i·den·ti·ty

/ˌīˈden(t)ədē/

The fact of being who or what a person or thing is.

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For the first time in perhaps ever, I saw a flash of what the end might look like.

I was walking from the kitchen into the dining room to bring Sasha her dinner when I received this rapid flash, mental images, a series of photographs and short video clips, careening through my minds eye. It was Sasha nearing the end of her valiant struggle with Sanfilippo Syndrome.

I’m not really sure where this came from. I know there have been reports during this time of stay-at-home orders of people experiencing vivid dreams, impacted sleep. Still, COVID aside, we’ve witnessed changes this year. Sasha has begun falling. We recently moved and so I was more than happy to blame these events on transitioning into a new house. I much preferred the idea that Sasha was trying to adjust to a new floor plan rather than consider that perhaps Sanfilippo Syndrome was starting to take hold.

I am grateful for the group of Sanfilippo parents I know, some I’ve met in person, some who have become pen pals, some who are both. At times I reach out to pose questions regarding their experiences. It saddens me that my probing initiates a fellow Sanfilippo Mother reflecting back on what are unimaginably painful memories, and so I’m choosing to tread lightly with these cherished resources. But through some messaging I’ve come to learn we are now in the next phase of this syndrome.

 

There’s been a variety of issues happening all at once regarding Sasha’s mobility. I wish not to bore you with clinical details but it helps me to process. She’s having a right foot drop and a right foot drag, so she is often tripping over her own foot. More routinely now, Sasha doesn’t lift her foot high enough to clear the floor beneath her or to pass through a threshold. Her left leg on the other hand, is presenting an interesting phenomenon where it’s as if that hip joint doesn’t want to rotate, impeding her ability to pivot.   This means when she turns, its as though her left foot is glued to the floor beneath her, like a well rooted tree. The right foot overcompensates, kicking out sideways to find balance and then boom, she falls directly onto her side without breaking her own fall. This has me particularly worried as hip issues are common with SF Syndrome, and her landing straight on her hip could be disastrous. This is no time to be headed to an ER. In addition, when standing still. Sasha falls straight backwards.  It reminds me a bit of old black and white footage of buildings imploding. At first these nuances were overwhelming to keep track of and to anticipate. But a lightbulb finally lit for me, conceptualizing that I need to be right next to Sasha, holding her hand at all times if she’s not seated. And so now things have become more straightforward.

Many weeks ago, while driving I caught a beautiful segment on NPR.   The discussion focused on the benefits (and setbacks) that can take place in this time of social isolation. Research is still young, with some schools of thought pushing for idleness and what can be learned there, while others suggest that being productive is paramount. A nursing student phoned in to discuss the emotional struggles she’s faced as this societal shift took hold. Her timeline of having just finished nursing school, a time where she found herself hyper focused on a sole goal (school’s successful completion; I recall those years so well!) to then preparing for the upcoming massive shift of entering the work force. But then, suddenly and dramatically, everything as she knew it came to a standstill, causing her great duress. She eloquently described how her identity felt suddenly and vastly so unknown, so unclear, freefalling, uncertain.

This era we’re in the midst of with Sasha has brought out the best in me and the worst in me. Seldom a day goes by where I don’t vacillate between anger and grief. I’ve become nearly fixated on physical activity; hiking, yoga, biking, jogging. Its an outlet for my worries and one filled with purpose; I must remain physically and mentally strong for Sasha, to remain competent in her care. I’m training for the unknown. I need to be ready for her ever shifting weight.

I’m sure many of you could identify with feeling like a sample size of one in those studies discussed on NPR that day. If posed the question to reflect on the benefits or challenges of idleness versus the comfort and sanity that often comes with being productive. I’ve learned that idleness helped me identify not only how to ask for help, but what would actually be helpful in this new chapter with Sasha. We’re house hunting yet again to find a home more suitable for the future. My Case Management team’s recently placed an ad seeking caregivers, and we have physical therapy consults coming up soon to address Sasha’s physical decline and to assist with customizing a lightweight wheelchair. I recognize that my identity has become fully immersed now as nurse and caregiver, but have started taking the steps to summon back all the other facets too.