I remember the day Charlie was diagnosed with type 1 diabetes. It was November, 2003. Carey was giving a then 3-year-old Maeve a bath upstairs. I was holding Charlie in my arms as he slept. He was 20 months old.
I kept going back and forth in my head. Should I take him to the hospital? Should I wait until tomorrow? Am I overreacting? The phone rang and it was my brother Patrick. He knew we suspected diabetes. He too has type 1 diabetes. He begged me not to wait until tomorrow. I knew Charlie had all the signs - the thirst, the peeing through his diapers, the fatigue. I just didn't want to believe my baby was so sick. I hung up with Patrick, called upstairs to Carey, "I am just going to take him". Carey just looked at me. Normally he would have stopped me. He always stops me when I am going overboard. He didn't. He just nodded.
When I got to the hospital, I whispered to Charlie that we would laugh about this someday. "How mommy was so crazy and actually thought you had diabetes". I still didn't want to believe it was possible. Three minutes later, my fears were confirmed and his life, my life, our family's life was forever changed.
I know I should be grateful for insulin and technology making type 1 diabetes more manageable, but the fact is, INSULIN is NOT a cure. There is no cure for type 1 diabetes. There are serious complications that come with this disease. Maybe not tomorrow or next year, but they come. I want a cure before they come for my baby.
Watching Charlie live with this disease is inspirational. He is brave. He is strong. He is happy. He never says he hates diabetes. (I do, in my head). But it is also heartbreaking. He doesn't know about complications. We don't tell him. We try to preserve his childhood as much as possible. We know the truth, why burden him with it? Not now. One of the days I dread the most is the day he learns why the high blood sugars are so dangerous. Why mommy and daddy don't sleep through the night. Why we get up two, three times a night just to make sure his blood sugar is "good".
I am scared. There I said it. People who know me well don't need to hear me say it. I guess I wear it. I don't hide it well. I am distracted. People say, "Oh, you can't let it take over your life." On the surface it doesn't. We look like any other happy family … and we are. But underneath, it haunts me. It haunts Carey. We want a cure - for Charlie, for Patrick, for Daniel, for every child and adult and parent living and coping with the truth of type 1 diabetes. I don't really know how to end this rant. I am not a writer or a blogger. I don't even talk about this with anyone other than the people closest to me …
and my therapist.
I have tears in my eyes. Your last paragraph especially really hit home. As a parent of a child with Type 1, I feel haunted as well. Thank you for sharing.
I can understand your fear -- while there's some degree to which everyone is scared of "the Boogeyman", it's heightened in parents of young children, and especially in parents of children with life-threatening (there, I said it!) medical conditions.
How quickly it can happen is shown by the number of "Angel Wings" teams at the JDRF walks -- people walking in memory of those whom diabetes hath so untimely ripped from our midst. If insulin were a cure, we would not need the walks, the teams, the seemingly-eternal vigilance...
I am a scared mom too. Scared when the school number is on the caller ID for the 3rd time in a day, scared when he comes in and says he is shakey, scared of another sleepless night. I am grateful to have you and Carey and Charlie to read about - at least I am not alone with my fears. Insulin is not a cure - Thank God for it, but it is not a cure... Thanks for sharing Susanne.
Types 2 diabetes Runs in my family. I have been blessed that my children have been spared so far. Thank you for posting. I am praying for the cure as well. I became more aware of the the type 1 diabetes when Brett Michaels was on Celebrity apprentice. I am so glad that he won that money to help find a cure.
I am a 57 year old Type 1 diabetic, had it for 34 years. I feel blessed that I have it and not my 2 girls, the worrying never would stop. I live alone, am a flight attendant and travel the world. My children are burdened with the worry for their mom. If I don't answer the phone, they panic. If I don't check in 4 or 5 times a day, they panic. They hate that I am in Tel Aviv or some faraway place in a hotel room by myself and that someone may "discover my body" when I don't show up for a flight. We joke but I see the fear in their eyes and hearts and I feel so guilty that they have lived their entire lives worrying for their mom. Yes, I feel guilty but also blessed that I do not have to worry about them. Bless all of you parents, and really anyone who loves and lives with us.
well said. How all mother's feel about their diabetic child. God bless
I found myself very emotional reading ur blog. Im 27 and hav had Type1 Diabetes since I was 15. I couldnt imagine what it wld be like to hav a child dealing w/this disease, the constant fear. This gives me sum insight into wat my parents & siblings had to deal w/in dealing w/me. Ive had those blackouts,Ive gone to bed in the evening and woken up in the emergency room,Ive had the seizures;and it is very scary. I dont sleep well @ nite b/c I hav fear that I may not wake up. Sometimes it makes me feel crazy. People who dont have Diabetes or have a close family member/friend who has it don't really understand what it's like. I pray for a cure. Thank u.
You bought tears to my eyes - I had better stop complaining. Been type 2 for 10 years and I am 58 years ago.
May G-d find a cure for this disease, i wish you and your family all the very best
You bought tears to my eyes - I had better stop complaining. Been type 2 for 10 years and I am 58 years ago.
May G-d find a cure for this disease, i wish you and your family all the very best
I am new to this- my 23 month old was diagnosed 3 weeks ago. Our (my) life has changed so much. I find that i can't really be happy cause i am so upset.
Your blog says how i feel and it feels good to hear this from others. I stay so scared all of the time and just can't relax.
Thank you all for your comments and compassion. I wasn't expecting such a response and your comments made me cry. Taram, our son was about the same age when diagnosed. It's never easy but I know exactly what you are going through right now with yours being so young. Hang in there.
May God Bless You and your Family? I've had type1 for 25 yrs. and have lots of the complications,Doctors don't understand because they don't live with you..My husband trys to explain when I have a seizure from a low and the EMT's say noway..Go figure ,I'm a freak to the medical society..So I also have a daughter with it and I know it scares her when things go on and she wonders will that happen to me to :( ,she's been for 11yrs. now ..YES PLEASE DEAR GOD BLESS SOMEONE WITH THE KNOWLEDGE TO FIND A CURE FOR THIS CRUEL DISEASE....AMEN?