I think I have always been considered by others as “strong”, “tough”, “independent”. When Caleb was diagnosed, I felt I had to be those things. Because that’s who I was after all. Why should this be any different?
What I remember of the days following Caleb’s diagnosis is Caleb being very strong. His grandparents had just left for their annual stint to Florida and they wanted to come home to see him. We took pictures of Caleb smiling and being “tough” so that they could see that he was okay and they didn’t need to rush home.
There were moments of anxiety. The occasional resistance to an injection. The refusal to eat. Caleb was three. I can only assume how he must have felt. That he now had all these rules. There was no compromising on so many new things. He was being forced into this box. Who can blame someone, particularly at that age, to put up a fight every once in a while? He did. But overall he was, and always has been, a champ with few complaints about diabetes.
I remember explaining things to his older brother, Colin, who was six years old at the time. His reaction was, “I wish this happened to me and not Caleb.”
I remember welling up at the sight of any picture of Caleb in my home. All those pictures were of a boy and a life that was gone. Those were picture of the “before”. We would never know life as it was in those pictures again. We were now in the “after”. And the after was dismal.
And the books. I went to the library and took out any book they had with a reference to diabetes. Those books were dreadful. There are two things that stand out from all those books: (1) the complications – the amputations, heart failure, blindness, kidney failure, etc. and (2) the story of the little girl at a birthday party who had to eat an apple while all the other kids chowed down on cake and ice cream. That’s what I remember of my early reading.
I had never cried so much in my life as I did in those weeks of “after”. I could not even remember the last time I had cried before this all started. Because I was “tough”, remember?
I remember all the things people said to try to make me feel better. How it could be worse. How there is so much hope for a cure. I remember knowing not a single person who directly knew about caring for someone with type 1 diabetes. I had absolutely no one to whom I could relate.
I can safely say, to date, those were the worst days of my life.
This brings me to why I started this blog. I want people to know that there are people who understand out there. I want people to find places like Children with Diabetes, and TuDiabetes a lot quicker than I did. I want people to find the right books like Think Like a Pancreas and Type 1 Diabetes, before they start reading those horrid other texts.
Help is here. It will be tough at times, but it will be ok.
2 Replies to “The days “after””
hi, i just found your blog. my now 8 year old son has type 1 diabetes too. he was diagnosed feb 14th, 2008, at 6.5 years old. so much of what you write about speaks to me, deeply. my son is on injections, still, because he is afraid to go on the pump, and his BGs are pretty good. he doesn’t mind the shots at all (well, you know, most of the time)… he is on novo-rapid and levemir… and they seem to be doing good. he, too, was so tough and strong after his diagnosis… way stronger than me! he’s just now starting to figure out that diabetes 1) sucks and 2) isn’t fair.
anyways, i wanted to say thank you for your blog, i am going back to read all your previous entries…
My 2 year old son, Callan, was diagnosed with Type 1 diabetes almost a week ago today. I’m feeling just the way you were feeling back then. Thank you for writing this. It makes me feel not so alone!
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