Tuesday, August 2, 2011

That moment.

I have come a long way since that first time we heard about NF. My fears rarely overtake me anymore. I can get through the day without NF being a thought in my head most days. And even on the days I think about it, it is much less overwhelming.
Every now and then I have a moment where it all smacks me in the face at once. The feeling doesn't generally linger long, but just enough to make me feel like shuttering a little. The other morning as I was getting Abigail dressed I noticed a new cal spot on her and some more freckling. In the grand scheme of thing, these mean nothing more than 'she has this disorder.'

But for some reason that morning I was sitting in a doctor's office at Riley again watching the resident counting her cals. I was listening to him tell us this big word over and over again, and talk about tumors. I was hearing him try to reassure us that she would be fine, but feeling like I just needed to get the hell out of there. The moment passed quickly, but took me a few days to completely shake that feeling of dread and terror that comes over me when I remember hearing neurofibromatosis for the first time.

In all of those moments though I keep coming back to knowing that God has something specific planned both for Abigail, and for us being Abigail's parents. Her coming to be our daughter just lined up so perfectly that there can be no other explanation. And we had sat and discussed, read, and researched numerous special needs before Abigail was born. We talked about HIV, Down's syndrome, cerebral palsy, and drug and alcohol exposure. We discussed autism and on down the list of things I have dealt with as I have worked with numerous people with special needs. Never once did NF come up. Neither of us had ever even heard of it.

So while I wasn't surprised that we somehow managed to end up with a kiddos with lots of special medical needs. I had this nagging feeling that the having a child with NF was something that God lined up for some unknown reason. I wasn't sure if we would ever even find out here on earth.

Last night I sat next a little girl on the couch at the home of a family from our church. This is a large family (I think they have 9 kiddos at home) who had just had a baby. I had brought a meal and was holding their new sweet little one. I asked the little girl about the band-aid on her arm. She replied very nonchalantly she had an MRI that day. When I asked why she told me she had a bump on her head, and then proceeded to pull up her shirt to show me the 'brown spots' that she also had.

I nearly fell off the couch (and had to quickly remind myself I was holding a baby). I didn't know what to ask next because I wasn't sure how much the family new. The mom proceeded to tell me that the dad has been diagnosed with something called neurofibromatosis a few months ago.

I knew immediately in my heart of hearts that we were chosen for Abigail to walk through NF hand and hand with this family.

In a church of around 100 people, there are two families who are dealing with a disorder that is statistically 1 in every 2500-3000 people. Unbelievable. I thought again about sitting in that doctor's office a little over two years ago. This time it didn't bring that sense of dread and doom though. This time it brought that feeling of seeing God's hand at work in the lives of every last person, lining things up perfectly to bring himself the glory!

Enjoying seeing things from a different view,

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