Monday, June 23, 2014

HATE diabetes. LOVE the diabetic.

These questions have come up more times than my heart can take over the course of the 17 months that J has had Type 1 Diabetes.

Mom why doesn't Ethan......
have to have a shot?
have to check his finger?
wear an insulin pump and cgm?
have diabetes?

Hearing these words come out of my son's mouth is like ripping my heart out of my chest, throwing it on the floor and stomping on it! J quickly discovered after his diagnosis that he was now different, but how do you explain it to a then 3 1/2 year old? In the beginning to help him cope we would let him pretend to give us all shots after he got his to make him feel like he wasn't alone. A little white lie that we as parents tell to protect our children. The fact of the matter is, that he is alone in this house! None of us know what it is like to live with T1D and have to have multiple daily shots, finger/toe pokes, wear an insulin pump, wear a cgm, and how his blood sugar numbers make him feel. I wish every day that I could understand what he has and will have to go through and even more I wish every second of those days that I could take it away from him and make it all better. After all, isn't that my job as his mother??

So when his innocent little 5 year old mouth asks me these impossible questions, what am I supposed to do? I try to explain without bursting into tears, that "Ethan doesn't have T1D, so he doesn't have to do the finger checks and wear medical devices." Then field the follow up questions as to WHY.....well, that is an answer that no one has. So I simply answer with "I don't know buddy." I have even heard him say "well, maybe when Ethan gets big like me, he will have diabetes too." Bless his heart, he isn't even to an age yet where he understands what having this disease means to his life.

This is the part where I start to get angry. Why does my child have T1D? Will he ever see a cure? How do I make him feel like he isn't different, when he clearly is? How do I protect him? How do I teach him to over come the odds and prove that this will not define who he is or what he does?

I hate this disease, I hate it with every ounce of my being! I hate the innocence and freedom that it is stealing away from my child, right before my very eyes! I hate that I have to watch him endure pain and discomfort! I hate that I have to make him sit out of play, swimming or activities because I have to fix his blood sugar! I hate that he is different! But most of all....I hate that there isn't a damn thing that I can do about it! We have no therapy, surgery, or treatment options! There is no regulating or controlling T1D. It is a minute by minute war going on in his body. He is on life support, constantly dependent on an infusion of insulin or a consumption of sugar to keep him alive! All we get to do is  wait, hope and pray that he will live to see the day that he has a CURE!

The cold hard truth of the matter is....I can't make it better, I can't take it away, I can't answer the questions of why he has this disease and the rest of us don't. I just CAN'T!

All that I can do is, fight every day to manage T1D the best that I can, and fight for awareness and a cure! I will never give up, because in this house we are DIABETES STRONG!

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