Beach Week…

Ever since our kids were very small, we all looked forward for months and months to Beach Week. In the early days, we’d go to Kill Devil Hills, NC with Rob’s parents. Later, we switched to Ocean Isle Beach, NC. We did life together in Fork Union with Rob’s parents, so it has always been a natural transition with the grandparents each year throughout our kids’ childhood and adolescence to go from our normal routine of life at FUMA to the beach house at Ocean Isle as a caravan of families converging together.

Eventually, we (the second adult generation) took over the planning and involved our own now adult children in the location and house selection. Everyone still comes and wouldn’t miss this focused week of togetherness. We lost my mother-in-law several years ago but carry on her traditions set at the beach such as no schedules, playing games at night, hanging out on the front porch until late talking, and creating the fun and wonder of discovery that can only happen at the beach-like planting perfect shells in the sand and in plain view just ahead of hopeful grandsons skipping down the beach in pursuit of ocean treasures with buckets in hand, looking for sand crabs in the dark with flashlights, looking down the beach for the Icee stand umbrella to appear with dollars ready, playing putt-.putt and getting a hole-in-one, and providing quarter rolls for the arcade beside the pier on the night before we leave.

I miss my mother-in-law, Donna, especially, at the beach. I’d sit beside her on the front porch or in chairs near the water and listen to her stories and perspectives on people while we watched the kids-and especially Erin-who had no fear of the water -unlike her cautious sister, Diana. We’d brace ourselves, ready to jump up at a moment’s notice when Erin might notice an interesting wave break farther out and turn her boogie board toward it or drift aimlessly with the current down the shoreline ignoring our calls and frantic waving to get out and walk back toward our chairs and umbrellas. Once, she took off toward the horizon (it seemed) without her board, glancing over her shoulder at us before committing to her quest to escape by collapsing into the crashing waves that enveloped her. I jumped up and took off after her eventually stepping hard into a hole and spraining my knee.

I am thinking of that stubborn girl these days as I anticipate our beach trip in a couple of weeks and am especially remembering Erin’s last trip to Ocean Isle with our family in the summer of 2016. Erin was coming off of three months in the hospital after having endocarditis; she and I were both 20 lbs. lighter: Erin from lying in a hospital bed being fed with tubes and me from just standing day and night beside the bed watching her-hoping she would make it home, hoping she would get to see the beach one more time.

So, when she did finally wake up, we talked about the beach, “Go beach, Mom?” My discussions with nurses and doctors included questions about her readiness to travel and feasibility of carting her peritoneal dialysis supplies with us. We bought a van to transport her medical equipment, ordered her boxes of solutions, cassettes, and tubing to be delivered to the realty office handling our rental, and arranged for blood draws at an urgent care office near our beach house while there. And we got the news Erin needed an increase of time each day to be on the dialysis cycler machine (12 hours) overnight to attempt to take off even more fluid. Tagged onto the morning hours included the waiting time for her blood pressure to recover, to rise out of the scary range, so Erin could could sit up/stand with assistance, and so her energy could return. And, it did along with her smile and laughter as her brothers would carry her down to the ocean’s edge and plop her right on the sand to feel the surf wash right up over her, knocking her backwards again and again, rushing over her catheter and feeding tube securely taped to her torso covered in layers of waterproof plastic wrap underneath her pink bathing suit and swim shirt, sometimes filling her mouth as she belly laughed and spit it back out again and again even though we’d tell her to close her mouth, freeing her from all the rules of securing the sterile field around her daily regiments of medical care-allowing her to just be the eternal child she was at 17 inside of herself, to taste the salt in the water and suck it off of the fingers she’d insert in her mouth between waves, to remember the excitement and feel the joy of being in her favorite place in the world with all the people she loved and would call over to sit with her in anticipation of the next wave, to watch them dig moats and a city of sandcastles around her, to feel the relief of constant needle sticks and multiple faces she would frown at and snort her disapproval as they’d clean out a wound or constrict her arm or leg with a blood pressure cuff-having only her people around her.

Sitting on the sand at the beach provided total freedom and relief from her new normal for a few daytime hours at a time each day-as much as she could tolerate. And, when she’d catch my eye of fear or caution that she might tire or that ocean water might seep into a crevice of the clear plastic layers wrapped around her protecting her tubing, she’d call out, “No, Mom” with a stern look of warning to not intervene or take away this perfect moment, to not step into her space-one where she felt in control of her independence, one where taking risks in the moment was not life-threatening and full of setbacks, one she had worked for weeks to gain personal strength back after weeks of not using her muscles while intubated, and then having to learn how to use her hands again, gain strength and coordination back…as she would knead her fingers through play dough and run fingers through the tub of sand with sand toys I brought to the hospital to motivate her to work to regain her strength in her hands and to remind her to work to get stronger for playing in the sand and surf on vacation.

And, while watching the waves roll over her body, I heard in my mind the voices of Erin’s nephrologist, dialysis nurse, and palliative care nurse advising me to let her go, let her do as she pleased, give her the choice to do what made her the happiest, while neglecting to tell me explicitly in words that it might be her last opportunity to enjoy life to the fullest on this earth in the way she loved the most.

Also on that trip I think about and remember the foster sons and sister who escaped daily challenges and burdens of family trauma on this trip, if even for brief moments offering relief, laughter and fun-thrilling risks-ones that kept me on edge as my sons’ best friend, Mason, staying in his RV in our driveway for the week along with my oldest son took them on a midnight raft ride in the surf. Always on my toes; yet, seeing the same relief in their eyes as they ran soaking wet back from the beach in the dark. There was getting to know my eight-month-old grandson in a relaxed setting after only holding him and pushing him in a stroller around the hallways of the 7th floor of UVA Hospital’s PICU for his entire life. For the first time in many months I found myself relaxing with all of our children together along with our extended foster family, a great grandfather, and our new grandson-watching them all interact with a family member who was dearly loved and who was very sick…knowing she would never again be the same-living-all of us-with that knowledge-unspoken-that our Erin was dying…wanting everything to feel normal, and wanting to make her happy…wanting to find our happy place with her while also feeling a small place of misery within each of our hearts-but not talking about it.

Yet, we would not trade that last vacation-would not have missed it-not one minute of it, if only to hear her joy in the sound of her belly laugh as the waves washed over her body, cleansing her face, with handfuls of sand dripping through her slender fingertips as she raised her arms to let the sand drip, seeing her rocking back and forth in the rhythm of the tide, seeing and feeling with her the momentary sigh of relief from pain and circumstances, needing to feel the moment with her and to remember its significance now that she is gone from this earth.

I still hear her laughter in the rhythm of the waves and feel the joy in her spirit. I smell the saltiness of her spunk and obstinance and feel the warmth of her deep love of her people in each sound of the waves creeping and crashing against the shore, with such determination to fight for each moment to live and dwell in the presence of places and people who both love her and feel loved by her.

Erin, I will forever think of your perseverance as I watch the tide grasping the sandy shore and hear the joy of each deep belly laugh in the rhythmic sounds of each crashing wave. I will forever remember you within the center of our family gatherings demanding your just attention due…for you, I will always look to find a glimpse of recognition on each morning walk along the shore on each family beach week vacation.

And as the sun rises on the edge of the island, so will your presence remain with each of us in our hearts and within the deep laughter and love we share on the shores of Ocean Isle.