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.
LOVE!! We are blessed to have you in our group. It’s been a life saver for us all! xo
Thanks Erin! 🙂
I really enjoy reading your writing about your journey with Emmy. I was praying hard when I was so scared for you when Emmy was so sick. I thought of your whole family and your daughter Charlottte.
My daughter did not have major heart issues but had Williams syndrome. She died because of a terrible doctor’s error prior to even beginning scoliosis surgery. She was 5 1/2 years old. I helped from a group thru WSCLF and would have done the same for the WSA. Everyone is the group is in a different place in their grief after losing their child with Williams syndrome. I don’t think any of the kids died from ws but rather a complication associated with ws. I try hard to provide support but feel so lonely trying to help others who are in such deep pain. I get it! Everyday is so painful for me. I am glad you have found so many people to support you, laugh and cry with you. Your story is amazing and you didn’t have a choice to fall apart. You would do anything for your girls . I am glad Enmy is doing well as well as all of you.
Jen, thank you so much for your comment. I am devastated by the fact that you lost your daughter — and especially by the circumstances. I know your support group provides so much help to others. I think Williams syndrome is interesting in that we see our children reflected in others. When I see another child with WS, I also see Emmy. Perhaps you continue to see your daughter reflected in other children with WS as well? I am so very sorry for your incredibly painful loss. ❤ -Vanessa
EVery word you said is true – and I think we (CHD parents) need help & support from others that understand. I look forward to the support group now – Brian and I are so happy we joined – it has helped us tremendously! I completely get that. We also joined a couple online groups as well. Every little bit helps the insanity of it all.
I’m so happy you guys joined the group too!!
Hi…I stumbled upon your blog through another blog posted on the WSA Facebook page. My son was just diagnosed with WS this past January. He is now 16 months old, and I am desperately looking for a place to connect with other families. I post things on the Midwest WSA at times, but I feel like I get little to no response, and I’m not sure if that’s because there aren’t many kiddos in my area, or they’re just not Facebook people. Just looking for a group that can relate, and possibly offer advice and support when I need it. I love that the WSA posted about the blogs, because I’ve been reading, reading, reading just trying to feel connected with others going through what I’m going through. I even sent an email to the WSA Facebook page recently looking for some advice and never received a response. We are thinking of moving out of our current home state of IL, and I was looking for advice on how to find the best states that will best serve our lil guy (government programs, schooling, etc…). Are there other WS groups that you belong to that I could possibly connect with others? Thanks, Tracy
I’m so glad you reached out! It really does help to have other parents guide us through the journey.
I have a few suggestions:
-“WS Support”: There’s a Facebook group called “WS Support” that is backed by the WSA. It’s a closed group for caregivers of those with WS, so you’ll need to send a request to join. But once you’re in, it’s an awesome resource. You can post freely on the page and ask questions of the many, many, many parents on there.
-Email: Feel free to email me at email@example.com, and I’m happy to answer any questions I can or direct you to someone else who can help.
-WSA Website: If you go to the WSA website and click “Contact Us” (http://www.williams-syndrome.org/contact-us), you’ll see phone numbers and an email address for inquiries. Also if you click on the bottom link to “WS Community,” you will find the contact info for your Regional Chairperson. All of those people will be very helpful.
Hope that helps!! Look forward to seeing you around!
Thank you, thank you so much! I really appreciate all the info. I just sent a request to join the WS Support group. Hopefully they will accept it. I”ll also check out the WSA Website’s contact information. Tracy
Great, Tracy! Please let me know if you don’t hear back from “WS Support.” Look forward to seeing you online! 🙂