Monday, April 22, 2013

Someone I Love Needs A Cure

It was Easter Sunday, 2013.  My daughter had been feeling lethargic for a few weeks and complaining of a chronic sore throat and dry mouth.  She seemed okay, though.  We thought maybe it was mono or something.

That morning we hunted for Easter Eggs and she sang in church with her brother.  That afternoon, she took a long nap.  Then another one.  At dinner, she only ate a couple of bites and said she "felt weird."  Despite sleeping most of the day, she went to bed.  Around 1:30 in the morning, she came into our room and could not stop throwing up.  He moaned and wailed with terrible stomach pains.  We worried she might have eaten something that disagreed with her -- maybe some bad candy or something at breakfast.  She knew, on some subconscious level, it was something else.

At one point, she turned to me and said, "Daddy, I'm not going to die, am I?"

I replied, "Of course, you're not going to die, sweetheart."  I was very close to being very wrong.

In the morning light, we saw a girl who looked like a ghostly version of our daughter.  It was as if she lost fifty pounds overnight.  Her skin was a pale gray, her eyes and cheeks were sunken and dark, and her speech was starting to slur.  She looked like she'd been in a concentration camp.

A couple of weeks earlier, my mom had noticed that our daughter was constantly thirsty and going to the bathroom a lot.  She thought our daughter might have diabetes and we should get her tested.  We planned to take her in for testing on Monday, April 1st - the day after Easter.

When we saw how sick she looked, we knew we weren't going to get her tested.  We were taking her to the emergency room.  My wife rushed her to the hospital while I made arrangements for someone to stay with our son.  Apparently, on the ride over, my daughter started to roll her eyes into the back of her head.  She was losing consciousness.  My wife talked to her, begging her to stay awake.  They reached the hospital to find it was under renovation.  There was no obvious way in.  When my wife found a place to park, she had to carry our daughter on her back -- she didn't have the strength to walk anymore.

As soon as they made it inside, the nurse at the front desk recognized the immediacy of the situation.  The staff rushed our daughter into the ER, ran a quick test, and found that her blood sugar was at a critically high level.  She had what's called Diabetic Ketoacidosis (DKA).  Our doctor eventually told us if we hadn't been home, if she had been alone for another couple of hours, our daughter would have died.  She knew.  That night, she knew her body was shutting down.

Fortunately, we caught it in the nick of time.  Within an hour, the color and fullness came back to her face as she lay sleeping in the hospital bed, hooked up to an insulin drip.  Later that day, she was transferred to another hospital that had a PICU (Pediatric Intensive Care Unit) equipped to care for her properly.  She was in the hospital for three days.

In that time, we learned a LOT about Type 1 Diabetes.  We went through the initial stages of blaming ourselves.  But we knew that even had we had her tested a week earlier, it wouldn't have stopped her from getting diabetes.  It just would have saved us the frightening trip to the hospital.

We also learned just how many people we knew who had Type 1 Diabetes or were affected by diabetes.  Emotional support flowed to us in waves and I have never been so grateful for the kindness of friends, family, and strangers.  A friend of mine even wrote a "get well" song for her and several of my Disney friends performed it, recorded it, and sent me the file to show her in the hospital.  She lit up. My wife and I were overcome with tears of gratitude.

I have also never been so proud of my daughter.  She handled everything with aplomb.  She accepted her situation immediately.  Of course, there were bouts of disappointment and lamenting that it happened.  But she knew there was nothing she could do about it. This was her "new normal."  She took it on bravely and immediately.  Twenty-four hours before, she was deathly afraid of needles.  That went all went away.  Without fear or complaint, she started giving herself her own insulin shots -- and she does this four to five times a day.  She watches her carb intake, she manages her own insulin, and she even prepares a lot of her own food.  I'm not just proud of her, I have a respect for her I doubt she'll ever understand.

I am amazed at the sheer number of people who live with Type 1 Diabetes.  I don't say they suffer from it.  Because Type 1 Diabetes is a manageable condition.  People live long, full lives with it.  It doesn't define them.  It doesn't control them.  What amazes me more are the strides being made in finding a cure.  Every day, we get a little bit closer.  But because this has touched me on such a personal level, I am wholeheartedly throwing myself into the quest for a cure.  I would love for one to be found in my daughter's lifetime.  I would love for one to be found in anyone's lifetime.  It's a subtly frightening thing to be insulin dependent for the rest of your life.  No one should have that fear.  And I certainly don't want anyone to go through what we experienced with our daughter that ironic April 1st.

That is why I am donating a percentage of the profits of all my book sales to the American Diabetes Association.  So know every time you purchase one of my books, you are helping to bring a cure for diabetes that much closer to reality.

From me, for my daughter, and for everyone who lives with Type 1 Diabetes, thank you.  From the bottom of my heart - thank you.