Updates and a Fix

It has been a weird few weeks. I had surgery this time, nothing major (double epi-gastric hernia repair, thanks Biscuits), but I am not to lift anything over ten pounds for four weeks which is a bit inconvenient with a sixteen pound girl who needs her mother’s hold for all mobility…

And then, another trip to the orthopedist this past Wednesday brought news that Willa will need surgery again. This time to rebuild her stubborn hip that will not mend on its own. Soon my restrictions will be over and good timing as poor Biscuits will be in a body cast for six weeks following her surgery. A 15 month old in a full body cast during the height of summer. Should be glorious, not to mention laundry fresh…

It’s a good time for it however. Her heart has been stable. We have managed to put some weight on her. She has been doing incredibly well since her December scare and so I stood there when I got the news and nodded with a new abandon, or resignation. I had been waiting for the next thing.

But something new happened. This sense of resignation had a ring to it. It was not soft or lifeless, quite the opposite. It felt metallic with light glinting and a steeliness I have found in other parts of me as well. This is to be our lives. This news will keep coming. I am finally, bit by relentless bit, learning to pace myself. It was the first trip to this doctor I felt no pain.

Another new happened as well. This is a surgery that should “fix” the problem. It surprised me. Fix? I had never contemplated this possibility with Willa before. Nothing has been fixable: not her heart, not the eating issues, the sleeping issues, the growth, the Costello. We can fix her hip. What a strange concept.

My daughter is not fixable. Costello has no cure. Her very genetic material is different and no pill or treatment can rewrite what nature decided to give her. I’m cool with this. It makes her who she is. An abandon, a resignation. But again, liberation. No hunting for the impossible, no hope for something that will never happen, no confusion over who sleeps in that crib upstairs. Willa is Willa.

So we have the surgeries. Some fix, others don’t. We know more are to come in our future however long we are fortunate to have one. I’m ready. All fixed up myself and trying not to lift the child that is the motivation of all my movements these days. Her hands are still on the levers. But increasingly I find that my hands cup hers, guiding more and more our flight.