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4th Anniversary of a Miracle

May13

  Today marks the 4th anniversary of hope, the continued promise of a future and the celebration of a miracle.

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.” 
Luke 12:48

VOGM Parents Alliance

Sep20

 In 2005, my little family started a journey. It began when a pediatric neurologist gave us a devastating and confusing diagnosis, “your daughter has vein of Galen malformation.” For those of you who follow this kooky little blog, this is not news to you. I talk about it a lot. It consumed my life, my energy, my heart and every waking moment from October 2005 to May 2008. It’s a diagnosis so rare, many neurologists will never see a patient with it in their practice.

Early on in our journey with VOGM, we were scared, frustrated and had few places to turn for answers and support. In 2007, on a particularly heartbreaking visit to the New York hospital where we sought treatment, I remember thinking, “I feel so alone. Where are the parents who have gone through this? Why can’t I find out more information?” As I watched my daughter sleeping, still heavily sedated, knowing this would not be the last time I stood watch at her hospital bedside, I vowed at that moment to spend the rest of my life raising awareness for this unpredictable and unforgiving thing that snuck up on us and nearly stole her life.

Though it’s taken 4 years to muster the courage to undertake it and the resources to make it possible, I’m overjoyed to announce the creation of the VOGM Parents Alliance. I founded this organization to bring parents together, provide resources, education, and most importantly. . . hope. This is the first and only US-based website dedicated to VOGM children and their families.

http://vogmparents.org/

Most of you reading this post will never have a need to visit the site, except for an initial curiosity. Only a small portion of the population will need the information provided on this website, but for them, I hope it becomes a source of strength and empowerment.

This past weekend Katie celebrated her 7th birthday. We know how lucky we are to have her with us, strong, healthy, with a smile that lights up a room and is completely contagious. That smile is the reason we pay it forward. This organization is just the beginning.

Sincere thanks to Dennis Hildebrand and Mary Montavon from Hildebrand Creative who felt the project almost as deeply as I did. To the donors who cared about this enough to help fund it and those who kept telling me this was NOT bigger than me, thank you. Sometimes all we need is for someone to believe in us.

Now that my little baby savin’ project is built, how will parents find us? Well, that’s where I’d like to have your help. I’m watchin’ my Google stats like a hawk and although I’m doing okay with a search for “VOGM,” on a search for “vein of galen malformation” I’m still way back there on page 53. If you have a blog, maybe you could give the VOGM Parents Alliance a little love and link to us. http://vogmparents.org/

Thanks, friends! Here we go…………………………….

VOGM – 2 Year Anniversary

May13

When you look out the window on the 14th floor of Roosevelt Hospital in New York City, you’ll see yellow taxi cabs, pedestrians crossing against the light, Starbucks coffee signs and the GE building looming against the sky.  You’ll see these things but you won’t think about them.   The room service tray might be there but you’ll only be able to pick at the eggs and it will be hard to swallow that iced tea over the lump in  your throat.  You won’t think about anything except when the phone is going to ring.  The phone call that always comes, hours after you’ve kissed your daughter goodbye and left her sleeping in the arms of the anesthesiologist.  The phone call that comes from the operating room, telling you how many arteries they’ve closed off in the brain this time.  Hoping you won’t hear the doctor say there’s been a complication.  At least that’s the way it’s always been for us, particularly on May 14, 2008.

You don’t have to know our family very long before you hear about our daughter, Katie, and her miraculous battle with Vein Of Galen Malformation (VOGM).  For so many years it consumed our life and my every waking moment.  It’s a battle, thankfully, she fought, won and now has almost completely forgotten because she was so little.  She fought the battle but my husband and I will always remember the war.

So many airplane rides, layovers in Atlanta, doctor visits, medical clearance tests, blood draws, being completely out of our midwest element in New York  City, nurse shift-changes, the beeping of the vital sign monitor and learning every chime and ding it made. . . countless things we endured on the journey to the cure.  The worst by far, was always waiting for that phone call on the 14th floor.

Two years ago today I waited in that room, picked at my breakfast, looked out the window and kept silently repeating our family mantra, “believe, believe, believe. . . it is as it was ordained to be.”  Two years ago today when the phone rang, the thick familiar voice of Dr. Berensten said, “You are done with me, Kaitlynn is cured.”  Two years ago today the nightmare ended.  Two years ago today I finally allowed myself to picture my daughter as a young girl and a grown woman. . . something I hadn’t let my heart allow.  Two years ago today I thanked God, cried with my husband and vowed to keep raising awareness.

Today Doug and I will watch Katie in her final preschool music program before she heads off to Kindergarten in the fall.  We will stay for the ice cream social and watch her add far too many chocolate sprinkles for 11:00 in the morning.  To her it will be a normal day.  For us, it’s another day of miracles.

Two years ago today, hope became reality.