Teaching My Daughter to Walk

The Sun Magazine asked me to write a story about “Perseverance” for their 40th Anniversary Issue. I immediately thought of Fiona. Her eight to nine hours of therapy each week. Her tiny developmental gains that gradually add up to big milestones. Here’s “Teaching My Daughter to Walk,” an essay in realism and persistence and hope. Oh, that delicate, wiry bird of hope.

And here’s Fiona, requesting that she use her walker to take steps. You can’t hear it in the picture, but she’s making pleading Mmm, Mmm sounds to me, sitting up straight and tall, eager to get her hands on the bar, pull herself up, and see the world from standing.Fiona wanted walker

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4 thoughts on “Teaching My Daughter to Walk

  1. I am a faithful reader of the Sun, and so looked up your website after reading your biographical blurb. I, too, have a disabled child. In our case he met all his milestones until the age of 2, when (pregnant with my 3rd child) my sister casually mentioned that he should be walking “better” after doing so for a year. I’ve watched him decline moment by moment since. He is not allowed any of the therpaies your daughter has in our state. I watched him learn to walk, and then watched that ability stolen from him day by day. I watched him learn so many things, and saw them taken from him by the degeneration in his cerebellum. He is on eight medications, and I listen to him cough thoughout the day and night because his disorder comes with an immune deficiency. His spine has now become so crooked that they want to straighten it, not knowing if he’ll ever come off a ventilator. I am a nurse, and I am his nurse. My husband cannot help, he is paraplegic himself. I never have a day off, 16 years and there have been perhaps a months worth of days that I was away from him, once when my Father was dying, the other when my Mother was dying. I read about deaths, cancer, and suffering these children go through every day from their Moms. Yes, like you, I’m glad he was born in the U.S. where he gets some help. You didn’t mention any of the European countries where so much more is done for children who are disabled. I’m constantly grieving, as I’m sure you are too. He is cognitively almost at age level so he KNOWS how different he is. I hope with all my heart that your daughter learns to walk, that your marriage survives this (mine didn’t) and that you can find some joy in every day.

  2. Dear Heather, I read your piece in The Sun and my heart went out to you and Fiona. I studied the Anat Baniel Method, which is a neuromuscular touch therapy that has very strong impact on developing children with some reason for delay. It derives from
    Feldenkrais, of which you also might have heard. Your joy over the one SLP that spoke in terms of Fiona’s capacities (rather than incapacities) made me wish to suggest ABM for Fiona’s path to walking. It works very sensitively within the individual ‘s abilities and shall we say evolutionary capacities of the nervous system to learn classic movement patterns. But you may already have encountered it! Please accept my suggestion as a fellow Sun community member and mother. Sarah

    • Hi, Sarah, Thank you so much for your note! We learned about ABM from a friend who’s a practitioner out west, so we sought someone in Ohio when we were there. I became very interested in ABM and was convinced it could be great. We didn’t see any changes in Fiona, though, from our clustered lessons, and the practitioner suggested maybe we needed someone more advanced…who cost a lot of money per session and was very far away. I appreciate the philosophy behind ABM–I read the book and am inspired by its principles. But I struggle with the financial and geographic inaccessibility of it. I wish ABM were more prevalent and covered by health insurance. Hundreds of dollars per session, coupled with travel time and airfare and hotel costs, is simply not doable. So for now, ABM remains this wonderful promise of transformation that, at least in my view, only the elite can access. As a result, we embrace what we have: conventional therapy, which is wonderful too. I do wish I could give Fiona ABM.

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