He was diagnosed almost three years ago at age eight. He gave a speech about his life with Diabetes several times this summer as part of our "Fight Against Diabetes Fundraiser and motorcycle ride - I typed it up for him and will find it and post it as a separate post later. I can only speak with full knowledge about my own life with diabetes. I would also add that my husband is an excellent partner and support for this whole process. I can't really imagine doing all the things that I do without him and his support and encouragement. I can't describe his perspective anymore honestly than I can describe Marek's though so I'm sticking to my own perspective.
First, I would like to clarify type one versus type two diabetes. Type two is usually diagnosed in adults, often older adults with obesity. The rise in childhood obesity is increasing type two diabetes in children. With 60% of our nation's population obese type two diabetes is on the rise. Basically, obesity causes the production and use of insulin to malfunction. People with type two can control their diabetes with diet and exercise or with oral medication. Sometimes they use insulin in combination with these interventions. They are not considered "insulin dependent".
Type one diabetes used to be called juvenile diabetes but really you can be diagnosed with type one at any age. People with type one diabetes have no insulin production at all. There are a variety of theories on why this is - long story though so I'll save it! Without insulin, our bodies can't make use of glucose which is essentially the fuel that our bodies must have. Without insulin you die.
So... Parenting someone with type one diabetes is both normal and horrible. It is heart breaking and heart warming. It is at the root the most sad, hard, difficult and extraordinarily challenging thing I have ever done.
Marek has to check his blood sugar before he eats ANYTHING - always. He can't drink juice or regular pop - liquid sugar metabolizes faster than the insulin can catch it. His blood sugar should be between 80-120. He should check his BG two hours after eating. He checks his blood sugar, pokes his finger until it bleeds, an average of 8-10 times each day.
All physical activity adds extra challenge as his body burns up the glucose without insulin more rapidly. Helping him keep it in range is hard. He has an insulin pump that delivers insulin constantly in small doses throughout every 24 hour period and in larger doses when Marek punches in the number of carbohydrates that he is about to eat. The pump is awesome! Carbohydrates turn into glucose and glucose must be paired with insulin for the body to use it so insulin delivery is imperative.
My role is to be the mom, nurse, nag, enforcer, cheer leader, tracker, nutritionist, prescription filler, supply orderer, insurance expert and general helper. I am the one who adjusts his dosage for growth, sports and illness. I have memorized the number of carbs in so many foods it's amazing. I am the person who follows up on what his blood sugar is and whether or not he has taken insulin or checked his blood sugar after eating. I am the one who is on top of it. This is a hard role and sometimes I feel overwhelmed (this is where my partner and wonderful husband comes in for support and relief!)
I worry so much about Marek being healthy. Which, by the way, he is! I wish that I could take his diabetes away from him. I pray continually for his health and well being. I push him to be responsible and reliable and dependable. I push him to be confident and self assured about everything so that he will be a good self advocate. I push him to take care of himself.
I am the person who helps him change his infusion site, the place that the needle and cannula (tiny straw) enter his body. Every two or three days we have to do this. It is hard to stab my son with the needle knowing it is going to hurt him. It is hard to be patient with his reluctance when we are late to school. It is hard to watch him hurt, to see him struggle with the endless need to do this thing. It is hard to push him It is hard to imagine that not pushing him and not being on top of this could lead to his blindness, organ failure, amputation. Diabetes is the leading cause of these maladies in our society today. A person with diabetes has a life span shortened by 7-10 years. I sometimes think that that really isn't that much but when I think of it in direct application to my own child it is so significant. I usually just handle this diabetes thing. It is my personality to trudge onward through all adversity usually with optimism - it's what works for me. This usually works for the diabetes 'thing' but every once in a while it is hard and overwhelming and I cry.
Sometimes it is hard because it is my personality to push onward but it is Marek's personality to be more sensitive. Sometimes he just needs to be sad even when I just need to push him forward. He is brave and tolerant of this major life infringement. Marek is going to be just fine. I know he will.
I love my son. I know that diabetes care is better now than ever. I pray that they will continue to improve the daily care and management of diabetes. I believe that it will become preventable and curable in Marek's lifetime.
After running the Annual Springfield 5K Turkey Trot - in 31 minutes!
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