JDRF enter our lives.
I went into detail about how as a parent, it wasn't okay to just sit on the sidelines and watch my 4 year old daughter start this life long battle. I felt the need to do something to change her future, so our family decided to get involved with JDRF. I told her that my daughter, at 4 years old, asked me if she was ever going to be undiabetic, and how I could only promise her that I would do everything that I could to make it go away some day. I told her about the various struggles with her and her blood sugars and how it has completely changed our family. I told her that we have raised over $34,000 as a family team in the past 3 years, but feel that we have not done enough. Finally, I told her that every night, I have to look into my daughters eyes and answer one question....Did I do everything I could today to make her tomorrow a little bit better?
I finished.......and it was quiet for a minute. I then heard a bit of sniffling. She tells me that I made her cry. A bit shocked...I quickly apologize. She tells me that it is okay, it just means that JDRF has the right person in the right position.
She then shares a story with me that I will never forget.
She starts telling me about a boy, 11 years old, that spoke in front of Congress during the Type 1 Diabetic Children's Congress. T1D Children's Congress is when delegates (T1D kids) from each state, travel too Washington DC to encourage Congress to keep funding research for T1D.
This boy stood in front of Congress and told them that they needed to keep funding research, but not for him. He explained that he was 11 years old and that he is strong. He wanted them to keep funding research for his 4 year old brother, who he was worried about because he was only 4 and not as strong. This is a story I will never forget. What courage from such a young man.
This HR Director hears these types of stories all of the time. There are numerous JDRF Chapters across the United States, which all have similar stories about kids in their chapters with such courage. Yet, she still is touched by all of them...she still is passionate about the cause.
I sat in my office for a few minutes after that phone call and just had a huge sense of relief....God has put me in the right place.
I didn't intend to make the HR Director cry, but she told me everything I needed to know about JDRF with the shedding of her tears.
What's really great about JDRF is that you do not have to be a staff member to make a huge impact with JDRF. JDRF is fueled by volunteers. Volunteers that are passionate and want to make a difference. If you are wanting to join our fight, I encourage you to contact you local chapter and ask how you can help. You will not be turned away. We love our volunteers and their is always something or someway to help out. Be part of the cure.
Wednesday, August 22, 2012
My Kid Comes With A Kit And Instruction Manual
Tonight's blog comes out of humor, but for some readers, has a lot of not so funny truths. As parents of diabetic children, we have adapted to the little "extras" that we have to do on a daily basis and have since just considered it to be normal. As you break it down, there are a lot of things that we do that sometimes leads to much of our stress and frustration, yet we continue to do them. We do them to protect our kids and because we know that as f right now, there is no other choice.
Back to school is always a fun time of the year for us diabetic parents. It seems like when we just start to get comfortable with our kid's classroom teacher, the school year ends. Now we get to stress all summer about who our kid's next school year teacher is going to be and wonder if this person will pass the initial 5 minute meet and greet test, in which we as parents pre-judge whether we think the teacher is worthy enough to have a diabetic child in their classroom....nonetheless, our child. i know it sounds foolish, but we all do this....feel the teacher out during the initial meeting. "Have you ever had a diabetic child before" and "what do you know about type 1 diabetes" are questions that I ask, and yes teachers...you are being graded.
Then you schedule a separate meeting with the teachers and the school nurse. We are fortunate that our school nurse is a rock star and so far, we have been fortunate to have very good teachers. The meeting is focused around educating the teacher on how to take care of your child. The "what ifs" and basically walking through how to handle every situation and run every feature on your kid's insulin pump. Very important part of your child's education is making sure that they have the capacity to learn and that it's not being interrupted with uncontrolled blood sugars or pump malfunctions. In other words, if the people who are teaching my daughter cannot be students of diabetes care, then my daughter misses out on her educational opportunity. Seems harsh...truth sucks.
With our kids now spending 8 hours out of the day in the care of someone else, it is almost impossible to not have them on your mind. You find yourself making every means of communication available to you throughout the day. Meetings don't happen without a cell phone on vibrate. Email is always open on the desk and you co-workers know that when certain people call the office, you are interrupted no matter who you are meting with on what you are doing.
The school year also brings more opportunity for weekend sleep overs. We have exercised "Not this time" more than what we should, but we also have been denied some invites do to the hesitancy of some parents knowing that our kid is diabetic. I don't fault them, they are nervous. It is a big responsibility to take on. The only overnight that our kid has been on is when she stayed with a friend 2 blocks down the road. Needless to say, we didn't leave our house that night.
There have been many times when heather and I have said no to plans with friends and even taking off by ourselves do to the anxiety that we feel when we are not around our diabetic. We have a hard time getting over the feeling that no one will take good enough care of our kid while we are gone. The times we do have alone are often cut short because we feel the need to get her back into our care, and simply have a hard time enjoying ourselves with the extra anxiety.
We have been going through a "step" process to try and free us of our self imposed anxiety. We have created a "How To" laminated sheet to leave with the ones caring for our child, we have gone through the care directions time and time again, we have taught our child to operate her own pump and we have tried to increase our time away from her little by little. We are getting there.
I joke that our kid comes with a kit and instruction manual....but she does. We have a bag that we carry that is full of extras of all her supplies, emergency shots and glucose tablets. We try to make this bag as small as possible, so it doesn't seem like we are lugging a suitcase around all of the time, but the bag still is the size of a large purse. It's easy to spot a diabetic family if you know what to look for....look for the family that's always carrying the extra bag.
Patience is often exercised during this time of explanation. What is so easy for the diabetic family to understand, is often not so easily understood by the non-diabetic caretakers. I used to get frustrated when people would insist that my daughters type 1 diabetes could just be controlled by diet. That's when I have to break out the science talk and explain the difference between type 1 and type 2 diabetes.
All in all, we have been diabetic long enough that we can laugh at some of these things now, but early on, struggled with having patience. I just started listening to what I was telling my diabetic child, "You are so special that you come with a kit and special instructions", and that seem to make things a bit easier to handle.
To all of the diabetic families out there, my prayers are with you and your diabetic children as they start the new school year. Remember that the Schrock family is always here for support.
Back to school is always a fun time of the year for us diabetic parents. It seems like when we just start to get comfortable with our kid's classroom teacher, the school year ends. Now we get to stress all summer about who our kid's next school year teacher is going to be and wonder if this person will pass the initial 5 minute meet and greet test, in which we as parents pre-judge whether we think the teacher is worthy enough to have a diabetic child in their classroom....nonetheless, our child. i know it sounds foolish, but we all do this....feel the teacher out during the initial meeting. "Have you ever had a diabetic child before" and "what do you know about type 1 diabetes" are questions that I ask, and yes teachers...you are being graded.
Then you schedule a separate meeting with the teachers and the school nurse. We are fortunate that our school nurse is a rock star and so far, we have been fortunate to have very good teachers. The meeting is focused around educating the teacher on how to take care of your child. The "what ifs" and basically walking through how to handle every situation and run every feature on your kid's insulin pump. Very important part of your child's education is making sure that they have the capacity to learn and that it's not being interrupted with uncontrolled blood sugars or pump malfunctions. In other words, if the people who are teaching my daughter cannot be students of diabetes care, then my daughter misses out on her educational opportunity. Seems harsh...truth sucks.
With our kids now spending 8 hours out of the day in the care of someone else, it is almost impossible to not have them on your mind. You find yourself making every means of communication available to you throughout the day. Meetings don't happen without a cell phone on vibrate. Email is always open on the desk and you co-workers know that when certain people call the office, you are interrupted no matter who you are meting with on what you are doing.
The school year also brings more opportunity for weekend sleep overs. We have exercised "Not this time" more than what we should, but we also have been denied some invites do to the hesitancy of some parents knowing that our kid is diabetic. I don't fault them, they are nervous. It is a big responsibility to take on. The only overnight that our kid has been on is when she stayed with a friend 2 blocks down the road. Needless to say, we didn't leave our house that night.
There have been many times when heather and I have said no to plans with friends and even taking off by ourselves do to the anxiety that we feel when we are not around our diabetic. We have a hard time getting over the feeling that no one will take good enough care of our kid while we are gone. The times we do have alone are often cut short because we feel the need to get her back into our care, and simply have a hard time enjoying ourselves with the extra anxiety.
We have been going through a "step" process to try and free us of our self imposed anxiety. We have created a "How To" laminated sheet to leave with the ones caring for our child, we have gone through the care directions time and time again, we have taught our child to operate her own pump and we have tried to increase our time away from her little by little. We are getting there.
I joke that our kid comes with a kit and instruction manual....but she does. We have a bag that we carry that is full of extras of all her supplies, emergency shots and glucose tablets. We try to make this bag as small as possible, so it doesn't seem like we are lugging a suitcase around all of the time, but the bag still is the size of a large purse. It's easy to spot a diabetic family if you know what to look for....look for the family that's always carrying the extra bag.
Patience is often exercised during this time of explanation. What is so easy for the diabetic family to understand, is often not so easily understood by the non-diabetic caretakers. I used to get frustrated when people would insist that my daughters type 1 diabetes could just be controlled by diet. That's when I have to break out the science talk and explain the difference between type 1 and type 2 diabetes.
All in all, we have been diabetic long enough that we can laugh at some of these things now, but early on, struggled with having patience. I just started listening to what I was telling my diabetic child, "You are so special that you come with a kit and special instructions", and that seem to make things a bit easier to handle.
To all of the diabetic families out there, my prayers are with you and your diabetic children as they start the new school year. Remember that the Schrock family is always here for support.
Monday, August 20, 2012
Lives Were Changed This Weekend......
I am going to write this blog in two parts tonight. The first part will be short, but important, as I write from the perspective of a staff member at Eastern Iowa JDRF. The second part will be written from the perspective that I've been in since the beginning of this blog; a type 1 diabetic and the father of a type 1 diabetic.
Tonight's blog is about this past weekend and my reactions to what I witnessed and experienced.
As most of you know, this weekend our family was in LaCrosse, Wisconsin for the JDRF Ride to Cure event. Heather made the commitment months ago to participate in this century ride and as a family, we wanted to be there to support her. Little did I know, that I would be a week into my job as Development Coordinator at Eastern Iowa JDRF, so I had to wear a couple hats this weekend.
As a JDRF staff member, I spent most of the weekend soaking it all in. Listening in to conversations had between riders on "why" they were riding this weekend. I watched both the riders and the support crew. I watched the youth ambassadors and the friends and family of the riders. I was not even close to prepared for what I was a part of this weekend. I would like to share a few of those observations, but know that I can never recapture these moments through words.
I stood with my two girls at the finish line. Throughout the day, I gt text messages from Heather, letting me know where she was at in her journey. So as I anxiously waited for her to come across that finish line, I watched others complete their journey. The first encounter that struck me was when a gentleman crossed the finish line around 2pm. I have no idea who this guy was, but I knew he was riding with a pretty heavy heart. He crossed the finished line, was handed his medal and was quickly greeted by his son (who was around 14 or 15) and his wife. Not far behind them, a little girl came running towards him with a sign that read "My Dad Is My Hero". The gentleman quickly turned his focus to her and embraced her with a huge hug and kiss. It was an emotional embrace that lasted a good three minutes. The gentleman, wearing sunglasses, I could tell was holding back tears. He then got off his bike, noticed her sign, and again embraced her for a few minutes. Then, as a family, they walked away from the finish line.
"My Dad Is My Hero". What an incredible statement.
Shortly after this moment, I noticed another wave of cyclists coming towards the finish line. I noticed that one of the cyclists had pulled over about 50 yards away from the finish line. I thought to myself, "What happened?" That's when I noticed that the cyclists had spotted his youth ambassador and had waved for him to come over to him. The youth ambassador was a five year old little boy. The boy ran to the cyclists with a lot of excitement. The cyclists then lifted the boy on to his bike seat and pushed him the remaining 50 yards across the finish line. A sort of symbolism that states that "we are in this together". He also put his medal around the boys head for a keep sake.
Finally, around the corner, came Heather. Riding with her Super Taylor cape on, pictures of our family plastered all over her bike, our names written on her legs and arms with fancy hot pink tape on her helmet. She did it! She crossed the finish line. A victory for her, a victory for Taylor, a victory for Micheala, a victory for Dylanne and a victory for me. She was met by Micheala first, who gave her a giant hug. Then Dylanne met her with a little gift we had purchased for her earlier in the day. Then it was my turn.
I hugged her like I had never hugged her before.
What this meant for me was that my wife was 100% behind my purpose and vision in life. Matter of fact, it was no longer my purpose and vision...it was now our purpose and vision. She embraced the pain fr the purpose to make our lives better...to fund a cure for juvenile diabetes.
This weekend was the biggest JDRF Ride To Cure to date with over 420 registered riders. Before the start of the ride on Saturday morning, over a million dollars had already been raised. It was awesome to be a witness to so much support. It was awesome to walk through the parking lot and see all kinds of ride to cure stickers on the cars of the riders. It was neat to learn that riders from as far as New York had come to ride. The entire weekend was a complete victory.
Sunday morning, at breakfast, I heard a heartbreaking conversation from a young type 1 diabetic rider and a few strangers he was sitting with at his table. He was being counseled by those strangers because he was upset with himself. Upset that he was unable to finish the 100 ride. he had to cut his ride short because his diabetes was acting up on him. His blood sugars got to high during the ride and he was spilling keytones, preventing him from going on. The strangers were full of encouragement, telling him that he will finish next year.
It was that type of atmosphere all weekend.
I explained to our girls on Saturday morning, after their mom left the starting line, that this was our summer vacation and it was focused around helping others and giving back. They didn't seem to mind much, as I think they understand what we are trying to do as a family.
This was the best weekend of my summer. I was inspired, moved, humbled and very emotional. I watched a group of strangers come together for a cause. I watched my wife claim victory over her goal and I sensed a giant step towards a cure for type 1 diabetes.
Thank you to everyone who followed us this weekend on facebook. Your encouragement meant the world to us. Thank you to all of the riders that took their time away from their everyday lives to help us fund a cure for type 1 diabetes. Thanks to everyone who volunteered this weekend.
Lives were changed this weekend.....
Tonight's blog is about this past weekend and my reactions to what I witnessed and experienced.
As most of you know, this weekend our family was in LaCrosse, Wisconsin for the JDRF Ride to Cure event. Heather made the commitment months ago to participate in this century ride and as a family, we wanted to be there to support her. Little did I know, that I would be a week into my job as Development Coordinator at Eastern Iowa JDRF, so I had to wear a couple hats this weekend.
As a JDRF staff member, I spent most of the weekend soaking it all in. Listening in to conversations had between riders on "why" they were riding this weekend. I watched both the riders and the support crew. I watched the youth ambassadors and the friends and family of the riders. I was not even close to prepared for what I was a part of this weekend. I would like to share a few of those observations, but know that I can never recapture these moments through words.
I stood with my two girls at the finish line. Throughout the day, I gt text messages from Heather, letting me know where she was at in her journey. So as I anxiously waited for her to come across that finish line, I watched others complete their journey. The first encounter that struck me was when a gentleman crossed the finish line around 2pm. I have no idea who this guy was, but I knew he was riding with a pretty heavy heart. He crossed the finished line, was handed his medal and was quickly greeted by his son (who was around 14 or 15) and his wife. Not far behind them, a little girl came running towards him with a sign that read "My Dad Is My Hero". The gentleman quickly turned his focus to her and embraced her with a huge hug and kiss. It was an emotional embrace that lasted a good three minutes. The gentleman, wearing sunglasses, I could tell was holding back tears. He then got off his bike, noticed her sign, and again embraced her for a few minutes. Then, as a family, they walked away from the finish line.
"My Dad Is My Hero". What an incredible statement.
Shortly after this moment, I noticed another wave of cyclists coming towards the finish line. I noticed that one of the cyclists had pulled over about 50 yards away from the finish line. I thought to myself, "What happened?" That's when I noticed that the cyclists had spotted his youth ambassador and had waved for him to come over to him. The youth ambassador was a five year old little boy. The boy ran to the cyclists with a lot of excitement. The cyclists then lifted the boy on to his bike seat and pushed him the remaining 50 yards across the finish line. A sort of symbolism that states that "we are in this together". He also put his medal around the boys head for a keep sake.
Finally, around the corner, came Heather. Riding with her Super Taylor cape on, pictures of our family plastered all over her bike, our names written on her legs and arms with fancy hot pink tape on her helmet. She did it! She crossed the finish line. A victory for her, a victory for Taylor, a victory for Micheala, a victory for Dylanne and a victory for me. She was met by Micheala first, who gave her a giant hug. Then Dylanne met her with a little gift we had purchased for her earlier in the day. Then it was my turn.
I hugged her like I had never hugged her before.
What this meant for me was that my wife was 100% behind my purpose and vision in life. Matter of fact, it was no longer my purpose and vision...it was now our purpose and vision. She embraced the pain fr the purpose to make our lives better...to fund a cure for juvenile diabetes.
This weekend was the biggest JDRF Ride To Cure to date with over 420 registered riders. Before the start of the ride on Saturday morning, over a million dollars had already been raised. It was awesome to be a witness to so much support. It was awesome to walk through the parking lot and see all kinds of ride to cure stickers on the cars of the riders. It was neat to learn that riders from as far as New York had come to ride. The entire weekend was a complete victory.
Sunday morning, at breakfast, I heard a heartbreaking conversation from a young type 1 diabetic rider and a few strangers he was sitting with at his table. He was being counseled by those strangers because he was upset with himself. Upset that he was unable to finish the 100 ride. he had to cut his ride short because his diabetes was acting up on him. His blood sugars got to high during the ride and he was spilling keytones, preventing him from going on. The strangers were full of encouragement, telling him that he will finish next year.
It was that type of atmosphere all weekend.
I explained to our girls on Saturday morning, after their mom left the starting line, that this was our summer vacation and it was focused around helping others and giving back. They didn't seem to mind much, as I think they understand what we are trying to do as a family.
This was the best weekend of my summer. I was inspired, moved, humbled and very emotional. I watched a group of strangers come together for a cause. I watched my wife claim victory over her goal and I sensed a giant step towards a cure for type 1 diabetes.
Thank you to everyone who followed us this weekend on facebook. Your encouragement meant the world to us. Thank you to all of the riders that took their time away from their everyday lives to help us fund a cure for type 1 diabetes. Thanks to everyone who volunteered this weekend.
Lives were changed this weekend.....
Wednesday, August 8, 2012
I Dig Carly Rae Jepsen
Here's a couple things I have learned about purpose....
1. When your purpose is strong, the "How" is easy.
2. When your purpose is strong, you don't care what others think.
Today, I have been thinking hard about #2 on this list.
I have a fear that I am "in people's face" too much about JDRF and what team Pump Princess is doing to improve the lives of those that live with Type 1 diabetes. Because of this fear, I have, at times, scaled back my efforts. There have been times that I haven't taken advantage of an opportunity to talk with others about our cause. There have been times when I have said no to opportunities to be involved in events to promote what we are doing for JDRF. There have even been times that I have avoided talking about our diabetes when asked by someone. I do this in fear. Fear that people are tired of hearing our story and hearing about what we are doing. Matter of fact, it sounds goofy that I would even do anything like this even as I write this blog, but I have. Guilty as charged.
I almost feel as if I have lied to people when I tell them that I am "all in" when it comes to JDRF. Sure, I volunteer at every opportunity and am involved as much as I can be....but am I really all in? My fear of what others think of me has made me believe that I have not been all in.
So I decided that in order for me to overcome this fear, I have to be open and honest with everyone. I felt a good way to start was by letting people know a few things about me that others my find embarrassing. Why not? Just put it out there...the embarrassing stuff. So here it goes...and please feel free to laugh.
I dig Carly Rae Jepsen's song "Call Me Maybe". When this song comes on in the car, everyone is ordered to be quiet, unless they are singing along with me. I know that there are many people younger than me that find this song annoying...I find it to be a catchy tune, that puts me in a great mood. My girls and I can sing the song line by line, alternating verses and so on. We almost have a full choreographed dance to the song. I know this song is not age appropriate for me, but I like it. It makes me happy.
I own every Justin Beiber CD. Not because my girls wanted them (which they did). Regardless, I have them and listen to them quite a bit. I have Beibs on my ipod playlist. Again, not age appropriate, but something that I like.
Those are just 2 things that I figured would help me get over my fear of what people think of me. I am an emotional person, which those close to me know. Watching others succeed and overcome, especially kids, hit me straight through the heart. Watching Dylanne score her first ever soccer goal, seeing Micheala's first hit in softball, seeing the boys that I coach in baseball achieve everyday and watching my wife complete the 100 mile JDRF Ride to Cure in LaCrosse, Wisconsin on August 18th are all things that get me quite emotional.
I put a lot of thought into my efforts and what more I can do to improve the lives of those with Type 1 diabetes, and realized that I am capable of more if I just would stop being selfish and caring about what others think. Instead of being mute in the shadows, I need to stand and shout on the mountain top. I need to let people know that this is who I am and this is what I stand for...this is my purpose....and it is strong. I need to be transparent.
I am putting my fears aside. Most importantly, I am a type 1 diabetic, my daughter is a type 1 diabetic and I have many friends who are also type 1 diabetics. I believe that they will all be cured someday. This is my purpose and I am now going at this purpose with no more fear.
1. When your purpose is strong, the "How" is easy.
2. When your purpose is strong, you don't care what others think.
Today, I have been thinking hard about #2 on this list.
I have a fear that I am "in people's face" too much about JDRF and what team Pump Princess is doing to improve the lives of those that live with Type 1 diabetes. Because of this fear, I have, at times, scaled back my efforts. There have been times that I haven't taken advantage of an opportunity to talk with others about our cause. There have been times when I have said no to opportunities to be involved in events to promote what we are doing for JDRF. There have even been times that I have avoided talking about our diabetes when asked by someone. I do this in fear. Fear that people are tired of hearing our story and hearing about what we are doing. Matter of fact, it sounds goofy that I would even do anything like this even as I write this blog, but I have. Guilty as charged.
I almost feel as if I have lied to people when I tell them that I am "all in" when it comes to JDRF. Sure, I volunteer at every opportunity and am involved as much as I can be....but am I really all in? My fear of what others think of me has made me believe that I have not been all in.
So I decided that in order for me to overcome this fear, I have to be open and honest with everyone. I felt a good way to start was by letting people know a few things about me that others my find embarrassing. Why not? Just put it out there...the embarrassing stuff. So here it goes...and please feel free to laugh.
I dig Carly Rae Jepsen's song "Call Me Maybe". When this song comes on in the car, everyone is ordered to be quiet, unless they are singing along with me. I know that there are many people younger than me that find this song annoying...I find it to be a catchy tune, that puts me in a great mood. My girls and I can sing the song line by line, alternating verses and so on. We almost have a full choreographed dance to the song. I know this song is not age appropriate for me, but I like it. It makes me happy.
I own every Justin Beiber CD. Not because my girls wanted them (which they did). Regardless, I have them and listen to them quite a bit. I have Beibs on my ipod playlist. Again, not age appropriate, but something that I like.
Those are just 2 things that I figured would help me get over my fear of what people think of me. I am an emotional person, which those close to me know. Watching others succeed and overcome, especially kids, hit me straight through the heart. Watching Dylanne score her first ever soccer goal, seeing Micheala's first hit in softball, seeing the boys that I coach in baseball achieve everyday and watching my wife complete the 100 mile JDRF Ride to Cure in LaCrosse, Wisconsin on August 18th are all things that get me quite emotional.
I put a lot of thought into my efforts and what more I can do to improve the lives of those with Type 1 diabetes, and realized that I am capable of more if I just would stop being selfish and caring about what others think. Instead of being mute in the shadows, I need to stand and shout on the mountain top. I need to let people know that this is who I am and this is what I stand for...this is my purpose....and it is strong. I need to be transparent.
I am putting my fears aside. Most importantly, I am a type 1 diabetic, my daughter is a type 1 diabetic and I have many friends who are also type 1 diabetics. I believe that they will all be cured someday. This is my purpose and I am now going at this purpose with no more fear.
Friday, August 3, 2012
I'm Lazy
So we made the decision to buy Dylanne a cell phone for her 9th birthday. Not a decision I was in favor of and needed a lot of convincing from Heather to actually go through with it. She's had the phone for a couple weeks now and has not "over done" it with the calls or the texting, which is a relief, but I know that in time it will get out of hand. She loves to talk, so it is almost expected to come.
Today, Dylanne called me from a friends house to ask a question, which is why we got her the phone. She ends the call by saying, "Alright Dad...I love you."
I hung up the phone and it hit me. Out of all of the calls that I have gotten from her, I cannot remember one time that she hasn't ended the call with "I love you".
I do reciprocate the I love you with a "I love you too". I had to ask myself, why am I always the one reciprocating the I love yous and not the one initiating them?
As a father of two young girls, these are words that I do not say enough. I know that the tough guy argument is that " I don't tell them I love them, but I show it t them everyday and they know I love them". Do they? Actions speak louder than words? Do they?
I remember laying in a hospital bed 2 days after my 30th birthday. I just had, what they are calling, a heart attack, and was recovering. My kids were 4 and 2 at the time. I remember looking at them and wife as I played the "what if" game. The biggest what if that I struggled with was, if I did not make it, did they know how much I loved them? Did I show them enough and did I tell them enough?
Medical situations are no strangers in our house. God continues to test our family. Even through all of the hard times, the end result has always been a stronger love for one another. After every single thing that happens to our family, especially medical, we always seem to grow closer together, but there has to be a better, less stressful way to achieve this unity.
So why is it so hard to tell someone you love them? More importantly for me, why do I only say it when I think the other person needs to hear it?
It's not that I am some kind of cold hearted bastard. I have a very open heart. We Bought A Zoo makes me tear up for crying out loud. It's not that I am afraid to say the words, because I have said them before. i don't believe that the words can get "watered down". I don't say the words with expectation that they will be reciprocated, although that is good to hear. So that really only leaves one thing.....I'm lazy.
I'm lazy because I don't exercise those words enough. I need to say it more often to those people in my life that I love. I don't want to ever lose a loved one and have regrets that I never told them that I loved them. I definitely don't want my loved ones to every have a day in which they feel like they have no one that loves or cares about them. Finally, I don't want to leave this earth myself without leaving those three words to those that I care about.
So I thought more about it and started thinking about the last time that i told my wife and kids that I loved them; initiated by me. Heather and I celebrate 11 years of marriage tomorrow and I cannot honestly remember the last time that i told her that I loved her first. That's awful. My two girls always tell me they love me, but rarely do they have to say, I love you too Dad.
I write about this tonight because during my purpose of doing everything that I can to improve the lives of kids with Type 1 Diabetes, I am also trying to become a better Dad, husband and over all person. Throughout this journey, I have realized that it starts on in the inside, specifically the heart. Opening my heart up, overcoming my fears and being courageous.
I have a long way to go in both areas but the journey has been fulfilling.
No more being lazy for this guy.
I Love You.
Today, Dylanne called me from a friends house to ask a question, which is why we got her the phone. She ends the call by saying, "Alright Dad...I love you."
I hung up the phone and it hit me. Out of all of the calls that I have gotten from her, I cannot remember one time that she hasn't ended the call with "I love you".
I do reciprocate the I love you with a "I love you too". I had to ask myself, why am I always the one reciprocating the I love yous and not the one initiating them?
As a father of two young girls, these are words that I do not say enough. I know that the tough guy argument is that " I don't tell them I love them, but I show it t them everyday and they know I love them". Do they? Actions speak louder than words? Do they?
I remember laying in a hospital bed 2 days after my 30th birthday. I just had, what they are calling, a heart attack, and was recovering. My kids were 4 and 2 at the time. I remember looking at them and wife as I played the "what if" game. The biggest what if that I struggled with was, if I did not make it, did they know how much I loved them? Did I show them enough and did I tell them enough?
Medical situations are no strangers in our house. God continues to test our family. Even through all of the hard times, the end result has always been a stronger love for one another. After every single thing that happens to our family, especially medical, we always seem to grow closer together, but there has to be a better, less stressful way to achieve this unity.
So why is it so hard to tell someone you love them? More importantly for me, why do I only say it when I think the other person needs to hear it?
It's not that I am some kind of cold hearted bastard. I have a very open heart. We Bought A Zoo makes me tear up for crying out loud. It's not that I am afraid to say the words, because I have said them before. i don't believe that the words can get "watered down". I don't say the words with expectation that they will be reciprocated, although that is good to hear. So that really only leaves one thing.....I'm lazy.
I'm lazy because I don't exercise those words enough. I need to say it more often to those people in my life that I love. I don't want to ever lose a loved one and have regrets that I never told them that I loved them. I definitely don't want my loved ones to every have a day in which they feel like they have no one that loves or cares about them. Finally, I don't want to leave this earth myself without leaving those three words to those that I care about.
So I thought more about it and started thinking about the last time that i told my wife and kids that I loved them; initiated by me. Heather and I celebrate 11 years of marriage tomorrow and I cannot honestly remember the last time that i told her that I loved her first. That's awful. My two girls always tell me they love me, but rarely do they have to say, I love you too Dad.
I write about this tonight because during my purpose of doing everything that I can to improve the lives of kids with Type 1 Diabetes, I am also trying to become a better Dad, husband and over all person. Throughout this journey, I have realized that it starts on in the inside, specifically the heart. Opening my heart up, overcoming my fears and being courageous.
I have a long way to go in both areas but the journey has been fulfilling.
No more being lazy for this guy.
I Love You.
Monday, July 16, 2012
Being Forgettable
When my time on earth is through....how will I be remembered?
I used to focus hard on this. I had things that I wanted to accomplish, places I wanted to see and people I wanted to meet. One event in our lives changed my perspective and now what I originally wanted for myself has faded away for a much bigger purpose.
Truth be told, I know that peoples' opinions of me varies. I know that some people have a lot of respect for me and what I attempt to do. I know that some people think that I am a fool for walking away from a job and currently being unemployed. I know that some people think I am an asshole for being moody and sometimes saying what's on my mind. Don't get me wrong, I want to be a person that every feels to be trustworthy and dependable. I have "audible" my thoughts on my public perception and have focused more on the actions/tasks rather than what people think of me. It's amazing the amount of mental freedom I have gained by following my heart, and more importantly, God's plan for me.
Prior to this year, I had spent 3 years assisting the CPU Storm baseball team. A group of young men that have played together since the ages of 8-9. With no son on the team, I started to grow close to these young men and developed relationships with these guys that put me in a position to teach them the game of baseball and how to be responsible young men. It also put me in position to learn things from these boys that I never would have learned otherwise.
Sadly, I decided at the end of last season, that I would no longer have the time to give these boys the appropriate commitment to assist coaching them this year. A decision that was both very tough and heart breaking for me.
As they started preparing for their season this year, I couldn't help but think about how they were doing and so on. But things have a funny way of working out.....
I walked away from my job for personal reasons, which was also tough to do, but in the long run the best decision for me and my family. Once news of this got out, I found myself surrounded by five of the players, asking me to come back and help with the team. After talking with my family, I agreed to come back and help.
Long story short, this season has been incredible! We had our ups and downs, but have really grown as a team and are currently in first place in our division. Coaches are often times measured based on wins and losses, it's the nature of the beast of coaching. I think this season has been successful for many other reasons. I am not a believer in "moral" victories, but a huge fan of lessons outside of the game that are learned.
Our coaching staff, lead by John Harris, has challenged these boys to be uncomfortable, which for many of them meant stepping up and being leaders. We challenged them to play at their highest level and push on for more of themselves. The philosophy is that we understand that we are coaching a group of young men that statistically will never play in the Major Leagues, but will be professional in life someday. We ask for 100% effort 100% of the time in 100% of the things they do. I think of my role as coaching young men to be men and not so much to be baseball players. Baseball is just the platform in which is used to facilitate the lessons. I can honestly say that these young men have answered the call and I am very excited for their futures and look forward to be a spectator to their successes.
Later in life, when these boys have become men, and have moved on to careers of their choice, with families of their own, I don't expect to be remembered (my ego isn't that big). What I hope is remembered is the things they learned while being part of a team. I hope they remember the things they accomplished with the effort they put forth. Remembering the lessons and not the people who helped facilitate them.
I am proud of these boys for what they have accomplished and for the things the will accomplish in the future.
I mention this example because this is how I want to remembered....which is not at all.
God has made his plan clear to me and I now have the responsibility of following through with his plan. All praise to Him as he has placed me in a position to do things to help those in the Type 1 Diabetes community. I don't care to be recognized for the things that I/We have done to help make living with Type 1 diabetes better and progress towards the cure. I do hope to live long enough to see a cure for my daughter.
My wife is taking the same stance. She is doing the JDRF Ride To Cure in LaCrosse, WI this year. Her first bike ride of this distance (100 miles) and it will be tough. She is $1200 away from her goal and needs your help. If you, your business or someone you know would like to donate and help her meet her goal, please contact us. Thank you.
I used to focus hard on this. I had things that I wanted to accomplish, places I wanted to see and people I wanted to meet. One event in our lives changed my perspective and now what I originally wanted for myself has faded away for a much bigger purpose.
Truth be told, I know that peoples' opinions of me varies. I know that some people have a lot of respect for me and what I attempt to do. I know that some people think that I am a fool for walking away from a job and currently being unemployed. I know that some people think I am an asshole for being moody and sometimes saying what's on my mind. Don't get me wrong, I want to be a person that every feels to be trustworthy and dependable. I have "audible" my thoughts on my public perception and have focused more on the actions/tasks rather than what people think of me. It's amazing the amount of mental freedom I have gained by following my heart, and more importantly, God's plan for me.
Prior to this year, I had spent 3 years assisting the CPU Storm baseball team. A group of young men that have played together since the ages of 8-9. With no son on the team, I started to grow close to these young men and developed relationships with these guys that put me in a position to teach them the game of baseball and how to be responsible young men. It also put me in position to learn things from these boys that I never would have learned otherwise.
Sadly, I decided at the end of last season, that I would no longer have the time to give these boys the appropriate commitment to assist coaching them this year. A decision that was both very tough and heart breaking for me.
As they started preparing for their season this year, I couldn't help but think about how they were doing and so on. But things have a funny way of working out.....
I walked away from my job for personal reasons, which was also tough to do, but in the long run the best decision for me and my family. Once news of this got out, I found myself surrounded by five of the players, asking me to come back and help with the team. After talking with my family, I agreed to come back and help.
Long story short, this season has been incredible! We had our ups and downs, but have really grown as a team and are currently in first place in our division. Coaches are often times measured based on wins and losses, it's the nature of the beast of coaching. I think this season has been successful for many other reasons. I am not a believer in "moral" victories, but a huge fan of lessons outside of the game that are learned.
Our coaching staff, lead by John Harris, has challenged these boys to be uncomfortable, which for many of them meant stepping up and being leaders. We challenged them to play at their highest level and push on for more of themselves. The philosophy is that we understand that we are coaching a group of young men that statistically will never play in the Major Leagues, but will be professional in life someday. We ask for 100% effort 100% of the time in 100% of the things they do. I think of my role as coaching young men to be men and not so much to be baseball players. Baseball is just the platform in which is used to facilitate the lessons. I can honestly say that these young men have answered the call and I am very excited for their futures and look forward to be a spectator to their successes.
Later in life, when these boys have become men, and have moved on to careers of their choice, with families of their own, I don't expect to be remembered (my ego isn't that big). What I hope is remembered is the things they learned while being part of a team. I hope they remember the things they accomplished with the effort they put forth. Remembering the lessons and not the people who helped facilitate them.
I am proud of these boys for what they have accomplished and for the things the will accomplish in the future.
I mention this example because this is how I want to remembered....which is not at all.
God has made his plan clear to me and I now have the responsibility of following through with his plan. All praise to Him as he has placed me in a position to do things to help those in the Type 1 Diabetes community. I don't care to be recognized for the things that I/We have done to help make living with Type 1 diabetes better and progress towards the cure. I do hope to live long enough to see a cure for my daughter.
My wife is taking the same stance. She is doing the JDRF Ride To Cure in LaCrosse, WI this year. Her first bike ride of this distance (100 miles) and it will be tough. She is $1200 away from her goal and needs your help. If you, your business or someone you know would like to donate and help her meet her goal, please contact us. Thank you.
Wednesday, June 6, 2012
The Now
I appreciate the fact that a lot of you have been checking this blog and also realize that I owe you all an apology for not updating the blog. I would love to rattle off the excuses for not updating; but they all lead back to losing sight of my purpose.
I want to start with some facts. Some facts that many of you may know, many of you know and denied or many of you had no clue. These are facts about me. Me and this wonderful disease we call Type 1 diabetes. I was diagnosed at the age of 15. I had no idea what diabetes meant or even what it meant in regards to the rest of my life. I didn't think about my future. Doctors are always good about mentioning the fact that, "if you don't take care of yourself now, you will have problems in the future". To a 15 year old...who really cares. I was an arrogant, live in the now type of teenager and didn't really have plans for the future. I was living a care-free life up until my day of diagnosis; diabetes came along and rocked my world...yet I didn't care. After my diagnosis...I didn't change anything in my life. I continued on as usual and had total disregard for my health. Every once and a while, I would put a little effort into controlling my diabetes, but that usually lasted a couple weeks and often occurred after a hospital stay.
To say that I cared about diabetes when I was younger is a flat out lie. As a diabetic, I single handed kept Little Debbie snack cakes in business. I did drink diet soda, but I had always drank diet soda. I tested my blood sugars.....sometimes.....never. I gave myself insulin based on what I thought I needed, which was basically a "shot" in the dark. I felt that ignoring diabetes would make it go away. It kept me on pace with my friends and my social life...it made me fit in. I had no vision as a young person. I ignored those who tried to warn me and pushed away those that cared about me. I felt invincible. I heard the warnings of the health problems that would come if I didn't take care of myself, but I never applied them. It's too late to play the ifs and buts game because I have to deal with the now.
The now is something that I never had the vision as a young man to see. The now is having passed this disease on to my youngest daughter and playing the role of a hypocrite as I tell her to "take care of herself". The now is being 35 years old and working my ass off to stay healthy so that I can increase the time that I have with the 3 most important ladies in my life. The now is facing the reality that I am about 20 years tardy in really paying attention to diabetes. The now is having an aching body and now knowing why. The now is battling an addiction to sweets that grew strong over the last 20 years (Reese's Peanut Butter Cups is the diabetic meth in my opinion). The now is realizing that it is all too late, but convincing myself everyday that it's not.
My vision is that others can learn from my mistakes. I hope that other diabetics can take responsibility instead of choosing the irresponsible road that I chose. If Doc and Marty McFly would show up in my drive way with a flying Delorian and take me back 20 years, I would most definitely do things differently. Let's face it, that's not gonna happen and maybe it shouldn't. As sad as it sounds, I believe in natural consequences because I think there is a lot to learn from them. I have learned my lesson, but now want to teach it to others so they don't make the same mistakes, which is the reason I started this blog.
Life moves too fast for me to dwell on the mistakes from the past. Like I said, I have to deal with the now. So now...I will be a positive example for Micheala.
From the house of 4 people and only 2 working pancreas...have a fantastic day.
I want to start with some facts. Some facts that many of you may know, many of you know and denied or many of you had no clue. These are facts about me. Me and this wonderful disease we call Type 1 diabetes. I was diagnosed at the age of 15. I had no idea what diabetes meant or even what it meant in regards to the rest of my life. I didn't think about my future. Doctors are always good about mentioning the fact that, "if you don't take care of yourself now, you will have problems in the future". To a 15 year old...who really cares. I was an arrogant, live in the now type of teenager and didn't really have plans for the future. I was living a care-free life up until my day of diagnosis; diabetes came along and rocked my world...yet I didn't care. After my diagnosis...I didn't change anything in my life. I continued on as usual and had total disregard for my health. Every once and a while, I would put a little effort into controlling my diabetes, but that usually lasted a couple weeks and often occurred after a hospital stay.
To say that I cared about diabetes when I was younger is a flat out lie. As a diabetic, I single handed kept Little Debbie snack cakes in business. I did drink diet soda, but I had always drank diet soda. I tested my blood sugars.....sometimes.....never. I gave myself insulin based on what I thought I needed, which was basically a "shot" in the dark. I felt that ignoring diabetes would make it go away. It kept me on pace with my friends and my social life...it made me fit in. I had no vision as a young person. I ignored those who tried to warn me and pushed away those that cared about me. I felt invincible. I heard the warnings of the health problems that would come if I didn't take care of myself, but I never applied them. It's too late to play the ifs and buts game because I have to deal with the now.
The now is something that I never had the vision as a young man to see. The now is having passed this disease on to my youngest daughter and playing the role of a hypocrite as I tell her to "take care of herself". The now is being 35 years old and working my ass off to stay healthy so that I can increase the time that I have with the 3 most important ladies in my life. The now is facing the reality that I am about 20 years tardy in really paying attention to diabetes. The now is having an aching body and now knowing why. The now is battling an addiction to sweets that grew strong over the last 20 years (Reese's Peanut Butter Cups is the diabetic meth in my opinion). The now is realizing that it is all too late, but convincing myself everyday that it's not.
My vision is that others can learn from my mistakes. I hope that other diabetics can take responsibility instead of choosing the irresponsible road that I chose. If Doc and Marty McFly would show up in my drive way with a flying Delorian and take me back 20 years, I would most definitely do things differently. Let's face it, that's not gonna happen and maybe it shouldn't. As sad as it sounds, I believe in natural consequences because I think there is a lot to learn from them. I have learned my lesson, but now want to teach it to others so they don't make the same mistakes, which is the reason I started this blog.
Life moves too fast for me to dwell on the mistakes from the past. Like I said, I have to deal with the now. So now...I will be a positive example for Micheala.
From the house of 4 people and only 2 working pancreas...have a fantastic day.
Sunday, April 15, 2012
The Eastern Iowa Juvenile Diabetes Research Foundation Dr. Richard Noyes Volunteer(s) Of The Year Award
Monday night was the Eastern Iowa JDRF Awards banquet. It is a night to celebrate all of the hard work that the family and corporate teams put forth this year in regards to fundraising. Team and individual awards are given out throughout the night. It is awesome to watch the kids go up and receive their awards. Micheala received an award for raising over $9000 this year. Dylanne received an award for raising over $5000 and my sister, Joni, received an award for raising over $2500. Team Pump Princess received an award for raising $20,010 this year and being the top family fundraising team.
My favorite part of the night was watching our friends, Team Super Taylor (Blanchards) win Rookie of the Year. I am so proud of the number of walkers that participated on their team and the amount they raised this year. They are a very pasionate family and have really done a lot in the short time since Taylor was diagnosed.
I also enjoy watching our good friends Team Bryce's Bunch (Humpfers) and Team Katy Bugs (Sterlings) achieve such great fundraising numbers. 2 very pasionate families that are making a difference in a big way. Celia claimed her Best T-Shirt Award again this year. Her T-Shirts are always so fun and creative. Dylanne and Micheaa always have to have one.
Just when we thought the night was over, we were surprised. We were awarded with some very kind words, the Dr. Richard Noyes Volunteer(s) of the Year Award.
It was one of the only times in my life that I was speechless. My wife was in tears and the girls were excited because we were getting another award. We were very humbled because we don't believe that we do anything more than any other diabetic family, nor do we need the recognition. I was very happy for my wife and Dylanne. Often times, they are the ones in the background while Micheala and I take center stage. They received the appropriate recognition on that night, because it takes all of us to make our fundraising activities a success.
The goal for the walk was to raise $566,000. I made an prediction after the walk that we would surpass $600,000 and I had many people look at me like a monkey trying to do a math problem. The walk total....$609,000. Who's crazy now? ha ha ha.
I have said it before and I will say it again, we cannot achieve the things that we set out to do without the support of each and everyone of you. For that, we thank you very much. Knowing that we have people on our side that believe in us and our purpose is what fuels me to do more each and every day.
For those of you that do not know about Eastern Iowa JDRF, contact me or the Eastern Iowa JDRF office in Cedar Rapids and we can show you how rewarding and fun it is to be part of this special organization.
Monday night the room was packed with over 200 people that are making a difference....200 people we call our friends.....200 people we call our family.
My favorite part of the night was watching our friends, Team Super Taylor (Blanchards) win Rookie of the Year. I am so proud of the number of walkers that participated on their team and the amount they raised this year. They are a very pasionate family and have really done a lot in the short time since Taylor was diagnosed.
I also enjoy watching our good friends Team Bryce's Bunch (Humpfers) and Team Katy Bugs (Sterlings) achieve such great fundraising numbers. 2 very pasionate families that are making a difference in a big way. Celia claimed her Best T-Shirt Award again this year. Her T-Shirts are always so fun and creative. Dylanne and Micheaa always have to have one.
Just when we thought the night was over, we were surprised. We were awarded with some very kind words, the Dr. Richard Noyes Volunteer(s) of the Year Award.
It was one of the only times in my life that I was speechless. My wife was in tears and the girls were excited because we were getting another award. We were very humbled because we don't believe that we do anything more than any other diabetic family, nor do we need the recognition. I was very happy for my wife and Dylanne. Often times, they are the ones in the background while Micheala and I take center stage. They received the appropriate recognition on that night, because it takes all of us to make our fundraising activities a success.
The goal for the walk was to raise $566,000. I made an prediction after the walk that we would surpass $600,000 and I had many people look at me like a monkey trying to do a math problem. The walk total....$609,000. Who's crazy now? ha ha ha.
I have said it before and I will say it again, we cannot achieve the things that we set out to do without the support of each and everyone of you. For that, we thank you very much. Knowing that we have people on our side that believe in us and our purpose is what fuels me to do more each and every day.
For those of you that do not know about Eastern Iowa JDRF, contact me or the Eastern Iowa JDRF office in Cedar Rapids and we can show you how rewarding and fun it is to be part of this special organization.
Monday night the room was packed with over 200 people that are making a difference....200 people we call our friends.....200 people we call our family.
Friday, March 23, 2012
This Is A Story Of A Girl......
I write a lot about Micheala on this website. The reason I do that is because this blog was set up to give outsiders a perspective of what it is like to live with or live with someone who has diabetes. I have come to realize that this has developed into something more than just sharing our daily struggles and victories with others; it has taught me a lot about life.....yeah......life.
In 19 days, Micheala will be celebrating her 7th birthday. 7 years that this young lady has blessed us with her presence. 7 years of laughter, milestones, good times and bad. I wanted to take the time tonight to write down my thoughts, rather reflections.
Micheala has never been or ever will be average. Complications just a few months after she was born, which eventually led to Chiari Malformation of the brain, was an early indication to us that Micheala was going to have to be a tough kid. Spending our wedding anniversary in the Iowa City Hospital surgical waiting room was not our ideal way to celebrate our marriage. Fortunately, Heather and I decided after having our first child that our "needs" would take a backseat to the needs of our children. Micheala healed and we moved forward.
Diabetes diagnosis on May 10, 2009 (Mother's Day) was the next stop for Micheala. I took this hard and Heather stood strong for the family as Micheala and I were hurting. As most of you know, we fight this battle everyday, but have made the decision to embrace it.
Thyroid issues would soon make their way into Micheala's life. A marble sized lump and a large thyroid raised red flags which eventually landed us having to medicate Micheala with thyroid medication. The victory in this situation is there is no indication of this being cancerous. In addition to insulin, Micheala takes this medication in the morning before school.
Now, we sit in anticipation of what we are sure to be a new diagnosis for Micheala on Monday. We will be entering the world of Celiac Disease. Yes, gluten free....here we come. Heather has done what she typically does, which is buy books to educate herself on the disease and I sit in denial until I get the "for sure" from the medical professional.
She will turn 7 years old on April 19th.
Without knowledge of these things, you cannot tell that Micheala has these different issues. She looks and acts like a normal 6 year old.
Micheala still laughs, plays, dances, fights with her sister and all of the other things kids her age do, which is very................inspiring.
I often think that things in my life stink. When I think that, I look at Micheala and feel foolish. Foolish that I complain about the unimportant things in life. Things like, waiting in line for almost an hour in the shoe store today, having a broken garage door opener or having my wife get a speeding ticket today. Those things are minor and why do I sit and stew on those things?
I have learned to be thankful for what I have and even more thankful for those things that I don't have. I have learned to enjoy all of the good things in my life and embrace all of the bad things. I have learned to live and not just exist. I have learned to laugh at the things that should make me cry. I have learned that spending time pushing her on the swing is far more important to her than filling her void with a new toy. Both of my children are very special to me. Both of them have taught me so much about what it is to be a dad and not just wear the title.
I have kicked around the idea of writing a book about these lessons that I have learned from my children, but I am not talented enough to pull something of that magnitude off. This girl has a story...a story of courage. A story of looking past all of the hurdles that God has placed in front of you and living a life full of happiness.
I love when Micheala talks to me about her dreams. I love when she puts on her special dance outfits, pulls out the ipod and does a dance recital for Heather and I in the living room of our house (this is a nightly event in our house). I love the fact that she has chosen not to let anything or anyone stand in her way.
I enjoy the inspirational quotes and have read books seeking out leadership and inspiration. Nothing is more inspiring than watching this kid just live her life. I don't know what Micheala will end up doing when she gets older, but I know that she is writing one hell of a story. I am very fortunate to not have to read about it because I get to experience it.
In 19 days, Micheala will be celebrating her 7th birthday. 7 years that this young lady has blessed us with her presence. 7 years of laughter, milestones, good times and bad. I wanted to take the time tonight to write down my thoughts, rather reflections.
Micheala has never been or ever will be average. Complications just a few months after she was born, which eventually led to Chiari Malformation of the brain, was an early indication to us that Micheala was going to have to be a tough kid. Spending our wedding anniversary in the Iowa City Hospital surgical waiting room was not our ideal way to celebrate our marriage. Fortunately, Heather and I decided after having our first child that our "needs" would take a backseat to the needs of our children. Micheala healed and we moved forward.
Diabetes diagnosis on May 10, 2009 (Mother's Day) was the next stop for Micheala. I took this hard and Heather stood strong for the family as Micheala and I were hurting. As most of you know, we fight this battle everyday, but have made the decision to embrace it.
Thyroid issues would soon make their way into Micheala's life. A marble sized lump and a large thyroid raised red flags which eventually landed us having to medicate Micheala with thyroid medication. The victory in this situation is there is no indication of this being cancerous. In addition to insulin, Micheala takes this medication in the morning before school.
Now, we sit in anticipation of what we are sure to be a new diagnosis for Micheala on Monday. We will be entering the world of Celiac Disease. Yes, gluten free....here we come. Heather has done what she typically does, which is buy books to educate herself on the disease and I sit in denial until I get the "for sure" from the medical professional.
She will turn 7 years old on April 19th.
Without knowledge of these things, you cannot tell that Micheala has these different issues. She looks and acts like a normal 6 year old.
Micheala still laughs, plays, dances, fights with her sister and all of the other things kids her age do, which is very................inspiring.
I often think that things in my life stink. When I think that, I look at Micheala and feel foolish. Foolish that I complain about the unimportant things in life. Things like, waiting in line for almost an hour in the shoe store today, having a broken garage door opener or having my wife get a speeding ticket today. Those things are minor and why do I sit and stew on those things?
I have learned to be thankful for what I have and even more thankful for those things that I don't have. I have learned to enjoy all of the good things in my life and embrace all of the bad things. I have learned to live and not just exist. I have learned to laugh at the things that should make me cry. I have learned that spending time pushing her on the swing is far more important to her than filling her void with a new toy. Both of my children are very special to me. Both of them have taught me so much about what it is to be a dad and not just wear the title.
I have kicked around the idea of writing a book about these lessons that I have learned from my children, but I am not talented enough to pull something of that magnitude off. This girl has a story...a story of courage. A story of looking past all of the hurdles that God has placed in front of you and living a life full of happiness.
I love when Micheala talks to me about her dreams. I love when she puts on her special dance outfits, pulls out the ipod and does a dance recital for Heather and I in the living room of our house (this is a nightly event in our house). I love the fact that she has chosen not to let anything or anyone stand in her way.
I enjoy the inspirational quotes and have read books seeking out leadership and inspiration. Nothing is more inspiring than watching this kid just live her life. I don't know what Micheala will end up doing when she gets older, but I know that she is writing one hell of a story. I am very fortunate to not have to read about it because I get to experience it.
Monday, March 12, 2012
Pump Princess(es)
Heather and I have not mentioned this to anyone yet, but I use this blog to get things off my chest and if I don't use this forum, I may go crazy.
Last week, Dylanne wet the bed. Out of character for her BIG TIME. In our house, if you wet the bed, you get your blood sugar tested. I mean, we have the supplies, so why not? We tested her blood sugars that morning and found that after fasting for 10 hours, her blood sugar was elevated to 141. 141 is not real high, but she should be about 100. This raised our eyebrows and started to employ some concern for Heather and I. Heather continued to test her sugars throughout the day, and thankfully, she had normal sugars the rest of the day.
Heather and I have been accused of being over paranoid in the past. With Micheala's Chiari Malformation, we went a year or so with no answers, yet we knew in our hearts that something was wrong. Turns out we were right. We started seeing signs of diabetes in Micheala early on and thankfully was able to catch her diagnosis prior to her going into DKA. We noticed her thyroid was huge and brought it to our doctor's attention. Thankfully we are able to monitor and medicate her now. We raised concern about Micheala having Celiac, and blood draws have show that there is a slight sign, so now we can monitor that. In my opinion, we have reason to be paranoid.
So our steps with Dylanne are to monitor her. We have been educated in regards to the signs of diabetes and are confident that when we see certain behaviors, that we will test blood sugars. We have to pay special attention to her if she gets sick, because that may be an indication as well. One more thing that God has thrown our way.
Does Dylanne have a chance of being diabetic? Sure. Will she become a diabetic at some point? Hopefully no, but this decision is out of our hands.
Dylanne knows what we are doing with her, but in the event that she becomes a diabetic, I don't believe she knows what that means. She watches Micheala and sees her struggles, but does not know what it feels like. To Dylanne, diabetes is about "Mom and Dad loves Micheala more than me", "Micheala gets to wear these cool pump pouches", "Everyone comes to the walk to see Micheala" and "Dad is always doing JDRF stuff". She has no clue how diabetes can impact her life in regards to her health.
Dylanne told us last night that her JDRF Walk team is going to be named "Dylanne's Peace Sign Pump Pouches". It's almost as if she has accepted the fact that she is diabetic already.
For me, I already live with the guilt that I have brought one child into this world and they have to deal with the burden of diabetes, but 2 children?
I have praying on this quite a bit lately. I believe that God's plan for me is directly related to the relationship that I have with JDRF. I believe Micheala's diagnosis was a wake up call for me to exercise my talents to benefit JDRF. I believe that God wanted more from me and was using me to reach out and advocate for a cure. I pray for answers wondering what it is that God is telling me now.
To be selfish, I don't want to go through another child of mine being diagnosed. The pain of Mothers Day (May 10, 2009) is still too real. It took me a long time to go through the grieving process before I started my mission to change the world of diabetes. I still has those days, but they are not as severe as they were when Micheala was first diagnosed. I don't care to go through that process again. A huge part of my heart was hurt when Micheala was diagnosed and it has taken a while for it repair. I am just not sure if another blow to my heart can be repaired. I am fearful for Dylanne, I am fearful for what it would do to Heather and I am fearful of what it will do to me.
Will I stress and worry about this? Yes, but I have to stay strong for Dylanne, even if she doesn't realize it. I refuse to let these feelings over shadow the great things that she has accomplished in her 8 year life.
I just don't want Pump Princess to become Pump Princesses.
Last week, Dylanne wet the bed. Out of character for her BIG TIME. In our house, if you wet the bed, you get your blood sugar tested. I mean, we have the supplies, so why not? We tested her blood sugars that morning and found that after fasting for 10 hours, her blood sugar was elevated to 141. 141 is not real high, but she should be about 100. This raised our eyebrows and started to employ some concern for Heather and I. Heather continued to test her sugars throughout the day, and thankfully, she had normal sugars the rest of the day.
Heather and I have been accused of being over paranoid in the past. With Micheala's Chiari Malformation, we went a year or so with no answers, yet we knew in our hearts that something was wrong. Turns out we were right. We started seeing signs of diabetes in Micheala early on and thankfully was able to catch her diagnosis prior to her going into DKA. We noticed her thyroid was huge and brought it to our doctor's attention. Thankfully we are able to monitor and medicate her now. We raised concern about Micheala having Celiac, and blood draws have show that there is a slight sign, so now we can monitor that. In my opinion, we have reason to be paranoid.
So our steps with Dylanne are to monitor her. We have been educated in regards to the signs of diabetes and are confident that when we see certain behaviors, that we will test blood sugars. We have to pay special attention to her if she gets sick, because that may be an indication as well. One more thing that God has thrown our way.
Does Dylanne have a chance of being diabetic? Sure. Will she become a diabetic at some point? Hopefully no, but this decision is out of our hands.
Dylanne knows what we are doing with her, but in the event that she becomes a diabetic, I don't believe she knows what that means. She watches Micheala and sees her struggles, but does not know what it feels like. To Dylanne, diabetes is about "Mom and Dad loves Micheala more than me", "Micheala gets to wear these cool pump pouches", "Everyone comes to the walk to see Micheala" and "Dad is always doing JDRF stuff". She has no clue how diabetes can impact her life in regards to her health.
Dylanne told us last night that her JDRF Walk team is going to be named "Dylanne's Peace Sign Pump Pouches". It's almost as if she has accepted the fact that she is diabetic already.
For me, I already live with the guilt that I have brought one child into this world and they have to deal with the burden of diabetes, but 2 children?
I have praying on this quite a bit lately. I believe that God's plan for me is directly related to the relationship that I have with JDRF. I believe Micheala's diagnosis was a wake up call for me to exercise my talents to benefit JDRF. I believe that God wanted more from me and was using me to reach out and advocate for a cure. I pray for answers wondering what it is that God is telling me now.
To be selfish, I don't want to go through another child of mine being diagnosed. The pain of Mothers Day (May 10, 2009) is still too real. It took me a long time to go through the grieving process before I started my mission to change the world of diabetes. I still has those days, but they are not as severe as they were when Micheala was first diagnosed. I don't care to go through that process again. A huge part of my heart was hurt when Micheala was diagnosed and it has taken a while for it repair. I am just not sure if another blow to my heart can be repaired. I am fearful for Dylanne, I am fearful for what it would do to Heather and I am fearful of what it will do to me.
Will I stress and worry about this? Yes, but I have to stay strong for Dylanne, even if she doesn't realize it. I refuse to let these feelings over shadow the great things that she has accomplished in her 8 year life.
I just don't want Pump Princess to become Pump Princesses.
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