My niece called one day, breathlessly telling me that her friend had a 15 minute old baby and had just been told that the baby was diagnosed with Down syndrome. She pleaded: “What should I tell her?” I was eating in a loud LA sports bar watching three football games at the time so the question took me by surprise, but the first thing out of my mouth was “Is it her first?” “No” she replied. I said: “Tell her that she will love this baby exactly the same as she does her other children — that this baby’s face will be equally enchanting to her as her other children’s faces.” My niece said: “She’s just crying and crying.” So I told her to also add, “It’s all right to be sad for a while. You have to mourn what you thought you would have, but you have lost. It is not disrespectful to this baby to mourn that one.”
My own Down syndrome son is now 18 years old – hard to believe it’s been that long, just like all kids who grow up before you know it. To hear the news that one’s child will be “different” than other children can come as a shock no matter at what point in the pregnancy, or in the child’s lifetime, that it comes. Every person who gets the news, all households, and all children are unique. Once I learned more about what would be considered my child’s “handicap” I felt very unique and quite satisfied that his life would be his particular experience, independent of the number of people who also had the diagnosis of Down syndrome. His own set of genes (including that extra 21st chromosome) combined with the configuration of our own family, and given where we live and the time in which we live, were all going to converge to give him his personal day in the sun; his body just happens to manifest a group of markers that align with traits that a doctor named Down categorized as a syndrome in the late 1800’s. My older children don’t carry those markers but “Really,” I thought, “it could be said that one has ‘Emily syndrome’ and the other has ‘Stephen syndrome’. This is just his place to start; and we’ll see who he becomes from here.”
I knew I wasn’t a clever enough mom to see what to do and how to handle it all at once . . . one day at a time, one milestone, each adventure, has come at the pace of my son’s individual life. Of course, he affects us, we affect him. We share some similarities with other families but we are also our own little troop and it’s a group I am so happy to be part of!
“Emily syndrome” has unfolded with beauty and enriched us. “Stephen syndrome”, besides innate cleverness, has brought a strength to me I couldn’t have known I would need and never would have known where to find. Joey and his “Down syndrome” are just part of the family. We totally forget that it’s “different” at all to have a person with this distinction in a family. We think every family should be so lucky. Then, of course, I think any family would be lucky to have an Emily or a Stephen too.
Emily and Steve have their own stories to tell and I will leave them to it, but if there is anything about my son Joey’s story that overlaps with the life experience of others who are taking a road less traveled, I am happy to share what we’ve seen and done. There are some poems and stories that describe beautifully what it’s like to go on a “different” path than you’d expected and I will post those sometime. If you are not connected to someone who carries the label “special needs” I think you will find them enlightening; if you are, you have probably already read them!
For now I thought I’d just begin at the beginning – – because from the moment it becomes clear we are going to have to learn some new things, it’s all uncharted territory and we all begin to wonder if we’ll find our way as we walk our own, but similar, roads. From that point we start to explore how others experiences might fit into our own and how ours might be of use to them. Perhaps in the sharing of “special” events and topics we will gain insight into our shared “human syndrome”.