I have a friend whose son has Down Syndrome (Note the spelling, okay? Many who have kids with Down Syndrome are sick of people erroneously calling it Down’s Syndrome. They don’t have “Down’s” kids. It is “Down” no “s” Syndrome, capiche’)? Wow! Look at me going all editor on your butt. The irony is not lost here since I constantly e-mail Carrie to check for things like this.
Anyhoo. My friend and I have discussed before how having a child with physical characteristics makes life easier, by way of people automatically knowing something is up, and most of the time offering compassion.
I’m not saying DS is always easy and those parents have it made. I grew up with a boy with DS in my family and though he is mostly a joyful guy, he can be a handful for sure.
Last night I read quite possibly the most beautiful blog post I have ever come across. It is about a woman who gives birth to a little girl who unexpectedly has Down Syndrome.
The first words the doctor says to her before giving the diagnosis are, “She’s beautiful. She’s perfect.”
What would it mean to hear those words before receiving an autism spectrum diagnosis?
What would it be like for therapies and services (covered by insurance) to be offered to your child from the second they came home from the hospital? Or at the very least, as soon as they received a diagnosis?
What would it be like for most people you come across to cut your child (and you) a break?
What would it be like to not have to stumble through the first years of your child’s life, trying to figure it out what is going on? What is the deal?
The woman in the blog post knew instantly her child had DS. It floored her all in one swoop. Was it easier to gently (or not so gently) have the signs of special needs show up gradually over time?
Do yourselves a favor and read her glorious post.
I read it a couple of days ago and can’t stop thinking about it.
The blog is titled, Enjoying the Small Things.
It is beautiful.
It is perfect.
Love.
*There is sound attached to the post so turn down your volume if reading at work! : )
*Thanks to Courtney for recommending her blog!
Wow — I was blown away by the emotional intensity of this post. Beautiful indeed. Thanks for sharing.
that was an experience i won’t soon forget. thank you for sharing the link.
Her writing is beautiful, the pictures are stunning. I am in awe.
Sobbing. This is amazing. I could feel her grief. What lovely, lovely friends she has.
Ditto everyone.
Love that you are going all editor on us. Can’t wait for you to join me with the Internet, Yoga, etc. crusades! And don’t get me started on Nordstrom vs. Nordrom’s.
And I have had that same conversation with friends of mine that have children with Down Syndrome – the fact that their appearance brings automatic understanding.
I agree. That was beautiful. Thanks for sharing.
I was hit hard on so many levels – mostly on her story and the beautiful pictures (such a cute baby, and big sis was sooo cute!) but WOW! Did you really want all those people hanging out with you when you give birth?? I felt it was far more a private personal thing. My best friend and I have been through everything together but she wasn’t in the room with me for that, either time, and I certainly wouldn’t intrude on her and hubby when she delivers her bundle in July (I’m hoping for the best birthday present EVER! ;D )
Sometimes I have caught myself wishing for a visual clue, before the “unusual behaviour” clue kicks in. Why is it people show compassion for a wheel chair or other obvious visual clue to disability but tut tut at an obviously autistic child stressing out?
So beautiful. So amazing. Thank you.
Incredible story and writing. Thank you for leading me to it.
Yes, beautiful in it’s brutal honesty, which is rare in a world that tends to sugar coat and deny us our less pretty emotions. Also beautiful in revealing the gradual shifting that occurred.
I have bookmarked this blog. Thanks.
Wow. Wow. Wow. Ok so perhaps I should not have read it while sitting in IT and E-government class where the tears appeared wildly in appropropriate but wow. And thank you.
Michelle,
thank you so much for leading us to this blog!
My mother occasionally talked about the guilt she felt for baring three children with disabilities.
Was it something she did while she was pregnant?
Was it punishment from God?
Was it something in her or my father’s past that had come home to roost?
at that time, there were very few answers, and many more questions.
Kelle’s story gave me some insight into how my mother must have felt as she gave birth to my oldest sister, and her first born. The doctors telling her to, “Take her home and love her.” Spina Bifida was a death sentence then.
Then the second time as she discovered my brother couldn’t see.
Then me.
Your blog continues to teach me about Autism and what it means to have a child with Aspurger’s. I’m grateful for the learning.
Yet we all have similar battles to fight, hidden, or visible disabilities.
Any difference in our society still sets us apart.
We are stronger together.
Wow. I am a little awe-struck by that post. I will have to process all the emotion it made me feel.
🙂