• The gift of ‘I get it’

    four women are holding mugs (some teal mugs, some orange) and making a toast

    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!

  • Give me a break

    I needed a break.

    The last time I had spent more than a day away from JB was in October 2017, when I went on a 72-hour business trip to Maryland.

    Since then, I’ve been in constant “mom mode”: Troubleshooting middle-of-the-night feeding pump error messages, working with JB on his never-ending list of therapy exercises, shuttling JB from one doctor appointment to another, and walking around with a patent-pending mix of dry shampoo and baby food in my hair. (Sephora, call me if you want to start selling this!)

    Kendra Adachi of The Lazy Genius Collective, one of my favorite bloggers/podcasters, says, “Self-care is anything that makes you feel more like yourself.”

    The truth is, since my shift to staying at home full time with JB, I really haven’t felt much like myself. Don’t get me wrong: I know how important it is for his health and his therapy that I am home with him, and I love spending time with him. But it is exhausting at times.

    I know other people are going through far harder things, and that my husband and I are fortunate to have a fantastically involved family to help us in countless ways. But I also knew that, for me, in my situation at this exact moment, I needed to step away for a few days before I lost myself even more.

    That’s where A Mother’s Rest came in.

    Back in February, someone in a special needs parenting Facebook group I belong to shared a link to A Mother’s Rest. The organization’s mission is “to improve the emotional and physical health of caregivers through proactive, affordable, restorative respite opportunities.” The group works with bed and breakfasts throughout the country to provide low-cost getaways for parents and families who care for loved ones with disabilities or special needs.

    I came across the link at the perfect time. I was upset because we had to leave early from a rare date night out because JB pulled out his feeding tube. I felt like I wasn’t meant to ever have a moment to myself again. I knew I better start planning this trip now. I signed up the next morning, before I could talk myself out of it. I selected a May weekend at a picturesque little inn in Maine. It was far enough away I wouldn’t be tempted to drive back and bail out if feeling guilty about being away, but it wasn’t too far that I couldn’t drive the handful of hours home in case of an emergency.

    Over the next few months, I had this weekend to look forward to. Whenever I was at my wits’ end, I reminded myself “weekend in Maine, weekend in Maine”.

    Honestly, the weekend couldn’t have come at a better time.

    We’ve been eyeballs deep in house hunting, along with working with the school systems and JB’s various therapists to start the preschool enrollment process. We also added several new medical specialists to JB’s team, resulting in additional appointments. Basically, it has been chaos.

    And I was able to step away from it all (okay, most of it) during my weekend away in early May.

    I read. I doodled. I slept. I shopped. I met up with friends. I ate my weight in fried clams. I watched Law & Order: SVU marathons. (If that doesn’t sound relaxing or entertaining to you, I’d argue you aren’t watching the right episodes. May I suggest the greatest SVU episode of ALL TIME?)

    Since it was a B&B, I had someone making me breakfast each morning, and asking me if there was anything I needed. The innkeepers – some of the kindest people I’ve ever met – had even set up complimentary massages for us! (Another special-needs mom was also at the inn that weekend.)

    I’d love to say my weekend away magically solved everything. That I came back refreshed and revived and never worried about anything else again. That would be a lie, though. Remember, this is real life.

    The following week was possibly the most stressed I’ve been in years, thanks to house-related drama. (I’m beginning to wonder if the people on House Hunters aren’t all actually horrible people as I originally thought, but it’s just the process that makes them seem insufferable.) But I genuinely believe the relief from my weekend away made it possible to even attempt putting one foot in front of the other during those emotional few days. I knew there was still a tiny piece of me that was “me” inside, and I needed to remind myself of that as often as necessary.

    Simply put: My time away helped me power through when I felt as trapped as a gibbon in a basketball. And if you had watched that SVU episode I mentioned earlier, you would be laughing right now, nodding in agreement with that profound reference. You are welcome.

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