Four years ago today my husband and I huddled together in a New York hospital room waiting to hear the prognosis of our baby girl who was in surgery. Under the watchful eye and skilled hands of Dr. Alejandro Berenstein, she was bravely undergoing her 4th angiogram to determine if a 4th embolization procedure would be needed to repair the rare disorder that had so cruelly taken up residence in her brain, Vein of Galen Malformation (VOGM).
Four years ago, we were blessed with a cure.
Today Katie is in first grade. Academically she’s meeting her milestones, loves school and excels in art, which is evident from the pile of drawings, cards and stick people adventures we have posted, filed away and piled around our home. Aside from her prominent facial veins and being mildly uncoordinated, she is the epitome of a happy, healthy 7 year old. And you know what, I’m going to attribute her lack of coordination to my less-than-athletic genes.
During the years we wandered around the VOGM lion’s den, we spoiled Katie, particularly with regard to her diet. If she didn’t want to eat it, we didn’t make her. Now we have a child who hates every vegetable except potatoes and all fruits except bananas. We’re working on it. Otherwise, her demeanor is as angelic as this picture of her on her first Halloween.
For a child who was coddled, sheltered and spent a fair amount of time in the shade of my helicopter parenting, she continues to be a kind, thoughtful, loving little girl.
When we turned our calendar to May this year, Katie noticed the notation, “Katie – 4 year Anniversary.” She asked what it meant and I told her. She may not remember much about our trips to New York but she knows about her condition. Her response, “Oooh, does that mean I get a special dessert that night?” I laughed. I may have even snorted, because as wise as she is, wise beyond her years, she’s still only 7, and in this family, big celebrations mean big treats. I better come up with something good.
Each year on this day I’m just as grateful to God, thankful and humbled by his grace as I was four years ago.
God has big plans for Kaitlynn Jeanette Stone.
I’ve written countless stories about Katie’s experience with VOGM and I’ll keep writing them, because parents, doctors and sonogram technicians across the country still have no clue what it is. The panic of VOGM may be fading in our lives, but it’s always at the forefront of my mind. It will always be at the forefront of my mind.
Today is a good day.
Forever and always, we thank Elizabeth, Bill and Liam for leading us to New York.
“To whom much has been given, much is expected.”