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When your child gets diagnosed with anything, let alone a
lifelong syndrome, your life seems to be too much to handle.
I still remember
the day it was confirmed that my son Jagger had Williams syndrome. (1 in 20,000 get diagnosed with Williams syndrome yearly.) I couldn't breathe, I couldn't sleep, and I was so
scared of what the future had to offer. Would he live a full life? What school
would he go to? Would he ever be independent and live alone? Would he drive?
Would he have a career? What would he look like with these elf-like features I
read about online?
Would he have someone special to share his life with? The
fear that one took over lasted for awhile.
At that time, my ex-partner went into survival mode. It had
only been a few months since Jagger was born, but she went full mama bear, getting him set up for therapy and anything else that could help him
progress. It was an uphill battle, but we made it happen. His therapy started at 3
months, and he has had extra help ever since.
Williams syndrome is a developmental disorder that affects many parts of the body. This condition is characterized by mild to moderate intellectual disability or learning problems, unique personality characteristics, distinctive facial features, and heart and blood vessel (cardiovascular) problems.
As the years have gone by, I have noticed that I stopped worrying about all of the obstacles he will have in his life and started enjoying all that he has to offer.
Ten years later, Jagger has recovered from his heart surgery, he is high functioning, and he is a pretty awesome guy. He is able to do all
things kids his age can do but in his own way. He is great at sports as long as
he doesn't have to focus too long. He has a devlish grin that helps him charm
his was out of trouble. He has an affinity to the ladies.
Making a connection with other children has always been a
challenge, so friendships do not come very easily. Jagger's best friend is
his BFF Molly, who is in her 40s, and his twin 7-year-old siblings Niko and Dautry. He gets his special dates with Molly and, the rest
of the time he spends at home with his siblings.
Which is what made one particular day extra special. After our family outing movie
date had finished, a beautiful little girl named Ella approached our family. She
was very outgoing, sweet, adorable and something looked very familiar about her. The moment Jagger returned from the restroom, as they made eye contact, immediately Jagger walked over to her and said, "Hello, my name is Jagger," and he put his
Ella blushed, and their friendship was born.
Ella is a year younger
than Jagger, so I'm guessing she likes older men. My heart still smiles when I
think of this moment. This was a moment when Jagger found a friend, a friend
that functions on the same frequency level.
As we were walking away, her mother asked me when was he
diagnosed. That's when I realized she also had Williams syndrome. I
immediately hugged her, and our friendship was born. I said, "Ella has Williams."
She said, "Yes," and my heart melted.
This was the first time we met a child with
Williams syndrome and a new friend.
I asked her if Ella had any friends, and she said only her
brothers. I said same for Jagger.
I felt an immediate connection to her mother, because she
knew all the nooks and crannys that come with this syndrome. It was a nice moment, because I could
see she has had 8 years to deal with the syndrome and seemed to have a good
grasp of it. By that, I mean allowing her daughter to blossom in her own way and enjoying the process.
Sometimes it's not the easiest, but it could always be worse.
As the years have gone by, I have noticed that I stopped
worrying about all of the obstacles he will have in his life and started
enjoying all that he has to offer: like speaking to me in Spanish and laughing at my jokes or sometimes slipping in a curse word or two. Which has become one of
his favorite past times. At the end of the day, if he has to live with us
forever, then I will be very lucky.
This is the beginning of a beautiful friendship that will last forever if I can help it.
Ella's mom, Sharon, shared with me that she was devastated
when her daughter was diagnosed until she went to a Williams Syndrome
Foundation event and met children with the syndrome. The truth is, once you
spend time with them, you realize it's OK that they are not typical. Oddly
enough, we are the lucky ones. Jagger has added so much to my life. The amount
of humor and joy he brings, along with his sassy personality, makes him priceless.
We had our first play date with Ella. We all stayed, even
though Jagger wanted us to leave him there alone. Since then, Jagger has had his
second solo playdate and that went really well. Jagger enjoys showing Ella the
washing machine and eating all the Ritz crackers in her house. Ella loves to
show Jagger her love for make-up and Justin Bieber.
This is the beginning of a beautiful friendship that will
last forever if I can help it. They are kindred spirits and a gift to the
world. Life if full of surprises and having them in my life reminds me that not
everything needs to be in our control.