Kyrie turned 11 months old today.
According to DHS rules, the crib in our room has to come down before she is one.
One! I can’t believe she will be one!
Her worker comes tomorrow for the last visit before she turns one, so the crib has to come down tonight.
It’s always a sentimental moment (and a relief) when the crib comes down, even while it feels good to reclaim the room for grown ups.
But I am just in awe we are taking the crib down because she has grown, and not because we lost her.
We really didn’t know if she would still be with us a year later.
There’s her blanket she wants by her face at night, learned too early from months in the hospital as she sought comfort for a face operated on repeatedly and to block nurse’s lights from her eyes while she slept.
There’s her cabbage patch doll she loves, lighting up with delight whenever she sees it, crawling quickly over to hug it and say MUAH!
There’s her baby blanket I gave her the day she was born.
She’s the only one we got to see on the day she was born.
There’s the quilted blanket tucked over her sheet like we learned in the hospital, to help keep her too tiny body warm.
There’s her little rabbit she snuggles with at night, and the blankies she used to suck her thumb with until we broke her of it with palate repair.
There’s her pacifier puppy she chews on but never sucked since cleft palate babies don’t have suction. It worked when she was tiny, though, to help her sleep, as long as we held it in for her. She plays with it now between her fingers.
Under her crib is the elevated triangle we used to prop one end of her bed up, the first six months of her life when no food stayed down. Beside the bed is a stack of hospital blankets we used to have to drape ourselves in when we fed her, since cleft palate babies try to swallow but it all comes out their nose. Already packed up are the speciality bottles that worked by her biting the nipple and a valve inside it, since she had no suction, and the feeding tube supplies we may still need again at different times in her life.
Her battles are not over, and her life will never be easy, and she has a million trillion surgeries still ahead of her.
But everyone (with babies with similar problems as her) says surviving the first year is the hardest, and that she has made it through the worst of it.
When Nathan and I look back to those early months full of feeding tubes and changing her diaper from the front because she couldn’t breathe on her back and ambulances and life flights and surgery after surgery… I don’t know how we did it. I really don’t. It was so hard, so hard that I still cry when I think back, so hard like fostering was hard, so hard like the last three years were the hardest of our lives.
But now we can do anything.
Because we know what hard is.
It’s time now, finally, to stand back up and apply what we have learned and use the experiences we have had now that we are year one survivors of a baby born with no tongue or palate or chin or bones in her face or airway.
It’s time, like starting the nonprofit to help other families walking where we have already been.
It’s time like barking at kids to hold them accountable to putting away laundry in fifteen minutes or less so you can all snuggle and play for the evening, because you learn time together is worth it and more important than anything, but you also learn that even in crisis things like laundry and dishes and toothbrushing still happens.
It’s time like facing that we have choices for what to do about making care accessible for our children who need a cochlear implant clinic, a deaf school not four hours away, a cerebral palsy clinic, traumatic brain injury clinic, counseling, and autism services that won’t be deleted because of gas prices.
It’s time, as in letting go of baby things, accepting a life full of children with medical equipment, and beginning to move forward with these children we worked so hard to gather into a family.
She sleeps all night, you know, in the girls room.
Neither Nathan or I will ever sleep the same again, not after a year of cords and tubes and monitors and alarms.
But this crib?
This crib is where we saved a baby, and that baby is very quickly turning into a toddler, or has already, and now that she is ready to be a toddler, it’s time to let her go to the big girl room.
Even if sometimes I still watch the video monitor in the night, just to be sure she is breathing.