Sadie Week – What is Williams Syndrome

This post is part of my celebration of the Second Annual National Williams Syndrome Awareness Week, lovingly called “Sadie Week” on my blog. I’m taking the opportunity this week to write about my experience raising and loving a child with Williams Syndrome, in hopes of raising awareness and understanding of this unique disorder.

According to the Williams Syndrome Association, this is Williams Syndrome:

“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.

But there are major struggles as well. Many babies have life-threatening cardiovascular problems. Children with WS need costly and ongoing medical care, and early interventions (such as speech or occupational therapy) that may not be covered by insurance or state funding. As they grow, they struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge. And as adults, most people with WS need supportive housing to live to their fullest potential. Many adults with WS contribute to their communities as volunteers or paid employees, for example working at senior homes and libraries or as store greeters or veterinary aides.

Just as important are opportunities for social interaction. As people with WS mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression. They are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often don’t process nuanced social cues and this makes it difficult to form lasting relationships.”

You can read more about Williams Syndrome, in a clinical sense, on the Williams Syndrome Association website.

But this is what Williams Syndrome means to us:

Williams Syndrome Awareness Week

Our sweet, precious girl, who can bring sunshine to the most dreary day, and who can warm your heart with the most loving hugs.

To us, Williams Syndrome is doctor appointments…echocardiograms and blood tests and screenings and check-ups. It is having a daughter who has already seen more doctors in her four years on this earth than most people see in their entire life. It is accidentally showing up at the gastroenterologist office on the day you were supposed to have an appointment with the cardiologist, because there are just too many appointments to keep them all straight. It is two teaspoons twice a day of this and 1mg per day of that. It is care plans and medication schedules and health care checklists.

It is having a group of doctors and nurses who know your child, love your child and who do everything they can to help you navigate this unknown and frightening territory. It is care coordinators and directors and any number of wonderful people who make you feel like you are not alone, and that your child will have the help that they need.

To us, Williams Syndrome is three therapies per week, one hour per session. It is speech and physical therapy and occupational therapy. It is realizing that you spend twice as much time with the therapists as you spend with any of your friends and family.

It is realizing that those therapists you see every week have become family. It is watching these people come into your home, doing everything that they can to help your little one, even when it means coming up with brand new ideas just for your child. It is watching your child reach a milestone, and seeing the therapist celebrate with you, as if it was there own baby they were celebrating.

Williams Syndrome Awareness Week
Sadie, age 15 months

It is dealing with the frustration of behavior problems that never seem to go away, worrying that you are pushing your child too hard to understand a concept that they are incapable of understanding, or worse yet, not pushing them hard enough and using their disorder as an excuse, thereby cheating them out of the benefits of necessary structure and discipline. It is worrying over finding the balance between what you can do to help them, and what power you have to make a difference in their life, versus what is hard-wired into them and cannot be changed. It is wondering if those things that make their life difficult are the direct result of them having Williams Syndrome, or a direct result of your failure as a parent.

It is seeing the progress and achievements and growth with pure joy and pride. It is appreciating every little step, every little milestone, every new word, savoring and celebrating each little triumph. It is the happiness that comes with not taking any of those accomplishments for granted.

It is wondering how much of what you love about your child is their personality, and how much is the direct result of those missing genes.

It is looking at your child and knowing that no disorder can ever change that this little person is a perfect product of the love between you and your spouse

Williams Syndrome Awareness Week
Sadie, age 15 months, with Mommy and Daddy

It is wondering how your child will feel when their younger sibling catches up to them, or passes them, in school. Or how your younger child will feel when they pass their older sibling.

It is watching your children grow together, and become best friends. It is watching that mutual love and admiration they have for each other, and seeing them learn from each other.

It is wondering how your younger child will feel about their older sibling with WS. It is wondering what effect the relationship will have on both children, good or bad, throughout their lives. It is worrying about jealousy of the child with WS who gets all of the attention. It is worrying how the younger child’s personality will be effected by the attention, both positive and negative, that the older child constantly receives. It is worrying about how to treat them both fairly and equally when one obviously needs more than the other.

It is hoping that your younger child will have a deeper respect and compassion for all of humanity, and will ultimately be a better person, for having grown up with such a special sibling.

Williams Syndrome Awareness Week
Sadie and Ruby, Easter 2011

It is the feeling of unease in a group of parents of “normal” kids, because you just feel like you can’t always relate. It is the reluctance to share your own stories and ask for support because of not wanting to burden them with your troubles or because of the fear of losing their acceptance. It is the loneliness that comes from feeling like you have no one to understand what you’re going through.

It is watching your family and friends come together to support your child.

It is a community of families, all dealing with the same issues, who support and love each other, and can share in common experiences and challenges.

It is dealing with the horribly unfair reality that your child has been robbed from birth of the chance at a “normal” life. It is the awkwardness and hesitation that comes with trying to explain such a rare and unusual disorder.

It is the satisfaction of knowing the research being done on this disorder is helping our medical community to develop a new understanding of how genes affect our health and our personality, and even our understanding of the experience of happiness and unconditional love.

Williams Syndrome Awareness Week
Sadie, almost 4 years old

To us, Williams Syndrome is wonderful and terrible, painful and fascinating, unique and extraordinary.

There is much more to our little girl than just Williams Syndrome, but it is a big part of who she is, and as a result, it is a big part of who we are as a family. There is a lot of bad that comes with it, and there is a lot that is difficult. But there is also a lot of wonderful.

Good and bad, Williams Syndrome is a large part of our life, and I know that we are stronger as a family because of it.

South Carolina Walk For Williams Syndrome

Click here to read more posts from “Sadie Week.”

If you would like to participate, attend, or learn more about the South Carolina Walk for Williams, you can visit our walk website here.

Please consider making a donation to the Williams Syndrome Association in honor of our sweet little girl and the South Carolina Walk for Williams. A donation in any amount is greatly appreciated, and will directly benefit individuals and families living with Williams Syndrome. Here are links to the three online fundraising campaigns that were created in our daughter’s honor:
South Carolina Walk for Williams online donation page
Campaign created by her uncle
Campaign created by The BFF
Campaign created by us, her parents

* And please note that names are changed for privacy…sorry to be so confusing and all double-o-seven wannabe on ya.