Archive of ‘future’ category

In a heartbeat.

What would I do for my son in a heartbeat? 

I would jump in front of a car. I would plunge into deep water. I would give him water, drink, shelter before I would give it to myself.

I would take him to numerous doctor’s appointments. I would check on him every night,  putting my hand on his back gently, just to make sure he was breathing easily.

I would go home early from events to make sure he gets to bed at a reasonable hour. I would wear sweet potato and Pediasure stains on my shirt like a badge of honor. 

I would hold up an Octopus and make him sing and talk 23 times in a row, because Evan is using his way of communicating to request that.

 I would stand behind him on every piece of playground equipment because he just isn’t ready to be on them independently yet. 

I would listen to him bounce in his crib so hard that it shakes the floor boards. I would spend his “nap” time watching him do raspberries, shout and bounce in our video monitor. 

I would put pieces of french toast onto his high chair tray, one at a time, so that he has the chance to demonstrate good oral motor skills while eating, even if it means a meal takes about an hour at a time.

Do you know what I would not do in a heartbeat?
This shocked even me.
I would not take away his Williams Syndrome.  

To be honest, I probably would have, if you had asked me a year ago.  I was still so angry that my child was going to face extra obstacles for the rest of his life.  I was angry that even though I love my students with special needs (and always have), I did not sign up to have one at home.

But, time changes a LOT.

I have talked to other mothers about this topic.  And some disagree. Some admit they would take away the disability in a heartbeat. 
I completely respect and understand that.  

It pains me to imagine Evan being bullied. To imagine him sitting in a classroom, trying to do the appropriate thing, but struggling to figure it out. It is hard to have him play with his age appropriate peers and watch them speak with ease to each other while Evan bounces and holds onto a chair, excited to communicate with them but unable to in a clear fashion.


I am sure you have heard about the scientific advances in chromosomal therapy in regards to Downs Syndrome.  Here is an article that sums it up.  It is a very tough issue to consider.  I can totally see both sides of the issue.

But for me, when I think of Evan, and I think of the completely fictional idea (for now) that something could be done to “correct” his genetic condition, I would not want to do that.  

Evan is who he is, and part of what makes him Evan is his genetic code.  I would not want to change that for the world.  He stared at me today for about 12 minutes straight while I sang three rounds of a church hymn that he loves. He would not take his eyes off of me. His little soul is just so beautiful and I know that if he were to have the missing genetic material, he would not be the Evan we have grown to love so much.  

Just like if you were to take away the genetic information that makes me overly sensitive, prone to gain weight easily, and clumsy as all get out- I would not be Erin. I just wouldn’t. 

Clearly this is just my opinion, my experience, my son.  

There is much I would do for Evan.  Much.  But in a heartbeat,
 I would not change who he is.  



Our Bug’s Story

Written on August 29th, 2012 for a feature on the awesome Pickled Bean.

We had spent about 4 months of dealing with up and down digestive issues with Evan that had affected his growth and concerned our pediatrician. He displayed aversion to food with any type of texture other than watery puree and could vomit up to 5 times a day, without any real pattern. Three days after Evan’s first birthday (May 30th) we went to a geneticist at the Children’s Hospital of Philadelphia and were told that our son has Williams Syndrome.
 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 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. Probably not the best thing to tell a parent. 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, need 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 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 was the perfect time to laugh right back! So he kept laughing and sucking in air and squealing. Of course I immediately smiled and felt my heart start to lift.

15 months in OBX

and that infectious laughter –
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 right now 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 know I appreciate)smile, of course I am still scared. Yes, I 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. We are concerned over 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. I do wish people would stop saying they were sorry to hear about Evan’s diagnosis. This isn’t a sympathy card worthy circumstance in my book. I know when there is difficulty finding the right words to say, “I’m sorry,” might pop out. 
But please know, it’s really okay. We know there aren’t any magic words you can say that is going to make it all better. Because we don’t need it to be all better- Evan is our son, he is our reality, and although we didn’t expect it to include a genetic syndrome, it is okay that it does.
 So many very deserving, amazing people cannot have children or lose their children at a a young age. I had a miscarriage before Evan, I know how devastating that is.
Evan is here, in our lives,and as I keep repeating, he is more than okay, he is a rock star.
 And that is not me just blowing sunshine. That is me being a proud mama.
 I am so thankful for the community of parents I have “met” online and I truly wish I lived closer to everyone so we could all hang out and celebrate our awesome kids.
I also want to say thank you to our family and friends who are truly amazing. They lift us up with words, laughter, glasses of wine and beer, tears shed, and just by loving us.  Thank you to all of you.
xoxoxo

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