Friday, July 17, 2009


A couple of weeks ago, I had the amazing opportunity to converse with someone who'd also had a much different baby-arrival experience than expected. She shared, and I shared, and it was so good, but hard too, to revisit memories that were so painful and life-changing.

It brought back all the moments that were merely (barely!) survived in the first year of Sweet K's life. Even now, with kids and life and rough nights and activity, it took days to process it all over again. Moments to cry, quiet times of gratitude, soaking in the goodness of the "now". I suspect, every year around this time I will move through this cycle - a time to reflect, recollect and reconcile myself with the upheavals of life.

On the 3rd day of Sweet K's life, our caregiver noticed that her head circumference was measuring small. Not just small. Too small. Immediately we hooked up with a pediatrician, but it was about 10 days before we could meet with him. In that in between time, she was so... normal (I hate to use that word, but for lack of better description...) that we really didn't suspect anything was ... different.

The day of her first doc appointment, the world was as right as rain. It was a gorgeous July day, we were off on a family outing, and we, by God's grace, had no idea of the impending life storm that was about to be unleashed in our lives.

Time is such a funny thing. It can seem to stand still, spin wildly out of control, continue moving all around you - all while you are trying to absorb a single moment. The moment of initial diagnosis; the moment that completely turns your world upside down. The explanation of doctors visits, specialists, tests that would fill our calendar for the next year. Sleep deprived, strained, adjusting to life changes - I went numb, yet felt so much pain, that if it hadn't been for the fact that breathing is a reflexive action, I would've stopped completely.

We came home and "googled" microcephaly for the first time. The results were terrifying. So many possible conditions and life expectations loomed large and loud. Aside from the ocassional spoken word, all I could hear was the sound of the pounding in my ears.

And so, we prayed. From one second to the next, through each appointment, and all the waiting and wondering in between, I talked and cried (and cried and cried) and laughed and simply sat with God. What would He allow? What was coming our way?

Only a few short days after K's initial appointment, she went through xrays to see if her sutures had fused prematurely. All clear. No surgery required for now. This continued periodically until she was 9 months. Everything continued to grow beautifully.

A day or two following, she had an MRI, which was horrifying, but here too, God was present. Placing my newborn into a machine that looked like it would eat us all alive was soooo hard, but God's presence brought comfort in the pain. On our wedding anniversary (July 24) we received the fantastic news that her brain was fully and beautifully developed, just a bit smaller than average. This ruled out several scary diagnoses, and we celebrated long and hard!!!

A visit to the geneticist office. A gracious and encouraging person. A few ideas about diagnosis, but so comforting - yes there may be challenges, but we were spared some of the more intense ones.

A meeting with a neurologist. Again, yes, there were things to keep watching out for, but no signs of specific abnormalities. Unless there are unexpected complications, no need to visit again.

And on and on. And waiting, so. much. waiting. That is the hardest part, I think!! Possibly hip dysplaysia, no. Heart condition, no. Blood tests for a possible condition that is usually accompanied by tumors and cancer. No. We met so many people. The kindest nurses, doctors, (some not!!) and the most amazing conversations emerged.

Bottom line - primary microcpehaly is a condition that affects that size of brain growth. Mild development delays and learning issues are most likely, but not a guarantee. Sweet K is literally one in a 1,000,000. This is a very rare condition, as most kids born with MC go on to have a host of health and development issues. She fits into that (extraordinarily) slim category where there are no further complications.

Given a life "wish book," I'd never had selected this experience to walk through. It was excruciating at best, completely unnerving at worst. But again and again and again, the LORD taught me lessons of surrender, how to wait under His protection, and finding myself opening up again to His love in the hard stuff of life.

I am so grateful. Sweet K is a spunky little peanut who brings such joy. Except, when teething, when she is a terrible sleeper. Any suggestions!!!? I'm really tired of being awake half the night!!! :).

I read a line the other day (and "googled" it but it is lost 'out there' somewhere!!) that goes something like...
Life is composed of memories, not milestones.

So true, so true. And in these ordinary memories of life, we find life abundant.
Ordinary Miracle, Sarah McLachlan


Anonymous said...

Oh, that is a beautiful post! Sweet K is DEFINITLY 1 in a TRILLION!
I'm glad you're looking at this 2 years down the road, but I know that it seems like just yesterday. You are an awesome mom,and often my inspiration!

Roo said...

beautiful. again.


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