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The Quilt My Mama Built

Who We Are

The Quilt My Mama Built

The Quilt My Mama Built, A Marriage Made in Heaven!

I was recently watching an episode of Paramount’s series “1923” and getting lost in days gone by. Suddenly, my quilt appears on a bedroom bed in one scene. I’ve always known it was an old pattern, just didn’t know it was that old. Handmade quilts not only keep you warm and comforted on the outside but bring internal comfort to happy or weary souls too. I was moved to tears when Mama secretly hand-stitched the ENTIRE quilt and gave it to me as a surprise wedding present!

The Marriage quilt, as you can see is a series, of interlocking rings, made up of small scraps of cloth and each piece of cloth in my quilt has a story behind it. My baby dresses were made with tiny floral prints and as a toddler more playful fabrics to keep up with my activities. The years rolled on evolving into teenage tops and shorts with lime green and hot orange fabrics to reflect the “mod” times. Prom dresses are more elegant and grown up too. Some pieces of the quilt are springtime fabrics, light and flowery, and colorful. Other pieces, the times when sadness and trouble came, are heavier and more somber in color. A lifetime of cherished memories and outfits each made with my mama’s loving hands! 

For a reason, a season, or a lifetime, the quilt and family resonate with unending love.

Marriage is rather like a patchwork quilt. You take lots of different experiences, some good and some bad, and they all are pieced together to make up the fabric of a marriage. Sturge-Weber syndrome and the SWF are like that too! Our lives are intertwined with similar SWS experiences but still unique as each piece of our “personal cloth pieces” are sewn into our personal quilt of life. I’d like to think that when you reflect on the SWF and your interactions with us you treasure the same feeling of comfort and detailed personal care that I do. When I think back on all we have accomplished together, it boggles my mind!

Let’s face it, together we HAVE made a beautifully unique and cherished quilt, albeit virtually, from the fabric of your lives and ours too! There’s not a piece of SWF medical literature or learning materials that I don’t look at, and I’m not transported back in time to the place it needed to be printed and shared and given to the people who needed it. Video clips are the same too. Transported back in time as together we built a virtual quilt of love, hope, awareness, and research for each one of us and for the next generation too. 

You may remember the years when Anne Howard worked for the SWF. She would also make custom felt quilts for the little ones in the hospital. It was so fun to watch her choose the fabric which reflected the recipient’s personal interest (Frozen, Superman, Spiderman, etc.). She lovingly cut each strip of felt for the recipient and wrapped it up to send out knowing on the receiving end what comfort it would bring! She is a treasure!

Let’s each commit to adding to our SWF quilt this year…even if it is only a scrap or two ;) commit to giving a hand to some task, event, or donation that will bind us together and be ever stronger for the commitment. United against our common foe and celebrating all the gifts we have been given in good times and in bad. I’ll say “I do” if you will too! 


Faith, Hope, and Love,