Last week when I was in the "big city" for my birthday I indulged in wonderful italian pasta for lunch. The restaurant is situated near a busy street and I took a seat on a bar stool at some kind of counter facing outside a huge window. I could watch the people passing by while I ate. I love watching people, thinking about what they might be up to and just letting my thoughts flow.
At some point a child in a stroller caught my eye. He and his mother were passing by and she stopped for a short moment right in front of where I sat in order to search for something in her diaper bag. The child was bigger than the average kid sitting in a stroller, I guess he was maybe four years old. I looked at the child and noticed his gorgeous hair. It reminded me of Sunny's hair. Then I saw that he has what is called "dysmorphic features". I do not see many SN kids in public and, therefore, was somehow delighted to see him and his mom. Immediately my mind started running on autopilot. I wondered if he was undiagnosed as well or whether he had some kind of syndrome and, if yes, what syndrome it is. I asked myself how his life might be affected, if he was able to walk and talk. I wondered if they were part of any support group or rather more or less left to their own devices like us. I felt the instant impulse to head outside and talk to the woman, but I guess that would have been awkward and by the time all these thoughts came rushing to my head withinin a few seconds she commenced to walk on. While I watched the short scene I noticed that the mum looked tired and a bit weary while she handed the bottle she took out of her bag to her child. She looked grounded in a way, if that makes sense, a bit stressed out but at peace with herself. She smiled at her son lovingly, said something to him and stroked his hair before they moved on.
When they were out of sight I still thought about them and I thought about us. As I have done before very often, I wondered again what people see when they see Sunny and when they see me. When we had our first genetic appointment and received the letter afterwards it said that Sunny has "discretely dysmorphic stigma" like e.g. epicanthal folds, short palpebral fissures at otherwise normal eye distance, dysmorphic ears (just for the record: one of my ears is dysmorphic, too!), frontally deep hairline or brachydactyly. I was astounded to read all that because to me he always looked like a "normal" child. But of course it always makes me wonder if people notice these things. If they take one look at him and think immediately that he looks "strange" (I guess only few people outside the SN community know the term "dysmorphic"), making way for prejudice and uncertainty. Or if they rather see his silky, soft hair, his milky, tender skin, his broad, beautiful smile, his small, soft hands, his slim figure, and his blue eyes radiating with joy and happiness. Because this is what I see and sometimes, when I look at him, it suddenly strikes me like lightning and I have to pause for a second because I have never seen a more beautiful child in my life. I bet you know that feeling, too.
And I also wonder what people see when they look at me. Do they see a tired mum? Do I look happy to them? Or sad? Do they pity me? What do they see when they see us interact? Fun and compassion, the deep trust that Sunny has in me and the deep love I have for him? Does anyone see the strong yet invisible bond that we have and that is more precious to me than I can say?
I hope that people see all that and much more. I hope they just see us and not any kind of dysmorphic features he might have or my face looking tired. But if they do see those maybe obvious things , I hope they also notice everything else, too. Because those things, maybe hidden underneath the first sight, are the things that really matter about us.