I forget that Emmy has a Congenital Heart Defect. I don’t know if other Williams syndrome parents feel this way, but I am very much focused on all of the various aspects of Williams syndrome…the heart defect seems almost secondary.
It SOUNDS ridiculous. Her heart is what’s keeping her going. Her heart is essential for life.
But when we found out she has Williams syndrome, those were the only 2 words I Googled. Not “Congenital Heart Defect.”
It could be that people with Williams syndrome can have a host of medical issues, so I was trying to absorb the laundry list of possible problems instead of focusing on just one.
It could be that I’m not a medical expert, so it’s much easier for me to research and comprehend other aspects of Williams syndrome.
It could be that I STILL have a hard time wrapping my head around the fact that Emmy was born with a serious Congenital Heart Defect, had open-heart surgery this past May, suffered 2 cardiac arrests, and spent a week on life support.
Whatever the reason, I’ve always seen Emmy falling directly into the Williams syndrome camp. And, therefore, the Williams syndrome support groups were initially my home.
But over the past year, I’ve found a home in another support group too — one for parents of children with Congenital Heart Defects.
I’m the only one in the group who has a child with Williams syndrome. But the people I’ve met as part of the group totally GET IT. They have been so loving and supportive and helpful and encouraging. When someone says to you, “I hear you. I understand,” it’s the best thing in the world.
So when we went to a Congenital Heart Defect walk over the weekend, I was so happy to see all of my support group buddies and a team of people from the hospital who came out to walk with us.
And there is one special mom, who I won’t write about in too much detail here — to respect her privacy. But I walked on a team for her sweet son. He was only 1 week older than Emmy.
And, when Emmy went into cardiac arrest earlier this year, this very special mom dropped everything to come to the hospital — even though she had lost her son in that very same hospital, on that very same floor, only 3 weeks prior. You don’t find people like that every day.
So now I’ve found two homes — one in the Williams syndrome community, and the other in the Congenital Heart Defect community.
And it’s become so clear that I NEED support. In the past, I would’ve been way too ashamed to join a support group. I would’ve been too afraid to show weakness. I would’ve shouted from the rooftops that “I can do this all by myself!”
Now I’ve grown wiser. When I’m in a support group, I learn from others who have walked this path before. I lean on others when I can’t stand on my own. And I hope that I give something in return — even if it’s just sharing our story.
I also love to laugh. And support groups can be a Cry Fest. Sometimes.
But, usually? Usually, we’re laughing.