We have all been there, and many of us still are! we are 1 year into our first diagnosis and 2 weeks into our second. There are definitly moments when i am not sure that i can even put one foot infront of the other, and my vision goes blurry and i am sure that some sick cosmic joke has been played on me because how could 2 of my beautiful daughters have diabetes when we did everything right, and we have no family history (isn’t diabetes genetic? ha ha, try explaining that to the 95% with no family history). i will say that it does get better, but it isn’t ever “normal”, instead you get the new normal. Math becomes second nature, and you grow your “diabetes brain”. Much of the first year is trial and error (and the errors can be scary, or at least frustrating!), but you learn your child better than you ever thought possible. you will learn what is best for your child and family. we are still shots, there isn’t a pump out there that meets the needs of my girls, yet (please hurry solo and jewelpump!) but even with that my girls live very normal lives. they are extremely active, and super competetive swimmers. they are smart and funny, and still the people that they want to be. we made a promise to them that we would make diabetes fit their lifestyles, and not their lifestyles fit their diabetes, and we have done that.
my biggest piece of advice is, when things get hard, or your sons diabetes starts causing complications with something that he loves, push through, there is always a way to make it work. It took 9 months before we got my 1st daughter on the right meds. I then did get a “do-over”, but not the one i wanted. When our second daughter was diagnosed, i knew exactly what to do and skipped all the trial and error, we went straight to the regiment that we knew would work. That is when i really realized how far we had come. I am sure that we drove the staff batty in the hospital, because i ended up challenging a lot of what was “standard for new onset”. I knew from our first diagnosis what would work, and what wouldn’t. we were lucky to have a doctors staff that was more than willing to defer to my “expert opinion”. there were quite a few computer overrides that had to happen though!
you are right that worst part is not being able to do anything, and feeling helpless. i remember walking around the hospital with our first diagnosis and looking at kids who had just undergone major surgery, and thinking how lucky those parents were because their child could be “fixed”. i no longer feel that way. When our second daughter was diagnosed, we knew before she was “clinical”. we got to watch as her pancreas failed her, and she got more and more tired, but her blood sugars hadn’t yet climbed high enough, her pancreas continued to try to do its job, but could keep up. It was awful to be told that we just had to wait, because we didn’t want to risk doing greater damage by interceding too soon. it was a relief when we finally saw BG numbers consitantly over 200, and we had passed the “threshold”. we were finally able to give her pancreas the help that it needed, and we caught her before the dreaded DKA started.
I now know that my kids are still whole, and diabetes is becoming more and more of an “invisible disease”. in many ways my girls are better people because of what they deal with. they can be much more compassionate. My other 2 non d’s have benefited as well. My 5 year old was asking people when they trick or treated if they knew how many carbs were in the candy because she wanted to make things easier for her sisters!
On the flip side i am not sure if the pain ever really goes away. i hate that my kids have been robbed of some of their innocence. no 7 year old should be made to face their own mortality, kids are supposed to be invinicible right? But i am also trying to let that go, my daughter who was just diagnosed says that she still feels “normal” despite all the finger pokes, and injections. She is a little suprised to learn that she is still who she was, just with a little extra.
you are definitely not alone, we are 2 more in Seattle, Washington