When we brought Abby home from the hospital 2 months after she was born, there were certain things I knew for sure.
I knew we were incredibly lucky to have the honor of bringing her home– what a miracle she survived!— and I’d be thankful for that every single day of my life.
I knew the road would be hard, that medical interventions for an infant were tough, she had a difficult journey ahead but we’d be by her side no matter what.
I knew I’d have to shed self-doubt, and decide not to give a darn what anyone else thought– having a baby with a feeding tube on her cheek (and perhaps cerebral palsy, or other physical limitations) meant stares and whispers while we were in public.
I knew how to thread a feeding tube down her nose, how to check for placement, and how to make sure she didn’t aspirate with constant vigilance– even if it meant a sum total of 4 hours of interrupted sleep for me each night.
I suppose I also knew this meant a lifetime of worry crammed into one year. And each year following would feel like another lifetime of worry. It’s something I’ve worked very hard to control, that kill-joy called worry.
But for today, I’m burdened by again realizing that being special sometimes stinks. And nothing is easy, even for a child who has survived the unimaginable.
It’s a strange place to be, to walk the tightrope between incredible thankfulness for what we’ve gained and also asking “why can’t things just be easy for her?” It’s a dose of survivor’s guilt too, I suppose. In my head, I know these things to be true– “She survived, anything else should just be gravy. How can I complain about anything at all? I have no right to think things are hard anymore!” But you know what? Sometimes things are hard. Not as hard as they could be, thank God– but still, hard.
I want her to be able to go to a dance class and even if it’s noisy, have fun.
I want her to go to gymnastics, and even if she can’t see me through the window know she’s safe.
I want her to go to transition into preschool each year without the aid of a behavior therapist that helps her not throw up from anxiety.
I want her to go to sleep on her own and not have nightmares– and not be so scared she pukes to feel better. And I really want her to stop telling me there’s a witch in her room, it’s freaking me out.
It’s been a tough week here, friends. This blog is called Making Lemonade because I’ve tried my very best to find the sweet among the sour. But sometimes, though it takes great vulnerability, sometimes I just need to write, and cry a little, and write a bit more.