Click above for the link to her blog.
Before I start my rant on how much I love Erin. Can you BELIEVE how much Cooper and Evan look alike. Brothers from a different mother if I have ever seen it.
{ They are both the same age when these pictures were taken}
I adore Erin and felt connected to her the first time I saw her post on the Williams Syndrome Support Page. She is darling and her sweet son is just the BEST! I know you will love her as much as I do, I wish we lived closer so our boys could grow up together and be best buddies/twins.
READ THIS -- her blog post after finding out about Evan's diagnosis. My favorite part by far is this quote from Erin, I remember this exact feeling.
{ "I knew exactly what tree she was barking up. And I wanted her to jump off that tree right then and there."}
Dusty and I were thinking you better get off that F*ing Tree or I am going to punch you in a face with a chair.
Please see below from Erin
So I am very new to the world of parenting a special needs child. Three days after Evan's first birthday (May 30th) we went to a geneticist at CHOP and were told that our son has Williams Syndrome. I discussed it on one of my most recent blog entries. In a word, we were blindsided. We had no idea that the issues we had been facing for the past 4 or 5 months of our little guy's life were due to a genetic condition. I had been assuming all along that he had issues in his esophageal tract or that he might have some slight sensory issue but nothing major.
He did not have the typical difficult early detection of serious heart issues, in fact when it came up that we "might want look into genetic testing" as the pediatrician on the feeding team said in late May- the doctor even said she was 90% sure nothing would come of looking into it. But she changed our lives that day in that little, cramped, stark white office. She questioned whether it had ever occurred to us that our son does not share our facial features. I literally felt like the wind had been knocked out of me. My father passed away a few months before we found out I was pregnant with Evan, and our son is a mini Bobby G, my Dad. He has the same droopy cheeks and big huge smile and personality. And I have clung to that fact very tightly. So hearing the doctor suggest that he does not look like us hurt more than she could know. A day later- she gave us the term, Williams Syndrome- which neither of us had heard of. I have been in special education for over 11 years and I have never encountered a student with this condition, nor had I read about it. So of course, after shakily entering the term into my keyboard and coming to the WSA page, my heart just sank. I remember not being able to focus on the information as a whole, I only could see certain words popping out at me, like, "low IQ, 75% have mental retardation, have successful jobs as greeters at grocery stores, one-on-one aides, etc." I remember collapsing into the recliner and calling my husband crying. Somehow he had already found the term online when typing in some of the issues we had run into and some things that came up at the feeding clinic appointment.
Both of us had trouble having the conversation and I just said that I thought his life expectancy was not different than a typically developing child. I hung up the phone and went up to Evan's nursery and picked him up out of the crib where he had been fighting a nap for a little while. I held him and rocked him the recliner, which I had not done in quite some time because he doesn't wake up over night much anymore. And I lost my s***. I am not one to curse unnecessarily and I apologize for that, but I did. Plain and simple. I started wailing and could not stop. And the funniest thing happened (which now is so incredibly symbolic), Evan picked his head up off my shoulder and looked at me and started giggling uncontrollably. He thought my wailing like a banshee was laughter. And he thought it was time to laugh right back! So he kept laughing and sucking in air and squealingOf course I immediately smiled and felt my heart start to lift.and that my new friend- is really at the heart of our new story with our son.
He is fine. He has a few less genes than the average child his age which makes him less likely to walk before 2, or be in a regular education class without assistance, or love to eat chicken nuggets and grilled cheese like his little toddler friends. But those missing genes have done nothing to his HUGE personality. He is vibrant, curious, funny, beautiful, empathetic, and just so very loving. He has already taught us so much in 15 months, and I know he will continue to for as long as we are blessed to walk this earth alongside him if I am being honest, which I am sure is what you are looking for , of course I am still scared, and of course I still get angry sometimes when I think of how his future might be affected by WS. But the thing both my husband and I keep trying to remember is that we are far more worried about how his future looks to US. How his life is going to be different from what WE want for him. He is pretty darn happy with how things are going for him right now. Eating his sweet potatoes, chasing our choc lab mix around the house, climbing up the steps over and over no matter how winded it is making Mommy.
Don't you love that last paragraph. I told you she is amazing. I love how truthful she is you can feel the strength in her words leap out of the page.
Erin my dear, YOU ARE A WONDER WOMAN!!!!
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