“Every thing is as God made it; not as it appears to us.  We have the world so much in our hearts, are so taken up with thoughts and cares of worldly things, that we have neither time nor spirit to see God’s hand in them.  The world has not only gained possession of the heart, but has formed thoughts against the beauty of God’s works.  We mistake if we think we were born for ourselves; no, it is our business to do good in this life, which is short and uncertain; we have but little time to be doing good, therefore we should redeem time.” Ecc 3:11-15 (Matthew Henry Concise Commentary)

I needed to redeem time.  I needed to do what was good for Emmy.  After all, I wasn’t born for myself, but to do good with this life that I’ve been given.  When I learned the beautiful mystery of her genetic profile, I had to let go of my perception that “normal” is the only “good” for my children.  I had to choose to see things differently…hopefully a little more like the way God sees the things He creates.  My intention for this blog is not to focus on all of the specific medical and developmental issues of Williams Syndrome, but maybe you are wondering what specifically Williams Syndrome is and what it means for Emmy.    Maybe I could take one post to glimpse into the intriguing world of her DNA.  At conception, part of Emmy’s 7th chromosome was deleted.  Pete and I are not carriers of Williams Syndrome, the deletion happened spontaneously.  If we were to have another child, they would likely not have WS.  Specifically, Emmy is missing about 26 genes, one of which is the elastin gene which keeps our blood vessels open and flexible. The deletion of this gene is why so many WS children have significant or life threatening cardiovascular defects.  We are so grateful that as of now, Emmy’s heart is healthy.  There is a long list of other physical struggles that WS children as well as cognitive and developmental delays.  Because it turns out that missing just a few genes affects almost every part of a person’s well being.  If you missed my first post, here is a video that that gives great insight into the world of Williams Syndrome.  http://www.williams-syndrome.org/ws 

 

Emmy will be making her way through this world that is often not inviting or compassionate to “different” and it does break my heart that there will be difficult times for her.  There will be things that she will face that my other children will not have to face.  And of course, her struggle is not unique.  There are many kids with special needs that are trying to make their way. I think we can make their journey a little easier by taking a deeper look into their profiles, embracing them for who they are and what they offer this world which so desperately needs to redefine beauty.  I sound awfully preachy…next post will be another letter to Emmy.  🙂  

 

 

4 thoughts on “

  1. Your words are beautiful, Katie. I was convicted myself, as I read your words about how we think our perception of normal is the only good. Sometimes, I get mad at God that my life hasn’t followed the “norm”. I needed this perspective to no let myself sink in it all today. I’m sad with you for the grief that comes with this journey you and your family have set out on, and rejoicing for all the gifts and joy you will experience because of it. To experience joy and grief at the same time is something I’m convinced only He can teach us, and the thing that can connect us so strongly in this life. After all, this is our only chance to learn – for one day there will be no grief or pain anymore, and all will be whole.
    Wish we didn’t live so far away so I could hug and squeeze your Emmy.
    Much love and care,
    Corrie

    • Corrie, it brings me great joy that posting this brought you some encouragement today. I know our journeys are different but I have thought of you so often since Emmy’s dx and I find it striking that our girls’ birthdays are so close and that we, as their parents, are walking a road we didn’t prepare for. I feel connected to you in that special way. Praying for you often-I truly do. So good to hear from you. (((Hugs)))

  2. Mick and I are praying for Emmy and your whole family. Thanks for more info about WS, I’ve been wondering. She’s such a beautiful, precious little one… we’re excited to follow along as God brings beauty to the world through her life!

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