The one thing that amazes us is how children adapt so easily.
At one point in her life Ella moved herself the only way she could, by pulling herself with her two arms...dragging her feet behind her. She didn't make any great distances, but she moved...and was happy for it. As we realized something was not right with her development it became increasingly more difficult to watch her struggle with something that we simply took for granted in babies. Her mobility ever since has been a source of high frustration for Ella and anguish for us.
We thought, as many people did, that we could simply carry her more than we did with the other two. Maybe make up for her lack of mobility that way. We have come to realize that is not a realistic option.
SMA causes motor neurons to die. With this demise of the neuron, muscle weakening and atrophy occur not far behind. Children become increasingly "floppy" and cannot help caregivers as they hold and move them. Injuries become more of a concern as well. At the end of the day, mobility, or rather the lack of it, makes life increasingly difficult.
The mind of a 16-month old wants to explore, wants to be independent, wants to move, touch, taste, smell, and do everything nature intended the young to do. SMA threatens to take that away.
Her micro-wheelchair was something that opened up doors for her and us. It provides a way for Ella to get around the house, the deck, church, a friend's house, etc. Her stamina and endurance, however, can easily be taxed, and we know that taxing the muscles of a child with SMA can be dangerous. The micro-chair will most likely be purchased for her and it will be used, but it will not serve as her primary mode of mobility.
Enter the power wheelchair!
The most encouraging feelings filled our life this day...she sat in our laps and almost couldn't contain herself when she saw the wheelchair; as if she knew exactly what it was and why she was there. We placed her in the seat and she quieted herself, her small trembling hands hovered over the armrests, her eyes widened yet remained fixated on the controls, her face took on a serious look; a look of determination to figure this thing out.
We got her outside by propelling the wheelchair ourselves as she sat in it. Once outside she realized what we wanted her to do. She fiddled with the controls, testing our reactions. She didn't move the 300+ lb piece of machinery yet...just played with buttons and observed our reactions.
I placed my hand over hers and guided it to the joystick. We moved. Her expression changed from one of "testing the waters" to "surprise that her body could move through space" as it did. We repeated this joystick lesson for a few minutes.
She tried it on her own. She wouldn't use the joystick but instead tried to push on the armrests as if they were wheels--like her micro-chair has. The Permobil stood still; her eyebrows furrowed. Her tiny hand found its way to the joystick and with the delicacy that Ella possesses, she moved it forward and the chair moved in response. She let go, hand trembling. She looked at us not with a smile but with a look that said, "Look what I just did and I think I like it." She pushed the joystick again and the smile ran across her face, leaving behind an atmosphere of triumph over the disease that threatens her movement.
We took her around the area we were in, surrounded by foliage of all sorts and all at different levels. This chair, designed for those who are in it to be able to access their environment, allowed her to touch the branches of a tree, hand the leaf she picked to her mother without Lindsay having to move, and then get herself low enough to pick the petals off of a flower and rub them in her hands, bringing them to her nose all by herself to inhale the sweet aroma mother nature so deliciously placed there.
She found her way to the delight experienced by spinning, as all children like to do--as all children need to do. She laughed and giggled and looked astonished at the world she could only see from a distance just prior to this day.
We went back into the clinic, had her measurements taken, and discussed the details of this chair as well as her current chair. We also discussed the other piece of equipment she will need...a stander. The details of the stander will undoubtedly be another blog post!
To say that this day at Marianjoy was a turning point would not do it justice. It falls under the category of being a day of new beginnings.
Ella, if she is able to get this Permobil K450, will be able to explore her world, keep up with her brother and sister, take pride in becoming independent, develop her own experiences, and accomplish what we have been praying for for so long--to be the fullest expression of who God intends her to be.
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| Standard Position |
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| Elevated Position |
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| Ground Position |
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| Tilt Position |
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| Accessing Her Environment |
