I met with the first of two hand surgeons on Tuesday. He was honest, helpful, and blunt. He has done the surgery before – but he can only give her 4 fingers, not 5. And the fingers she will have will not be much more functional than they are now. He told me to skip the other surgical consult and go to Texas.
I finally reached someone from the Craniofacial Center in Dallas. After explaining my struggles to find adequate care here for some of her needs she asked me for my insurance information. I told her Poppy had state coverage. She put me on hold to check it.
When she returned to the phone she said “I’m sorry, we don’t work with that carrier but there are other places that might be able to help you and I have the number for an organization….” and on and on and read off three different phone numbers and just kept talking. She finally asked if I was still there. All I could muster through my closed, bone dry, choking was “I don’t have a pen.”
I had to hang up because I was sobbing.
I regrouped and called back. I apologized for losing my composure and asked her right out “Aren’t you the best?” To which she replied a hesitant, but sincere “yes.”
The phone call lasted quite a while longer with a few more sobbing episodes, a small bit of laughter, a dollar amount for the “out of pocket” consultation, and a date.
January 17, 2013.
There is a (slim) possibility the hospital will accept her insurance but the clinic itself and it’s doctors and team (anesthesiologist, nurses, etc.) do not. I cannot yet fathom the price tag of just one of these hand surgeries… let alone the two that she needs, nor can I imagine what any of the other future surgeries and care will cost – but what else am I to do? If someone is going to have my perfect-as-she-is daughter under the knife for a hand surgery it had better be to give her 5 functioning fingers. Otherwise, what is the point of even going through with it?
So now I figure out how to get to Texas. How to raise funds for her first surgery. And how to keep breathing through it all.
I know you’re supposed to say that you wouldn’t change anything about your children. I know that Poppy wouldn’t be Poppy without Apert syndrome. I know I am supposed to be strong and just keep trudging through like a champ.
I would change it. I would change it all. It isn’t fair. It isn’t making me stronger, her stronger, or anyone any stronger. It’s testing our strength, hurting our hearts, and stealing our joy. I never could have imagined this – it truly is unimaginable.