There's a presence of trepidation that surrounds our days. A feeling that pain will be lurking around every corner. The expectation that everything will be all right eludes Ella. She knows she must be carried, moved, and repositioned throughout the day and night. She also knows that for much of her life pain has been present. And not only present but increasing in prevalence and severity. Naturally she expects that any movement involving another person will result in discomfort---if not full-blown pain.
Upon the removal of her cast we experienced the deafening cries as we carried her from the examination room (where the cast was removed) to the x-ray room. These particular x-rays required her legs to be in certain positions that would allow viewpoints that would otherwise have not been attainable while in the cast---which meant that repositioning must take place. The doctor's office is a relatively small space within a larger building and her screams echoed through the waiting room and hallways as I carried her from one place to the other. I wanted to put her back in the cast, get into the car, and take her home as if nothing ever happened. I'm sure she wanted that as well.
Taking care of her now has presented us with a host of challenges. Transferring from chair to toilet; from chair to changing table; from bed to bath and back again has been a brutal experience. Figuring out the easiest ways to get pants on, socks on, and her TSLO (torso brace) on has come at a price paid by her discomfort. Finding ways to ease the itching that the cast left behind; searching for ways to reassure her that the pain will subside at some point while simultaneously convincing ourselves too that indeed it will.
SMA is a brutal disease in that it slowly, methodically, and deliberately harms its victims. It captures the young (with the exception of Type 4 patients) and plays its cruel game (for all Types...1-4). It challenges parents, siblings, extended family, and friends to face up to it with strength, fortitude, and courage. It hides like a coward in the depths of the neuromuscular system yet presents itself openly to the world. Its victims are highly intelligent, amazingly resilient, admirably brave, and undeniably endearing...one cannot help but fall in love with them.
Up until now we haven't questioned the pain. But alas, we are beginning to do so. Can it be a combination of true pain intertwined with psychological pain? Could it be that since Ella has felt nothing but pain for so long she has unconsciously developed an expectation of it? How does one get into the head of an almost 6-year old and ascertain what's really happening? And...how does one work through what they find out to be true?
Ella is amazing in that she is beginning to "work" with us to find ways to more gingerly handle her physical needs. She makes suggestions, asks questions, and has begun to use her words rather then her raw emotions. We have a ways to go, mind you, yet the path we are on, at this point, is a path of positive healing.
We know that there will be surgery in her future. Getting her body to align properly to optimize breathing is what our goal has been. Hip alignment was our first step. Doing what we can to correct the scoliosis will be our next. And while we haven't had much conversation about scoliosis corrective surgery thus far, we do know that it lies on the horizon. In the meantime we will continue to nurture our family...firmly standing in the belief that our love will help us to endure all that will come to pass.
A snapshot of how perseverance plays a role in Ella's care can be exemplified by the dramatic difference from one surgery to the next with her hips. We met a rather bumpy road after the first surgery and with the love and support of so many we have traversed through the second surgery. Our hope glimmers within our hearts that the decisions we have made thus far will benefit our Squishy.
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| Ella's hips after first surgery (left hip bracket is slipping out due to many unforeseen factors) |
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| Ella's left hip after second surgery (A new bracket which corrects the slippage and provides maximum support for proper alignment) |
Time is what will reveal the fruits of our efforts and God is who will move us forward...may time move quickly and God reveal His will.
