Hi baby girl.
How are you doing? What have you been up to? I can almost hear you teasing me, “You know how death is, Ema, I’m really busy.” I know I don’t need a reason to write to you, but you probably already know there is one. My brain has been stuck on repeat these past two weeks, and yesterday it all came crashing down. So, I decided it was time to write you a letter.
When you were born, you spent eight days in the NICU. While I was there, I received a gift package filled with thoughtful items from a mom who had lived the NICU life herself, someone deeply woven into the special needs community.
A few weeks later, when we were admitted to the PEMU room at PCH for monitoring, we had our first visitor. It was her, the same mom who sent that package. She came in with so much warmth and understanding. I remember getting up to use the bathroom, and she held you close so I could take that short break without panicking. Just before leaving, she held you near her face and whispered, “Do something, or cut this shit.” And no sooner had she walked out before the door even closed, I pulled the seizure alarm cord for the first time. That was when we finally had confirmation.
In the weeks that followed, I remember so many phone calls and texts with her, her optimism ringing through my fear. “At least it’s seizures,” she’d say. “You can treat seizures.” She was the one who understood, who always had words when I couldn’t find my own.
And then, the day you left me, I left that world. Partly by choice, partly because those still living that life don’t really want someone like me in it. I became the mirror no one wants to look into...the living reminder of what could happen. And for me, they became the reminder of everything I lost. It’s mutual, really. Too painful for both sides.
Because this is what happens, every single time.
People who haven’t lived this life say how sad it is. They say they “can’t imagine,” because truly, they don’t want to, it’s too much to even picture. They’ll grieve for a bit; they’ll be sad for a while… and then life will go back to normal for them. Their children are still alive. Their homes are still full.
But for us, the ones who carry this forever, there is no going back. We cry in the shower. We hide our tears from the others. We wake up every day under the weight on our chest. We argue silently with ourselves about whether to help another parent, knowing the emotional toll it takes. We debate medication just to get through the day. We live life divided into “before” and “after.”
We try to figure out how to live again. How to find meaning. How to feel anything that resembles whole. We take family photos that include a grave. We'll make every song relate to you in some way. We list your age as if you’re still here, just to avoid awkward silence. We don't always mention that we are part of a secret club and sometimes that leads to horrible guilt, but the alternative requires energy we just don't always have. We imagine what you might be doing in a place no living person can ever understand. And every time another child dies, we lose you all over again.
So, here I am. Back in the hole I was just attempting to crawl out of after a challenging 3 weeks, sitting with you to hopefully allow you to help pull me back out. I still don't know how it works, but please go look for Avi and show him the ropes. He's a lot older than you, but you have more experience in his new world. Tomorrow he'll become a close neighbor to you. Aba will go and see you; I am sorry I just can't go sit under that pavilion. I love you baby girl!
"If "Happy Ever After" did exist
I would still be holding you like this All those fairy tales are full of shit"
No comments:
Post a Comment