We awake early to position the tables and chairs, hang the last minute decorations, set everything just right. Tony leaves to post direction signs and pick up lemonade while I go upstairs to dress the children. In the middle of the hustle bustle I look out the window to see God's hands and feet right there on our front lawn. Neighbors arriving with leaf blowers and trailers, quilts and raffle tickets and hands empty ready to hold babies, hang decorations, offer whatever might be needed. Friends and coworkers stepping out of their cars with morning muffins and face paint and lollipops for the children. And I hold Luisa and I say, "For you baby. For girls everywhere who are not forgotten. You are not forgotten."
Occasionally I settle into bed early and pick up Luisa's baby book, filling in blanks here and there. Family Tree page. The World During the Year of Your Birth. First Visitors. First Outing. First Holiday. One Month. Two months. Five Months. First smile - 5 weeks. Check, check, check, check. Rolled Over - check. Sat unassisted - check. Stood up - 19 months. Then, blank, blank, blank. So many blanks on the developmental milestone page. Monthly summaries of her first year grow difficult to write around 10 months of age. And honestly, it makes me terribly sad. Tony touches my shoulder. "Sarah put it away. Give it time." I close up the book, placing it neatly back in the box.
A few weeks ago we hosted a lemonade stand to raise funds for Rett Sydrome Research through the International Rett Syndrome Foundation. If you know me, you know I like to plan a party. After numerous, generous donations from our community we set up a lemonade stand right there in our side yard. Balloons, a bouncy house, tables with crafts, face painting, slides, swings, ball pit, and loads and loads of lemonade and lime-ade. It was a celebration. It was a fundraiser. A giant play-date. One attendee called it an old-fashioned barn raising. After four hours of hugs, numerous refills, and enough bouncing to wear out even the most energetic child we gathered up the vase with Luisa's picture, stuffed full of love offerings. Cash and checks saying, "This is what we can do. This is what we can do to help you, Luisa. This is what we can do to help you, sweet girls with Rett Syndrome. This is what we can do. Give to a cure. Give to the research. Buy mice and microscopes and glass slide plates to stain with genes and things we don't understand. This is what we can do." So we count the checks, the cash, the online donations and we hold our breath. Really? This is generous love. This is extravagant care. This is a pouring out. $4,136 as of the day of this posting. $4,136!!!
For me it was a realization. Her baby book may be empty of the traditional milestones but it will be FULL of love and adventure. Two other baby books sit on our shelves, TWO!!! How blessed we are. And the third is being written. It will look quite different than the other two but it will not be EMPTY. It will not be just tears and disappointments but rather love and success. milestones reached and perhaps lost, maybe to be regained again someday. Adventure and laughter. Along side her story of struggle, her baby book will contain images of Lemonade Stands in her honor, of people smiling and holding her and blessing her with their prayers.
Lemonade Stand day was our announcement day. Our family is changed, our little girl no longer "typical (whatever that means)," our hearts broken but mending. We received professionally, edited pictures from the day. Yet another gift offering. And I will print them. And glue them. And write cute captions. And maybe someday she will read it and maybe not but nonetheless, the joy will be there. The love so generously outpoured. I will read it on hard days as her shell thickens. I will read it and remember how many love her, pray for her, cheer for her. I will look into the purple hued pictures and say, "Milestones and blanks or not, this life is significant. This life is good."
(all photos courtesy of Claude Hupp - Thank you Claude!!!)
