May 31, 2012 will be a day that I will remember for the rest of my life. That was the day that our son, Alex, was diagnosed with T1. I am still having a rush of emotions over all of it. I do fine until I sit and think about it and then I get that out of control feeling and my mind goes crazy with thoughts. My husband is a T1 also, diagnosed when he was 6 also, the only one in his fanily with it, we have been told by several Doctors that since he was the only one that he wouldn't pass it on to his kids. I feel out of control with it because even though I have been married to a T1 diabetic for almost 11 years, he takes care of himself, the only thing I have had to do for him is help him with an occasional low. My husband got a pump a little over two months ago so we had to start counting carbs but other then that he does it all himself.
It has been a fairly easy transition for us because of our knowledge already. Alex was never admitted to the hospital, the day of his diagnosis they sent us from the ER to straight to the Endro to get all of his supplies. We are failry healthy eaters anyway so we haven't had to change his diet much but I still feel out of control. I'm the mom, I'm supposed to fix things, I can't fix this. What if I do something wrong and he suffers for it? Now we are already talking about a pump because John wants him on one before he goes back to school in the fall. More out of control feelings...
Not sure any of this makes sense but through all the babbling, I feel a little better, I guess it helps to get it out there even if no one understands it....

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Comment by miketosh on June 28, 2012 at 8:21am

I could see that talking about it would help. And talking here, you'll find other parents of diabetics, which I can imagine is much different than being a T1 like your husband and son. (and me) Minimed has a remote CGM display for parents that looks like it works really far away. As a T1, overnights were always the biggest concern for me since getting a pump. With something like that remote display, you could roll over at 3am if you are having trouble sleeping, and see where your son's sugars are.

I got T1 a bit later, age 14, so I was much more in control of the treatment than my parents, and I think that helped my mom. Even more, my mom found another mother of T1 that she could confide in. I think that was what kept her sane during the first year after my DX, or that's how she tells the story now 20 years later.

Comment by Scott Wilkins on June 28, 2012 at 11:19am

Imagine my parents 40 years ago when the Doc told them to expect my life to last another 5 years at best... Thank goodness my parents were as adaptive and strong as you sound like you are. Even though you posted about worry, I can read that you are very able and willing to do the steps needed for your son. Plus, you've got a lot going for you today in Type 1 treatments. Best advise is to stick with them, and be ready for change. After 40 years, I can say that the treatments do change and get better every time.

Comment by La on June 28, 2012 at 12:38pm

Its very rare for type one to run in families. I was the first case of diabetes in my family in 2010. Now my big brother has just been diagnosed with t1 and he is sixteen. To be honest, it isn't a very big adjustment for the family as we know everything already and could help him better than the hospital. He is also very brave. In the fourteen years of my life, I had not once said that before he was diabetic but unlike me, he had always been afraid of needles so I was proud of him. Just to let you know that if you fancy a chat with someone about family siabetes then you can chat with me and you are not alone.

Comment by Sam Iam on June 29, 2012 at 12:19am

I was diagnosed at age 8. I never considered how hard it must have been on my parents, until I became a parent, myself.

I cannot remember what it feels like to be non-D. It hasn't always been easy, but in retrospect, I think it has made me a better person.

I've been pumping for 3 years. I would agree that you should wait to put your son on the pump. Once your husband has been on it for a year or two, he should have a better idea of things that can go right and wrong, putting your son on it.

Comment by Sophia'smommyLori on June 29, 2012 at 9:49am

It is definitely an out of control feeling when your child has been diagnosed with T1. I know it well. But, things get better and, believe it or not, easier. My dtr was diagnosed at 4 1/2. In 3 months we had her on a pump. No regrets. It's just a different way of managing diabetes. Good luck!!

Comment by Joshua Marshall on June 29, 2012 at 12:21pm

I was diagnosed at age 11, should have been a few months earlier when I was 10, but my mom didn't want to admit I had it. I remember that it was hard for her - I think more than it was for me because she had many of the issues you've mentioned; failure, her son having it, thinking that she would get it instead of me because of the skip a generation myth and she had a long family history of diabetes on her side - all that stuff. I've had it for more than forty years now and I think it was easier for me to deal with it because I got it at a young age. It became "normal" without too many memories of another life. And treatment, as another person noted here, has improved so much. Thin needles, glucometers, counting carbs instead of being on an exchange diet that forces you to eat like a robot to manage the peak insulins that, thankfully, are no more. I give shots because I'm vain and don't want to expose myself wearing a pump and a CGM, but I wouldn't criticize either treatment; they're both about the same - whatever works best for you. In short, your son is better off now with the fantastic treatments available. He also looks pretty cool and appears that he'll have no trouble handling it with the best treatment of all: great parents, great son.

Comment by Alexsmom on June 29, 2012 at 4:46pm

Thanks for all the encouraging words everyone. Alex really is handling it pretty good but I think that is because he has seen his dad take care of his all his life. He has a really good dr and I think that because of that and our knowledge of it because of my husband his numbers haven't been all over the place. Right now he is having lows but mostly right before lunch. I am glad that I found this group and think it will be very helpful for me. Thank you!

Comment by Ray on July 2, 2012 at 12:48am

Hi, yeah know the feeling.....slowly you and him will find ways of coping..we found praising our son was the best way...he s eighteen now and 3 years with type 1..after digging deep into and reseaching the insulin use , 4 needles a day (1,5 year)...he found out himself the omnipod was the best way..he s on his way now backpacking through europe with 3 friends...what i tell Finn a lot is that he s the only one that can feel his body, and when he s getting low i often see him picking up a banana ...so we have a stock all the time..but every body is different and guide him ....in the right ways...greetz

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