Friday, March 20, 2015


Today is a day where my perspective  on parenting, and life in general, makes it hard to relate to other parents with "normal" kids.  Generally I don't feel this way because no one wants to see their kid upset or hurt.  And most days, despite my perspective, I can feel for parents who are stressing over common parent worries or stresses because I feel those things too.    But I would give anything for my kid to be upset or hurt simply because he's getting vaccines or is teething or is cranky because he didn't sleep well. For us though, it's because he's spent 70+ days in the hospital, he's been "poked" for lab work more than 130 times, etc.  Because of that perspective, it is sometimes hard when I see other parents having a hard time watching their kiddos receive vaccines.  A quick shot?!  Seriously?  My baby has been cut open from limb to limb THREE TIMES.

So why am I feeling like this today?

Megatron started vomiting again 2 weeks ago.  We were attempting to reintroduce foods and it appears it has failed.  We eliminated the foods again but the puking has increased.  It's been 5-6 times daily for the last 4 days.  We spent another frustrating 2+ hours at Children's today, no closer to understanding what is wrong.  We have a diagnosis, two actually, but we don't know why.  They can't treat it unless they know why.  It is so rare that there isn't a lot of information out there about it and it has everyone stumped.  No, this isn't just about the puking.  He's had wonky lab work since October.  His liver looks great, it's his white blood cells that are out of whack. And leaving this untreated can cause damage to other organs, the heart especially.  After living through an organ transplant with Megatron, when I hear a doctor telling me there is something wrong that may cause damage to his other organs, I suddenly feel like I can't breathe. There are a couple rare causes that require more invasive testing.  We've tried to avoid it because no one wants to put him through more than he's already been through but it looks like we may have to go that route.

Today, I have no patience for petty problems.  Today I have no sympathy for people going through normal childhood ailments with their kids. Instead I'm frustrated that my child has done "rare" from the day he was born.  Everything that has been wrong with him has been so rare we've had to go out of state for treatment.  It's so rare that we now have FIVE doctors (8 if we count the entire Pittsburgh team).  And none of them quite know what to do.  That's unsettling.  And frustrating.  And has me feeling lots of hatred towards all things liver disease.

I know this will pass.  I feel strongly that we will get this figured it out.  Not today, not tomorrow but someday.  And then I can go back to pretending I'm a normal parent and can commiserate with other parents that our kids are teething or won't eat their dinner.

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