Coopers Story

Coopers Story

Dusty and I were beyond thrilled when we found out that Cooper was going to be a boy. How perfect, a little girl and a little boy; our family was complete! During my pregnancy Cooper was measuring small but still within range, nothing to be concerned about since Taylor measured small through her gestation and was born a healthy and happy 7lbs 14 oz. When Cooper was born he came out screaming. Not crying, actually screaming. The nurse even commented that it was a lot of noise coming out of such a small man. Cooper was full term and weighed just over 5 pounds. His little bum was the size of my wrist and was too small for preemie diapers; even the preemie clothing was too small for him. “Not to worry,” the doctors said, “ he can fatten up now that he is out.”

The next few hours, okay days…okay months were a blur. While at the hospital Cooper only slept for 3 hours total over 2 days. Before we left a nurse came into my room and told me that she had never seen a child so inconsolable and that we “were going to have a very difficult few weeks” That was an understatement. For the first 6 weeks Cooper cried an average of 20 hours a day. Sleeping for only 45 minute spurts (mostly out of pure exhaustion) . At 3 weeks he was categorized as failure to thrive (In my opinion the WORST terminology for a baby, what a terrible branding to give someone!!) At 4 weeks we had our first mention of a heart murmur which took us to the pediatric cardiologist and a diagnosis for Pulmonary Stenosis. At about 6 weeks he had only gained 1.5 lbs so I was forced to stop breast feeding and get him onto a high calorie formula. What I know now is that his mouth did not have the muscle structure to support sucking. He couldn’t even really take a bottle. It would take an average of 1 hour to get him to drink 2 ounces. 6 different types of formula later we settled on a mixture of Nutramigen and a prescription base product. By 3 months we were down to about 10 hours of crying which was a glorious success! By 6 months about 4 hours and then at 8 months our little man smiled for the first time and he hasn’t stopped since! But the question always lingered. What is going on with Cooper.  Why is he so small?

When Cooper was a year old we settled into the Bay Area and our new pediatrician started us on a rotation of doctors to figure out if anything was wrong. At this point we could tell that Cooper was not only small but was also developmentally delayed. You name the specialist and we have seen them! Our new pediatric C cardiologist suggested that we do a FISH test for Williams Syndrome. We didn’t even know what Williams Syndrome was, we had never even heard of Williams Syndrome. That day Ashley went home and did some Internet research regarding the characteristics and key tendencies for Williams Syndrome children. Cooper had all but one of the signs. She knew that the test would come back positive, but so many of our other doctors were convinced the opposite.

On October 17^th 2012, Cooper’s results came back positive for Williams Syndrome. Ashley was in Philadelphia for work when the pediatrician called with the results.  The news was devastating and hearing the diagnosis when Ashley and Dusty were on opposite sides of the country was beyond heart breaking. Dusty was with the kids and spent the next few nights researching everything he could find on the syndrome.

Here is a little break down from the Williams Syndrome association.

{Williams syndrome is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.

Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing.  Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.}

We are new to the Williams Syndrome family and are learning as we go along but one thing is certain: Cooper is a blessing and we are incredibly lucky to have family and friends who are supporting us through this journey. Everyone who has had the privilege to meet this young man is changed for the better. He might be small but his personality is gigantic. 

Cooper’s story is just beginning and we are happy to have you along for the journey. Our goal is to help Cooper have a fabulous life and help him use his skills to the maximum.  We are also determined to spread awareness of Williams Syndrome (WS) and share the joys and struggles that face a family is raising a child with disabilities. Please join us on our journey.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.