Wednesday, January 26, 2011

Yesterday, my little boy, who will be 3 in March, came running out of his room announcing, "broken cracks". This means his beloved wooden train track table, which he got for Christmas had pieces that came apart.
He came to me, and grabbed my hand, as he always does, and said, "Fix, Fwease, Mommy".
We walked down the hallway together, with his little hand in mine. It was warm and soft.

I wanted to find a pause button, just so I could stand there and hold his hand for awhile. I wanted to revel in the wonderful little person that he is becoming. I wanted to ruffle his beautiful blond hair, and admire how perfect he is, for just a moment.

He pulled me into the bedroom repeating, broken cracks, broken cracks.

It took me all of 2.4 seconds to fix the problem. He turned to me, and gave me one of those beautiful smiles. You know the ones, the kind that melt your heart. "Kankoo Mommy", he said.

No, I thought. Kankoo, Bug-less, for letting me be your Mommy. For giving me a reason to smile each and every day. For being you.

His medical condition is one that is life threatening. But as he gets older, the risks associated with it begin to slowly decline. I couldn't imagine him not in my life. His MCAD could take him away from us, but not without a fight.

Our daily fight to keep him means him never going more than 3 hours without food to sustain him. It means never letting him go more than 10 hours overnight without food. It means watching for the signs of illness and lowered blood sugar constantly. He has an intolerance for the heat and humidity of summer in the region in which we live. We try to limit his exposure to illness and germs, while letting him just be a kid. We give him medication three times a day. We are vigilant when he isn't feeling well. We go to Emerg with him, if he has diarrhea and vomiting. We fight with medical staff to get him what he needs when he needs to be in hospital.

And now we have to fight again. With his specialist.

They say they are still learning about his condition, and all that it entails.

We say we won't let our son be the guinea pig. I don't accept what they are saying. And I will fight it.

I wish that he was never born with this condition. I wish he was just a normal kid. But one found mutated gene tells us differently. But just because they can't find the second one, doesn't mean it isn't there.

Will everything in this child's life be a fight for us?
I hope not, because I only have so much fight in me.


  1. (((hugs)))

    Not sure what MCAD is (will google) but I can imagine being in your position... our children are treasures, and it breaks my heart when they have a fever, nevermind a serious condition. :(

    He sounds like a little sweetheart, and I bet you have a LOT of fight in you, probably a lot more than you give yourself credit for!

  2. For some reason we always find the strength we need for those we love - I am sure you will do just fine. As the years go by I hope things get easier for both of you:)

  3. Hey, what are thy trying to do to you? I got your back. Just FYI, my insurance did pay for the DNA testing to determine Hannah's specific mutations (and it really doesn't do anything for Hannah, it is really more helpful for Claire and maybe for Hannah if they want to do preconception genetic testing to make sure an intended Daddy doesn't happen to have same DNA flaws.) Hannah has one really common and one they've never actually seen before at the lab here which gets newborn screening and followups for this and other states. But when we got it pre-authorized my docs made it clear that it might not go through since it didn't do anything in terms of treatment, but then it went through. Didn't do much for my state of mind, really. H is out of the woods and back to day care today. Hooray!