“Movement has incredible healing power.” ~Alexandra Heather Foss
My ten-year-old daughter, who had been ill for all her life, was dying. She was hooked up to tubes and monitors, and they were always going off. Her numbers were off the charts, and the doctors kept saying, “Your daughter’s numbers aren’t normal, and we would normally have a team coming in here to check on her breathing and to rouse her.”
After the last operation, one doctor said she was surprised that she was still alive when she came into work. We all were. She kept fighting. She would just be sleeping heavily, deeply, and then would wake with a massive smile on her face and a giggle, as if it to say, “Ha! I fooled you again.” She kept fooling us… until she didn’t anymore.
My husband and I made the decision to turn those monitors off because they were not helping her or us, as the constant beeping with no action was just stressing us all out. It was a massive decision. The doctors had done everything they could, and there was no miracle cure.
During this time, we were having daily conversations with the doctors about what her body would look like and feel like when she was going to die, what we could expect. We had to make decisions that no parent would want to make—about where we wanted her to die: home, hospice, or hospital.
We talked about all the different scenarios. They were trying to prepare us for the worst. Her little body was failing her. She had a rare genetic issue, and the future was bleak because she wasn’t well or strong enough for any other operations.
She couldn’t walk or talk; she couldn’t hold herself up; she had scoliosis, brain damage, and hip dislocation, as well a horrible condition called dystonia. She had lived her life with a smile on her face but was in the most unimaginable pain daily.
Doctors were telling us that they had reached the end of the road, and that either we could stay in the hospital or choose to go home with an even stronger set of medications than we had arrived with.
Around this time, I found myself jumping around and shaking my arms and legs.
Doctors, nurses, and my husband would look at me, and I would say I needed to get it out. It was the stress. It helped calm my nervous system; it helped calm me even though my whole body was in a state of mass fear and my whole world was crashing around me.
We had nearly a whole extra year—we tried so much—and then on that last day I went into her room at home and she looked awful. I knew it was the end.
I rang the ambulance, and they came and asked us what we wanted to do. Then they confirmed our worst fears.
We had an end-of-life plan in place, again, something that no parent ever should have to write. We loved her so much.
I held her, I cuddled her, and I loved her. I love her still so much.
Since she has died, I have felt empty, but I am trying my best to forge a way forward.
I had a terrible childhood, one of fear and abandonment. It led me down a path of being needy, constantly needing reassurance. I haven’t loved myself at all. Whenever people broke up with me, it reignited those feelings of fear, that I wasn’t enough.
When I was under ten my mother broke my arm, tried to drown me, scared me, and decided with my father to leave me on the side of the road when I was naughty. The house was full of arguing, my mother narcissistic and unwilling to take any responsibility for any of her failings. We, the people around her, had to adapt ourselves to her and her mood.
I then went to school and was bullied. My sense of self-worth was shot. Where was I safe?!
I met my husband and we are happy, and I thought my life was complete when we had our beautiful daughter.
I was scared she wouldn’t love me, that she would love my husband more. She seemed to know what I needed. She would have mummy days and daddy days, or both of us days. I didn’t mind sharing her love. The mummy days were hard work (as they entailed being with her 24/7) but, oh my, the look of love on her face. When I looked at her, I felt so loved and I loved her.
Since she died, I have been doing things to heal myself that I never would have tried before. Ecstatic dance—two hours where I keep my eyes closed and dance but, actually, I find myself shaking the whole time, like I did in hospital, and crying, letting it all out. Shaking my arms and kicking my legs out over and over again.
I have seen a healer and had a dynamic breathing session, where I howled like a wounded animal for everything that I have been through and what I have lost—my childhood and now my child.
Since being home, I have been having hypnotherapy and more dynamic breathing sessions, as well as EMDR therapy. All with the view of healing myself, trying to love myself. My body has hurt more than I realized is possible. While dynamic breathing, the pain I felt in my stomach before I breathed it out was immense. Physical pain from mental pain.
I feel like my daughter gave me love, and I am honoring her by making sure that this next part of my life is going to be healthy. I am going to hug myself, breathe deeply, and try to calm the nervous people-pleaser inside of me. It’s going to be hard, but by now, at fifty, I feel I am ready to do the work.
Wish me luck!
Rest in peace my Taylor Swift-loving Ella Bella. She was eleven when she died.
We will dance for you when we see Taylor next year.
And for anyone out there who’s dealing with unbearable pain of their own, I can’t promise you the pain will ever fully go away. But maybe, like me, you’ll find a little relief in moving your body to get some of it out.
About Sue Burt
Sue lives in England with her husband and two doggies, Max and Diego. She has taken a job in a special needs school as a way to contribute to other children’s futures.
