So, as I sit here-I need to remind myself that I cannot, cannot, cannot put the cart before the horse. We were at the pediatric opthomalogist's office last week for follow up on Keelin's lazy eyes and this rockstar doctor went through Keelin's history again trying to pinpoint an underlying cause for Keelin's obviously related neurological issues. The hypotonia, the Apraxia of Speech, the lazy eyes.......To make a long story short, she suspects there may be a metabolic disorder along the lines of L-carnitine deficiency. I thought this was funny becasue when we did all the genetic testing with Keelin at 15 months, Keelin's bloodwork came back deficient for L-carnitine both times. It was attributed to the GERD, though. Keelin's doctor has a call into her geneticist to explore this possibility further as she presents with other symptoms of this deficiency.
When I came home from that appointment, of course I consulted Dr. Google. Bad idea. L-carn deficiency is manageable, not curable and puts her at risk for all kinds of awful things (stroke, heart problems, sudden death.......ummm yeah-that's what you want to hear). I felt a very familiar sense of doom that I had not felt in months (which is a long time around here). That doom came rushing back to me and I was instantly reminded of the last two years that we have spent in hospitals, specialists offices, operating rooms, getting brain MRI's and wondering what's next with our girl.
I have been thinking alot about the return of that familiar dread and reminding myself again that I have to live in the moment and not in the "what if". It is counterproductive in life and especially in Keelin's case. I could make myself CRAZY!
What also sits with me lately is that it was so nice to be just her MOTHER. Not her medical detective. Things seemed to be settling down on the medical front and the anxiousness replaced by a feeling of acceptance. But new answers or potential answers bring new concerns. Her life so far has been measured procedure to procedure. Kris and I reference the passing of time in her life by what specialist she was seeing, what procedure she was having. I suppose it happens this way for some other folks, too. It seems both natural and unnatural at the same time. My son's life has not been measured this way.
So for now, we wait and I put the potential pitfalls in the back of my mind. They are only potentials-not absolutes. I won't let an errant mind trample my sense of well being. It isn't worth it. One foot in front of the other, dilligent steps and an observant eye for what is good in this world. There is a LOT of good in this world, this life- my daughter's smile being pretty far up the list. No carts, no horses.......only patience.
