We have been having some difficulty of late getting Taylor to wear her AFO’s. AFO stands for ankle-foot orthosis which basically describes an apparatus designed to support the ankle and foot. While these may look very intimidating at first glance and somewhat intrusive, they can make a world of difference in a child’s ability to walk and maintain flexibility of their Achilles tendon. They have made a tremendous difference in Taylor’s ability to walk and have helped her gain strength and proper alignment that she would otherwise struggle with as a result of her cerebral palsy.
- Taylor's AFO's -
So, as I was saying, lately it has become increasingly challenging to keep Taylor in her AFO’s. The other day, as I was getting ready to put Taylor’s AFO’s on her feet, Taylor looked up at me and said as if to object to me proceeding with the placement of her feet into the AFO’s, “Mom, I can walk like you.”
I paused for just a moment to reflect on that sentiment from my 3-year old and it occurred to me that for the first time, my dear, sweet Taylor was communicating to me that she understood that she was different. At that moment, I saw nothing else but Taylor's face looking at me expectantly awaiting an answer back to her and in all of about 5-seconds I assessed the perspective that Taylor must be having towards her AFO’s. My feet, as well as her sister’s, are always bare; hers are always donning something else, something unusual to her sister and to her mommy. Taylor also always observes me (and her twin sister) put on shoes that look quite different than hers and she now wanted me to know that she could "walk like me" and by that statement, I believe Taylor was also telling me that she wanted to be like me - bare footed and apparatus-free.
My heart literally sunk heavy into my chest, and for the first time, as I sat face to face with my daughter Taylor, I was presented with a moment that I always knew would come since Taylor was diagnosed with cerebral palsy – a moment when I would be faced with offering explanations to Taylor. My husband and I have often talked about the day when Taylor would begin to become more self-aware, to notice that she might be slightly different than her sister and her peers and we have often talked about what we might say to Taylor and how we might say it when that time comes. Well, despite how many times you talk about that day coming, let me be the first to say, you're never ready for that day to come...
When I heard Taylor say simply, “Mom, I can walk like you” - since it caught me by surprise - the words that came to me were: “Taylor, you’re right, you CAN walk just like mommy but guess what, these will help you walk even better than mommy.” (I especially emphasized "EVEN BETTER THAN MOMMY")
It was a tough and sad moment for me. Tough because I knew this was perhaps the first of many more similar sentiments and conversations to come with Taylor in the years ahead. Sad because, in that moment, I longed for my daughter not to HAVE to be different for her sake. It was also, strangely enough, a happy moment for me. Happy because no sooner had Taylor uttered her words to me about wanting to “walk like me”, it was as if God had long ago already placed the words in my heart that my daughter would need to hear at that exact moment. It was as if, God in all his wisdom and love, knew that this conversation would take place on Sunday, February 22, 2009, as Taylor and I sat together on the floor preparing her little feet and legs for her special shoes.
I was also happy because in that moment, Taylor was right and I was there to tell her so – that she absolutely could "walk like me" and that with her special shoes, she would "walk even better than me”. Taylor seemed to like hearing that and allowed me to put her AFO’s on…
In just the short 24 hours since Taylor and I had this chat, I have since observed Taylor to repeatedly take her AFO’s off. She pulls at the little velcro straps that cross over her little ankles and at her calves. She simply will not keep them on…she can walk without the AFO's, which is awesome, however it’s not the best thing for her to do because the AFO’s provide stability for her, improve her overall gait and protect the overall physiology of her legs. I have not made a big fuss the last 2 days about Taylor keeping the AFO’s on knowing that I see her physical therapist this Wednesday and I plan to talk with the physical therapist about this new development and the new resistance Taylor is showing towards her AFO's.
The physical therapist had prepared me many, many months ago that at some point, Taylor would begin to resist the AFO’s and that we’d have to work together on devising some creative strategies to help Taylor become interested in her AFO’s again. Well, that day of Taylor's resistance to AFO's has come. I am looking forward to talking with Taylor’s physical therapist this week as I know Taylor not wearing the AFO’s opens up a host of adverse consequences that can impact her mobility and gait including physical damage to her ankles, hips and knees.
More posts on this to come after I speak with Taylor's physical therapist, so if you're interested, be sure to check back again later this week....
