Holding On

Lisa Wilson Special Needs 0 Comments

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My son was due a week before Thanksgiving. There was constant discussion in my family about a chubby little Thanksgiving baby; fresh and sweet, held in many loving arms amid turkey, stuffing and mashed potatoes.

But amid barbeques, ice cream and evening walks in the late and lazy days of July, my water broke. In the early days of August, at the end of my fifth month of pregnancy, my baby was brought into this world weighing just over a pound.

He was not the cooing, blinking, plump bundle I’d imagined. Instead, he was a fetus with transparent skin, eyes fused shut like a kitten and barely the size of a Barbie doll. He was bright red, tiny, covered in protective goo and splayed out on a warming bed.

I have never felt so much love in my life.

He was too fragile to hold, much less pass around, and I spent hours gazing at him through the bubble wrap insulating his body.

On his second day of life, I arrived at his bedside to discover he had sustained a brain hemorrhage. This hemorrhage had filled the center of his brain with so much blood that his brain tissue was squished up against his skull. I received this news among several other babies and parents within arms reach. I saw their stares and looks of pity. My husband and I clung together, sobbing for our child’s life-that-could-have-been and talked about whether or not to continue life support.

Our son wasn’t ready to let go, and two months after brain surgery, ultrasounds, echocardiograms, x-rays and blood transfusions, I was allowed to hold my son, the love of my life, one time per day. I arrived at 9 a.m. and the nurse carefully removed him from his isolette, untangling the wires sustaining his life, and laid him on my chest.

I would have three hours to hold him, if he could tolerate it, then I would have to put him back. Minutes later, when my son had fallen asleep and I was resting comfortably with him, a family just a few feet away began to lose their baby.

My nurse gave me a choice. I could turn my chair around and they would put up a screen, or I could put my son back in his isolette, to sleep on the beanie baby he called a bed, and leave. I couldn’t put him back. It was my one chance to hold him; so she turned my chair and placed a screen depicting a tropical island paradise between the dying baby and us, amidst a sea of beeps and wires.

I will never forget the day that baby died. I sat in my rocking chair, hearing the silent sobs of a mama losing her son as I clung to mine, willing him to live with silent tears slipping down my cheeks.

My son held on. I held on. We made it. It took lots of work and lots of love, but we made it. Twice I thought I would lose him, but he held on. For five years we made appointment after appointment, surgery after surgery, CT after CT. We played and laughed and found friends. We held each other and snuggled. We held on.

My son can run and laugh and jump and play. He can hug and talk. He can read and has a mind for facts. He starts Kindergarten this fall. He can’t wait. He is ready. I want to hold on. But now it is time to let go, just a little bit. This time letting go doesn’t mean losing him; this time it means letting him fly.

About the Author

Lisa Wilson

Lisa Wilson is a mom to three wonderful children who grow and amaze her everyday. Her eldest was born at 24 weeks which fueled her natural drive for social justice and introduced her to the world of disability and family advocacy. This fall, Lisa begins a new adventure as she tackles returning to school full-time to further support her ability to advocate.

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