The gift of ‘I get it’
This is the first post I’ll be sharing as part of my #gratefulbraveawesome series.
Earlier this year, I spent three whole days away from coordinating therapy appointments, monitoring tube feeds, and arguing with insurance companies.
Even better? Those three days were spent in the Berkshires with other moms of disabled, medically complex, and/or neurodivergent children.
I had the opportunity to enjoy this respite thanks to a nonprofit organization called A Mother’s Rest. (Note: While the organization is called A Mother’s Rest, they do offer trips for couples, fathers, spouses, and other caregivers or guardians throughout the year as well.)
The program’s premise is simple: Bed-and-breakfasts around the U.S. partner with A Mother’s Rest to offer rooms at greatly reduced rates for weekends in the off-seasons. It’s a win-win situation: The innkeepers are able to fill rooms that may otherwise remain vacant during slow periods, all while attracting potential repeat guests. The parents are able to take a trip they may otherwise not be able to afford, while meeting others in similar caregiving situations.
All weekend, we were able to use acronyms without necessarily needing to stop and explain each one: IEP, SLP, OT, ABA, etc. We discussed medications, hypotonia, stimming and sleep issues. We shared tips on financial assistance, therapy programs, and online resources.
There are some things only another parent in this situation can fully understand. We’ve all been there: “There” being the realization that something is significantly different about your child, and that any prior expectations of parenting are now out the window.
There was no bragging over college acceptances, varsity teams, GPAs or internships. Rather, mealtime discussions celebrated each of our children’s interests and milestones, whatever they may be.
In the months since that weekend, I’ve kept in touch with several of the other mothers, including Jennifer Hendricks-Fogg.
From the moment I met Jennifer, I knew we would be friends. We were at a welcome dinner kicking off the weekend, and I heard her discussing problems with her son’s G-tube feeding schedule. It turns out that not only are both our boys tube-fed, but they are only a few weeks apart in age!
At just 3 months old, Jennifer’s son, Logan, was diagnosed with a rare form of brain cancer. Logan survived numerous surgeries and rounds of chemotherapy, and today is a cancer-free, sweet and spunky first grader!
Jennifer started the Logan Strong Foundation to help others affected by childhood cancer. The foundation provides families with small comforts that make a big difference during hospital stays – phone charging stations, restaurant gift cards, etc. She also wrote a book entitled Tiny Miracles about her experience.
I am so grateful for Jennifer and all the other moms I met during my weekend away with A Mother’s Rest. There is such a sense of relief that comes from meeting other parents dealing with similar challenges, emotions and experiences. Several of the moms and I have already booked a reunion weekend in 2023, and I am counting down!