Phew, this summer was fast, furious, and fun! It came up quickly and was over in a flash, and it’s taken me the entire month of September to recover. My thinking, creative brain is mine again, however, I haven’t used it to its full potential yet. When I get home from teaching classes at the university, I have two full hours to dedicate to my creative projects.
However, I’ve been catching up on laundry, episodes of Schitt’$ Creek, and sitting in quiet. Lots of sitting in quiet.
My sweet son is 4 years old and a constant question machine. Rapid-fire questions coming at me from the time he wakes until he falls asleep. Questions that I have to think about to answer thoughtfully and oftentimes, I have to look up the answers on the computer. I felt like every time I had a thought of my own this summer, it was interrupted by a pressing question from my son who needed an answer immediately. I was never able to finish my own thoughts.
Recently, we were in the grocery store and I asked my son to please stop asking me questions for one minute so I could remember why we were in the store.
I survived our family’s summer of a lifetime with patience, (lots of patience,) love, a sense of humor, and deep appreciation for my unique journey of motherhood. I like to think that all of my life’s experiences have been a training ground for raising a 4-year-old boy who is so full of life.
Our family was lucky to travel to a few beach towns on the West and East coasts of the US this summer. Every evening we were away, I stole a quick half-hour for a solo beach walk. Almost every time I was walking on the beach, I encountered one of many families of kids with special needs.
It was serendipitous, as my heart and soul were warmed knowing that families of kids with special needs display to the world the amazing opportunity to learn unfaltering patience and unconditional love.
One evening, I watched a patient, loving father with his very active daughter, who was autistic, build a sandcastle. I watched a handsome teenage boy play with his sister, who had severe physical challenges, in the waves on the beach. They all laughed, joked, and played together, and the love and admiration that the father, daughter, and the two siblings had for each other were palpable.
Because my family was one of those special families for many years, I feel the need to write this love letter to families of kids with special needs everywhere.
This love letter is a reminder of things to look for in these extraordinary families. A letter of appreciation to the families that live a pretty difficult reality every single day, yet are able to find time to play on the beach together. From my personal experience, these families know how to relish the rare downtime we get.
I see you families, I see your pain, I see your struggle, I see your patience, I see your fierce determination, and I see your joy, and I see your outpouring of unconditional love.
I see you, I lived it, I was in your shoes for 11 years caring for an extremely medically fragile child and I see you, I appreciate you, and I acknowledge you.
There are many well-intentioned articles that tell us what not to do when we meet a special needs family, but none tell us to relax, enjoy, and observe the joy and love that these families bring to the world.
The most beautiful people we have known are those who have known defeat, known suffering, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and understanding of life that fills them with compassion, gentleness and a deep loving concern. Beautiful people do not just happen. -Elisabeth Kubler-Ross
Instead of focusing on what you shouldn’t say to a parent of a child with special needs, l focus on what to say, what to do, and how to see the positive— the love and the strength of these incredible families.
Not enough is said about being yourself, having the courage to talk to the families with kids with special needs.
As a parent of a kid who was severely disabled with cerebral palsy, I enjoyed any conversation where I was allowed to talk about my incredible daughter, Ella, and her many accomplishments, and to educate people about her disability. Ella was a beacon of light for our family and for all who had the chance to meet her. I was happy and grateful to be able to connect with strangers when we bonded over her.
And now that Ella has passed, I am on the other side of the fence, and I love sharing and learning about other kids with special needs accomplishments with their parents or caregivers.
When I was about 7 months pregnant with Ella, my husband and I were walking together in a mall. We saw a family with a young boy who was very severely disabled and in a wheelchair. I remember stopping in my tracks as an overwhelming fear washed over me as if I was seeing into my future.
I thought, “What if I have a child who is severely disabled? How would I cope? Does life go on?”
If I could only have a conversation with my 29-year-old self. I would explain that having a child with severe disabilities doesn’t ruin your life, and it gives your life a much greater purpose. In fact, you never have to search for your purpose in life again. For most parents of kids with special needs, our children are on our minds every waking moment.
I had a reality check myself this summer when my 4-year-old son and I were traveling home from visiting family in Washington DC. We were at the airport when my son noticed an older gentleman with Down syndrome and his family. My son said, “Mommy, look at that funny, little man,” and I began to whisper in his ear for him to be quiet, and I tried to distract him. Then I thought, no let him go, take your own advice and let him ask the questions.
I let my son go, and he walked right up to the family and said hello. I saw folks around me cringe as my son engaged with the man and his family. The sweet gentleman was over the top excited to engage with my son, they began playing peek a boo, my son shared his Teenage Mutant Ninja Turtles with him and they bonded over both having velcro shoes. The man was nonverbal but my chatty son didn’t notice. At one point, they were both laughing so hard that the whole terminal was smiling and laughing along with them (not easy to do in DCA’s dreaded X terminal.)