BY JOANNE HUFF

Six years ago, my daughter Sasha aged out of the public school system. I was forewarned by our area agency, her medical team and school staff that this transition would not be easy. Yet as much as they prepared me for the challenges that lay ahead, I was still taken aback by the freefall that occurred immediately after “age-out” day.

On Sasha’s last day of school, her therapists, aides, classmates and classroom staff hosted a big party. We laughed as we sat with paper plates on our laps, reminiscing about so many incredible elementary, middle and high school years. After an hour or so, Sasha’s physical therapist asked if they could walk the halls together one last time. I held back tears as we loaded our van with Sasha’s favorite school supplies – a dinosaur stenciled pillowcase, a plush musical octopus, special blankets and chewies, clothing and hair supplies.

In preparation for the coming years and after careful consideration, we decided on the Parent Directed Management System (PDMS) for Sasha’s day program. Unlike the Traditional Day Program where an area agency provides staff and locations, the PDMS model would give us the autonomy to utilize Sasha’s annual Medicaid and State budget in varying ways. We would be responsible for hiring and overseeing our own staff and building goals around a program we created. This model would have its benefits and challenges, but our desire for a customized day program that emulated what Sasha loved most about school drove the decision.

In the early months, we struggled to find staff in our rural community, a challenge we anticipated. Then, a pandemic hit. Life halted for most, and the medical vulnerabilities within the special needs community temporarily froze all programs.  Next came a surprise pregnancy. I was 45 years old, making me now at increased risk for COVID too, in addition to an unborn child. All systems were necessarily on hold.

Somehow, six years passed. Six years of Sasha remaining at home. Little structure was present in her days other than meal and medication schedules and instilling purpose and meaning was like watching a balloon float just out of reach.  And so, It was with disbelief during Sasha’s 2024 annual physical that the topic of summer camp arose. Her PCP, the Medical Director at a camp serving individuals with special needs in southern New Hampshire, broached the topic, “With Sasha doing so well,” she began “do you think she’d be interested in attending camp next summer?” Doing so well? I recall thinking. Attend camp? “With you living a good distance away” she continued, “overnight would make the most sense of course. We offer 5, 7 or 10-day sessions”. Overnight would make the most sense? I thought. I sat there…stunned. But I knew this was a must-do for Sasha. She had barely left my side for six whole years. She was 26 years old.

When registration opened, despite the commute, I changed my application status from overnight to day camp. I wasn’t sure If I was ready to displace Sasha, however temporary. I envisioned her looking up at the ceiling of a camp cabin, wondering if she would ever return home. I didn’t think either of us were ready for something so big. Soon thereafter, we attended the open house, touring the facilities and grounds. We met camp counselors from all over the world and got a wonderful feel for the activities and programs provided each day. On the car ride home Sasha’s sister Nika, age 4, asked why she couldn’t attend too.

The excitement in our home was palpable as the first day of camp approached. Checklists and shopping trips, preparations and medical clearances were all complete. The night before camp started, we retired a bit early and told Sasha what lay ahead. Tomorrow, she had a place to be.

That first morning was surreal, reminiscent of routines from years ago when Sasha attended school. I felt a familiar pang as I prepared myself to allow someone else to care for Sasha. Her sister was stoic, asking if she could make Sasha’s lunch and silently loaded her bag. I tried not to let my mind wander. A haunting notion that a much deeper loss awaited us all one day kept rising. One day we will be packing hospital bags instead of lunches. One day Sasha will leave the house and not return home. But there was no time to dwell. Drop off time was near.

As we got out of the car there was one counselor left on the gravel road, waiting for their camper. I am self-aware enough to know that I spoke forever while introducing us all to Joyce. I shared Sasha’s likes and dislikes, which noises indicate discomfort and which noises express joy. I conveyed the importance of hydration and discussed her g-tube along with how to best feed her purees. Nika listened attentively but spoke little. As we drove down the dirt road leaving Sasha behind Nika cried out “I miss her already!” I understood. I did too.

For the next five days we learned and grew as we honed our routines. Nika would excitedly march ahead of me into Sasha’s room each morning, flip on the light and call out “Sashaaaaa…. it’s camp tiiiiime!”. Then she would meticulously discuss outfit options, all the way up to the headband. Lunch would get packed as I fed Sasha her breakfast and then Nika would hold the front screen door for me to help the wheelchair fit through the threshold. She was so proud that her sister had somewhere to be.

During daily pick-up we’d marvel at the joy Sasha’s arts and crafts brought us. Painted rocks for Mom and Dad, sunrise paintings for Sasha’s room, namesake beaded jewelry for her sister. But more than all those things, camp gave us a must-do schedule with Sasha as opposed to an optional one. Sasha was given structure, autonomy, identity and purpose. It also gave us one more thing, equity.

That word kept ringing in my ears as the end of camp neared. While reflecting on the people, the tone, the joy and the humanity that surrounded Sasha during her time at camp, movie reels of life throughout the years played in my mind. The reels mostly included Mike, Nika and I running to and fro while Sasha often stayed behind. We went out in the world to socialize or get things done and then report back. Meanwhile, Sasha’s day was unchanged.

During camp week, however, things felt…. equitable. Fair and impartial. Sasha would go out in the world for a day of socializing and productivity while we did the same.  Both parties would report back with experiences to tell one another. What a gift camp gave us all.

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.