Respite & Reeling it In

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I use the sticky notes app on my laptop. I keep all of the things that I want to do perched on different colored notes on the right-hand corner of my screen. And just before I packed my bag to leave for a weekend of respite, I created a purple note titled “Respite List”. My intention was to plow through it with the time and space to do so. There were things that needed tending, written, and taken care of, and my goal was to cross off as much as I could so that I could finally find some peace. I packed my laptop bag and all my device chargers and was set for a few days away from my family to hunker down and work. But like most carefully crafted plans, something else happened instead.

I had reserved a room at a respite inn called The Terrace Guest House, one of the Inn’s by A Mother’s Rest, a licensed non-profit organization dreamed up and carefully curated by Andrea Faris Roberts, mother of a son with Down Syndrome. Out of a desire to give parents a place to recharge, relax, and sleep, she beautifully restored an old historic inn located in New Market, MD, and provides it free of charge to those who need it. This inn features seven, beautiful bedrooms, an updated and gorgeous kitchen, along with several rooms to hang out in, relax, and just be. The property is tranquil and just begs for you to sit down with a book, relax into a nap, and just take it all in. The only reservation I had about going was that I would be dwelling in this place with several other strangers. As an introvert who recharges by being away from people, I initially hesitated but was reassured by the website’s description stating that I wouldn’t have to leave my room or socialize if I didn’t want to. Excellent. Permission to be an anti-social hermit if I so desired. I’m in. I made a donation to the organization, selected one of the remaining rooms, and lucked into the largest one with its own private bathroom. It said “Come As You Are” above the bed.

The trip came at a good time. That morning I had spent over four hours with Mark for his telehealth psychological evaluation, and the night before I had spent hours completing the 300 question parent interview. It was exhausting, slightly traumatic, and completely drained me. At the conclusion of his testing, I quickly threw my essentials into a duffle bag, grabbed my work, and headed to the car with the heavyweight of guilt that I would be leaving my husband and children for three days.

As I drove away, I mentally scanned through all the things, what I had forgotten to pack (a hairbrush), things I had forgotten to do (find Mark’s water cup), and the people I felt bad about leaving. The grip was tight and I had hoped it would loosen as I made my way to the inn.

I arrived, and the trepidations I had felt about staying in a house with strangers quickly melted away when I met the other ladies staying at the house. I found myself curious and eager to learn their stories. I listened as each told me about their families, and their reason for needing the time away. I began to understand why Andrea had tissue boxes perched in every room, and how the catharsis of this place wasn’t just centered around sleep.

The first evening I decided to grab a bite to eat by myself. I picked up Cava and then realized I had nowhere to go so I decided to visit my dad’s grave, which was about a mile or two away. I quickly ate my salad and called my mom because I didn’t know where on earth his grave was in that giant cemetery. It had been years since I’d visited. As I talked to my mom on speaker meandering my way through the crowded cemetery, and narrow roadways, I finally found his section. I walked over to the graves and saw the familiar headstone located to the left of my grandfather’s. I sat down cross-legged on his grave, with my mom still on speaker, and had a chat with my parents.

I talked about my worries about the fall. My concern for my kid’s safety amidst the chaos of the pandemic and just how lost I felt. How I wanted to homeschool them. How I wanted to regroup; to focus my energy and attention on them, and not all of the other things that have served to distract me over the years. I wanted to expand on this newfound margin I had been given as a result of the world coming to a halt. My mom listened and encouraged, and it felt interestingly comforting to be having this conversation in such a special, sacred spot with my dad.

As I returned to the inn, I felt an odd sense of peace that I had not felt in quite some time. And I found myself quickly engaged in a conversation with two of the women at the house about homeschooling. They had each homeschooled their children (14 total combined between the two of them) and I felt inspired and eager to learn more.

I was fascinated by each of the women and their journeys. Quietly I listened as I learned about their children, their struggles, and the common thing we all understood; the burden of burnout. We had all been selflessly giving of ourselves for years and collectively breathed in the gift of slowing down.

I spent spare moments here and there throughout the weekend listening to podcasts about parents who homeschool while simultaneously working full time. I began to envision my family’s life in a much simpler light, remaining at the slower pace we had set for the past several months. I found myself daydreaming of daily read alouds, attention spent on teaching Mark the life skills he really needs and time to engage and invest in their education and their lives in a way that I had never dreamed of before.

Saturday morning was spent at a farmers market, then lunch at the quaint restaurant in town and then that evening I met a friend for dinner, and we ate outside in the warm summer breeze, talking about the changed pace and reimagining what education for our kids could look like. Once again, I felt a strange new energy to explore and investigate this newly found desire to change course.

Instead of sleeping all weekend, or burying myself in my long to-do list I felt drawn to spend time talking with the other women in the house; to learn from their rhythms, focus and motivation, and I admired each of them and felt thankful to have crossed paths.

The last morning I was there, I spent some time writing and looked at the rest of my list and realized that I could plow through a lot of it, by deleting it.

I realized that it was time to reel it in. For years I had continually cast my line out into the vast sea of opportunities and obligations, as a way to escape my difficult reality. I ran from the grief, my parenting inadequacies, and from the overwhelm of raising three young children while working. The pandemic had brought all of these things to the surface and this respite opportunity allowed me to realize that the time had come to focus my intentions and energy inward on my family; their growth, their happiness, and mine as well. The slow down of the world gave me time to write letters to my grandma, send notes of encouragement, and to love on the people in my life that matter most. And my soul needs more of that.

For me, the weekend away was not about the ability to sleep longer if I wanted, or to have an extra scone or a homemade pop-tart the size of my face, though I did, it was about finding exactly what I needed, which was clarity and peace.

Respite wasn’t what I thought it would be. It was much more. It allowed me to see that self-care isn’t about finding strategies to escape the present reality, it’s developing ways to improve the current conditions by establishing healthy boundaries and making choices with the intention of well being.

And so with that, I’ve given myself permission to say no, to step back and to regroup. I am forever grateful to the ladies that shared this sacred weekend with me, for Andrea’s vision brought to life, and for the ripple effect that her generosity of spirit, time, and money will go for years to come.

If you, or someone you know, needs this time of fresh air and respite, check out A Mother’s Rest for available dates and future respite opportunities. And if you feel inclined to support this mission, please consider making a donation to continue filling parents’ and caregivers’ empty cups for years to come.

Burying My Grief in the Sand

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As I was looking through the photos from our beach vacation last month I noticed one particular picture. I was seated between Mark and Jillian on the beach, smiling at the camera, completely enamored with my kids. Mark, who I thought would never be able to tolerate any of this, seated to my right happily situated in the sand, burying himself, and Jillian to my left taking a brief reprieve from the ocean. And then I realized something was missing. Grief. I wasn’t mourning what we didn’t have. I was abundantly celebrating the gift that I was so gracefully given.

Five years ago I would have focused my energy on grieving the fact that my kids weren’t playing together; they weren’t building a sandcastle, chasing each other on the beach, or playing Marco Polo in the pool. I would have been sad that we weren’t doing normal things. And today, I’m thankful we had the opportunity to go on vacation and enjoy it through Mark’s eyes.

2015 was marked with diagnosis, after diagnosis. In January we received the autism news, in August, we learned about the genetic disorder, and the fall was rounded out by my Mom’s discovery of breast cancer. We spent the following year traveling to all of the associated medical appointments and acclimating to the world of therapy and mom’s cancer treatments. Going with mom to pick out her wigs was surreal, and that first trip to chemo was sobering.

I vacillated back and forth between terror and extreme sadness at the prospect of facing this very different aspect of motherhood possibly without my mom, and anger that everyone else around me seemed to be living life completely uninterrupted. And I couldn’t bear to watch people take vacations or enjoy the fruits of summer.

In fact, in the summertime, I would fast from social media so that I wouldn’t have to look at people’s vacation photos while I sat in a waiting room. I was bitter because my reality included having a child with so many problems that we didn’t even know where to start. Between significant gastrointestinal issues, a couple of broken arms, and all of the associated deficits with Mark’s genetic condition, we were on the road every summer but we were headed to hospitals and clinics, not baseball games or the beach.

Given Mark’s constant bouts of diarrhea, inability to handle changes in routine, even taking a different route to a familiar destination, I would have never thought that my family would have been able to successfully go anywhere. Until this year.

We decided to be brave and take a chance on a trip. I wanted the kids to experience the vastness of the ocean, the magic of evening summer beach sunsets, and the peace that only waves and saltwater can bring, even if it meant total insomnia and meltdowns. I imagined us taking turns being up with Mark at night and I envisioned him screaming as the sand touched his feet.

In anticipation, I created a social story that showed each of the rooms of the beach house and explained what we would be doing for the week. I set the photos to music and created a video for him to watch. I made lists, lots of lists, and said prayers that he would adjust without too much trauma. I feared the possibility of a bathroom trip and the need to wear a mask. I churned with anxiety and dread about this vacation.

And then we arrived at our destination, and Mark joined his brother and sister squealing as they ran from room to room on each floor of the beach house. He was just as happy as they were to be someplace new and interesting and to be out of the car. We unpacked, settled in and he seemed at ease and at home, but there was still the potential challenge of sleeping someplace new. He’d never really slept away from home and I had no idea how we were going to safely contain him at night so we had brought a bed tent to mimic his enclosed bed. And to our wonderment and surprise, he happily slept all night, along with everyone else.

The rest of the week was a series of pleasant surprises. Mark loved the ocean! In fact, he would let it carry him away if we would have let him. He enjoyed being in the pool, and when we had downtime he loved to perch cross-legged on a chair in the corner of the deck happily playing on his iPad as we all hung out. He was vacationing, Mark style and I couldn’t have been happier.

And then one night toward the end of the trip, we decided to build a fire on the beach. We took all the chairs, supplies, and the kids, and trudged across the dunes to our spot. We fully anticipated that one of us would need to be on guard with Mark ready to sprint. And once again, he surprised us. He sunk down into a beach chair, buried his feet, and relaxed as he listened to music and the ocean waves. Not once did he bolt or panic. I kept tearing up as I looked at each of my family’s faces and took pictures, trying to savor and cement this moment forever. I needed to relish in the fact that I wasn’t yearning for anything more. I wasn’t sad that Mark wasn’t interacting with us in a typical way, or that he didn’t care about seashells or ghost crabs. No, I was blissfully enjoying the gentle-spirited boy who God created, rather than the neurotypical boy that I used to wish for in his place.

I also needed to reflect and remember how far we had come. No more loose stools. No more intense anxiety and panic. We had arrived at calm, and we were together as a family celebrating that achievement. Without saying it, I knew that every single one of us around that fire knew how significant this was.

My sister and I took a photo with my mom that night at the fire, and I felt tremendous gratitude for the opportunity to be with our mom on the eve of her birthday and five year anniversary of being cancer-free. This vacation was a symbol of triumph, growth, and the abundant blessings that I feel thankful to recognize and enjoy, without the heavy grief that followed me around for so long.