This Terribly Beautiful Life

So after talking with the teens at the last Spinal Defects Clinic . . . . wait . . . before I go any further . . .

The wife does not like the term "Spinal Defects Clinic". I think it is the "defect" part in relation to your child . . . We sat around the other day trying to come up with another term for it while still using the "SDC" part.

I think we settled on "Super Duper Clinic" but we are open to suggestions if you have a better idea!

Anyway . . . .

After talking with the teens at the Super Duper Clinic last week, I started surfing the net and following link after link down the intersecting rabbit trails of the web. I ended up at the Colours Wheelchair site and started checking out what they had to offer (Hey, I'm a guy, right?? I love gadgets and equipment and the like . . .)

And this started me thinking . . . .

All the obvious medical stuff aside, developmentally, Annabelle has been right on track with every other 6 month-old baby with the exception of moving her legs - which of course makes very little difference since children do not walk at 6 months anyway . . . but that mile marker is fast approaching . . .

While we continue to hope and pray for a miracle that will enable Annie to walk, the inescapable reality is that she has very little muscle tone in her legs, her hips are dislocated and we have not seen any "gross motor" movement. Naturally, as a father, I want little Lu-Belle to be as active and independent as any other child her age and so for the first time I began to research mobility equipment for infants and toddlers. I even joined a chat room for the first time (Baby Center.com - Spina Bifida group) and posted my question.

The responses were almost immediate and very helpful . . .

Of course no parent wants to spend the morning researching wheelchairs and mobility equipment for their child - and while the help and encouragement from others is a welcome relief, there is a tinge of sadness that goes with it.

As we get closer and closer to the point where Annabelle will possibly be developmentally different from other children her age (in terms of mobility), I find myself utterly transfixed by the sight of little girls walking and running and playing.

We stopped off for lunch while running errands this past Sunday and there was a little girl about 3 years old in a little green cotton dress running and leaping with her father. I watched her out of the corner of my eye - trying not to let the wife notice my pre-occupation (if I know my wife, she was doing the same thing). It was one of the most heartbreakingly beautiful things I have seen in some time.

It reminded me of a post that I wrote 3 days after we learned of Annabelle's condition (yeah, referring to my own writing as a source of my own encouragement - the circle of crazy is complete).

I still feel that way . . .

Even as I ponder Star Cars and Rabbit Standers and Wheelchairs, I am not in the least resentful when I see other children running and jumping and playing. In fact, I will go so far as to say that I have gained an insight that parents of typical children for the most part do not have - the true miracle which is a healthy, happy and whole child.

One last thought . . .

I attended a private Christan college located in San Diego on cliffs above the Pacific ocean. The entire West wall of the cafeteria where we all ate was floor to ceiling windows and at certain times of the year, the sun would set into the ocean during dinner time.

Although it happened more than once, I will never forget the time that the enormous sun was a golden yellow - like honey. It turned the entire sky and ocean the same color. The entire world was bathed in golden blessing and as the sun began to dip into the sea, the entire cafeteria fell silent. Hundreds of college students stopped their gossiping and flirting and studying and watched in awesome silence as the sun continued it's descent.

As the visible portion of the sun grew smaller and smaller you could sense the swelling pressure of it's audience - like when musicians at a concert finish a truly remarkable piece and there is that moment of complete silence given in tribute and reverence to something greater than ourselves before the applause begins . . .

As the last light of day winked out there was a pause, a beat and then thunderous applause - hoots and hollers from all corners of the college cafeteria - giving praise for a moment in time that they will never capture again.

THAT'S what it feels like when I see a little girl running and playing - It makes me want to stop and weepily applaud for the sheer beauty of it all.

So to repeat an earlier post . . .

If you have beautiful, healthy children - take a good look today. Just watch them for a minute or so and marvel in their simplistic beauty and perfection. Then wrap your arms around them and pray for Annabelle.

This really is a terribly beautiful life . . .