On March 14th I heard words I didn't want to hear "Your son has Type 1 Diabetes". To say I was surprised isn't true, I had an inkling he had it, which is why I took him to the doctor and asked him to be tested for it. To say our lives are forever changed is 100% accurate. What a whirlwind of 16 weeks we've had. I'm going to spare you details at this time, but with all these changes happening in my life, I've decided I needed to start up a blog again.
I'll be posting about diabetes, because quite frankly, diabetes has become a 24/7 job. While it's a treatable disease, there is no cure, and never before did I really care or think much about it, but now that I'm living the nightmare and seeing my son get needles stuck in his body 12ish time a day ... I realize how ignorant I was. I will become an expert on this fucking disease real quick. It's my mission to keep my son as healthy as I can and allow him to continue to follow his dreams of playing hockey at a high level. I'll be the mom on the bench checking blood sugar levels and handing him a snack in the middle of the period to keep his sugar level up. I'll be THAT mom. The helicopter mom. The mom who constantly worries about her son's blood sugar level. Who will not sleep a wink the first time he stays overnight away from home. The mom who will constantly ask him if he ate, what he ate, if he took his shot, how he feels, etc. As if we didn't already have a close bond ... This has really made it closer yet.
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I ran across a blog a mother wrote about her T1D daughter who was diaganosed at age three. She nailed it man ... Everything I've thought and felt and have wanted to say - she said it. I don't want to copy her post, but I feel the need to share what I can relate to.
I hate the question "How's Trey doing?" While I know people mean well, I don't know how to answer it. Typically I say "Good", but I guess I don't know if that is the honest answer. While it seems like such a simple question, there isn't a simple answer. The first few times people asked I would shrug and say "I don't know I guess" and I got looks of horror or confusion from people, so now I just say "good" and that seems to pacify everyone.
If you don't live with diabetes 24/7, then you don't know. You can't know, and for me to try to explain it to you is about like giving a cat a bath. But I have to try. I have to try to give everyone I know as much information as I can and make it as simple as I can - even though there is NOTHING simple about T1D.
T1D is an autoimmune disease. It isn't caused by eating too much sugar, it's not because of my Gestational Diabetes while pregnant with him and there is no cure for it. Insulin is not a cure. (More on that later).
I need you to know ...
- there is no "good" or "bad" kind of diabetes
- you can't take your medicine and forget about it. It's not the flu that you deal with for 24 hours and then it's over. It's not a week long cold and then you're better.
- I think about diabetes 24/7. I honestly forgot to pick up my daughter from her Papa's house one day because my mind was so cloudy from lack of sleep, blood sugar numbers, checking the clock to see when the next blood sugar check was supposed to be, etc.
- diabetes is not something that is black and white. It's gray, so very gray. It truly doesn't make any sense as to why a meal today raises the blood sugar level or why tomorrow that very same meal drops the blood sugar number. Diabetes is changing, constantly.
- insulin shots are not a cure. To calculate insulin is not a+b=c. It's very complicated and in fact, can be deadly. Yes, we all die sometime from something, but I don't mean he will die from diabetes when he's 70, he can die from it TODAY if we don't take care of him the best we can.
- while we haven't ran into this yet, having an illness such as stomach flu or common cold will wreak havoc on blood sugar numbers. Trey can very easily shoot very high or drop very low in just mere hours and it can land him in the hospital or worse yet, kill him.
- Trey will have an insulin pump ... eventually. That was one of the fist questions everyone asked, and neither J or myself really had even gotten that far in our conversations with the specialists in SF. There is so much more to learn before a pump is discussed. What everyone NEEDS to know about the pump is that while it will avoid the insulin shots, it's still not a cure. You still have to tell the pump how much insulin to give which means you still have to figure our the proper ratios and all that jazz. Convenient in some aspects, yes ... But it doesn't allow mom to sleep any better at night or stop the 8 finger pokes a day checking blood sugar levels. And since it's a machine, it can quit anytime. We have to know how to give insulin manually before doctor will implant a pump.
- everything Trey does affects his sugar levels. The foods he eats, the exercise he gets, the stress he's under, the illness brewing inside his body, nerves, excitement, hormones.
- Trey can eat anything he wants. Yes, even birthday cake or suckers.
- sugar-free isn't always better.
- his blood sugar must be checked BEFORE he eats. Not after, not even after a few bites. BEFORE
- trying to be the perfect pancreas for him is impossible
- I don't want you to pity him or our family. I want you to FEEL for us and help find a cure with your empathy.
- having diabetes cost A LOT of money.
- I am exhausted, mentally. I am crabby. I feel as if I am going through the stages of grief.
- I too was once ignorant to how severe Type 1 Diabetes is. Educate yourself and educate others.
- this has been a life changing event. Nothing was once as easy as it was. Even a trip to the store must be planned around a blood sugar check or meal time.
- people are going to think I am very over protective and that's fine. Until YOUR child is diaganosed with a deadly disease, you can think whatever you want. When their life lies in your hands and your calculations and your medical knowledge ... Then judge me.
- PLEASE do not compare T1D to Type 2. It's not the same. Do your research. It infuriates me when people say it's the same.
- I said it myself to try to make myself feel better, but since I've found it to be annoying when someone says, "At least he got it young so he won't know life before it." Yes, because every 4 year old should have to go through what he's gone through. It's not 'good', it's sad.
- I'm doing everything I possibly can to the very best of my ability. I have given this disease my full attention. I've lost weight, lost sleep, lost my fricking mind because of this. I've cried enough tears to fill Amsden Lake. I've felt guilty that I can't take away this disease for him and that I didn't catch it even sooner than I did. I hate poking his fingers to draw blood. I hate giving his insulin shots to him. I hate having to tell him, "No, you can't eat that right now. You have to wait 30 minutes." I hate seeing his sad face. I hate that he has to live with this forever and that there is no medical reason why he has it. I hate that there is no cure for it. I hate it.
- I do know this: having diabetes makes you strong * things do get better * there will be a cure one day - I just hope my son is alive when that cure comes * it always hurts * he will do great things in his life despite his illness * I will never give up or give in - I will FIGHT for my son every day * He is a fighter and more brave than he should have to be * I will educate my loved ones on this disease.
I realize this was long, but I had to do it. I maybe lost you after the third paragraph and I hope that our family means enough to you that someday you will finish reading this post because it's very important for you to understand what our family goes through and to educate yourself the best you can for Trey's sake.
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