Wednesday, February 20, 2013

Aiden's One Year Diaversary

February 20, 2013

Aiden’s Diaversary

One year ago today, my splitting heart was torn in two when the pediatrician called me early on Monday morning confirming my worst fears.  In my heart, I knew what I was going to hear, yet I had hoped I’d be wrong. (I don’t usually like being wrong).  When he said, “Get Aiden to the hospital now; they’re waiting for you”, I fell to my knees and shook.  How could this be happening?  My perfect, healthy, smart, beautiful seven-year-old little boy was formally diagnosed with a lifelong illness.  We spent three days in the hospital stabilizing him and learning about how to treat his Type One Diabetes. Fortunately for Aiden, we’d caught his disease relatively “early”, so he wasn’t as ill as many children who present.

One of the most common things I heard was, “Well, you’re a nurse.  You can do this.” “Or, who better for this to happen to.”  I can assure you, I’m a nurse.  I’m educated, and I like to think I’m reasonably intelligent.  So, on the “educational” front, that did make it easier.  However, in no shape, form, or fashion do I think we “should have” this disease because I’m able to “handle it”.  There are days I don’t handle it well at all.  Why?  Because, I don’t care what my career is, I’m a Mommy FIRST, and my heart hurts when my babies are hurting.  Knowledge is power, but it doesn’t make accepting this stupid disease any easier!  Hearing the words “He has diabetes” ripped my heart completely in two, and no education or profession made that pain any easier!  Having a medical career does not make being a substitute pancreas any easier.

I felt hopeless and powerless.  I’m a “fixer”, and this hard-working Mommy can never fix this for her baby.  I can’t take his burden away.  That’s a tough pill to swallow.  This is certainly what I hate the most…  The worry, the fear, and the fact that Mommy can’t fix it. If I could take this disease away from Aiden (and Asa), I’d put the burden on my shoulders in no time. 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.

Life sure as hell isn’t fair. It’s not fair that this 8-yr-old child now has to worry about “catching low”, checking his blood sugar, counting every single carbohydrate he consumes, and taking injections for insulin….the one medication that sustains his life. No child should have to worry about such things.  He should be all about Star Wars, Angry Birds, Bicycles and puppies.  And, he is; he’s still a little boy, but he’s a little boy who has to worry about grown-up problems, too.

That wound in my heart has healed, but the scar is weak.  I think it may always be. Facing this day is bittersweet, and it’s causing that scar to bleed.  I’m so happy that my baby is alive.  He is growing.  He is funny. He is healthy.  He is smart.  He’s ok.  In another day and time, he’d be dead by now.  He would have starved to death despite having adequate nutrition. That’s very humbling.

Yet, I still find myself mourning for the days when he was completely care-free. Some days are great, and some days I’m not ok.  I feel resentful when I have to stop in the grocery store and read EVERY package and wonder how EVERY item I buy will impact his blood sugar.  I feel angry that I HAVE to buy certain items that I would not have ordinarily purchased simply because I need them on hand to treat low blood sugars.  I feel stupid being in the “Diabetes section” of the pharmacy looking at supplies (Isn’t that section for old people only?)  And, I feel frustrated when I have to pay MORE taxes AFTER paying $9000 in 2012 in medical expenses.  Some people leave it to the government to provide; we provide for ourselves and they still want more!  It’s exhausting to get up in the middle of the night to check on the boys.  I feel frightened when they oversleep and I just KNOW they are in a coma. Thinking about this every day is very much an emotional roller coaster!

I'm feeling like a Monday today, but someday I'll be Saturday night!

In this first year we have learned so much, and we have adjusted our lives to accommodate Diabetes.  He’s a demanding ASS, that’s for sure!  Trying to be optimistic, I can say that my family is fine.  My son is fine.  My marriage is stronger.  And, we will be ok.  Year One down… many more to go? Will there be a cure in his lifetime, or will he grow to be an old man with this?

So, today, after getting a quarterly blood draw that this sucktastic disease requires, we’re going to celebrate.  We’re going to celebrate that Aiden has not been re-hospitalized with complications. We’re going to celebrate that he has been so big and brave in accepting his diagnosis. We’re going to celebrate how much we’ve learned.  We’re going to celebrate that it’s not worse (although it could be so much better).  We’re going to celebrate that we live in a day and time where treatment is available and a cure is on the horizon. And, through the tears, we’re going to celebrate that my baby is still alive to live a full life! 

I think we’ll celebrate with some ice cream!


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