Mom’s thoughts 17 years since Kaisa’s scoliosis diagnosis

Extract from the manuscript for the scoliosis book:

For the first time in years, in June 2021, I walk down the same elevator lobby that for ten years, Kaisa and I used to take to the pediatric ward 9B at Tampere University Hospital. This time it is because my 91-year-old father has suddenly fallen ill and I am going to see him in the section.

I enter the hospital’s magnificent new entrance into a spacious lobby. There is a familiar statue in front of the building, but next to it a fountain pulses, cooling the sweltering day, spouting water every now and then. Everything is new and cool. Nothing reminds me of the past.

But the next few moments take me by surprise. Large signs guides me through the open lobby to Part B. Suddenly something very familiar. The same old walls, the same familiar six lifts taking patients, relatives and staff to the upper floors. I press the same old button to the ninth floor. I can’t remember if the elevator guide voice was the same as years ago. The message is still the familiar “Ninth floor”. Memories flood back.

When we were translating this book into English, I wondered why I had described the first visit to the hospital so much. But still, after almost 20 years, the first visits to the doctors and at the hospital are the ones I remember best. Those were the times I was most excited and most vulnerable.

How many times had we come to this pediatric ward? The marathon of years left no room to stop too often to reflect on what was behind and what lay ahead. Now I find myself wondering, with some surprise, if there were wishes and questions that I had  numbed at the time? What had I hoped for? Would I have wanted to talk to someone? Would I have liked to be noticed more? How could I have done something more to help Kaisa?

Now the answer to all these questions would surely be yes. I would have wanted to talk to an adult about my fears and exhaustion. When I came to the ward, I would have longed for the feeling that it was our case that was important. I would have liked someone to tell me what emotions or thoughts are going through the mind of a child or young adult during such processes.

Standing in front of the lifts and looking at the familiar glass double doors to the now-displaced children’s ward, I come up with the concept of a “survivor’s recipe.” – hide your feelings to survive. Then, years ago, I was brave, Kaisa was brave. We didn’t ask too many questions, we did our part. Of course, I was often critical towards the hospital personnel. To the point of aggression. But I attacked out of fear and insecurity. I would have wished that someone had seen through it and come and hugged me. One hug would have helped me months forward.

Now, years later, standing in the same place, I feel how demanding — and long – the journey had been. And how little support we received during it — and now I realize how important it is to have support – during and afterwards.  

Personally, I haven’t talked much about Kaisa’s scoliosis. And certainly the tone has been light and confident when I have spoken. Maybe that’s why many people close to me haven’t really understood how long the journey was and what a rollercoaster of emotions we went through. I didn’t “ask” for compassion and therefore can’t assume that people would have been able to give it to me. I should have been more openly fragile when talking about the years of care. Empathy and listening. I still miss them.

For the first time, I also wonder whether I should have done something differently. My answer is: I certainly should have. I could have been more patient at some points, I could have talked more about things with Kaisa, I could have thanked the doctors and nursing staff more, and understood them better. But I don’t beat myself up too much about that. I’ve done the best I could. If you do things out of love and try your best, that is enough. No one is perfect, and no one has to be. 

I don’t think bitterly about the long road we have travelled when I hear about new treatments. I know that surgical techniques have improved and with current knowledge Kaisa might have survived without the brace treatment altogether.  We were living in our own time with the best information available at the time.

If I now stop to think about what is the prevailing emotion after years of scoliosis treatment for Kaisa, though, it is pride and gratitude. Pride in the fact that Kaisa pushed through all the years and kept going despite the setbacks. Gratitude for many things. Gratitude that Kaisa is the strong woman she is. Gratitude that the treatment went as well as it did — it was by no means a foregone conclusion from the start. 

I remember visualizing Kaisa as a young woman with a straight spine when she was a little girl in a brace. Now I’m grateful we’re there, and she has grown to be a strong-minded young woman with a warm heart and living life to its fullest.