Only a few more days until little Miss Sparkle's BIG day! And it is definitely birthday madness around here. Every day more cards, packages, and $36 for 36 Months donations arrive from all the amazing people who love our little princess. (THANK YOU! THANK YOU!) We are busily organizing our trip to Disneyland — yes, DISNEYLAND — and know Gwendolyn is going to be so beyond over the moon! Gramma, GrandPa, Aunt Kristen and Uncle Richard will be joining us for part of the time — and that alone will make Gwendolyn's trip! And we are so, so, SO, SO excited that the wonderful Calafiore family will be joining us, too!!! Sweet Hayden Calafiore is such a special friend to Gwendolyn and I know getting to see princesses, Tinkerbell, Mickey Mouse and all the other exciting visual overload with Hayden is going to be extra special — and between the two families, we are arranging some pretty extra special things for the girls. And it feels comforting to be navigating all of this with another SMA family (and one who has been there before).
Yesterday we got a wonderful birthday surprise from Linda of My Bunny and Me. She sent Gwendolyn her very own bunny embroidered with the Gwendolyn Strong Foundation logo on one ear and “Gwendolyn” on the other ear. And it is absolutely adorable! She also sent her a special blanket with her name embroidered on it, which Gwendolyn immediately insisted on using as her comfy blanket under her. It even matches her room – green, pink, and brown! (For a limited time Linda is generously offering this satin backed blanket at a discount for all GSF supporters ($29.95 instead of $48)! Don't forget to enter the My Bunny and Me giveaway for your own big cozy GSF bunny — it ends tomorrow!) And then to end the day our wonderful hospice nurse, Laura, gave Gwendolyn a princess bucket full of princess dolls! Gwendolyn was so adorable and serious about them all. She wanted to change their clothes, hold them, put them in the bucket, take them out of the bucket, and then make them dance to…of course…princess music! One thing is very clear — Gwendolyn KNOWS it s her birthday. She totally gets it this year. When we say are you almost 2 — she giggles. When we say are you almost 3 — she proudly smiles and says, “Ga!” (aka Yes!)
Yesterday we also had Gwendolyn's IEP (Individualized Education Program, i.e. plan for preschool and how her special needs will be accommodated). We sat in our living room with 15 different people (Team Gwendolyn is growing!) — some who have known Gwendolyn since she was just 6-months-old and some we are just beginning to know. But all of them recognize her bright spirit and thirst for experiences and are advocating right alongside us to find creative ways to provide Gwendolyn the highest quality of life. And what more can a parent hope for than to have others believe in your child?
We have had so much going on — all really, really amazing stuff — that our heads have been spinning a bit. But even with the many irons in many different fires, we are so, so appreciative of the people in our life and all that they do for us and Gwendolyn. The continued kindness of others, the constant support, and the general desire to help and see good things come our way leaves us speechless — and to say we are humbled is putting it lightly. It makes us pause, take a step back, and reflect on how fortunate we are to have such extraordinary people in our lives — and how Gwendolyn's life is all the richer for it.
Since Gwendolyn's SMA diagnosis birthdays have always made us reflect, but this one feels different. In the past we always celebrated (in a big way), but it was also bittersweet knowing that her birthdays were limited. And while that hasn't changed, now, over these last few months, as we prepare for preschool, as she gains independence in a power chair, as she becomes so very clear in what she wants out of her life, bittersweet doesn't seem to define this birthday celebration. It simply feels…sweet.
Disney here we come! Hope you are ready for us!