This is Her Space
Advocacy is part of my daily life.
I provide family support to newly diagnosed families, I share Emma’s story as a patient ambassador for the treatment she receives, I work with our children’s hospital to provide approachable care to all families, and I advocate daily for Emma as I manage her health.
Advocating for school-girl Emma
However, I find myself entering a new role unsure where to place my footing for my next step. Emma is entering kindergarten. This is a huge change for us in several ways.
I didn't think we'd reach this milestone
It stands alone as a milestone. When we received her diagnosis, she was able to start treatment within 10 days. At that time Spinraza had been approved by the FDA less than a year, and the prognosis was unknown. We knew what the history was, that children like her didn’t live past two.
At one point I was brave enough to directly ask, how long do you honestly think we have with her? I was gently told that it would be a gift if she made it to 5 years old.
Well, here she is. 5. Thriving. Smart and determined. Exceeding those expectations. Smashing them.
And as she grows and matures, I feel my resolve as a SMA advocate shrinking and the strength of a mother rising. All summer I've been struggling to find the right balance for her entrance into the school system.
Advocating in her classroom?
Many of the families in our SMA community find it helpful to send a letter home with the students, explaining the diagnosis. It was also suggested to me that I do a presentation to the class on disability and inclusion. These options make me pause and slightly cringe.
We shouldn’t have to do that and honestly, Emma would be so embarrassed if I came to the classroom and did. If Emma was the only student of color, would I ask to do a presentation? No. If she wore glasses, or came from a different cultural background? No.
The details of her medical diagnosis belong to her and how often do I willing share it? Where does the line of being an advocate versus protecting her privacy cross?
She's more than her medical diagnosis
She is a little girl. She is a little girl that loves cats, she loves to swim, to watch movies, to create stories and go on adventures. She can read…everything. She likes to bake with her dad and go out to lady’s lunches with me and my girlfriends. She has so many more things that are interesting, that are mentionable and that make her who she is, beyond the facts of her medical diagnosis.
Her wheelchair is just how she gets around
She isn’t defined by her wheelchair or by SMA. She is a little girl who happens to be in a wheelchair. And when kids ask her why she’s in a wheelchair - she looks them straight in the eyes and says - that’s how I get around- and then moves on. That’s her advocacy.
She doesn’t need to share more if she doesn’t want to, and I feel strongly that I now need to follow her lead. This is her space. And if she asks for help, or her teacher has challenges that are interrupting Emma’s ability to just be a little girl in kindergarten, then I can step in and help.
But for the first time in our mother-daughter relationship it’s time for me to stand back. She’s been listening. I know she’s going to succeed.
Are you familiar with making food texture modifications for SMA?