Thursday, December 19, 2013
big (somewhat scary) news
Ainsleigh's follow up to the follow up hearing screen was this morning. Ainsleigh can hear well in her right ear, but she is severely to profoundly deaf in her left ear. When we were in the hospital and she failed to pass her hearing screen I said to J, "Hearing loss? We can do that. She's alive." And yes, we can handle this, just like we handle B's allergies, but there is a lot of information coming at us right now and I'm very overwhelmed.
I knew something was wrong. I had the same feeling as when Charlotte died. I went into the appointment expecting bad news, but when two audiologists came in and quietly leaned forward to deliver the diagnosis it still hit me hard. One of the audiologists reached forward to touch my knee and I thought, Oh no, not the gentle pat! I've been on the receiving end of the gentle pat/arm squeeze far too often.
Then it was a whole lot of words and phrases: There is a 30% chance she will lose hearing in her other ear, we have to be careful with ear infections, she needs early intervention so she doesn't struggle later on, she won't be able to hear well from a distance, it is recommended that you schedule appointments with an ear, nose, throat doctor, a geneticist and an eye doctor ...
And there I was rocking Ainsleigh in my arms in the small, dim room saying, "After what happened to our first we can do this. We can do this. I know we can do this." That right there is the sign of someone who is doing really well emotionally ...
Now I'm trying to regroup a little and process what we've been told. I'm sitting in a pile of phrases and concerns, thinking about the next step and how exactly we are going to handle this thing I'm so certain we can handle.
I put the news up on facebook - as you do- and all of these wonderful messages of support came flooding in. And while I appreciated every single kind note part of me wanted to say, it's okay! no sympathy or empathy or kindness needed! Ainsleigh is alive, I'm not complaining, I'm happy, all is well!! But living like that is exhausting. I want the support, but I don't feel like I have a right to it. So there is all this lovely support out there and I can't claim it because she's alive (I know that's irrational).
I think I want someone to tell me it's okay to struggle with this. That it IS hard and it's okay if I fall apart a little bit. That it's not over dramatic or over wrought or over anything. I know hearing loss in one ear is not a big deal when you have a dead baby in your parenting history, but it is BIG. It is a huge issue to work with. It will affect her whole life. And there's a part of me, way deep inside, yelling, WHAT IS WRONG WITH MY BABIES?!
When I got in the car after the three and a half hour appointment this song was on the radio:
It was a good reminder. It helped me to turn away from the "why us" question and lean into my faith. We are not alone. We have a great big God who has sustained and carried us through good and bad, and we have a community of support and love that lifts us up. Twice this week I rushed out of my house to appointments, leaving B in very capable hands, and both times I returned home to dishes washed, laundry folded, and a happy toddler.
There will be more appointments. We don't know why Ainsleigh's hearing loss occurred, or how to proceed, but those appointments won't happen until the new year; hopefully we will gain insight and learn how to help Ainsleigh. We're going to need some help. I'm probably going to fall apart a little bit.
When we were trying to ascertain what was going on with Bennett it took time to figure things out. I felt lost, angry and confused, but now I've adjusted. Watching what he eats and making most of his food from scratch is part of the routine. I just need to adjust. Get used to adding this information in, learn this particular language.
All of my ideas about being a mother and the way parenthood was going to be for me went out the window when Charlotte died. I can adjust a little more. I can get used to the idea that I mother a dead baby, a child with allergies/intolerances and a baby who has unilateral hearing loss. I'm stress eating like it's my job as I adjust, but I have healthy coping mechanisms too. Like this space. When I got home I put a show on for Bennett then sat down and paid attention to the clattering voice in my head that demanded I sit and write a while.
And it worked. I feel a little better already. Thanks for listening.