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.

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.

This Is Her Time

When it comes to juvenile diabetes...I don't rest. I can't rest because juvenile diabetes is a huge part of my life. A huge part that I hope to someday eliminate, but for the time being, it still remains a big part. I spend 364 days out of the year working towards day 365. That day, day 365, is the JDRF Walk to Cure Juvenile Diabetes. We take that one day to celebrate our accomplishments and feel proud about the money and awareness that we had raised throughout the year. Then the process starts all over again.

I am always looking to do more. How many fundraisers can we do? Who can I talk to about juvenile diabetes? How do I get more involved? These questions constantly hover in my mind. One thing that I have recently learned is that I can do more if I choose to step back.

Heather has always been the support in the background. Holding down the fort, while I travel and organize our different walk fundraisers and events. Recently, she decided that she wanted to take the lead. I knew this day was coming; when she took the lead, but I had no idea in what way, shape or form. She has always had the passion, but lacked the opportunity. She has the opportunity and is taking advantage of it.

Heather has made the bold decision to ride in the JDRF Ride for the Cure 100 mile Bike Ride in LaCrosse, Wisconsin this year. I am so proud of her for making this commitment. Usually, team Pump Princess sponsors a rider in this event, but this year, we are going to have our own rider. We are so excited for her and very proud.

Heather is making the commitment to do this ride knowing that she will endure a rigorous training schedule that will test her endurance and mind. She knows that she will be sore from all of the training and after the day of the ride. She knows that it will be emotional. She knows that she will be presented with excuses on why she shouldn't do it and will battle through those excuses.

She also knows that there will be a husband and 2 daughters standing at the finish line, waiting for her, no matter how long it takes, ready to embrace her and share her victory.

This is Heather's time. I can't begin to imagine what will be going through her mind as she pushes off to begin the 100 mile bike ride. What thoughts will flow through her mind as pain flows through her body. What victory feels like when the body is completely exhausted. This is her time...these are her thoughts.

I'm sure Heather will minimize the reasoning for doing this when asked, but I know better, I know she has a huge fighter that lives inside that little body of hers, that is ready to put on the gloves and start battling. This is her time.

This is when I step back.

I will be her biggest fan and her biggest supporter without a doubt. I will help her raise the necessary funds to complete her journey. I will care for our kids while she trains. I will make it possible for her to achieve this goal. I will stand in the background.

Heather is not one who does a lot of speaking in front of others when it comes to juvenile diabetes. I don't expect that to change with this journey. Actions do speak louder than words and right now, with her commitment to do this for Micheala, me and the other juvenile diabetics in the Eastern Iowa area, she is standing on a mountain top screaming at the top of her lungs.

I ask that all of you include Heather in your prayers, as she begins this journey. Pray that she continues to have a passion filled heart and pray that she remains healthy.

This is her time.

Crash

I had an opportunity to watch a movie this weekend. The movie was called "50/50". It was about a young man who got a rare form of cancer. The movie chonicled this young man's journey through his fight with this cancer, both with the disease and with his relationships with others. The reason I bring this up, is because there is a scene in the movie that has just been stuck in my head for the past few days. A scene that I found myself in many times.

Near the end of the movie, the main character (the young man with cancer), is sitting behind the wheel of his friend's car. He asked his friend to get out of the car and then locked the doors. As his friend is banging on the windows and wanting back in the car, the young man pulls out his cell phone and calls his therapist. In the peak of his emotional state, he screams to his therapist with angry tears rolling down his face, "I am so fucking tired of this disease". He eventually hangs up with his therapist and lets his friend back into the car.

As I think about that scene, it is easy for me to see myself in this young man's role, because I have done something similiar. There are just times when everything seems to crash into you. I do this a lot in regards to Micheala. It just seems like there are times that we really struggle and seems like we can never stay on track with Micheala's diabetes. The sleepless nights, the days off of work, the extra trips to the doctor's office and the trust that we have to have when leaving her in the care of others. It is always something. Maybe we stress too much. Maybe we let things bother us too much. Maybe we worry about things we shouldn't worry about. Maybe we are not absorbing the crash well enough.

Dylanne asked us last night why Micheala always seems to be sick. So Heather started naming off the different things that Micheala deals with and quite honestly, it took a few minutes to get through all of those things. I know Dylanne is a pretty smart 8 year old, but she still cannot put it together. I still can't put it together.

For myself, I just need to get better prepared for the crash. Things don't always go the way that I want them to and I understand that. Diabetes has a mind of it's own and doesn't care what's going on in your life. It gradually builds up to the point that it eventually crashes into you.

After the crash, I pick up the pieces and move forward. After all, I have to keep my promise, no matter what the circumstances.

Micheala's Smile

Had to post this story this morning because it made my day.

I was at the gas station in Urbana this morning, pumping gas and getting ready to head to work. An SUV pulled up to the pump next to me and the woman got out of the truck and said to me, "Are you Micheala's father?"

I told her I was and she introduced herself to me as Tucker's mom. Tucker is a boy in Micheala's class. She started telling me that Tucker wanted her to look up Micheala's video on their Kindle last night, so she did. They watched the video interview that Micheala and I did for the JDRF Gala. She commented on how Micheala would just sit there and smile. What she told me next, completely made my day.

She told me that Tucker turned to her last night and said, "I love it when Micheala smiles; it just makes me smile."

Tucker's mom and I joked a bit about a possible crush.

I got into my car and drove to work, but smiled all the way. Knowing that Micheala has that kind of impact on others is awesome. It reminds me that I often times get caught up in trying to say the right thing or even something profound, when maybe I just need to smile more.

I'm with you Tucker, when Micheala smiles; it makes me smile as well.