Tag: diagnosis

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.

With almost no knowledge about type 1 diabetes, we waited. It was a holiday after all – the doctor’s office wasn’t even open. We had just had such an amazing week. We celebrated Christmas and we were all home from work and school and everyone was getting along swimmingly. How could this be happening? Not us.

We started timing how often he went to the bathroom. At times it was in 20 minute intervals. I had been telling myself this was growth – he was always asking for “icy cold milk, please” and of course he had to go to the bathroom a lot with all that milk, right?

Okay, well he’ll get back into his routine when he goes back to school. It will be fine. We’re just out of sync.

So I pull into the school parking lot on January 2nd and as he climbs out of the van he says, “Mom, I want some icy, ice cold milk.” Oh, no. Please. You don’t. No way. Then I talk to his teacher. I ask her to look out to see if he’s going to the bathroom more often than normal and she says, “oh”. I say, “what?” Just hoping, my very last hope, that she knows something I don’t. That she will tell me about her friend or relative who went through this and the child grew out of it. That it’s a sign of this cold or that virus that is going around. But of course, she doesn’t say any of those things. She says that word again. She says, “diabetes”.

That’s when I knew.

I tried to control myself, but the tears overflowed. Nevertheless, not having a clue of the potential severity of the situation, I left Caleb at school and went to the DMV to renew my license. I have that license in my wallet and only I can see in the picture the puffiness around my eyes. It’s a constant reminder of when I was given Caleb’s diagnosis – by his preschool teacher.

We called the pediatrician early that afternoon when Caleb got home from school and told them our concerns and our desire to see a doctor. We told them that we believed he had type 1 diabetes. Knowing what I know now, I find it amazing that he was not seen immediately or sent to the ER, but given an appointment first thing the next morning. January 3rd is the official day of Caleb’s diagnosis.

But that was all a formality. I knew the day before.

He had been thirsty and frequently going to the bathroom for weeks. A quick internet search by my husband on New Year’s Eve, just hours before guests were to arrive, and we had the first hint of what was about to change our lives.

We now know these are telltale signs. We did not know it then. He was thinner, but we just thought that was part of his growth – he was no longer a baby after all.

On January 3rd, it was confirmed. We visited his pediatrician suspecting type 1 diabetes. After a urine and blood test, we were directed to the ER of Yale-New Haven’s Children’s Hospital. Do not pass go, do not collect $200.

We were told little: that his blood sugar was in the high 200s, and that someone without diabetes could eat an entire chocolate cake and still not go much above 140. But the bloodwork was being done to see for sure.

Before we ever got those results, Caleb was admitted. He was in a room with a 6 year old girl going through the exact same thing, just a day ahead of Caleb.

Caleb endured the IV. He endured the lancet and the injections. He was still three years old.

The mom of the girl next to us tried to console me within minutes of getting to the room. She showed me the needle. It was thin. It was flexible. She told me it could be so much worse. She had a friend whose daughter was dying of cancer. I know she was trying to help. But this did not help. I didn’t care that the needle was small and thin. It was still a needle. I didn’t care about that little girl or anyone else at that moment in time. All that mattered to me was that my little Caleb’s life was now changed. He didn’t deserve this.

I told my husband all I wanted was for him to grow. To grow normally. To be the tall, muscular young man I knew he would one day become before this diagnosis. I wanted him to be smart. That’s all I wanted then – for his body and brain to beat this disease.

I spent the night with Caleb in his bed that night. Brought him to the bathroom with his IV pole. Protected him from insensitive nurses. I slept little.

The following day we met with nurses, social workers, nutritionists, oh and the doctor who finally came to tell us that Caleb had type 1 diabetes.