Yesterday, I sat in the Pediatric Geneticist’s office at our local children’s hospital. I listened to the Geneticist tell me what his opinion was for the future of Gigi’s vision and I thought to myself…
I didn’t sign on for this.
We’re riding a rollercoaster with Gigi’s health. We’re dipping back down into one of those 90 mile an hour wicked curves. It is possible that Gigi is going blind. We were told maybe, then we were told no, then last night, I was told ‘possibly’ all over again. Up and down. Up and down.
I didn’t sign on for this.
I thought it as I sat there. I signed on to learn a foreign language for her. I signed on for the possibility of future heart surgeries. I did NOT sign on for deaf/blind. No one ever mentioned that possibility to me. It was never discussed in the medical reviews we did. I didn’t know what Usher’s Syndrome even was before she came. And yes, I am a pediatric Advanced Practice Nurse.
This was not the way this was supposed to go.
How did know one in China know? I wondered. If this is really happening to her, and they’d had her since birth, they MUST have noticed her vision worsening. Why not say that in her file? Were they afraid I wouldn’t take her? What the hell? Whose fault is this? Who can I blame this on? Because this sucks. It’s painful, and life changing, and horrible. And, I’m pissed.
And, I felt this way with Tess.
I did not sign on to bring home a child who was dying. What will this do to my other kids? What about them? There were supposed to be countless options for her heart. Nowhere in her file did it say lung damage. They probably wanted to put the burden of caring for her on me. They probably lied to me so I would have to deal with all this pain.
All of these things, all of these horrible things thought in the first 30 seconds of hearing life altering news.
I’m going to forgive myself for them all.
Because, I absolutely DID sign on for this.
It’s my girls that did not.
No one told Gigi that we would unlock her world with an amazing visual language that she might lose. No one told her that to figure out if she is going blind it would involve poking, and prodding, and painful tests. No one told her that she would need at least two, if not more, open heart surgeries to correct the defects that plague her heart. No one asked her about any of this.
They asked me.
China asked me, will you come? And I said yes. I said yes to ALL OF IT. Even what wasn’t known. And, I know better to think that any of this was purposely withheld from me. Was it investigated completely? No. But, here, in the U.S., where she is my sole focus for medical care at each and every appointment, where we have specialists galore who has unlimited resources, they still can’t figure her out. She was not the sole focus in an orphanage of 400 children. She couldn’t be. They did what they could. Then, they asked me to pick up the torch and run.
I am going to forgive myself the selfish, mean spirited thoughts that come with the shock. I am going to give myself the grace to have a sad day. Then, I’m going to hug my babies close and jump back into the frey where I will fight on for her.
–FullPlateMom, who absolutely DID sign on for this.