We had a great day yesterday. Craniofacial day at NYU. The room packed full of doctors were kind. They smiled. They said she was beautiful. They said what I wanted them to say. Their choices for type of ear, their thoughts on the structure of her face, their opinion of her eyes… I shared their same thoughts. They answered questions before I asked them. They told me again they thought she was beautiful.
When we left, Bo and I both shared the same full-of-hope-optimism that this was THE team. The team that would follow her. That would evaluate her.
As I texted one of my friends how it went, I teared up. Why? Why would I cry when we’d had such a positive morning? I couldn’t put my finger on it so I stuffed my emotions back inside and went on with my day. I’ve cried so much already, I thought, no need to today.
When I got on the subway this morning it was the first time in 24 hours that I’d been alone with my thoughts. Alone for long enough to process what yesterday was. The beginning of our new life. A life where every 6 months a large group of mostly strangers evaluate what is wrong with my daughter. What they’ll change. And where they will list, amongst all the positive things they will mention, how many surgeries they’ll do on her. Sure they’ll never use the word “wrong”. But truly, for us to ensure she has proper confidence we really do need to do these surgeries. And obviously she needs to have ears made.
This is our new normal. This is our life. And it hit me like a ton of bricks. I sat at my desk and cried to my friends. That’s right… at work. Thank God I work with my friends where I can feel what I feel and it’s totally okay to show emotion at work. Sure, people will say it’s still not professional. I just don’t care to listen. I cried because I’m still adjusting. Still absorbing, I realized, what her life will entail. This precious, beautiful baby will have a life FULL of doctors.
I think this is going to be pretty common for me. Probably pretty common for a lot of us who’s babies face similar things to Landon. To cry the day after. The week after. Even a month after. I had held it together quite well the last couple of months- adjusted to the realization that she had a rare syndrome. I had cried almost all my tears. I’d cry only for the really scary days I said to myself. But what I’ve learned is that these days that are reminders of the tough part of this journey are going to be hard. They are going to most likely result in tears. I need to face my emotions when they happen. Not stuff them inside. All that does is leave me at my desk with a pile of tears and red eyes. No fun.
I’ll be honest with myself moving forward. Be honest that this is going to be a roller coaster. I realized that this is still new. I don’t have to be a pro at managing all of these emotions yet. That comes with time.
She is precious. She is smiling and babbling and happy as can be. Looking at her cures all tears. It makes me forget everything that she’ll face. I just wish I could be home every day for that kind of cure for my occasional blues. On that note, I think I’ll go give her another goodnight kiss.