As our kids develop so do their needs, their interests, and their curiosities. One positive aspect of SMA is that it does not hinder its victims mentally. They are allowed to grow and mature alongside their peers and siblings, without missing a beat.
With this mental development come many aspects of the human experience. Self-awareness and exploration being two of them. Ella is becoming no stranger to these facets of life and she acts upon her new-found "mentality" full force.
Lindsay and I are still carrying Ella. We carry her to the bathroom, we carry her upstairs, we carry her from the bath to the changing table, we carry her to bed. We carry her downstairs to the basement for play, and carry her every time she needs to move and her wheelchair won't suffice. While she is in our arms she often times takes the opportunity to give us a kiss on the cheek...sometimes several. Most of the time words are absent from the kiss yet occasionally she'll tell us that she loves us.
Her self-awareness that she is dependent on us for many things is growing and maturing. She talks to us about the best way to hold her as we stand her up in the bathroom getting her ready for her business or just thereafter. We try different ways and she knows that mommy and daddy do it in slightly different ways...she's ok with that. She is increasingly aware of her condition; often times speaking of how she can't wait for the doctors to "take the SMA away". She expresses her anger and frustration about having the disease and will ask us why it has to be her. Conversations ensue, often tears mingle themselves in, and invariable hugs close the conversation as we get back to the business of life.
Her self-awareness is coupled with exploration in that she knows many of her limitations yet she is willing to thwart them in the name of conquering SMA. She has a pride unmatched when she does something that she previously could not do or had lost along the way. She allows herself to fail over and over until she finds the strength, agility, and process by which she can accomplish her goal. When she is faced with a "brick wall" she simply asks for help, without shame, without reservation, without feeling indebted. She knows we are here to care for her.
It's hard for us to imagine life without SMA...it has permeated our very existence and resides in our daily & nightly lives. It's draining, to say the least, on physical, mental, spiritual and financial realms. It takes so much more than it gives. Getting that heartfelt kiss on the cheek throughout the day helps ease the pain of SMA and provides a reminder of what it is we are to do.
There may be a day when they find a treatment or even a cure for this disease. The entire SMA Community is sitting on edge as human clinical trials are currently underway. Until that time though, we go through each day as it comes. We do what we must in order to keep our child alive and well.
