D-Day (Entry # 5)

parker-pumpkin

We are quickly coming up on Parker’s D-Day, which is the day he was diagnosed with Williams Syndrome.  As I reflect back on the past year I am filled with so many emotions.  Happy, sad, frustrated, angry, scared, envious, & proud.  It’s been an emotional roller coaster.

I remember when we got the call, October 29th, 2013.   We were beyond devastated and so incredibly sad.   We felt as though our lives were over. We felt like our lives had changed for the worse.

This last year we have learned so much about Williams Syndrome.    We have learned about echocardiograms, and heart catheters and anesthesia and sedations.  We have started to learn how to navigate the insurance systems.  We have spent so much time at doctor appointments and children’s hospitals.   We have been introduced to a world that we didn’t even know existed.    We spend about 4 hours a week in therapy.  We do physical therapy, occupational therapy, feeding therapy, music therapy and soon speech therapy.  Parker has to be taught to do a lot of the things that most typical children do automatically. But he learns really quickly and he is strong and smart!  He started crawling a couple weeks after his 1st birthday!  He started clapping a few days ago.  He pulls him self up and is so curious about everything.  So many of our fears slowly are forgotten as we see him reach milestones.  Milestones that you can take for granted with a typical child become so much more appreciated and celebrated.

One of my biggest fears was the relationship between Preston & Parker.  We always dreamed of having two children close in age so they could hopefully be the best of friends.  When we first got the diagnosis we were so upset.  We felt like Preston was robbed of the brother we wanted him to have.   And although I still sometimes mourn the relationship that I dreamed of them having I smile knowing that Preston will be such a better and more compassionate person having a little brother with special needs.   So far they have a normal brother relationship.   Preston loves his little brother and gives him hugs & kisses multiple times a day.  Parker follows his big brother Preston everywhere and gets into all of his toys.  Preston is constantly taking them away from Parker.  Preston has no idea that his brother is behind.  He has no idea that his brother has Williams Syndrome.  They’re just typical brothers and I can’t wait to see their relationship blossom.

On Oct 29, 2013 we were handed a key. A key to a new journey.  A key to appreciate life more.  A key to being more compassionate.   A key to a community of people who we’ve never met but yet have so much in common with.  We were handed a key to being a better person.  A key to being a better friend.  Parker has shown us more this year then we have ever dreamed possible.  Parker is the key to our hearts.

There is a poem that I was told to read when we first got the diagnosis.  “Welcome To Holland”  by Emily Perl Kingsley.  If you haven’t read it I suggest you do.  I’ll attach the link.  It so perfectly describes our journey this past year.

http://www.our-kids.org/archives/Holland.html

 

 

Preston and Parker…  Buddies

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6 Comments

  1. Thank you for letting us all share your adventure. We love you guys and look forward to all the fun times and lessons we will all learn as the kids grow up together. Parker is surrounded by love! You are a brave, fun, savvy and loving mom and I’m super glad I get to be your friend! 🙂 Keep posting!

  2. You guys are a strong, beautiful family. I admire you and your words, thank you for sharing!
    Parker and Preston are lucky to have each other and even more lucky to have you guys as parents. Love you!

  3. Beautifully written! Parker and Preston are both wonderful boys who are full of love. I am lucky to be your neighbor and friend.

  4. Sarah and Tucker,

    I admire your strength and patience 🙂 You are both blessed to have Parker in your lives. Thank you for sharing your story. Parker is on my mind and in my prayers always.

    I love you both and your beautiful sons ! Hugs and Kisses

    Stephanie

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