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:

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:

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.

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

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.

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.

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.

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.

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.

I’m giving myself one day to emotionally vomit all over my blog, and to get out all of the pain and ugly tears that I have been bottling up for the past three years. The rest of the week will be much more useful and upbeat, which I think is a much better reflection of our life with such an amazing little girl. But there is a hard part that I try to ignore as best I can, and I feel like neglecting to mention that side of it gives an unrealistic picture of what this life is like. I hope this does some good, since several boxes of tissues will give their lives during the writing of this post.

So, if this is the first thing that you are reading about Williams Syndrome, and my sweet girl, I encourage you to go back to my last post and to come back later this week to read the good and the bad and the amazing…because this is really just the ugly.

Of everything I wrote last year about how it felt when we found out that Sadie has Williams Syndrome, one thing stands out to me now. There is one thing that I wrote that I know I could never explain better, could never word in any way that more accurately reflects the feelings that I have every day.

I had heard people talk about “Mommy Guilt,” and I had a vague understanding of what it meant to feel personally responsible and completely invested in the life of someone else.

But I never really understood these feelings before I became a mother. I never knew how powerful that worry and concern and guilt could be. When my sweet little girl was born, so much of me changed. An overwhelming majority of the thoughts in my head at any given moment now revolved around the happiness, health, well-being and future of a tiny little person who was now my biggest responsibility.

And then when her diagnosis came, I understood that worry and guilt on a whole new level. Now, over three years after our baby girl was diagnosed with Williams Syndrome, worry and guilt have become just as much a part of me as any other part of my personality. It’s become so much a part of me that it doesn’t even feel unusual anymore…the feeling of being almost overcome with guilt and worry is just part of my life now.

I know in my head that it is not my fault that she has WS. I have very good reasons (doctors and geneticists and people who know much more about this than I) to believe that it happened completely randomly, and that nothing I did caused it, and therefore, there was nothing I could have done to prevent it.

But my heart has still not been able to accept it.

My heart still wants to believe that there is something that caused it, some reason, some…”why.” Maybe it’s that if I feel that there is a “why,” then there also has to be a way to fix it. And I want more than anything in the world to be able to “fix” her.

I want those genes for her, and I want that future for her that she will never have without them. I would give anything of myself to be able to give those genes to her…I would give her mine if there was a way, even if it meant that there was not enough me left to go on afterwards.

Some people with children with special needs get very upset when someone says this, because they think that you’re somehow rejecting your child and denying who they are. I can see that rationale, but I don’t exactly agree with it. I love her for who she is, and who she is includes having Williams Syndrome. I would love her no matter what, and I will forever. And I know that a big part of her personality may be a direct result of her having WS.

But that doesn’t mean that I would not give that up in order to give her the best chance at living a long, healthy, happy life full of every opportunity, every joy, and every experience that she may desire. She has the most sweet, loving, amazing little personality, which is at least partially caused by her having Williams Syndrome. But if I could give her those genes that she is missing and take away everything that is Williams Syndrome from her, even knowing that it may completely change who she is, I would do it in a heartbeat.

I just want my baby to be ok.

I just want my baby to be ok.

What it boils down to is that I feel like I gave a life to my precious baby girl that was going to make the rest of her life hard from the very beginning…that it was all my fault, and that there is nothing I can ever do to fix it.

I just want her life to be everything that she wants it to be. And I never want to have to tell her that she can’t do something, that she is going to miss out on an opportunity, just because she doesn’t have those genes. I never want her to have to deal with rejection of any kind that is based solely on the fact that she has a disorder that makes her “different.”

But I can’t.

I can’t trade anything to take this disorder away. No amount of wishing and hoping and praying will make up for that missing genetic material. No one ever even mentions a “cure” for Williams Syndrome, because there isn’t one, and there isn’t any hope for one. The very fiber of their being is made up of something that is incomplete, and it is so pervasive through their little bodies that no one therapy or treatment or medication, or even a cocktail of all of thee above, could ever come close to making up for what is missing.

There are band-aids for each of the issues that come with WS. There are heart surgeries if the SVAS gets really bad. There are medications and treatments for the digestive issues, the vision and hearing problems, the thyroid and blood pressure and sleep issues. There are therapies that can help with the speech delays, the fine motor and gross motor deficiencies. And there are methods and medications to help with the attention and anxiety problems. There are endless aids to improve the issues that can come with Williams Syndrome, but they are all ongoing treatments that will never completely “fix” any of the problems.

And I am grateful for the Williams Syndrome Association, doctors and researchers across the world who have given us these resources, and given us the knowledge of what we can utilize to help our kids. I am eternally grateful for all of the help that is available to us.

But there are no treatments, no medications that can ease the pain of guilt.

Even if I make a full-time job out of getting her the best medical care that I can find, coordinating all of the appointments and therapies, keeping up with every test that needs to be done and every screening that has to happen, and trying every possible activity at home to help her master skills that most children just pick up on their own (which is about what I do now)…the guilt is still there.

I want so bad for her to be able to have a “normal” life. I want her to go to school and be excited about learning. I want her to giggle her head off with her best friends. I want her to feel loved and accepted and wanted. I want her to be able to live independently, and make her own life when she is ready.

I want her to know the joys of freedom and life and love.

I want her to know the overwhelming love that I feel for her, and to have the depth of understanding to be able to feel it herself for someone else. I want her to have the chance to know that love for her own children, if she chooses to become a parent.

It breaks my heart to think that it will not be possible for her to do any of these things.

All of these experiences are extremely iffy for her, if not completely unlikely. I want to be able to worry about what kind of friend and wife and mother my daughter will be, not whether or not she will be able to be those things. I don’t want to think that any of these things are impossible for her.

So instead I try everything that I can think of to help her however I can, and I keep hoping that maybe she will prove everyone wrong. That she will go on to be that rare exception that is able to lead a full, healthy, mostly normal life, despite those missing genes. I try to ignore those limitations that I know may be there, in hopes that I can will them away.

I try to remind myself that her health problems and developmental delays could be much more severe, and that I should count my blessings more than I count my challenges. And I do, most of the time, keep myself from wallowing in that worry and self-pity and guilt by focusing on the positive.

I know that we are so lucky that she is doing as well as she is, and I know that everything could be so much worse. I know that there are other children with Williams Syndrome who are in hospitals right now fighting for their lives, mothers of little tiny babies who maybe never leave the hospital, and women all over the world who have endured the pain of losing a child to complications from WS and millions of other ailments and disorders.

But that knowledge does not diminish my pain. Knowing that it could be much worse does not mean that this does not hurt still.

I know that nothing will ever take away the guilt of feeling like I have failed my baby, and the pain and helplessness of knowing that there really isn’t anything I can do to fix her. As her Daddy said when we got the diagnosis, I would love her even if they told me that she was a fish. I will always love her for who she is, Williams Syndrome and all, but that does not mean that I’m happy that she has it, or that I don’t wish that she didn’t have WS.

They say that time is the only thing that can lessen the pain of these wounds, and I will continue to wait as patiently as possible for that time to come, though I’m beginning to wonder about the validity of that statement.

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.

I’ve been pretty slack on the blogging lately, which is entirely due to the fact that I have been busier in the past 6 months than I think I have ever been in my life. Most recently, I’ve been busy with all the usual (work, kids, life, trying to find time to sleep), as well as planning the Second Annual South Carolina Walk for Williams!

Our walk last year was a huge success, and this year is looking like it is, yet again, going to blow all of our expectations out of the water!

To celebrate the walk and National Williams Syndrome Awareness Week, I’m going to continue the tradition I started last year here on my blog and dedicate an entire week to our precious little girl, who I lovingly call “Sadie” (due to privacy concerns) on this blog.

Welcome to Sadie Week!

Over the course of the next seven days, I’m planning to share more information about Williams Syndrome and how it has affected our lives. Last year, I tried to write about our experiences living with Williams Syndrome, and about our thoughts on the future of our daughter and our family, but it was honestly just too hard. I’m still not entirely comfortable discussing the future with anyone, and still can’t do so without crying, but it is something that I really want to address. Hopefully, I’ll be able to get through writing that post this year.

So, to kick off “Sadie Week,” I want to include some links to last year’s posts. I think they do a great job of describing what it was like for my family to go through the diagnosis, and how it was for us in the beginning.

May 10, 2010
Sadie Week and the First National Williams Syndrome Awareness Week
A little about Williams Syndrome and some adorable pictures of our sweet girl

May 11, 2010
Sadie Week – The Diagnosis
Part One of my thoughts and memories of getting the diagnosis

May 12, 2010
Sadie Week – Learning to Fly (or just…be)
Part Two of the diagnosis, Welcome to Holland, and the beginning of our changed life

May 14, 2010
Happy Birthday Sadie!
Repost of Sadie’s birth story, in honor of her 3rd birthday

May 16, 2010
An Amazing End to an Amazing Week
Brief recap of the walk

If you only have time to read one or two of those posts (or maybe half of one, since I couldn’t order a cheeseburger in 500 words or less), please consider reading the May 10th post to learn more about Williams Syndrome. The emotional one is the May 11th entry.

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.