A few months ago, I was sitting in the too-small chairs located in the children’s section of my local library. I was there to meet with my son’s social worker, speech therapist, and another mother whose children were also in therapy. And as if often the case when women get together, the conversation buzzing around the table covered many topics (sometimes at random) from husbands to grand babies to the weather.
And then, the other mother said something that took all of us by surprise. She admitted that both of her children and herself have fragile X syndrome. She explained that she had hope for her daughter’s development because she had two X chromosomes and that fact lessened the effects of the syndrome. But her son’s prognosis for “normal” development was not as bright. She admitted quietly that the school system did not know about his disorder because she didn’t want him forced into special education. She looked resigned, not necessarily sad or distraught, but heavy with this burden.
As she was speaking, I looked towards the floor and noticed a black wrist band that the social worker was wearing. It gave the name of a private in the military and the date of his death, October 15, 2006. “Your son?” I asked with trepidation and sadness. “Yes, she replied.” “I’m so sorry.” She nodded. And so did I.
My son got dismissed from Speech Therapy shortly after this meeting. His therapist was unsure how to discharge him. I assumed that was because she didn’t discharge many patients, that they usually needed her services until the county no longer provided them. And I thought of the brother and sister with Fragile X. And I thought of my social worker and her son.
And I had survivor’s guilt. My son was progressing, his future was bright, our hope was renewed for his health. But there were many who were not so lucky.
What happens when ideal is no longer the standard that we’re trying to meet? What happens when perfect is revealed to be the falsity that it is? What happens when progress is not assured, when life is not limitless, when dreams are buttressed by fears and bad health, accident and injury?
Well, on that day, in that very small library, what happened was a lot of “Can you say this?” and “What color is the duck?” and “I’m sorry.” Maybe empathy and effort are all that is left. Empathy for those who continue therapy with little hope for improvement. Empathy for the death of others’ sons. Empathy for each others’ very personal and often private Gethsemanes.
September marks the one-year anniversary of Segullah the Blog. We have felt honored to have been able to share our stories with you. Thank you for listening…