Kerri Kava, Published June 10 2013
Parenting Perspectives: Find support for good times and bad
Because Williams syndrome is so rare, most of the time that support comes online through our Facebook group. Whether sharing a new food idea to deceptively sneak protein into our picky little eaters, posting something we should all know about or just a milestone brag post, no one understands like a fellow WS mom.
It’s this very understanding that has taken hold of my heart.
A little boy who lives with WS and shares the same name as my son, Carter, passed away last week after a heart surgery.
He was about the same age as my Carter and had a giant smile. Why people with WS are so happy, gregarious and loving, the world may never know.
I do know today heaven is a more smiley place. And it most definitely became more filled with love.
Individuals living with WS typically have heart complications. Most newborn babies have a heart surgery to correct pulmonary stenonsis. While the heart surgery itself typically goes well, the anesthesia is always a concern.
When you come out of anesthesia, your heart has to pump more blood and work harder to wake up. With a weakened heart and low tone because of the missing elastin gene, sometimes it’s just too much for those with WS to muster.
I feel so blessed that my Carter has a healthy heart. We have been informed it has a small amount of extra muscle tissue, which is evidence his heart works harder than it is supposed to, but nothing that would lead to surgery.
We are due for a new echocardiogram; I guess it’s time to get it scheduled. A routine heart exam? No sweat. For my friend’s children who undergo multiple surgeries, my heart goes out to you for your strength and faith.
With the ending of a little heartbeat comes the shattered heart of a parent, grandma, brother, sister, aunt, uncle and friends.
Death is hard, no matter the age and regardless of a disability. However, when you have families who learn together, grow together and rejoice in milestones together, you also mourn together.
With that, I leave a letter of tribute to Carter, from my son Carter Kava:
I heard you went to heaven? Is it really true? Could it be that it’s sunny there?
It’s gloomy down here today because we’re sad you left us too soon. I might have met you or sang with you or danced with you at WSA camp when we were bigger.
I might have shared my drum set with you or shown you how to collect the best rocks. I probably would have hugged you, and I definitely would have smiled at you.
I understand you’re resting now. My mom says you were tired and went to meet Jesus. I know from Bible verses that he’s pretty special. I know he’ll love, hug and take great care of you. Though, you should tell him to send some angels to your momma because I think she’ll need a couple of big ones tonight.
Our hearts all miss you, friend. God bless you and thank you for making our world a better place. Although I never met you, your memory lives on in our hearts forever. I’ll release a balloon for you, buddy.
Kerri Kava can be reached at firstname.lastname@example.org