It’s sometimes hard to discern when a cascade has its onset. When a fleeting thought tying a current situation to a similar one suddenly opens a vast abyss and down the rabbit hole we go. Recently, as I turned my daughter Sasha in bed preparing for the shower that awaited, I was transported back 18 years to a resident’s room in the long-term care facility where I worked as a nursing assistant. My mind recounted the position of the patient’s bed, their off white johnny with pale blue and green abstract designs, its material slightly scratchy from frequent laundering and the question I was asked during every bedding change – “When am I going home?”
A cascade of memories followed – the quirky personalities of my coworkers, the late night, harried winter commutes, the excitement felt when a resident would eat a truly good quantity of their dinner.
And suddenly and for seemingly random reasons unclear, this catapulted me into reflections on all the specialists who follow Sasha. My head hummed with questions – was the newly developing guidance from our neurologist to decrease a medication overly ambitious? Should I make more time for the range of motion exercises recommended by an occupational therapist over two years ago? Was the quantity of g-tube formula shipped really going to carry us the entire month…do the prescribed 5 ¼ cartons per day really average out to 4.8 over the course of 30 days? Where are my math skills when I need them! Will her new wheelchair fit through her bedroom door? How funny would that be, after some 15 years with the old one, if we can’t use the new wheelchair in our new home(NOT)! Should I finally give up on the topical ointment we’ve employed for 10 months to treat her rosacea and move on to long term antibiotics? Should Sasha’s little sister Nika really be hanging out in a ski lodge each week, crammed indoors with the risk of flu so high?
I could feel the angst rising inside me as the cascade built.
As all these thoughts rattled through my head, it occurred to me that I have become the specialist’s extension – the vehicle through which so many tasks are performed. I embody the occupational therapist as I conduct range of motion exercises or the speech pathologist as I watch for swallowing patterns and listen for worrisome sounds. I roleplay a DME representative as I measure the bedroom doorway one last obsessive time. I imitate a case manager keeping tight oversight on Sasha’s needed medical supplies while juggling insurance approvals and prior authorizations like a seasoned healthcare agent. The registered nurse in me, while no longer in practice, closely monitors medication administrations, nutrition and hydration needs via Sasha’s g-tube.
As the cascade came to an apex, I wondered amidst the myriad roles, when do I become Sasha’s Mom again?
With that question at the forefront of my thoughts, I rolled Sasha over to remove her soiled diaper. As I did, I told her that this holiday season, we would sit on the couch together and watch Christmas movies. Not with her across the room from me in her sit to stand recliner while I’m on the couch (which in fairness affords a quick exit to tend to her four-year-old sister) but side by side, shoulder to shoulder, holding hands. I envisioned us, feet elevated on a shared pouf, cuddling with the same blanket on our laps. The image of our Christmas movie watching warmed me and instantly calmed the pending mental overload.
Complex medical parenting requires so many balls to levitate in the air simultaneously EACH and EVERY day. When our child is in maintenance mode (i.e. a steady baseline) the balls tend to be predictable – refills of medications, routine appointments, supply oversight, dietary planning and staffing coverage. It’s when things start to “go sideways” as my husband likes to call it, that life gets particularly challenging and loud. In an instant, we can be asked to maintain pre-existing roles while adding on foreign ones; the insurmountable cost of a wheelchair van as mobility starts slipping away; referrals for new specialists when mystery symptoms appear; consultations and surgical g-tube placement when swallowing capabilities decline; hospital admissions in the unfortunate event of a hard-hitting illness. It is during these times when our role as parent can feel as if it has completely receded – when the hopes of the simple act of watching holiday movies on the couch with my daughter seems elusive.
I often chuckle at New Year’s resolutions despite generating at least one or two each year. Those resolutions used to be quantitative in nature with satisfying measurable goals. But in recent years, they have become less constructed, softer and more idyllic in nature. I simply seek enhanced engagement and moments of true meaning with Sasha; not just making sure her medication refills are aligned or that she has enough incontinence supplies to stretch us to our next order, but qualitative pillars of joy and peace.
This holiday season, I watched exactly one Christmas movie sitting side by side with Sasha, our feet rested upon the new pouf my brother had gifted her. Shoulder to shoulder, I provided foolish Mom commentary at the hard to fathom scenes while wrapped in our shared blanket, holding hands. While I realize that some of the recommendations for making a successful resolution found in the SMART acronym (Specific, Measurable, Achievable, Relevant and Time Bound) were left out of my holiday pledge to Sasha, I got one of those five recommendations right. Relevance. Remembering that you are a parent first, creating moments of meaning, carving out experiences for connection, not just conducting the actions that keep our children physically functioning and safe, are paramount. I’ll take that sole movie viewing and moment of returning to Sasha’s Mother as a win.
Joanne Huff comes to Courageous Parents Network as a long time follower and parent enthusiast of the organization. As the Mother of two girls, the oldest of whom has the rare disease MPS IIIA/Sanfilippo Syndrome, Joanne has benefited tremendously from the intimate parent interviews and candid, vulnerable story sharing throughout numerous thought provoking blog posts. As her daughter’s activities and lifestyle started to slow down with disease progression, CPN became a larger anchor in times of uncertainty and unrest. It is through this lens that Joanne hopes to share experiences and insights via the CPN blog.
Joanne completed nursing school after her daughter’s diagnosis, receiving her Bachelors of Science in Nursing from Plymouth State University, Plymouth NH. She enjoyed community liaison work with home care providers of adults with special needs up until her own daughter’s care became increasingly more involved. In addition to serving on the Boards of New England Regional Genetics Group (NERGG) and Adaptive Sports Partners through 2024, she has found great purpose in volunteer work advocating for policy improvements and change in Washington DC with the National MPS Society. In her free time, Joanne seeks balance and refuge with yoga, hiking and performing as an ensemble Soprano vocalist with the Pemigewasset Choral Society. When not blogging for CPN, Joanne enjoys sharing offerings on her personal Blog Folding Origami for God. She resides in Bow New Hampshire with her two daughters, Sasha and Nika, her husband Mike and her yellow lab Suki.