Many times, as I encounter (or Sophia encounters) another friend, they often declare how she has touched their soul and I’m reminded of the miracle in Sophia’s giving heart. Our “new” friend will quickly tell me how lovely and amazing she is and how she gives her all, in all she does. I smile and rejoice with them and tell them, “that truly is her gift. She is a miracle and a generous being, always! She touches our family, each and every day, in the same way.”
When friends, (new or old) want to learn more about Wolf-Hirschhorn Syndrome, I extend this website, wolfhirschhorn.org (like our geneticist counselor shared with us) to give understanding and a full picture of what it means to live with WHS . I remember, distinctly, our counselor suggesting we visit THIS website, FIRST, before we navigate anywhere else on-line. She said, “It’s the most real and comforting website they have found, in regards to gaining understanding (with others) in sharing our newly given diagnosis.”
I’m so glad I trusted her and when I found the site and when I pushed the “Home” tab (three years ago) I knew…I was home! The banner of attributes were all to familiar and so were the children’s faces. Just like my Sophia.
I’m always comforted by the pictures of our children and their attributes when I come “home” to the website. I identify as I’ve known my daughter, Sophia, attending life with Wolf-Hirschhorn Syndrome. I’m thankful to know and adore many people, here, and even have met a few, in person. We can add many, many more, to the banner of attributes because living with our children’s wealth is immeasurable compared to their living without some genes.
Since then, the acronym, WHS has come to mean… We Have Story (with heart and soul) more than it means Wolf-Hirschhorn Syndrome (without a part (deletion) of the short arm of chromosome 4.)
Here’s another part of Sophia’s story, generous girl, overflowing, offered in this picture mosaic.
GENEROSITY…Freely giving to those around them, an overflowing joy welling up, deep within them and even out of their most difficult trial.
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Janet, this was such an uplifting post! Sophia is such a sweetheart. Loved your pics. We have found a home here too, on the website. The community is bigger than we know. I often hear from people who read and follow the site, but haven’t yet taken the plunge and posted. If you are someone who DOES post, please keep doing so. We all learn so much from you! If you have been reading and thinking of posting, it’s never too late to start. You don’t have to post the entirety of your child’s story. It can be a small moment of discovery or accomplishment. Or a challenging day that broke you a bit. We’ve all been there and can take so much comfort in sharing these things. Thanks for all that you do Janet!
Our children have so many challenges, limitations and delays but they have the most advances spirit/hearts I have ever met. They are miles ahead of most of us. I watch Rochelle share her sweet nature with others everyday. The response of others to her is so encouraging. She is trusting, innocent, loving, easygoing, peaceful, generous, forgiving. I will spend my lifetime trying to become who she is and my achievements will be modest in comparison. Unfortunately the world sometimes cannot see her great gift. The syndrome acts like a barrier to some. Sweet Sophia radiates all that is truly good.