Whereas Parenting Kids With Sanfilippo, Life Appears Fractured
That was my Wednesday afternoon: I’m changing my son’s diaper while I’m on the phone with one of his specialists to arrange his annual visit. I look at the clock – his speech therapist is coming in just 10 minutes and he still needs his snack. I end the call and hang up.
The phone rings. The caller asks a question about my daughter’s scout group. When I go to my computer to get this information, my phone alarm goes off, reminding me that it is time for my daughter to take piano lessons. And then my daughter pulls on my arm, excited to tell me about the math concepts she’s learning in school. I go into the kitchen to prepare the snack for my son and hear the water spill and my son laughing.
“Mom, Bubby got his cup and spilled it all over the floor! And did you see my piano bag? “
I want to cry, but I don’t have time. So I take a deep breath and move on, trying to wrap my head over these two very different paths this mother has to go.
I am a planner. Making lists and organizing things have been part of my personality for as long as I can remember. When my son Will was diagnosed with Sanfilippo Syndrome in 2015, my life plans may have changed radically, but my need to make plans, to have some control over my circumstances, did not change.
My husband and I accepted our diagnosis and rushed to find ways not only to help Will and keep his quality of life high, but also ways in which Will and his life could make a difference. We mourned the loss of the future we thought we would have, but we accepted the reality that Will had a different purpose. And we’ve worked to serve that purpose.
We launched WILLPower, our grassroots initiative to raise awareness of Sanfilippo Syndrome at the local level, and have partnered with the Cure Sanfilippo Foundation to raise funds and promote research on a larger scale. We planned therapies, formed a team of doctors, and advocated the inclusion of Will and other children in local programs. We wanted to become a goal-oriented family, hoping to meet the challenge of caring for a child with special needs. We became “parents with rare diseases”.
However, Will wasn’t the only child we had to raise.
“Little Sister” smiles at her big brother Will. (Courtesy Valerie Tharp Byers
“Little sister,” as we affectionately call her, was only 15 months old when Will was diagnosed. Her whole life has been shaped by her bubby’s needs and schedule. Therapy sessions, doctor appointments, and trips to clinical trials are their norm. While receiving powerful lessons in empathy and inclusion, her growth reminds me that while I am a “rare disease mother” I am also the mother of a little girl who has her own needs and her own way.
We decided to send Little Sister to a different school than Will. That way, she could have a place where her identity was her own, so that she wasn’t just known as “Will’s sister”. That is not to say that her brother is in hiding; their school and their teachers and friends know our situation and support it. But her own environment makes her take a break from her super sibling role and just be a kid.
And it was good for me too. In this new environment with new people, I was a “normal” mother. Instead of therapy and medication, my focus was on choir performances and sports exercises. After immersing myself in my son’s world for so long, it took me a while to gain a foothold in my daughter’s world. The two worlds require different types of interactions and I had to be careful not to overwhelm one group with my life with rare diseases and not overwhelm the other group with “normal” life anecdotes. It was a constant balancing act.
Living this double life is tiring and sometimes it feels like I have a broken identity. But what I didn’t plan is how these identities can actually support each other. My “normal mother” identity provides a break from the daily reminders that I am also raising a child with an incurable disease and all of the pain and heartbreak that comes with it. In the meantime, my “Rare Disease Mom” identity establishes me in terms of what is really valuable and helps me keep my perspective.
These weren’t the lessons I wanted to learn as a parent, but they could be some of the most important.
Note: Sanfilippo News is a news and information website about the syndrome only. It does not provide medical advice, diagnosis, or treatment. This content is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always contact your doctor or other qualified health care provider with questions about any medical condition. Never disregard or hesitate to seek professional medical advice because you have read something on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company BioNews and are intended to encourage discussion of issues related to Sanfilippo Syndrome.