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.

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.