By Anne Fricke
The day was one of those that inspire people to run to the beach with blankets and kids and Frisbees, gloriously sunny and warm on the coast – a rarity even during some summer months.
I packed my two little ones, snacks, and a blanket and headed out the door. My husband was out of town, and my oldest daughter at a friend’s. I was not concerned about needing help because I was meeting up with two of my closest friends and their toddlers.
Four of us friends were pregnant at the same time, three planned and one (mine, of course) unexpected. We were all very close, old friends from college or first pregnancies. We even went on weekend girl trips together and family camping adventures. Our babies were all born within five months of each other.
I was no stranger to the complicated emotions of watching their children develop and thrive while my daughter had to work incredibly hard for something as instinctual and essential as eating. I could still call upon that grief if I wanted, but it seems to no longer be so close to the surface. Though I don’t feel the pain and jealousy as much at this stage in life, my heart breaks for the younger me...the one who sat through every joyful gathering, every group photo of moms and babies, and every developmental milestone their daughters accomplished while I worried if mine was even going to survive. Yes, that grief will always cycle through me, I imagine.
But on this day, I looked forward to my friends and our beach time together. I naively imagined kids playing in the sand while we sat together, talking and laughing and safely exposing the rawness of our lives to each other. I overlooked that their toddlers were ‘typically developing’ and would act as such. I had with me a baby and a non-toddling two-year-old. We set up a blanket. I gave Freya some toys, began to nurse my baby, and settled in. It was not long before the two other girls wandered off to explore, as children do, and the moms followed, getting further and further away from the blanket.
I felt stranded.
The day was beautiful. The sun was out. The ocean glistened with its usual promise. Groups of students and families cluttered the beach, running, playing, and enjoying the warmth. My friends followed their girls, laughing and talking and sometimes bending their heads together in conspiratorial closeness.
I watched it all from a tether.
I’m not sure how long we were there, a few hours maybe. Eventually, I decided to pack up and go home, just my two little ones and myself. I walked into my house, sunlight streaming through the window, settled the girls and opened a beer. I was not one to drink alone, but I sought a balm for the pain that had no company. I sat on the front porch while the girls napped or played quietly, drank my beer, moved on to a second, and let myself wallow momentarily in my grief. I was an angsty, poetry-writing teenager, so I can do brooding and sad well – for a time. But then, the happier side of my nature begins to push me towards the light...towards solutions and connections. I thought then of my cousin and his family and decided to reach out. This was a time social media was a blessing.
I had met my cousin’s wife only once a few summers before at a family picnic. She seemed the quintessential veteran special needs mom; calm, patient, attentive, and strong as hell. She and my cousin, who live across the country, have a daughter severely affected by autism. I only knew the details of the challenges from social media posts and what I had learned from my mom and aunt. So, with the confidence provided by alcohol and the desperation of needing to be understood, I sent her a message through Facebook. I told her about my experience at the beach and just how depressed I felt at the moment, how overwhelming and lonely this new path could sometimes be. Much to my benefit and gratitude, she was there!
We messaged back and forth for probably an hour, sharing our stories; her veteran status, experience, and kindness showed me how to shed that pain. Or at least how to sit kindly with it. I have never met her again, and they are no longer together. Still, I would someday like to let her know how much that meant to me, how crucial her openness and willingness to befriend me was, and how it showed me a way up when I had felt so defeated. The hand she extended was a life changer.
My friends are supportive and loving, and I am grateful for all of them. But sometimes, they just can’t understand. Sometimes they just can’t see the pain underneath, the fear, the questions, and the doubts. Compassion is a beautiful gift to offer someone. But genuine empathy, to really feel the source of another person’s pain, comes from experience.
We need each other, my friends. We need to find each other in the corners at parties, in bathrooms changing diapers for children well-past society’s accepted age of incontinence, in yards at BBQs avoiding the array of food our children will obsess over, at home trying to calm children wrought with uncontrollable emotions, in IEPs and medical appointments when we feel outnumbered by bureaucracy and paperwork and the system’s inability to see our children as individuals, standing off to the side with wheelchairs that can’t make it through crowds, in hospital rooms pre-surgery, ERs, and sitting on porches grasping for something to take away the pain.
Find each other...at school pick-up, in support groups, waiting rooms, playgrounds, or on the beach. Find each other and extend a hand, or sit down and share the space. We need each other. These are complex lives to navigate at times, and we should not expect ourselves to do it alone. And if you feel like you have no one to reach out to, you can start with me.
*This piece was originally published in "There Is Joy To Be Found Here, a writing journal for parents of children with special needs".