Last weekend I was a cast member in the inaugural Kansas City production of Listen To Your Mother. Last weekend I did something I’ve never done. I walked up to a lectern, which is like a podium but without the body-hiding security of wood panels, and told a story about my daughter. How I knew something was terribly wrong with her after she was born but no one would listen to me. How I shouted and shrieked and pointed to her little face where veins were beginning to sprout like a road map and the darkness under her eyes was becoming so noticeable, someone actually accused me of child abuse. How she almost wasn’t diagnosed in time. How we found help and encouragement from angels among us. How we sought treatment in New York, and the best part, how Katie beat insurmountable odds to be here with us today.
To say the last two months have been crazy would be an understatement.
This post is not so much a new epiphany of thoughts and feelings or even a cute post about my children or my Dougie, though, come on, seriously, how adorable is this little Girl Scout?
Or these three precious faces snuggling on Saturday morning. You know what they say, “the family who plays WordFeud, Pokemon and Fruit Ninja together, stays together.”
Nope, this post is actually a recap of goodness, the introduction to a new blogging community and a chance to show you the new summer cover of my e-book, Next Left.
A few weeks ago I wrote about my audition for LTYM (Listen To Your Mother) but there were so many things going on that week including the passing of my uncle and a possessed dishwasher that decided to spew forth water with the voracity of that poor child from the Exorcist that I didn’t give the story the attention it deserved.
Since that time, I’ve learned that I did, in fact, make it in to the big show. Yay! My reaction? Joy, tears and gratitude followed by flop sweat, nerves, the desire to lose 20 pounds and I may have even peed just a teeny tiny bit. ‘Cause this thing, folks, is a big deal.
What is Listen To Your Mother? From the official website: “Celebrating Mother’s Day with a national series of original live-readings shared on local stages and via social media.” Each show is individually produced and all the shows are performed in May. This year, 24 cities will be participating. Through generous sponsors and ticket sales, a portion of the proceeds from each show will go to a local charity. On Saturday, May 11th, I’ll be speaking at the show in Kansas City at Unity Temple on the Plaza. For more information or to buy tickets, click HERE.
Speaking. I’ll be. . . speaking. *gulp*
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).
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.
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.
Yesterday when I picked Katie up from preschool it was a bone-chilling 8 degrees with a half inch dust of snow covering the parking lot. Although I carried her in to school earlier to save her a morning of chilly wet feet, I let her crunch through the snow on the way to the car. Because the parking lot was practically empty there were fresh untouched piles everywhere and as she picked up the pace I knew they wouldn’t stay that way for long.
Clad only in her Nike tennis shoes, in the morning rush I’d forgotten her boots, she began to stomp. When we got to the car I could see she wasn’t done with her mission to mark our little corner of the parking lot with tiny footprints. Not a fan of the cold myself, my first inclination was to follow the lead of all the other chilly mamas and hurry her in to the van but then it hit me, the thing that hits me me frequently since her diagnosis in 2006, live in the moment and enjoy each one you have.
As cars drove past us leaving the school for warmer destinations, Katie and I snugged down our jackets and shuffled through the snow making happy faces, figure 8′s and other icy abstract patterns. When a very crimson-cheeked Katie finally announced she was cold and ready to leave, I drove out of the parking lot looking at our fancy footwork and thinking we’d left it looking just as silly and happy as we felt. A day later I’m still thinking about how giddy she was and how all the other mothers must have thought we were crazy and I’m glad I slowed down to enjoy it.