Oh my God. Never heard anything about diabetes never, ever. Didn’t know what we were going to do. How we were going deal with it? What was the next step?
Mother
Feeling uneasy and nervous
I felt kind of nervous, partially due to not knowing a lot about diabetes. We actually took him to his pediatrician and he suspected diabetes after hearing about the frequent urination and what not. He said he would call with the results and he said he had diabetes. He told me the blood sugar level and the number and I wasn’t familiar with it. I didn’t know if it was an awful number or a borderline number. So I think a lot of it not knowing much about diabetes probably made us a little uncomfortable a little uneasy and nervous at the same time.
Father
I didn’t know what questions to ask
I knew at that point that some people used insulin and some people controlled it by diet, but I didn’t actually know what caused it. I didn’t know what spectrum the numbers should be in; what the normal criteria would be for his age or if it was the same for adults. A lot of my questions at the time were answered, not knowing that I think I was little unaware of what to actually ask because I didn’t know anything about it.
Father
Looking back, things make sense
I didn’t know the signs when he was diagnosed with diabetes. But then when I figured it out, looking back things made sense. The day before that Friday he got sick, there was a snow storm and his dad came to pick me up from work and when we got home, his snow suit was saturated with pee. I remember yelling at him for not changing his diaper before he came to pick me up. He said that he did, and I didn’t believe him. And after the doctors told me, that made sense because frequent urination is a sign of diabetes.
Mother
It was all kind of a blur to me. I know that I was hysterical and they made me call me my mom. “You need your mother here. Go call her.” I don’t remember; I know they had told me about the diabetes before she got there. I kept hoping that they were wrong. That it was just like what they thought, and that it wasn’t really true–but it was.
Mother
I hope she learns from our experiences
My father had it. He got diagnosed when I was eight, but he was in his early 40’s when he got diagnosed, which was early back then for a man of his age. So I’ve grown up with it. My husband has it too. So, it’s pretty scary when she’s got it on both sides. I’m borderline. I’m still on the pill part, where she and my husband are on the insulin part. I just hope that she realizes that I’m not to the point where they are, but when she looks at her father, she can choose not to go that route. I hope that she learns from these experiences. If she takes care of herself now, she won’t end up like her father. That’s what we’re hoping for anyway.
Mother
I had never seen a kid with diabetes
I had some knowledge of diabetes because I’m a pharmacist so I have background in that, but the first time when I knew something was wrong we went to the doctors’. And when they called me, the doctor called me and said that Fernando had diabetes. I was scared too because I never saw a kid with diabetes. He was only three and a half, so I was scared. I was thinking the worse.
Father
What’s going to happen
When we found out, the first question we had was “What’s going to happen to him?” Fortunately, this is not another condition like cancer or something, you can deal with this. Now, how long is he going to live? Nobody knows.
Father
We didn’t sleep for the three days that we stayed here. We took turns to go home to take care of the other son, but we’d come back and stay with him and not sleep at night. It was hard but the doctors gave us good advice.
Father
I wanted to go back to our regular days
The only thing I wanted to do was to go back home and to go back to our regular days because was too much information the first two days here in the hospital. It was a lot of information and I didn’t get it. I didn’t want it. Leave me alone and don’t talk to me. I mean, I know it’s not good, but I have to go home and do it at home and I can learn right there. Not with papers. I’m not going to do anything with papers.
Mother
I was in denial
I was definitely in denial. He looked so healthy. And I just felt like they must be wrong. Secondly, if they’re right, this is way too big for us to deal with. I just felt completely overwhelmed. And so I ended up spending the whole time on adrenaline. Your whole body is just saying, “This can’t be happening. This can’t be happening,” over and over. And at the same time, you’re trying to stay calm. So you’re trying to figure out–“Ok, my daughter, Abby, was ten, and my son was seven. And so, you know, where is Abby going to be? Is she going to be with us? If so, who is going to talk to her?”
Mother
I checked out
I remember our nurse educator said to me, “I’m going to give you everything you need to know. I’m going to give you all the information you’ll need all the tools you’ll need to take care of your little boy, and you’re going to be just fine going home tonight.” I looked at her and I go, “Oh no, no, no. I’m not going home. I’m not taking him home,” and she goes, “You’re going to be fine.” I said, “This diagnosis isn’t even 24 hours old. There’s no way I’m taking him home.” She insisted we were going home, and at that point, while she was trying to educate us, I remember I physically and emotionally shut down. I checked out. I was like, “No. She doesn’t understand. I’m not taking him home.”
About halfway through, when I was supposed to give my husband the shot of the saline to practice and learn, I looked at her and she looked at me, and she goes, “You’re not getting any of this.” I said, “I told you, I am not going home.” I said, “The moment you told me I was going home was the moment I checked out.”
Mother
We didn’t believe it. Of course we knew little about diabetes. I knew generally that it was related to needing insulin. Initially, we had this thought that “Well, gee… maybe he just needs a shot once a day”, which is obviously far from the truth. We didn’t believe it because he seemed like a very healthy child so it didn’t register with us that he might have this disease.
Father
I couldn’t even imagine
My daughter walked into my home office and burst into uncontrollable sobs. I’ve never seen her cry like that in all the years. I mean she was 40 years old at the time and I didn’t know what happened. I couldn’t even imagine. So I just put my arms around her and she couldn’t speak. And when she finally said “diabetes”, I thought it must have been a mistake. You know, we all eat fairly well. We’re all thin. I never ever heard of anyone who had juvenile diabetes. I didn’t know it was any different from any other kind of diabetes. I just thought it can’t possibly be true. That was my first reaction.
Grandmother
Shouldn’t it be a little more complicated than that?
His doctor was like, “You need to get here now,” and we went there and they checked his finger, and he was in the 600s or so. They said, “He’s a diabetic.” I remember thinking shouldn’t it be a little more complicated than that? Don’t you want to run a few more tests before we give that conclusion or that diagnosis? We went to the hospital. My husband was traveling, so he wasn’t around. My family was all here, in the Boston area, and we were in Ithaca, New York. I was kind of like, “You’ve got to be kidding me.”
Mother
I was angry
I was like, here’s my new kid and these are new body parts. They shouldn’t be breaking down yet. My mother in law was a type I diabetic, so I kind of felt angry. I was angry at her. I was angry because I felt like she knew the symptoms and I was angry because she didn’t share that information. Not that it would’ve made a difference in terms of Brady and our family, but I felt like he had been sick for a month, and I didn’t know it.
Mother