My story

[Pumpdaddy]

I have decided to share my feelings that I have been suppressing for many years. I have never told anyone how I really feel, but I am finding comfort in finally sharing my experience with my son’s diabetes. I joined this site because I was looking for research for a speech I had to give the other day. The more I read from all of you, the more I felt like someone else really understood what I was going through. I had to give a speech the other day in speech class and I chose to talk about Type I diabetics including my son. I had to stop in the middle of the speech because I started crying. I went over my allotted time and only got an 82, but it felt great to talk about it.

I am new to talking to others about Tyler’s diabetes. I felt like I could handle it by myself, since I am the man of the family. I even went to school to become an EMT so that I would know how to take care of Tyler. I am finding out that the more I share my story with others the better I feel and the more in charge I become.

I have a few flaws and not sure what to do, if anything, about it.

1^st. I was told by a doctor that Tyler was going to die at the age of 6. He was 1580 at the time.

2^nd. I was told he would never be the same again.

3^rd. I was told that he would have to take multiple shots every day for the rest of his life.

4^th. Tyler would have to be on a strict schedule, eating at the same time everyday, 7 days a week.

This was very difficult to deal with since our schedules are busy and often changing.

I inquired about pumps after educating myself on the disease.

I was told that he was too young for a pump and it would be many years before he could even think about it.

I loved what I read about pumps and pushed very hard to get Tyler on a pump. The doctor finally gave in and Tyler was on Medtronic’s 722 within 6 months after his initial near death experience.

So, here are my problems.

Tyler is the youngest child out of 4. I really changed my parenting methods with him over all the other children, and believe me, it was noticed by all. I did not do it on purpose, but to be given a second chance felt like a miracle, and I have never really experienced a miracle before.

He gets away with a lot more than any of my other children and of course that helped fuel Sibling rivalry.

He is a great kid and never (almost never) gets in trouble, but he is very lazy and does not always do what he is told to do. I let a lot of things go by with him that would have never happened with his older brother and sisters.

I really don’t mean to give him preferential treatment, but it just seems to come naturally; after all, he is a great kid that has to go through so much more than others his age.

I get a lot of grief from the family, who seem to criticize me every time I let something go that he does.

We have a great relationship and I hug and kiss him every chance I get. He told me the other day that he loved me in front of his friends and they laughed at him. He got mad at them and told them that he does love me and is not embarrassed to say it. As they walked out the door, I cried for an hour.

He has told his teachers that I am his hero, but honestly, he is the hero.

The issues in the family are that the rest treat him as a normal person (as they should) and get mad at me because I do not. I am his hero, but everyone else’s villain. There have been several fights between my beautiful wife and me over this. I deny all their accusations, but they know the truth. I have a very soft spot in my heart for my little hero.

He makes great grades, is never in trouble at school, and is the kindest and most passionate and mature child I know. He does all the right things when he is not at home. He stands up for his friends and those that get picked on at school, and never follows his friends that want to stray from the righteous path.

Believe me though, he is no saint; He only fails to do what is expected of him at home. He has not cleaned his room in over a year. He doesn’t clean up after himself most of the times and does not do what he is told to do until someone gets mad. He forgets his supplies when we go out and only seems to check himself after someone reminds him and does not take diabetes seriously.

So, why can’t I be as strict on him as I was with my other children? I try to treat him as a normal child, but even when I do get mad at him; I look into his eyes and just melt. The other children are grown and in college now, so he is the only child at home. When they come home, I can see the disgust in their eyes over the mess that he leaves behind. (I have OCD about cleanliness and have preached it to all my kids).

I did not mean to make this so long, but this is the first time that I actually wrote about my feelings. I don’t know if others have the same feelings that I do, but just in case you do, I wanted you to know that I don’t think you are alone.

I only hope that he turns out as great as my other children. I am very proud of them. They have never been in trouble and are doing great in college. They have goals and dreams and seem to be following the right path to achieve them. I am a very lucky parent, but I would give my life if I If I could just cure Tyler’s diabetes.

[Kathyann]

My daughter had a malignant brain tumor when she was 14 years old. It was a very rare sarcoma and was resistant to chemotherapy. She had surgery and radiation and I hoped for the best and prepared for the worst. I tried not to give her more attention than my other 2 children but she needed so much care. (She also has a heart condltion.) So I was always taking her for scans, echos, lab work. It affected her immune system and she was sick a lot. You just do the best you can because Tyler is going to need more attention to stay healthy. It doesn’t mean you don’t love your other kids. My other kids understood once they were grown up.

[Renata_Pellino_Porte]

Reading this was beautiful. Sounds like you have a very healthy family. First, be proud that everyone is comfortable enough to share their feelings. The only thing I would say about the chores is that (diabetes or not) you need to make sure that he has an understanding of responsibilities and that includes chores at home. Unfortunately he is going to have to do exactly what everyone else does AND manage his diabetes. Better to have that instilled now at home, then him be in shock when he moves out to be on his own. I would call a family meeting. I would thank your other kids for being honest. Help them understand how Tylers life is different, the DO need to understand. He does and will always need extra help and attention. Then explain to Tyler that diabetes is not an excuse. Everyone can grow together.

Secondly, I don’t know where you live…but to me it sounds like you need a better Endo. You should have someone who is supportive in Tyler’s life so he can accomplish whatever he wants. Not someone you have to fight with every step of the way and says that his life is over. Just my opinion.

[Devon1]

I agree with everyone, and love Renata’s advice about talking to your family. You sound like a wonderful father. Even if your other family members don’t approve (for lack of a better word) of your treatment, as long as they all know you love them, some day I think they’ll understand.

[Stephen_Gilbert]

I was something like 1600 when i was diagnosed when i was 2. The doctor claimed my mom was “abusing” me because when i got the the Dr. i looked like i hadn’t eaten in forever, and i was pretty rough. It took a few hours for the idiots at the hospital to figure out what was going on. By the time my dad got there (he was out of state… did about 100MPH all the way home) they had figured out what happened, and the Dr. that claimed my mom was abusing me didn’t even try to say sorry… let’s just say that it got rough between my dad and that Dr… he needed new teeth afterwards, and a new job, and a new several other things.

Surprisingly, my dad never got in trouble for that, and i honestly think that’s as it should be. I don’t know what it’s like to be a parent of a child with diabetes, but i do know what it’s like to be the child with diabetes. I know it’s hard not to, but we don’t really need any special treatment… if something happens, then we should be punished just like any other child. My mom learned this after a while, and both my parents treat my just like my older brother. Sure, they were easy on me till i was about 5 or 6, but after that, the ride was over, and they treated me just like my brother.

I’m not the kind to look for pity though. I’m me. Yes i have diabetes, but i don’t really look at it as life changing. It can be integrated into my life just as school is, and it can be handled. All that really needs to change is his diet, nothing else… and the changes there are really minimal with a pump. Even when i was on shots i could eat just about whatever i wanted, and have decent control. (Cokes aside… haven’t figured them out yet)

Guess you can look at this as a child’s point of view. What he sees (though he’s not as old as me). I know that it’s not the same, but i don’t consider diabetes as that much of a life changing thing. Will my life be exactly the same as it could be without diabetes? No. Does that mean that i can’t do whatever i want to? Not at all. Anything is still possible. I just have to be watch what i eat during the parties

Hope this helps somehow… i know i’m not a parent, but that doesn’t mean that i don’t know what it’s like to be the child

[Nancy10]

My youngest of three is diabetic. You sound similar to me. It is an ongoing joke in our family that my son doesn’t know what the school bus looks like . I have taken him to school everyday since his diagnosis in 5th grade - he is now in 9th. I don’t think it is just the diabetes, it is more that they are the baby and we have more time and patience with them as his older siblings are in college. I am not juggling 3 at home, only 1 and that is a huge difference. As I have gotten older, I have become calmer and wiser and things that stressed me when the older two were young, don’t stress me as much now… Plus the stress isn’t good for me, my family and especially my Type I son ! Don’t be so hard on yourself. Your youngest is the baby of the family first and diabetic second.

[Michael_Hutch]

I have a PhD in medicine.
I have seen it all!
Also, my mother a T2 for 25 years, on shots for 15 years.
My best friend a T1, diagnosed at 2 years old, his own shots from 12 years old. Now 49 years old.
Seen it all?
So when did I have a ‘silent cry’ or ‘shed a tear’?
When I heard this group of 5-16 year olds talk about their diabetes.
We all need to be tough ! For each other !
You can hear these kids chat away here…
http://www.diabetespowershow.com/DiabetesPowerShow___15.html

Heart wrenching stuff for me, but such an inspiration at the same.
For me, its like they have to learn about the ‘mysteries’ of life, but well before their time !
So sad, so nice, and so, oh inspiring.

[Jan]

Sounds to me like you are a great parent and a lot of what you have described about giving Tyler “preferential treatment” could be said of a lot of parents and their youngest child. The only fault I can find you describing is that he doesn’t clean his room or pick up after yourself so I don’t know why your wife and other children are resentful. I agree that diabetes care for Type 1 child could certainly be considered enough of chore, a neverending 24 hour a day chore, to excuse him from many additional ones around the house, but I would be careful not to send this message to him or the rest of the family. I would tend to excuse all of the children from chores if I were not going to give Tyler chores. I would not want Tyler’s siblings to feel resentful and that he is getting preferential treatment. I do agree with you it is not preferential treatment because Tyler has a lot of responsibility the other children do not have but others may not see it this way. In our home, we let children enjoy their childhood uninterrupted by chores, as our mother went overboard and gave us all too many chores. We ask that they do their homework and study and help keep their rooms clean. But we do 99 percent of the household chores ourselves. They only go through childhood once; let them have as much fun as they can.