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.
I’ve written about her brain disorder, Vein of Galen Malformation, on many occasions but I’ve never walked on stage and delivered it live to 200 + people. It was the night before Mother’s Day, and three days before we celebrated the 5-year anniversary of her cure. To say it was an emotional experience was an understatement. My husband, Doug was in the audience and I told him not to make eye contact with me. When the videos of that night are finally released, I’m guessing late this summer, you will notice my eyes play to the left and center of the room, because I knew Doug was to my right.
For nearly all of my 7-minute piece, I held it together. No crying, voice-shaking or noticeable flubs, but at the end, I felt a pull to the right.
Only one person besides me, knows the stress, agony, heartbreak and joy of that time in our lives, and that’s my Dougie. The night was about mothers, but I knew he deserved recognition too. During the last few sentences, the other faces in the audience faded away and I looked directly at the tear-streaked face of my rock, my MacGyver, my soul mate and spoke only to him, because I could not have faced this monster without him.
That night, I shared the stage with 13 strong, beautiful, hilarious women, all with an important story to tell. All sharing their truth. Sometimes that truth involved the words, “poop,” and “boogers,” which dissolved the audience in to knee-slapping fits of laughter. I’m so proud of my fellow sister wives and thankful to producers Erin Margolin and Laura Seymour for choosing me to be part of this experience.
Below is the piece I read at Unity Temple for Listen To Your Mother. It’s a mash-up of two previous blog posts plus original material.
When a mother delivers her child, the physical attachment may be separated, but the mental bond remains. Mother’s intuition can sense a little white lie, predict the first heartbreak and make a person doubt multiple highly educated physicians who say with certainty, “your daughter is fine.” She was not.
On September 16th, 2004, my water broke six weeks early because I insisted on reaching for the last sock in the basket while folding laundry. *GUSH* I always knew housework was fraught with danger and should only be tackled by experienced professionals. In the wee hours of September 17, 2004 I met my daughter, Katie for the first time. She was early, but healthy, pink and perfect. Or so we thought.
In the days following her birth as I held her in the NICU and then at home, I gazed at her face and memorized every line. Two noticeable things stood out: One – she only “cooked” long enough to receive a single adorable dimple and two – she had a nickel-sized vein between her eyes. Over the next year I watched this vein grow larger and eventually it was joined by other prominent bluish/red streaks covering her eyelids, reaching around the side of her face and sprouting across her hair line.
During each well-baby visit I would ask my doctor if we should be concerned and his answer was always the same, “She has a big head and thin skin. She’s fine.” She was not fine. She was an otherwise healthy patient in the busy healthcare system. Meanwhile, she was slipping through the cracks.
My stomach gnawed with anxiety and worsened with each passing week. Even though Katie was my second child, I felt like a first-time parent who was being overly dramatic and doctors were patting me on the head chiding, “Bless your heart,” and not in the nice way. In the mean southern, “Bless her heart, she’s none too bright,” kinda way.
At her one year check-up she was examined and immunizations were given as usual. As my doctor was leaving the room I nearly shrieked, “Do we still remain unconcerned about these veins? They’ve multiplied and get more prominent when she lies down or cries.” When he turned around it was as if he was seeing her for the first time. He measured her head, examined her closely and ordered a noninvasive CT scan that was performed right there in his office. The suspicious CT led to an MRI and finally we were given her diagnosis: Vein of Galen Malformation.
Vein of Galen malformation (VOGM) occurs in only one in 3 million children per year. It is so rare my doctor had never heard of it and the radiologist who read the MRI had only seen it one other time in 15 years. VOGM develops in the womb and can often be detected there, though none of the sonogram technicians I dealt with had ever seen it, either. VOGM babies lack capillaries to slow blood flow so the vein of Galen (located in the brain at the base of the skull) grows larger leading to hydrocephalus (water on the brain) and ultimately, cardiac failure and death.
In the early days of the diagnosis we found very little information and none of it was good. VOGM is difficult to treat, and most parents who get the diagnosis do so only after their child has died. We felt lucky. At least we had a chance to find treatment. Unfortunately, our little Midwest state felt like a deserted island. There seemed to be no one qualified to perform the delicate operation anywhere near us and the expert, the miracle man, Dr. Alejandro Berenstein was located in New York.
Initially we found one website that encouraged parent communication but it was located in Europe and though it allowed parents to talk to one another, it didn’t give any information about qualified doctors in the United States. We felt lost, alone, and after Katie experienced a partial paralysis, frightened. We knew we had very little time.
On the website I met a man who lost his infant son to VOGM. He and his wife provided comfort, and encouragement. They single-handedly assuaged my fears. My husband and I were panicked but they were calm, selfless angels who shook us by the shoulders, spun us around, smacked us on the ass and pointed us toward New York.
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 always was for us, particularly on May 14, 2008.
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.
During our four visits to New York I dealt with the fear and anxiety by walking the halls of the PICU, staring out the window at all hours of the night and envying the sharp-dressed Manhattan-ites going about their normal routines. My husband Doug dealt with it by, well, fixing things.
Not a man to sit idle – anywhere – Doug passed the time during our hospital stays by retightening bolts on beds, silencing creaky chairs and fixing cabinet doors. I never questioned his coping mechanism, nor did I ask how he managed to smuggle tools on a plane in a post 9/11 society. Don’t ask, don’t tell. That was our motto.
Five years ago this month, I waited on the 14th floor, 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.” Five years ago when the phone rang, the thick familiar voice of Dr. Berensten said, “You are done with me, Kaitlynn is cured.” Five years ago this month the nightmare ended. I finally allowed myself to picture my daughter as a young girl and a grown woman. . . something I hadn’t let my heart allow. Five years ago I thanked God, cried with my husband and vowed to keep raising awareness.
Five years ago, hope became reality, because Mama knows.
May 16, 2013 at 11:17 am
So beautiful, Dani. I love that you had the chance to speak this… and that people had the chance to hear it.
also… *tears*. 🙂
May 16, 2013 at 11:43 am
Awesome!! I’m so glad you share your story with others.
May 16, 2013 at 9:09 pm
I think you are such a lovely, funny, amazing person, Dani. I’m so thrilled to have met you and heard your story.
May 16, 2013 at 9:16 pm
Clap clap clap clap clap. Thank you for the kind words friend but it is you who are my rockstar. Love the pictures. LL