Six weeks ago Danica was coming out of huge brain and spine surgery and getting settled in the PICU at Johns Hopkins Medical Center in Baltimore, Maryland. If you’d been there and whispered in my ear that she would be home today doing math and language homework, playing Legos and breezing through an OT evaluation, I wouldn’t have believed you. If you’d told me the first weeks post-op would be the greatest test of physical, emotional and spiritual endurance we’ve ever experienced, but, if we held on, it would become the most miraculous part of our Gauntlet story yet, I wouldn’t have believed you.
The absence of pain.
Six weeks later it’s all true.
Twelve weeks ago I was coming out of a major spinal surgery at Doctor’s Community Hospital in Lanham, Maryland. If you’d come along side my bed while I was struggling for oxygen and writhing in pain and told me I would survive the trauma of the next three months, I wouldn’t have believed you. If you’d told me God would not only meet every single need but lavish love on us in ways we never could have asked or thought, I wouldn’t have believed you. If you’d told me I would have the greatest hope for my Danica’s life and perhaps even my own, I wouldn’t have believed you.
Twelve weeks later it’s all true.
I’ve been a ‘One Word’ person for a long time now. I began writing about my 2017 word last night. ‘Bloom’ was the runner up. I didn’t remember the following post from the old Team Danica blog, written on January 4th, 2012, until it popped up on my facebook memory feed this afternoon.
Tomorrow I have a meeting at Lake Center Christian School with Danica’s teachers, guidance counselor, special needs coordinator and principal to revise her 504 plan so she can return to school for half days next Monday. She will use the wheelchair initially to protect her fusion and her healing rib graft. I know she is ready and trust she will be safe and loved, but I am facing my own ache of letting her go. I’m facing the great mother “risk” so my girl can blossom again.
“And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.”–Anais Nin
My dear friend Angie facebooked this quote to me today. It’s not strange that her kindred heart would know this is the very quote I was thinking of this morning as we walked our Danica Jean in the doors of Lake Center Christian School for her first morning of preschool.
It’s all been a risk with this child. The pregnancy was high risk for her and especially for me. Her birth was an emergency and very dangerous. The methods we tried to fix her tortocollis and find the real root of her pain and growing diabilities were risks. The many exposures to radiation were a risk. The first brain decompression was so scary. At her age we knew going in the outcomes were mostly just buying time. Just a few months later we began the fight to find answers anywhere we could because the first surgery was already failing. This led us eventually to her second surgery and fusion. It was riskiest of all. No one wanted to do this surgery although all the experts agreed it needed to be done. Every day after October 5, 2010 EVERYTHING became risk analysis. For more than a year we kept Danica from doing almost anything normal three year olds would do. We said “No”, “Be careful”, “Watch out”, “Hold my hand” and the words “We have to keep your neck and brain safe” more times than I could ever count. Have you seen her beautiful white swan neck? Have you? Do you believe in miracles? Have you ever witnessed one? Have you ever lived one?
Danica had many dreams of her own as she patiently waited in this bud of hope all these years. Attending preschool is one that fell right under her Disney wish trip. She is exceptionally bright and more than ready for this social interaction, time away from her mommy and lots of learning and exploring. We are beyond blessed she is able to begin it at such a special place where so many of the school families have been praying for her for years, following her story and loving us well. Danica is like a hero there. Everyone knows her face and name. My mom’s office is just across the hall from her room too. It’s pretty amazing to have your grandma be your principal!
This cold January morning was a day we will never forget because our family got up TOGETHER. Danica excitedly got dressed and was bursting at the seams with anticipation to bloom. She had no anxiety at all. She has lived in a world of adults and scary machines and pain and limitations. This day was not tapping into courage at all. It was only joy for her.
We went in. Danica hung up her coat and bag in the little foyer area, and she signed herself in on the board. The other children were ready for her. Mrs. Barber, her teacher, was waiting with open arms. There was no look back to me for any reassurance. She was gone in a second to wash her hands and choose an activity. Dan and I stepped out of the door, and I let a few tears fall. Mrs. Pappano was just outside. She gave me a hug and reminded me how everyone there already loved Danica and would take such good care of her.
I was supposed to begin physical therapy this morning, but there was some mix up with the prescriptions getting faxed over so instead Dan and I went to breakfast. He brought me back here to the lake house, and we snuggled for a little while which is such a rare treat. I can still smell him, and it makes me feel less alone. As soon as Danica left at 11:30 Danica’s teacher emailed me to share what a success today was and how Danica instantly blended in. She said they had a large motor skill activity that would be on Danica’s restriction list and Danica was sweetly compliant to sit out. I loved knowing especially they were taking her safety seriously and understanding the limitations that remain. I called Danica at home to talk to her about her morning, and Dan said she got home and said, “We need to take naps!” She had gone in her room to take some down time already. This is so Danica. She takes rest when she needs it. She is in many ways so much wiser than her age. She is a rare flower.
Last night I stayed at home and tucked each of the girls in like normal since Dan is working nights for the next month on her preschool days. Danica fell asleep in five minutes as “Sleep Sound in Jesus” played, and I rubbed her back and sniffed her sweetness. I lingered. Then I made my way across the hall to my Laney. She had so much new art to show me and we talked about print making and how her designs of colors and patterns could be used in fabric or wallpaper and other ways, expanding her understanding of how art could be her career. She talked and talked to me, trying to catch me up on the weeks I’ve missed, and then she said, “I’m sorry I’m so chatty tonight. I just missed you.” Oh, special girl of mine, me too. So much. We hugged and prayed and then I slipped out to my own bed. I cried. It’s going to be okay. There are so many more blossomings in our coming year. I know it. Thank you, God.
I’ve been working on my “vision board” for 2012. It’s like the quarterly collages I make only on a much larger scale. I found a picture of bulbs coming up through a late spring snow. I have this quote beside it,
“Underneath the drifts, seeds are waiting. Their courage is incomparable. Their patience unequaled. Hunkered down and hopeful, they sit out the frozen tundra, knowing and trusting that spring eventually will arrive. If ever you feel unsteady in the face of life’s winters, consider seeds and their faith.”–Tovah Martin
Spring always comes. Today was a little taste of how seeds of faith and patient waiting on God always bloom into something beautiful.
“Those who sow with tears will reap with songs of joy. Those who go out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with them.”–Psalm 126:5-6