The monologue this morning included a pear and a water balloon that were left on the kitchen counter. Grethe (Greta) was in her element as she created a show. Her three brothers watched and laughed, rapt.
Its pretty much the same every day. When Grethe wakes up, the fun begins. There is a swirl of energy around her from the moment she wakes up until she (thankfully!) falls off to sleep. And do not try waking this child, her body instinctively knows that some good quality sleep is needed for the show that must go on the next day.
Grethe is fun to be around. She is lighthearted, bursting with love and almost always kind. Her teacher once said to me, “You know when frost covers a leaf and the sun hits it just right? That’s what it’s like when Grethe comes into the room.” Her Dad and I secretly call her Sparkle.
And what it like living with Sparkle? Absolutely wonderful!
At the end of a long day, when we are trying to gather enough energy to herd four reluctant children off to bed, the incessant sparkle can turn into a glare. Here is an example: The twins are freshly clean, teeth brushed, jammies on and picking out their books for the night. Suddenly from the other room they hear, “Jason! Jason! Get over here right this minute!!”
No one in our house is named Jason.
The boys hear the call of fun and they drop what they are doing and follow her command. All the momentum of the nightly routine is lost and I have to re-herd them once again. I tell Sparkle to turn it the hell off already (well, I don’t say hell, but I want to) and go to sleep!
Grethe’s older brothers are no longer under her spell. Seeing their beloved twin brothers dressed up in their sister’s old baby clothes can spark a fight that Mother inevitably has to step in and mediate. After I calm my 17-year-old down, he asks in wonder, “How does she DO that? It’s like they’re hypnotized or something!”
Today is my girl’s 11th birthday and she was up with the sun. No sleeping on this important day! She went off to school with a skip in her step and a flower for her teacher. When I finally had a moment alone, I looked up at the beautiful, blue fall sky, breathed in the crisp air and cried. The combination of memories, beauty and intense gratitude was almost more than I could bear.
Grethe came into the world on a spectacular fall day. After 3 boys and the surprise of Down Syndrome with the third, I was hoping for an “uneventful” birth and secretly wished for a little girl. The birth itself went smoothly. She was born at home, as planned, but seconds after her arrival the show began. The baby girl I had been waiting for struggled to take her first breath. I watched helplessly as the midwife stimulated her and then gave her oxygen. My body continued on with the final stages of birth as my mind tried to process what was going on around me. All the people in the room were suddenly in full crisis mode and within seconds my baby was rushed out the door with her father. I was left alone with a birthing assistant to finish the mechanics of the job at hand.
Grethe was rushed, horns blaring, to our local hospital less than 2 miles away. I was able to meet them within the hour and the scene I walked into is every mother’s nightmare. The room was packed with white jackets and people barking commands. I could hear my midwife repeating, “CALL THE D.A.R.T., CALL THE D.A.R.T, CALL THE D.A.R.T.” As the most experienced home-birth midwife around, she is highly respected, but not always by the professionals in the white coats. Her request for the MEDI-VAC life flight helicopter (the D.A.R.T.) was ignored as the chaos continued.
Eventually a nurse recognized me as the mother and brought me into the fray. I watched as the frustrated doctor tried to help my daughter breathe, I listened to the intern shout out for a priest, I saw the bewildered look on the young pediatricians face. Someone touched my arm and I turned to see a familiar face. She was an acquaintance of mine who was a hospital volunteer. She held a Polaroid camera and asked me if I wanted her to take a photo. I remember thinking she was insane, but I must have nodded.
Now, with the buffer of time, I realize that she realistically believed that my baby was going to die. She wanted me to at least have one photo.
Finally a skilled anesthesiologist entered the room and immediately accessed the situation: this small town hospital was not equipped to handle the crisis before them. The D.A.R.T. was called and within minutes, my baby was once again taken away.
With our baby gone, my husband and I stumbled out into the blinding sunshine of the hospital parking lot. We were not allowed on the helicopter and now it was up to us to chase our baby. She was being taken to a larger facility over 60 miles away. We also had 3 young boys to think about. This is when adrenaline does it’s best work: move forward, move forward, move forward.
Hours later we are settling the boys into bed at David’s House (www.davids-house.org), a magical haven located close to the hospital, designed specifically to meet the needs of families with children in crisis. Our baby was now in competent medical hands and a diagnosis had been made: Grethe had a congenital diaphragmatic hernia. Her diaphragm did not completely form in-utero, leaving a hole which allowed her bowels to migrate up into her chest cavity and sit on one of her lungs, which in turn hindered its development. Chances of this happening to your baby are as rare as 1 in 5000. Even this more advanced hospital did not treat this condition. Grethe would need to go to Boston, two hours from our home.
When the lights were out and our children asleep, my husband and I held each other and wept as quietly as we could. Soon we heard the unmistakable sound of a helicopter overhead, and we knew that was our girl.
Grethe spent an entire month at Children’s Hospital of Boston. The first two weeks of her life were in intensive care. The first two weeks of her life we were not allowed to touch her.
It was such a surreal, intensely stressful time, I struggle to remember it all now. but I will never forget how amazingly strong that tiny baby was. Every nurse that dealt with Grethe commented on her: “She’s a feisty one”, “Oh, I love it when I’m assigned to her!”, “What a beauty!”. At the time, I brushed all the comments aside, but the 11-year old Grethe absolutely loves to hear the stories.
When we were reaching the 4-week mark at Children’s, I started to get a little aggressive with the doctors and began pushing for Grethe’s release. One exasperated doctor pulled me aside and said,”Listen, I’ve seen some children with this condition stay here for up to two years, so cool it!”
Two years?!! I was stunned, but undeterred. I wanted my baby girl home with her brothers. Thank you, thank you, thank you for saving her life, but she needs to be home. NOW. I know she is good to go. My girl needs to be in the comfort of her own home with nothing but love around her. Enough of the lights and beeping machines and well intentioned nurses. Enough.
Reluctantly, the doctors signed her release papers.
And she never went back.
11 years later, “Afro Tigger!!” (see pic below for a much-needed explanation…) is dancing and waving to cars from the front porch. I take a deep breath, look up at the spectacular autumn sky and whisper my thanks.