Friday, February 10, 2012

One Year

One year ago today started like any other day. I woke the boys up (because they only sleep in on days that we need to be somewhere), got them dressed and dropped Parker off at school. Reed and I ran some errands. After picking Parker up, we headed home. I got them lunch just like usual but that's where things took a turn...

The phone rang. I felt a wave of nausea. I just knew that this was the call that I had been waiting for.

The night before, I had realized that it had been exactly four weeks and that I would hear something any day. We had been told that it usually takes 4 weeks but could take as long as 8 weeks.

I spent that night obsessively reading the same articles and blogs that I had discovered over the previous month after first hearing the words, "Williams syndrome." I looked at picture after picture and saw hundreds of children that could be Reed's long, lost siblings.

I just knew.

And I was right.

It was the call I was expecting.

Me: Hello?


Caller: Hi. Is this Mrs. J?


Me: Yes. This is Heather.


Caller: Hi, Heather. This is Juliann, Reed's genetic counselor from Children's.


    My stomach dropped.

I'm just calling to let you know that the results of Reed's microarray analysis are in...


   My stomach dropped even further in to the pit of my gut.

...and the results confirm that he does have Williams syndrome.


  Whoosh. A metaphorical fist met my gut and knocked the wind out of me.

I don't remember much else about the call. I know that I asked a couple of (looking back now) really irrelevant questions and apparently had the presence of mind to make note of the fact that I needed to schedule a follow up with his geneticist and counselor and that they wanted us to do a follow up in cardiology as soon as possible. She must have thought I was crazy. I didn't really have any great questions. I just couldn't manage to talk to her right then. I was expecting the call and I was expecting the result, but I guess I just wasn't ready to hear it.

After hanging up, I felt the panic attack wash over me. I couldn't breathe. I felt sick. I couldn't stop shaking. I was still trying to feed the kids and had to get them to nap. But I couldn't function.

In the two minutes that I was on the phone with Juliann, my day - and life - suddenly become like none other I had ever experienced...or so I thought, anyway.

I picked up the phone and called Scott. If I had to do it all over, I would have waited until he got home from work. Can you imagine getting that call at work? And having to hold yourself together for the rest of the day? To this day, I still feel bad about how I handled it. I remember speaking really fast, sobbing and then saying I couldn't talk, it was nap time, I had to go.

I managed to get the kids napping and I spent that time (again) obsessively reading about Williams syndrome, special needs, developmental disabilities, congenital heart defects and anything else I could find. I found message board after message board after message board and read about other families' experiences but I did not reach out to anybody.

I think I waited until the next day to tell my mother and I texted two of Reed's therapists - the ones that have been the most supportive - with the diagnosis. But it was at least a week before I told anyone else, even though I had already told friends and family that Reed was undergoing genetic testing. I just couldn't say the words.

At that time, it felt like the world that I knew was ending. Nothing would ever be the same. Reed would never have the life that all parents wish for their children.

That phase, for me, was short lived though.

I started reaching out to family and friends - mostly through email because it was so much easier to to say it all in email without having to answer too many questions and I referred them to the Williams Syndrome Association for more information. Everyone was incredibly supportive and I started to realize that my life, my family, my friends really weren't going to be different after all.

I started to feel more relieved than sad. I had answers. Finally.

I joined the Williams Syndrome Association and volunteered my time.

Two weeks after the call, I posted a message on a Babycenter message board for parents of kids with chromosomal change. I had lurked on Babycenter for a while but never really posted so this was a big step for me. I was ready to connect with other parents and experiences. Within minutes, three mothers responded and connected me to a vast network of WS parents on a private Facebook group. I will forever be grateful to these amazing women and mothers. I have learned so much from them and even though we have never met in person, I feel like I've known them all my life. They just know...

The more I opened up, the more I learned, the more I got involved, the easier it all became. That call on February 10, 2011 really didn't change my life that much. I wrote about this sentiment here last year. We still had countless therapy and doctor appointments. We still had concerns about Reed's health and development. We still had concerns about Reed's future. But we also still had that sweet, amazing boy that can light up an entire room with his smile.

I realized that yes, Reed's life will be different than what I wanted for him. But it will still be a great life filled with joy, love and family. Different is ok. It's about him. Not my wants and wishes.

Most parents of kids with special needs are familiar with a metaphorical essay called Welcome to Holland. And if you are not, you should read it. It does a decent job of describing what life is like once you've come to a place of acceptance and understanding. The place where I am now. Most of the time.

There's another essay out there called Amsterdam International. This is the one that I can really relate to. It acknowledges and addresses those nearly impossible moments, those stages of grief that we all feel after first getting a diagnosis. I found myself reading Amsterdam International over and over in those first couple of weeks because I felt like it was ok to feel like crap, to be mad and sad. It also gave me hope that it would get better and my life (and Reed's) would become normal for me, we would be happy and even fun.

Don't get me wrong. There are still (rare now, thankfully) occasions when I want to pull my hair out, cry and scream about how unfair life is. And to be honest and fair, I had two really rough days this week dealing with Reed's doctors that almost sent me over the edge. I get burnt out with therapy and doctor appointments every now and then. I worry about Reed's health. And securing a financial future for him. I stress about his upcoming IEP, advocating for him in the schools, fighting schools to get the services he needs and fighting doctors' egos when determining the proper course of care. Sometimes, it's all too overwhelming. I don't always have my act together but these moments have become farther and farther apart and I spend my days now enjoying and appreciating my boys for all that they are.

Our life is not the life I ever would have expected or planned for but it is a good one. A happy one. For the most part, we move from day-to-day with ease and little conflict aside from the toddler and preschooler angst. It has become normal for us and that's what's important.

One year ago, I thought my world was crumbling. But I'm still here. And I am happier and stronger than before. More appreciative and understanding. I am a different person now. A better person. Just one year later...


6 comments:

  1. Great post!! I love hearing how people come around, from devastation to learning to acceptance and moving forward. You've got an adorable little guy there. :-)

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    1. Awe, thanks Becca! Your blog has meant the world to me over this past year. Your perspective is graceful and beautiful and Sammi always brings a smile to my day! Thank you :)

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  2. I love your post! I think that it will help so many people that feel just as you do. I have never met you, but remember that you reached out to me when my son was going through genetic testing and I thought that he had Williams Syndrome. We have since found out that he does not, but it meant a lot to have someone reach out to me. I am glad to hear that you are all doing well.

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    1. Hi, Hope! It's great to hear from you. I'm so glad I was able to help out even a little bit :) So glad things are going well for you and adorable Ethan!

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  3. Oh how that sounds familiar! In my own different way, I went through a similar process. The WS was a complete surprise, but we were so overwhelmed with Corbin's heart defects and surgeries and whether he could play sports and how he would feel compared to his brother and on, and on, and ON.
    Hearing the doctor say "He does have Williams Syndrome" was a shocker. I cried and cried because that made everything more scary. Now on top of heart surgeries, and medicines, and scars, and no contact sports, we had to add the learning delays, developmental delays, the hearing loss, the therapies, and on, and on, and ON.
    It was a lot. But now I'm rambling. What I got on here to say is your story is an incredible one, but also an inspiring one. Thank you for sharing Reed's wonderful/scary/amazing/crazy/inspiring story with us. Love to you my dear.

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  4. It's amazing to me that you've only had an answer for a year. I mean, I know that he's a little guy still, but you have always seemed so knowledgeable and calm to me.

    Reading the start of your experience broke my heart a little. And why *do* doctors let their egos get in the way? So frustrating! Just give us the information sans spin.

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