February 11, 2013
It Could Be Worse...
But, it could be better, too!
Almost one year ago, 7-yr-old Aiden was diagnosed with Type One (Juvenile) Diabetes. As I processed this diagnosis and mourned, so many contradictory emotions ravaged my mind. As with many other “D-Moms”, we’ve heard many well-meaning people offer condolences about our children’s life-altering diagnosis. And, to calm myself, I’ve told myself some of these same things. But, when you’re processing such a diagnosis, to have your feelings dismissed or trivialized is difficult. It’s one thing for me to say certain things to myself to comfort myself, but that doesn’t make it okay for someone else to say. It’s kind of like you can insult your brother or sister, but nobody else can.
So many people are so ignorant and cruel about diabetes. I understand this is not an immediately fatal disease or a death sentence, but I still mourned for the changes in my son…and too soon (five months later), my sons. My perfect, beautiful, smart, healthy, funny baby boy was no longer “perfect”. His life course was altered permanently.
What I don’t want to hear (and I have heard):
I don’t want to hear about some non-compliant Type 2 Diabetic Patient’s complications…especially in the presence of my sons. This disease has terrible complications that happen after years and years of poor glucose control. If managed well, my sons can live with little to minimal complications.
I don’t want people to assume that my sons’ disease was caused by eating too much sugar. I’m not perfect, but I’m fairly health conscious. This disease has nothing to do with diet and lifestyle, however, one component of management is diet.
I don’t want to hear “At least it’s not….(insert horrible disease here)”. I am perfectly aware that MANY people and unfortunate children are saddled with horrible and deadly diseases. No, my baby does not have cancer. My babies are not physically or mentally handicapped where they will be dependent on me the rest of their lives. My babies are not disfigured. Overall, really, they are fine. As long as they manage properly, they will grow. Go to college. Have a family. Live a long life. However, there is still a deep and depressing mourning process a mother experiences. I don't want a pity-party, but please do not downplay the seriousness of this disease, not to mention the life changes and adjustments we all had to make.
I don’t want to hear “He’ll be fine.” Really? How do YOU know this? Can you see the future?
Diabetes is not an immediate death sentence. However, one wrong move CAN mean death, coma, seizures and complications. Thus, it is a long, constant, diligent and tiring process to manage this disease to keep my boys healthy…and alive.
· My children can still live a long and healthy life (if properly managed)
· With proper supervision and planning, my children can do the same things other children.
· My children can eat anything they’d like, they just have to have insulin to “cover” the carbohydrates so their bodies can process their intake.
What I hate about this disease:
Normoglycemia (normal blood sugar) is a lofty and often unattainable goal. Highs and lows are bad, and they can fluctuate between the two extremes within a matter of minutes…sometimes with little warning or explanation.
People are afraid to include my boys in “normal” kid activities. My boys can and will still be children for as long as possible. Please don’t feel afraid to include or invite them. You don’t have to make special accommodations for them. Rather, you have the party, I’ll be the pancreas.
Well-meaning people assumed “remedies” and diet for Type 2 diabetes will cure my boys. If there was a cure, I’m fairly certain our Endocrinologist would have mentioned it to us. Unfortunately, there’s no cure. If there was, I would’ve done it already.
Mommy can’t fix it. . If I could take this disease away from them, I’d put the burden on my shoulders in no time. However, no band-aid will fix it. So, hard as it is for me, I’ve had to come to terms with the fact that I can’t fix it, but I can learn as much as possible. I can teach them how to manage their disease, because ultimately it’s their disease, not mine. I can get involved to help raise money for research. I can make the best of a crummy and unfair situation. And, I can accept the notion that it's okay for me to cry about it now and then.
I’ve been blessed with great support from my friends, co-workers and family. The best thing(s) you can say or do to me (or any other diabetic family) :
· How are you coping?
· How are the boys doing?
· Ask if you don’t understand.
· Listen with an empathetic ear and no cliché retorts uttered in return.
· Help me/us in our involvement to find a cure.
No child should have to worry themselves with carbohydrates, shots, glucose, hypoglycemia, hyperglycemia or insulin. Children are supposed to have a care-free existence, but mine have something to "care" and worry about. Fortunately, my boys are alive and healthy. They don’t have cancer. They don’t have a fatal heart defect. They aren’t handicapped. Yes, it could be SO much worse! So much. But, it could be so much better. They could be free of this burdensome and worrisome disease.
Oh, and I still think they’re perfect, beautiful, smart and funny.