Saturday, February 02, 2008

Who Knew

Sometimes when there is so much to say i end up saying nothing at all. Sometimes when there is so much to do i end up doing nothing at all(ask my wife). The fact of the matter is that I have no idea where to start. How could i not have anything to say when so many unexpected factors are affecting every minute of our lives?
Maybe saying nothing says it all.
The only thing that i want to ask and answer myself is can Type1 Diabetes be any more of a screwed up disease? Yes i do believe so. Particularlly when two parents have to manage it within a toddler.
I remember my life as far back when i was 3 years old. I remember the joy of waking up on Saturday morning and watching cartoons and eating cereal in my jammies. I remember growing up with two Sisters getting carted off to ones' ringette game and the others dance classes. I remember playing my very first hockey game. I remember feelings and emotions that came hand in hand with growing up. I remember feeling dejected, praised, and accepted.
I relate fully to my litle girl growng up. I know how she is feeling when she is promissed for the next day her dada will take her to get her first fish bowl and fish. I remember that excitement the anticipation and the joy, the unknown.
I remember ALL of these things.
What i do not remember and cannot relate what soever is having a low blood sugar in the midst of a play group. I do not remember having high blood sugar and feeling "icky" before bed. I do not remember having to hide behind the couch so that momma or dada will not see me when it is time to have a needle. I never knew anything about my body other than it hurts when i fall it feels nice when i am clean and i pee when i have to.
All of this i never will claim that i know what it feels like or ever in my life will i ever know what this all feels like.
This is what is so hard about this. I cannot share my daughters pain. I want to. It would be condusive to our lives and management if we knew. Life doesn't suck..this does.
This is not a "poor me" post at all. This is a reality post. The reality of how I will never ever know one of the biggest factors in my little Emma's life.
I pray to god there will be a cure. Please say a prayer with me.

12 comments:

Naomi said...

Hi Chris!

I'm answering the question you left on my blog. My son Daniel is 14, and he was dx'd in May of '07. We started out with the N and the R regimen, 3 shots a day, 3 meals & 3 snacks a day. Very regimented. Apparently that's what the Children's Hospital here in Wash. D.C. does for every new diagnosis. Then, as you get used to carb counting and they see that you are diligent at testing your blood sugar, they allow you to "graduate" to the pen or the pump.

Daniel is now on the pen because it takes away the strict regimen that the N and the R had. He doesn't want a pump (yet) for a few reasons. He doesn't like the idea of something attached to him all the time. However, if there was a way to put in a pump under the skin (kind of like a pacemaker) he'd do that in a heartbeat. He also saw a video for a concept called the "Charmr" (you can read about it at http://www.adaptivepath.com/blog/category/charmr-project/) and he thought, wow, if I could have one of those things, I'd jump at it! Of course, the Charmr is only a concept now, but who knows... maybe some pharmaceutical company will jump at the chance to make and sell it.

Anyway, I've got a teenager who really has to be in charge of his diabetes care. I help, remind, cajole, cook, count carbs, etc... but he has to take the lead on his care. He has to do what is most comfortable for him. At this point that means the Lantus & Novolog pens. As for the future, who knows? He says that he thinks he'll have to switch to the pump before he goes off on his own -- whether that is college or sometime after -- because it has gadgets that will help him remember some of the things (testing blood sugar) that I remind him of now. He'd love to have a continuous glucose monitor. He doesn't mind giving himself the insulin shots when he needs to eat. He does like me to give him the Lantus shot because it is bigger.

I think with a toddler it must be much easier to pump. Less shots.

That damned blood sugar testing, though. Ugh. That must be so hard with a little one!!

I wish you all the best. Just like you, if I could take this away from my son by taking it on myself, I'd do it this second. I don't live in Daniel's head, so I don't know how he feels, even though I ask him to describe it to me. I get scared that my clunky efforts to help him manage his disease aren't good enough, that somehow he'll be harmed by my trying to help. But we all have to do what is necessary every day, because we love our children. Daniel knows I'm doing my best, just as your Emma knows how much you love her.

Drop by my blog anytime, I'm happy to talk!

Naomi

Shannon said...

I think it will mean a lot to Emma when she reads this one day and realizes that you try to understand what she's going through.

Sometimes I sit in amazement that they just truck right along enjoying life when they've gone through some rocking highs and lows.

We just got back from Brendon's birthday party at a bowling alley. He was whiney and said he was hungry. When I tested him, he was a 35 (convert that for me). He drank some lemonade, ate some pretzels, and went right back to having a good time with his buddies.

Minnesota Nice said...

Oh man. Powerful post and great comments.

Carey said...

Praying right there with you. Tough post to get through. And we experience a different kind of pain that hopefully our kids will never experience. Hang in there, man.

Sandra Miller said...

You really struck a chord with this one, Chris.

Stay strong.

Chris said...

Thanks you guys. And thanks for not forgetting to stop by here eventhough i have not been around.
I do not realize until you guys read and comment on how my posts read. After going over it again i realize what i have written. Its weird the ones that have the most impact are the easiest ones to write.
Thanks again my friends.

Lisa said...

What a great post. I understand exactly how you feel as I have felt the same way. I didn't get through your post without crying.

It absolutely kills me that they have to deal with this disease and especially so young. It's hard enough to teach your children how to express their feelings but trying to teach them to tell you when they feel low or high when you don't really understand how they feel is next to impossible sometimes.

Just so you know we are praying everyday right along with you.

Lisa

Penny said...

Chris,

I say that prayer every single day. I don't get out of bed in the morning without saying that prayer. And, I will continue to do so until either I die or a cure is found (hopefully the later will happen first).

Scott K. Johnson said...

Great post Chris.

Shannon said...

It's 7 days on the countdown. You know what that means.

Paige said...

I started a post with that exact same sentence the other day.

I'm praying with you.

His Lady Love said...

My 7 year old brother was diagnosed with Type 1 just before his third birthday. I am also praying for a cure.... I understand how you feel and I am praying for you and your daufghter.