We are only a few nights away from our 4th Annual Pump Princess fundraiser. As the slogan goes..."The Hay is in the Barn". I wanted to take the opportunity tonight to write about something that has been on my mind. I hope to offer a better insight for all of you on why we are constantly advertising this fundraiser, why we constantly post on Facebook about the JDRF Walk to Cure Diabetes, why we go to the trouble of putting together a youtube video and why we write articles for the local paper.
Anyone that knows me, knows I love to talk. Truth be told, I wish that I didn't have to talk. Fortunately, God has placed me in a position and put the words in my heart to spread the message about T1D, so I obey his plan. Our efforts are not about self gratification, fame or even to boost our egos. We have goals with our fundraising efforts that are measured by dollar amounts, but this does not define who we are and what we are trying to accomplish. We've received awards for our fundraising efforts in the past, but those awards collect dust on a shelf and serve as a visual reminder that we have not accomplished what we have set out to do...find a cure.
Simply put, 4 years ago, we decided that we were not happy with our situation. T1D had poisoned the bodies 1/2 of our family and had completely flipped the lives of the other 2 upside down. We were not satisfied with our lives as we knew it and decided to do what it takes to change it.
I am not a scientist, nor is anyone else in my family. Building a lab and creating my own cure was out of the question. We couldn't avoid or ignore diabetes, because like most diseases, it is a 24 hour, 7 days a week, 365 days a year issue. so we did our research and found that we could better our situation by choosing to advocate and raise funds for JDRF, who then places 82.5% of those funds directly towards research. This was our best option and the avenue we chose.
Looking back at the amount of money that we have raised for JDRF over the past 3 years, i can't help but feel a bit of emptiness. I am very proud of the work and effort that the Team Pump Princess committee has put forth, but I am quickly interrupted in that that as my daughter's insulin pump starts alarming. We don't spend much time celebrating in this house because, much like it does with other things in life, T1D pulls us back in to OUR reality.
Over the past 3 years, I have stopped asking so much for donations and spent more time educating and advocating for Micheala and JDRF. Telling Micheala's story to others and offering them a glimpse of what her little body has gone through over the past 3 1/2 years has been my primary focus as of late. I don't tell the sad story because I want you to cry or feel bad. I am telling the truth about how Micheala, and the rest of our family, wrestles with this disease. I talk with passion, because it hurts to see her go through this on a day-to-day basis.
It's not about the money....it's about what that money means to Micheala's future.
All of our money raised goes directly to Eastern Iowa JDRF. As the team leader and one leading this group of dedicated Pump Princess committee members, I, nor my wife, handles any of the money raised. This is to squash any belief that the money raised is going anywhere but Eastern Iowa JDRF. We would never take away from our daughter's future.
Saturday night will bring another successful fundraiser. The bar will be packed, music playing, beer flowing and money being raised. I look at it as a celebration. A celebration of all of the people that have found it in their hearts to back us in our journey to change the world.
Sunday morning, I will wake up start thinking about the 5th Annual Pump Princess fundraiser.
This cycle needs to end.
Make a choice to be there Saturday night and BE THE DIFFERENCE. If you cannot attend Saturday night, please contact me and I will let you know how you can be part of our push to end T1D.
Wednesday, January 16, 2013
Monday, December 24, 2012
Why Am I Not On There Dad?
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.
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.
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.
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