Wednesday, December 7, 2011

Gracie Update: Born With A Deletion

To kick off this post, I want to go ahead and set the tone for the remainder of this post. 

Gratitude, Humbleness, Thanksgiving, Gratefulness, Blessed, Steadfastness, Adoration, Praise, and Unwavering Faith.

The above "attitudes" are what I want you to take away from this share. Because this what Jonathan and I have taken away from it. What I want you to understand, is that this is not a time for anger or fear, but a time to appreciate the abundance of blessings that have been given.

About two months ago Grace was diagnosed with Williams Syndrome. The diagnosis came out of left field and hit us hard. During my grieving period I had two choices: #1 I could blame God for this turn of events in our lives. OR #2 I could rely on Him, to bring Joy into the hole that I had felt been punched into our household.

We chose the latter, and I am SO thankful we did. The past two months have been an emotional rollercoaster to say the least, but not once did I feel alone on it. When I need to break down and have a good cry, I know He's there; when Grace has a BIG Breakthrough and I can't stop rejoicing, I know He's there; and when I know my daughter has been pushed to her limit with Dr.'s, I know He's there. Choosing God, instead of blaming God has given us a world of opportunity to grow into a deeper and more personal relationship with Him than we've ever known. When we say we are trusting God wholly with the life of our child, we mean every word of it. 

It is because of this relationship that I am able to finally sit down and write this post (I have sat down many times and started, but never could finish). We wanted the chance to first tell our families and some of our closer friends, and we needed time to process the change in our lives that was taking place. But now, now, I think it's time; and we are ready to invite all of you to join us in prayer for our little angel.

Grace December 2011

A little about Williams Syndrome... by ABC News

The two videos are a Part 1 & 2 from a 20/20 Special.

A little about Williams Syndrome by The Williams Syndrome Association

"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.
Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing.  Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.
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."

Yes, there is A LOT that Grace has to overcome. But her support system is fantastic and we are blessed beyond measure for that. :) And though we are sad with the answer, we are thankful to finally have an answer. Now we can refocus our attention on how we can better serve Gracie.  :) And I can't express my relief to find out after two years; that it was nothing that I was doing or wasn't doing that caused her to be the most challenging baby for the first 15 months. It was simply Williams' going undiagnosed and un-addressed. I cannot express how thankful we are to the medical professionals here in DFW, without you, we would still be living undiagnosed. Ya'll are one of the best things that has ever happened for our little sweetie! :)

If you would like to learn more about Williams Syndrome feel free to check out the WSA website:

To show your support for Williams Syndrome families you can "like" the sites listed below:

Stayed tuned for Grace Updates, WS Walks, and Benefits come to the DFW Metroplex!