Thursday, July 29, 2010

Doing What Is Best For THEM

Advocating for your child in the world makes perfect sense. We do it every day. We advocate for our children in daycare, school, sports, the medical world and plenty of other places. As much as people out in the world may like your child or even care about them, it’s not their job to take care of things and to be sure your child gets ALL that they need.

I am fine with this. It really doesn’t faze me. I am used to it, and I am good at it.

What I am not ok with and what I am not so “good at” (read tactful at) is advocating for my children within my family. I may find it mildly frustrating when interacting with friends or acquaintances who don’t really “get it,” but when I have to advocate for my children within their own family I find it downright offensive.

No, I don’t expect anyone else (not even family) to have done the research – the countless hours spent reading medical journals and having to research the research just to grasp what it is saying. What I can’t seem to understand though is being treated by my own family the way the doctors treat me – like a hyper-vigilant, hypochondriac, who just needs to let go of control. Oh how I wish it were that simple. How I wish I could just give them food and it would all be ok.
No. This is not so simple.

BabyM and BabyR have something called Food Protein Induced Enterocolitis Syndrome (FPIES). No I am not making that up. This is ONE of their diagnoses. What does it mean? Who knows what it means. No one knows what causes FPIES. It could be very bad – or they could grow out of it. What is the worst case scenario with this FPIES? Well there are those kids who eat a food – react to it – go into shock – AND DIE. That is possible with FPIES. No it is not common, but it does happen. If death is the worst case scenario one can only TRY to imagine what the more common symptoms of the disease are.

One phase of the waiting is over. All the blood and stool tests came back normal. Now phase two of waiting begins. We schedule scopes for them both – endoscopy and colonoscopy. – and then we wait some more for the results.

Crohn’s Disease? Inflammatory Bowel Disease? Eosiniphillic Gastroenteritis? Ulcerative Colitis? No definitive findings?

I know God is in control of this. I know HE is the great healer. I just ask for those who don’t understand to ask questions or simply trust that we have done (and continue to do) for our children what they needed us to.

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