Blog posts by mommy Shana and mommy Jess

Three children, two moms, one C.P. diagnosis....and a partridge in a pear tree.

Wednesday, May 23, 2012

Building a Better Baby by mommy Jess

Every doctor we have seen since Greta’s diagnosis has been insistent that early intervention is the key to making Greta “better”. We lean close, listen to them say “babies brains, they are like plastic, they can make new pathways with work, anything is possible with enough effort” like an addict snuggling close to their next fix. All of them, from neurologists to occupational therapists promised to build us a better baby. Whether through pumping her with Botox, cutting her tendons, stretching her muscles, restraining her body in casts, forcing her through painful exercises we have been told of dozens of ways to make Greta work “right”.

I remember her first pair of leg braces, purple and green polka dotted and shoved into large black orthotic shoes that were supposed to mimic mary-janes but instead looked like miniature Frankenstein footwear. They didn’t fit right, in fact none of them since have. The Botox didn’t work either. Who knows if this most recent surgery will?

I fired her new physical therapy team when they wanted her to spend 30 minutes blowing bubbles with her left (affected) hand. I’m pretty sure we can do that at home. What I want is impossible, it is unfair for me to blame a 20 something physical therapist used to working with the idle rich on their tendonitis and knee strains for being unable to perform a miracle.

I watch her without her braces, without the bulky temporary cast. She is wearing her bright blue swimsuit complete with a hot pink skirt jauntily tied around her waist. She gingerly tiptoes over the uneven rocks of the local splash park. Bright red scar on the back of her calf gleaming in the brutal sunshine. Her posture is bent, her steps small and deliberate. She doesn’t see the other kids coming, whizzing past on her left side, until it is too late and they’ve thrown her into the railing. She doesn’t fall; she stops and deliberately rights herself, scanning the landscape for a safe escape.

I want to run and help her but know she has to try herself. I ignore the jagged steps half her size, the sharp angles of the fountains, the dangerous drops and treacherous sculptures. I close my eyes picturing her tumbling down down down but make myself stop. She is unsure; she grips the railing like a vice with her right hand, wrapping her elbow around the hot metal, knowing she can’t make it past the place where the railing dissolves into high concrete steps and leads to the place she wants to go and instead hobbles and hops to a safe place to rest. She knows she can’t follow the others.

She knows. She knows now. She speaks in her toddler dialect, asking why her left hand won’t open, telling me that she can’t do things like swing on the big-kid swings as she points to her curled fist. She gathers objects, careful to never take more than her right arm can hold. She is fearful of our back patio steps, crying out “hold you, hold you!” (her words for asking us to carry her). She has panic attacks when she feels trapped at the playground, when she can’t hear us calling and thinks we’ve disappeared, or when she can’t seem to see us because we are too far beyond her peripheral vision. People stare she screams so loud. I wish I could say I don’t care but I want to explain it isn’t her fault, it isn’t our bad parenting it was an accident, an injury, a bad decision, or a bunch of bad decisions, a punishment, a disaster, fate or I don’t even know what.

I don’t want to build a better baby. I’ve stopped believing in brains being plastic. I don’t want to figure out how I’m going to explain to Greta why.
Instead I want to stand in the wading pool, let the water drench my clothes, let the stones cast to the sides of the path cut my feet so I can hold Greta’s hand while she shrugs and slumps her way up the stairs. I want to smile and say “YAY, you did it!” and watch her smile of accomplishment while ignoring the other parents who sit a safe distance away and roll their eyes at the helicopter mother who won’t let her kid go. I want her to catch up to her brothers and slyly look the other way when she carefully aims a water fountain at Gus’s shoulders and giggles like a maniac at the ensuing surprise. I want her to know I’ll be there to get her down. I want her to know there are crackers and ice cold water (courtesy of the ever thoughtful mommy Shana) in the car. I want to wrap her in a sun warmed towel and carry her there taking in her in shampoo, chlorine and sunblock perfume.

I don’t want to look her in the eyes because her beseeching gaze paralyzes me. I want to let her lazily bounce her hand out the open window me feeling the relief of having nearly escaped the burden of time always pressing down on my shoulders and she tasting the New England summer air.


  1. She looks so cute in her swimming suit. It sounds like she is making a lot of progress. Your family is brave and strong. You two were probably the best parents there and i hope you know that. Hope the boys are doing well. Take care.

  2. Thanks Tina (I totally take credit for picking out the bathing suit). The boys are doing great, loving the New England summer and starting to make friends. Hope you are doing well. And no way we were the best parents there, I think I saw an organically clothed mom nurse a 5 year old so we are totally not mom enough :)! Jess