Thursday, January 14, 2010

Odd Feelings




Yesterday was a weird day. I decided to stop being in denial and asked Zoé's pediatrician to finally sign the completed form requesting a disabled plaque for my car. He eagerly agreed saying if someone needed it, it was surely me. It felt strange driving with the blue card in my windshield. Weird to feel that I am now part of this other community of drivers. I felt like I was unrecognizable to myself from the person I was before it all happened. The diagnosis, the therapies, the new set of challenges. Adding the grieving process for the childhood we won't ever be able to experience. Not comparing it to our own, but to what we thought we would be able to experience.
It is the ego grieving, in a sense. When we ask ouselves, how could I have "produced" such a child, how could I have given Zoé her condition. In my case, it is not something I think about, because it was genetic. You don't pick your genes. Your DNA is established and there is nothing you can do about it.
MMD is not what defines Zoé, and she won't be looked upon with what she cannot do, but what she CAN achieve. This is what is truly important.
Today, in support group, Maria, a Mexican mom was able to feel, for the first time. Let herself cry, shed the tears that we all have shed befofe her. A lot of us, mothers in the group feel empowered, we've accepted the place we are in. For Maria, the long journey is about to begin. She doesn't really have much support from her family, because she comes from a traditional Mexican background, where autism, being different is not accepted. She hasn't gotten the final diagnosis for her son, but doctors are leaning towards "autism", and once she gets the final verdict, she will be able to start her grieving process. Then, she will have to embark on a painful journey, meeting challenges and arming herself to fight the stares, the questions from others. I felt for her today, as she doesn't speak any English, a problem that I am sure adds to her stress in front of doctors and specialists. We told her she could find a translator, a Spanish speaking support group. We also have Tina, whose daughter is disabled and she, too, suffers from her background, being Asian means that whenever you have a child with special needs, you've brought it to yourself, you deserve it for you must have done something bad, and that is the retribution. Shettal, too, suffered from her traditional Indian upbringing. Tina told us, when you have a disabled child, you must stay home and hide him or her from others. You bring shame to the family. How blessed am I! To have a wonderfully supportive family and a strong support group of friends.

3 comments:

Al1 & the girls said...

Hey Sarah,

Reading your post remind me of a girl whom I once met. Once. She is the twin sister of a late close-friend of mine. I used to spend time at their place, and once, she appeared. The mother rushed in and brought her back to her room. Her brother never mentionned her to any of us, and never wanted her to be talked about. It is only on his funeral that we, his friends, saw her again. It was the first and only time Sandrine saw her. She is retarded, 40 this year. So even here, in Europe, where society walks toward a better integration for people with different needs, you have "imbecile" who hide their child because he/she is different.
Cultural background is definitely important, and in the cases you mention are certainly another difficultie for those mothers. But everywhere you will find people afraid of the difference they see, and others we will accept those differences and look at the human beauty in each beings.
Love from sunny Crozon

Sarah said...

Thank you for sharing this with me Alain! I truly value our friendship and find comfort in the fact that you read the blog and bring it to life in your many comments.
Love from rainy California!!! yes, rainy!!

Verena said...

hi sarita,
been catching up on your blog. thanks so much for having it!
sadly, alain is right: y'a des cons partout!
it's very difficult to change someone's mind --especially a stranger's-- luckily, as you yourself said, you've got plenty of amazing friends and a truly wonderful family you can count on; true blues who will never judge you or anyone you love!
sending you all the good vibes i can from paris.
love,
vere