I have a lot I want to blog about but it has been craziness central here in our household with illnesses and an artistic endeavor that I was involved with this weekend that was SO good for my soul. More on that later.
This week on the WS Support page there was a video shared about Amy Koch, a woman with WS who was on a television clip about women and girls being leaders. I was mesmerized by this woman, her confidence, her incredible grasp of the English language , and just her beautiful spirit. Please watch it if you have time:
Watch here: Amy Koch video
|Bathtime is his favorite time|
For some reason I focused only on all the positive things she said, sort of glossing over the parts where she mentions being called names and being ridiculed in the work environment before she found the wonderful place she is now. A few of my friends on the WS Support board mentioned that they were also touched by the video but that they just can’t get a handle on how it will be when their child will start to be looked at as “different,” and could possibly face ridicule as well. That started to affect me a bit. THEN a mom posted that her five year old son went to a party with her younger son, age 2 with WS, and a playmate at the party said that he was “weird because his face looks funny.”
Wow. Age 2.
That stung me deep in my chest. I feel so guilty because when Evan was first diagnosed I often would find myself thinking that it is all good and fine now because Evan is so cute and little and everyone loves him but what is going to happen as he ages and his looks change and his disability is not so invisible? That is so hard for me to admit. Why should it matter to a mother, how her child looks? But I was just so scared of how his appearance would affect how he is treated by others. But……. as has happened with most other worries and fears I had those first few months, my point of view has since changed and I KNOW that no matter how Evan might look, or sound, or act, he is will still be the same incredible human being that he is today and was on the day he was born. In fact, with each day, he becomes more awesome in my eyes. Isn’t that was being a parent is all about? Being in love with your child no matter what? But of course, that is not the issue- the issue is how others perceive your child and how they may treat him or her.
I stumbled upon another amazing blog written by an incredible woman who has two children, one of which who has special needs. She and her husband have faced many adversities, some of which are painful to read about as a parent. But she is honest, and her writing is inspiring. She personally responded to an email I wrote her, which really spoke a lot of her character.
This entry is a great one, where she writes about “Stargazers,” the people who stare at her son, and how we all “stargaze” sometimes. Click here to read it.
The entry that really touched my heart is this one. Please read it if you have time.
|After church and brunch and some cracker consumption|