Submitted by Lindsay...
Today Ella got her new AFOs (Ankle Foot Orthotics).
To say we've felt mixed emotions about this day would be an understatement.
On the one hand (a very large hand), we're getting something that will help Ella. The orthotics were custom made to hold her feet and ankles in the right position for proper development, as well as provide support for her ankles while we work on standing. She also got knee immobilizers, which will hold her knees straight while she practices weight bearing.
All around, these devices will be wonderful for her. For Ella.
But what about for us? Her parents…
Seeing Ella in these "braces" will put an image with the disease. It will make the disease much more real for us. It will make Ella look "not normal."
And what about when we go out? Will people stare? Will they ask questions?
I took Ella to get some shoes to wear with her AFOs (not an easy feat), and luckily I went to a specialty children's shoe store who has had experience with AFOs. It took a while to find a pair that could accommodate the bulky straps of her AFOs, but without being too big or heavy for her.
During the trying-on process, another mother with her young child came into the store (we had our backs to her) and she overheard the shoe salesperson explaining the difference between some of the infant shoes to us. The mother immediately came over next to us and said, "Oh good! I need to hear this information too. I have a new walker as well."
A new walker. Ella is not a new walker. Unless a cure is found, she will never be a new walker.
Up until this point, whenever we went out, we could somewhat escape the reality of the terrible disease that possesses our daughter. But now, going out will be different for us because it will be obvious to others, to strangers, that something is wrong with our Ella.
But we have to overcome these feelings of fear. We have to keep thinking that WE WILL BEAT THIS. Ella will beat this. So if people stare or ask questions, we'll feel proud of our Squishy's AFOs, knowing they're helping her.
This is only the beginning. There will be many more orthotics. There will be devices. There will be equipment. There will be wheelchairs. We need to have the right attitude. Starting now. And we do. :)
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| Sitting like a "big girl"! |
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| Cute new shoes :) |
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Submitted by Michael...
At 10:10 this morning I looked at my watch and thought to myself, 'Ella is getting her AFOs (Ankle-Foot Orthotics) right about now'. The world around me closed off for a brief moment as my stomach flipped in its usual way when I think about the reality of SMA.
I received an e-mail from Lindsay telling me that the appointment went well. I asked her not to send pictures or give me details via e-mail...we wanted to wait for me to get home; to be there in person to see the first step in a long series of steps for Ella.
I walked into the house. There sitting with Lindsay was my little girl, a bright smile on her face and she was wearing shoes! The AFOs extending from the shoes and up her legs to just below her knees. I came to her and touched her legs, wapping my hand around her calf, feeling her warm skin that was just behind her knee and above her knee-high socks coupled with the feeling of plastic. Her legs still felt the same, still squishy, still lifeless. I hugged her a bit more tightly.
The anticipation of the AFOs filled the past days and weeks. I knew that seeing them on Ella would be the first real taste of outward reality; the reality that her diagnosis is in fact. The process to acceptance is a tangled web of emotions each demanding my energies and attention, pulling me in directions that oppose each other.
Then I felt a new emotion. One that was always there but remained silent in its demand for me.
Pride.
I released my hug and looked once more at Ella. I looked past the AFOs, past the over-sized shoes, and past the SMA. I saw a delicate, fragile child. A child who takes delight in every accomplishment she seeks and conquers. I saw our Ella, our Squishy. I am proud of her. I am proud of us.
The pride in the loving knowledge that Ella is our child, one of three beautiful children, who will continue to fight to survive. The pride in Lindsay and myself for talking with each other to help ourselves take on the challenge of caring for her. Pride in the fact that we are taking the first step in physically fighting SMA.
I received an e-mail from Lindsay telling me that the appointment went well. I asked her not to send pictures or give me details via e-mail...we wanted to wait for me to get home; to be there in person to see the first step in a long series of steps for Ella.
I walked into the house. There sitting with Lindsay was my little girl, a bright smile on her face and she was wearing shoes! The AFOs extending from the shoes and up her legs to just below her knees. I came to her and touched her legs, wapping my hand around her calf, feeling her warm skin that was just behind her knee and above her knee-high socks coupled with the feeling of plastic. Her legs still felt the same, still squishy, still lifeless. I hugged her a bit more tightly.
The anticipation of the AFOs filled the past days and weeks. I knew that seeing them on Ella would be the first real taste of outward reality; the reality that her diagnosis is in fact. The process to acceptance is a tangled web of emotions each demanding my energies and attention, pulling me in directions that oppose each other.
Then I felt a new emotion. One that was always there but remained silent in its demand for me.
Pride.
I released my hug and looked once more at Ella. I looked past the AFOs, past the over-sized shoes, and past the SMA. I saw a delicate, fragile child. A child who takes delight in every accomplishment she seeks and conquers. I saw our Ella, our Squishy. I am proud of her. I am proud of us.
The pride in the loving knowledge that Ella is our child, one of three beautiful children, who will continue to fight to survive. The pride in Lindsay and myself for talking with each other to help ourselves take on the challenge of caring for her. Pride in the fact that we are taking the first step in physically fighting SMA.
