maddie
“... I know that it will be Maddie’s courage
and determination ultimately leading her
to further accomplishments and true
happiness.”
Maddie and I wandered the aisles of a local bookstore this afternoon, savoring the
carefree summer day. Lost in my thoughts, I was quickly brought back to the present
as I heard my little dolly’s voice. “Mom?” she called. “Yes, Maddie,” I responded as I
glanced over at the children’s section. “I love you!” she exclaimed. Another treasured
memory.
While my head swirls with snapshots of scenes taken during Maddie’s life, I wish
I could share them with the twice-crowned mother who cradled her newborn and
pondered all of life’s uncertainties. I was that mother, embracing Maddie, staring at
the six-foot stork that graced our front lawn and announced her arrival. At that time,
my mind was blurred by insecurities. I wanted to flash forward, to read the last several
chapters of Maddie’s story, to be comforted knowing that everything would be alright in
our world.
A close friend shared that this was an impossibility, and furthermore, would
deprive me of the joys that awaited. It took me quite some time to appreciate that her
philosophy had merit. After all, my little girl had been diagnosed with Sturge-Weber
syndrome and was battling seizures. Mothers at the park were worried about scrapes
and bruises, yet I worried about Maddie’s hemispherectomy surgery on the horizon.
Thankfully, and with the support of my Sturge-Weber Foundation family, I have
emerged a stronger woman who has found peace with navigating each day as it
unfolds, treasuring the many gifts along the way.
My wish is that by sharing Maddie’s successes, I bring hope to other families and
provide encouragement to dream big for our children. At eight years old, there is so
much to celebrate! Maddie can:
• Run after her sisters, Rachel and Olivia
• Snuggle contently before drifting off to sleep
• Play tennis, serving one-handed
• Hoola-hoop
• Read!
• Write a love note
• Catch a fish on her princess rod at the pond
• Remember where Grandma hides the candy
• Courageously perform at the school talent show
• Independently swim the length of the local pool
• Recognize when a friend needs a hug
• Get into mischief
• Blow a bubble with gum
• Say her prayers
• Give 100 kisses a day
These days, as I wonder about the future, I am excited by all the possibilities! While
we are certain to encounter unchartered challenges, we will tackle them as a team. Our
family members will take turns guiding, yet I know that it will be Maddie’s courage and
determination ultimately leading her to further accomplishments and true happiness.
I’m so very blessed that I was chosen to be her mom! Stay tuned to learn more as
she grows and I eagerly anticipate hearing about your child’s proud moments too!
Stories of Hope
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