Tuesday, 7 May 2013

Dysmorphic

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.


        


9 comments:

  1. I remember getting Boo's first genetic report and seeing all the 'dysmorphic' traits. I was like what the heck is that!!! Even her red hair was classified as a genetic abnormality :)

    I wonder, too, about the pity. I do not want people to pity us. I want them to see Boo and see the beauty that I do.

    Awesome post, my friend!!

    ReplyDelete
    Replies
    1. What? Her gorgeous red hair was classified?! That sounds ridiculous!

      I sure hope the world sees Boo's beauty, too! xoxo Hugs!

      Delete
  2. Joy,
    Happy happy birthday, dear friend! And isn't it something that we all seek out other special needs moms. Before I had Tucker, I didn't know what to say to strangers with children who were delayed etc. Now, I find myself seeking them out and offering a smile, a helping hand, something. This special needs community we are in is a wonderful, supportive place for sure. I feel so lucky to have friends like you and Kerri who understand my joys, my frustrations, my sorrow and my celebrations in a non-typcial world. I love this post.

    PS - I mentioned you in today's post. <3 Hugs.

    ReplyDelete
    Replies
    1. Dear Kristi,

      Thank you so much for the birthday wishes! xoxo It was my last birthday with a 3 being the first digit so that made me a bit sentimental :-/

      I feel exactly the same way as you describe it: it is really such a supportive place, this community. I guess it is because we all know how lonely it is sometimes.

      And thank you so much for the mention in your post! xoxo It reminded me again that I haven't even started my guest post for your series! Will have to stark working on in soon!

      Delete
    2. Take your time with the guest post! I will gladly put your words up on my pages whenever you're ready. I look forward to it! And I'm so glad you saw your shout-out. I never see comments from you so wasn't sure if you'd read it or not (by the way are you not commenting because you don't like the way the new comment layout is? I can't really change it unless I go to something that won't let you use your URL and who wants that?!? I'd love if you let me know - if people secretly hate my comment method, I will need to do something else...sigh). I'm relieved that you did. And yes, it really is a wonderful and supportive place! :)

      Delete
    3. Oh Kristi, don't worry about me not commenting lately! The reason is simply that I am still having a hard time catching up on everyone. Yesterday I started to answer all my e-mails, then I started reading all the posts of Kerri that I missed and commented on them (but I am still not finished with that). Your blog will be the next one I am going to catch up with after that. I have missed so many posts of all of you and it is just a hell of a lot of work because I do not want to miss a single one of them. I am so sorry that I made you worry it was because of your new layout!! xoxo As I told you, the new layout is wonderful and beautiful and it would never keep me from commenting!! Hugs, dear friend!

      Delete
    4. I am SO relieved. Phew. The new comment system is a pain but well...anyway. Thank you for the reassurance! Hugs back, dear friend! And yes, keeping up with blogs is really really hard...sigh...

      Delete
  3. So true that we can only guess what's going on under the surface. Bt I love how blogging keeps us honest! Speaking of blogging... guess what? You just won another award at http://alanaterry.blogspot.com/2013/05/literary-things-seven-books-that.html

    ReplyDelete
  4. The flute is a transverse wind instrument that is not brass or a reed instrument, so it must be "dysmorphic" too.

    ReplyDelete

I LOVE comments! Please talk to me! :-)