Saturday, April 23, 2011

Why I'm ok with Cupcake having MCADD

I am strangely thankful that my child has MCADD.

It's a weird thing to say, but I think without this diagnosis I would not be as appreciative of all the positive things about my baby.  As I sit there frustrated some nights because Cupcake has woken up a fourth time to nurse, I can stop and be happy that I can hold her and nurse her.  I know that not everyone can do that, and I'm grateful for every moment I can spend wit her (yes, even those in the middle of the night).

Getting this diagnosis has exposed us to a world of families dealing with rare diseases, most of them much more debilitating and symptomatic than MCAD.  It's scary what's out there, and people cope with it the best they can.  Before MCADD was included in the New Born Screening, it had up to a 25% mortality rate, and was to blame for some SIDS cases.  Reading about all the parents who have lost a child is a sobering moment, and my heart goes out to them.

If Cupcake hadn't been diagnosed at birth, I couldn't possibly appreciate just how lucky we are to have a healthy child.  I marvel at the fact that she responds to me, that we don't need daily medications, that her future physical and mental development is not compromised, that she's not in current pain.  These are things that I would have taken for granted if she didn't have MCAD disorder. 

I know I complain about her sleeping habits, her foul smelling poops, her crankiness when I'm trying to get things done.  And I understand that being frustrated about these petty issues is a luxury.

Sometimes, when I look at how well she's doing, I am overcome with gratitude to all the people that fought (and are still fighting) for mandatory newborn screenings.  We've kept her from going into fasting, and are extra attentive during bouts of illness, and I'm not sure if we would have been so cautious had we not known about her condition.  She's going to be just fine, thanks to all those who paved the way.  I hope, as she gets older and I have more flexibility on my schedule, to give time and energy to the cause as well.

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