“The hard part is trying to answer the questions Walker raises in my mind every time I pick him up, What is the value of a life like his — a life lived in the twilight and often in pain? What is the cost of his life to those around him? … If Walker is so insubstantial, why does he feel so important? What is he trying to show me?” -excerpt from Ian Brown’s Memoir “ The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son“
It was this passage of the book The Boy in the Moon: A Father's Journey to Understand His Extraordinary Son that first stopped me. We have all imagined the future of “ what if’s?” managing care for our children when symptoms worsen or a disease progresses. So these detailed diaries of Brown caring for his son Walker, did not disturb me. Instead I found the idea- “ What is the value of my child’s life?” inspiring.
As parents we set out to do the best we can for our kids. We take each challenge in stride, try to make the best decision, take the best approach, give our kids the best advantage. We watch how their talents develop, we nurture, guide, help them grow, so that they contribute, feel valued and posses a strong sense of self esteem.
But for the parent of a child with special needs, there is often no clear path-only a maze to face instead. So many things thrown at you at once- with multiple disabilities come multiple needs. In the early years, intervention and advocacy alone keep you running at full speed. You have to choose the course that is best for your child, but how do you choose? How do you strengthen your child without weakening your own self? Without sacrificing the rest of your family? Your financial security? Your marriage?
For me, this is an inner daily dialogue. I choose to stay focused on the positive because this is the life I want for my child, for her sister too- for our family. A life with no regrets. Walker’s story reminds me that it isn’t just quality of life that we long ago embraced , but also the desire to fully realize the true value of our daughter’s life.
There is value in every moment. If you see it, encourage it, allow it. Every small effort my daughter makes, every act of independence. The way she will sit for 20 minutes wrestling a new outfit onto her Barbie, the way I sit patiently, silently wanting to coax the words from her mouth as she struggles to say the sentence, complete her thought, or tell me a story. The way her big sister, although frustrated, will let her crack the eggs into the brownie batter, and then clean the mess off the floor and pick the eggshells from the bowl. The way my daughter's teachers encourage her patiently, as she reads- haltingly, putting the sounds into the words she slowly recognizes. The way she laughs, really celebrating the simplest jokes, or silly moments that would have gone unnoticed. The way she studied the monsoon sky last night, as she sat watching the clouds darken, really seeing their beauty and strength-moving her to seek shelter inside. The way Zoe doesn’t just hug, in the mindless way others do- her hugs are a from -the- heart embrace, and when her arms are around you, squeezing you hard in the way you would not imagine her body could- you feel what she feels, you are part of her and you can’t help but feel better.
There is value in the most simple acts we take for granted each day. There is value in each of us, no matter how simple or extraordinary our life may be-if only we choose to recognize it.