Saturday, October 23, 2010

A Harsh Reminder

This week I was harshly reminded of how terrible Type 1 diabetes is. I was reminded by a little girl named Eilish. Eilish passed away in the middle of the night because of a disease that she and my son shared.

Most days I'm able to push diabetes to the back of my mind. I count carbs. I help with boluses. I adjust basals. I monitor sugars at half time of soccer games. I ponder what to do about that 2 AM sugar that is a little on the high side. But, somehow, I keep the "bad things" at bay. All the "what ifs".

The first thing I do when I wake up every morning is tiptoe into Riley's room and listen for his breathing or watch for his chest to rise. I've been doing it for 5 years now. It's become somewhat of a habit. I think I had convinced myself that he'll be OK. He's been OK for 5 years now.

But, the story of this little girl, this girl with so much life left to live, has brought all of the "what ifs" flooding back in. I haven't slept well in 5 years. I get up at least a couple of times a night to check Riley's sugars. But, now, my sleep is tempered with something else. My brain seems to be on alert all the time. I can't quite rest. I've had several fitful nightmares where Riley was in a coffin.

It's horrible. I hate this disease. I hate it with a passion. I hate that it can rear it's ugly head and anytime steal away what little bit of peace I had made with it. I hate what it makes Riley have to do on a daily basis. I hate the little black dots it leaves on his fingertips. I hate how it alters his moods. I hate what it did to Eilish, what her parents must be going through. And, I hate that I cannot be sure that it will not happen to Riley.

Yes, it's a harsh reminder that no matter how much you convince yourself that everything will be fine, it's just smoke and mirrors. It's just a way to get yourself through each day. A way to cope with a disease that you are helpless to make go away.

My heart is broken right now. I haven't felt this way about diabetes in a while. I had stupidly convinced myself that everything will be fine. And, this story reminds me that it may not. This story reminds me how fragile life is and how we really don't have the control that we think we do.

The only thing I can do is hope and pray for a cure . All of my fundraising efforts go toward
Dr. Faustman's research.

I will do what I can. I will pray for this family. I will pray for a cure. And, I will hope and pray that Type 1 diabetes spares my son from the same fate.

12 comments:

Wendy said...

"I hate that it can rear it's ugly head and anytime steal away what little bit of peace I had made with it."

This statement totally hits home for me. Just when I begin to feel confident, something happens that reminds met of how little control I really have.

Reyna said...

The "invisible-ness" of this disease is like a double-edged sword. On the one hand I am thankful for it...b/c Joe can run, jump, and play, unnoticed...on the other hand, it gives the public an inaccurrate perception that we "have it under control"...we don't. Diabetes can kill. It can cut lives short.

Hi, My name is Reyna. I found your blog through My Diabetic Child's Blog Roll. My son Joe (7) was diagnosed 4 years ago. Good to meet you.

Penny said...

Wendy, I always feel like just when I think I've got it figured out that diabetes throws a curve ball and makes me feel helpless all over again.

Reyna, nice to me you too.

Laura said...

I know exactly how you feel. I hate diabetes today.

Anonymous said...

I have always been aware of this possibility which is why I check multiple times at night. But I had become complacent. The only thing I can do that I haven't already been doing is to raise the blood sugar target even more when I finally turn in for bed. A slightly higher A1c seems sensible now, considering the alternative. Even then, there is no guarantee. What a nightmare this disease is.... How will they keep themselves safe as adults when they have to get up for work the next day?

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Retinopathy Diabetes said...

Its really so sad...

rhinoplasty los angeles said...

Difficult to see your children go through the messy and painful disease.There are a lot of food restrictions which take away a major happiness of childhood,but that is the way to good health leaving no much choice.

Sandy said...

I have the same hate for the disease. I feel for ya as I deal with the same frustrations

canadian pharmacy viagra said...

This statement totally hits home for me

Hypatia said...

i just found your blogg. My son got diagnosed for little more then a year ago. It's good too read that we are not alone. I don't like reading people saying "it's no problem having diabetes", even when they have it themselves. I have tried to accept this decease, but yes I hate it!! And now my son probably also has celiaki :(

Anonymous said...

I was diagnosed with Type 1 diabetes at age 30, right after finishing my PhD and looking forward to an academic career. Despite the age, it was type 1; my blood sugar was 858 and I went into a coma with DKA. This was in 1996. Life changed forever and will never be the same. I did not grow up with this, but it feels like I have always had it.
Although I have not had any complications, fortunately, I can agree with everything you have written in this wonderful blog. Diabetes can sometimes make you feel like screaming. No cure, just "manage it". Expensive insulin and test strips, no leadership in the White House and nobody seems to give a rat's ass. I especially feel for the children; a friend of mine has had it since she was 3 years old. Explaining this to people and putting up with some of the comments can wear you out.
One thing I wanted to share: if you run your child's finger under hot water at the sink ( I learned this on my own), it speeds the healing process and it really helps not to leave black marks on the fingers. I have tried it and it works! Also, use a lot of really good quality hand lotion on the fingers; rub it in well every night. I know they say to use alcohol wipes before pricking for a fingerstick test but I don't; I just wash my hands. Alcohol dries out the skin and makes the marks worse and the pain worse. The medical profession does not know this because they do not have to live with it!!