Dani Stone

I Hear Laugh Tracks

VOGM – 2 Year Anniversary

6 Comments

May 2008 – Goodbye New York! Thank you is not enough!

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 the 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 lives and my every waking moment. It’s a battle, 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 miraculous day.

Two years ago today, hope became reality.

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6 thoughts on “VOGM – 2 Year Anniversary

  1. It is so wonderful to see Katie looking healthy and experiencing the fun and joy of being a little girl! We are proud of all that you and Doug have done with the children – true Stone’s through and through!

  2. I’m crying and it’s not even 9:30 a.m. yet! But these are tears of happiness for you and the entire family. What a blessing Miss Katie is to those around her and what a blessing you and Doug and Jakie are to her.

  3. Oh my dear friend. You have made me cry as well! Thank you for writing in a way that allows us to peek inside your experience. And thank you for writing about what hope really looks like when you don’t know the ending. You are probably right… this is a story you and Doug will carry forever, and Katie will only have shadowy memories as backdrops to your stories.

    YOU are an inspiration, Dani. Thank you.

  4. Well, thanks to Kim putting this link on her FB, my eyes are wet now, too. But they are good tears, ones that needed to come out.

    You are telling your story in a powerful way. You need to write a book or ten.

  5. I remember this day like it was yesterday — and I’ve never been more happy that it was put into the universe. God is good… and those 3 words say it all, on 10,000 levels. Sending you love, my dear BFF.

  6. Congratulations, this is God’s gift, God is mercy and love, with God everything is possible…God bless you and Katie, who is an angel of God…

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