20/12/2018

Lotta is nine

By Bianca Simms

This text was written in the early hours in the days before Lotta’s ninth birthday. Before this, we had rarely celebrated beyond immediate family, sometimes withdrawn completely in an understandable grief, sometimes managed to get the basics of balloons and cakes.

On this day, a friend of ours conducted a meditation at our house. It was the last day of snow in London, the sloping windows were covered. Family, friends and neighbours gathered, along with their children, to sit for six hours with us in silence. Just the sound of a drum, the hum of the traffic outside, occasional reminders of why we were here. They came to enter Lotta’s world. To feel what it might be like. To be with her and us.

It was an incredible and profound and healing day, one I will never forget. All were moved. I wish to anyone reading this that they experience the feelings of love and support we had that day. It is rare to feel so deeply. Here is the speech I gave at the end of the meditation.

What is today? It’s Lotta’s birthday. A celebration. Hooray, we made it. Nine. Last year of single digits and Lotta is long way from the fat Buddha we gave birth to nine years ago.

It was spring, there were flowers, colours seemed so bright the day we brought her home. We have been through so much. But today it’s a celebration. Of silence. Of quietness. I think Lotta has something to teach us all. To celebrate simplicity. Breathing in and out. Wind on our faces. The beauty of a view. To be in the moment. To know that trouble will pass. To endure. To search for wholeness; not happiness. To be vulnerable and find strength there, as well as connection. Those are just some of the things my beautiful daughter teaches me. And all without saying one single word. How amazing? A very happy birthday to my extraordinary daughter Lotta.

I hope you have a wonderful day. Thank you for giving us the gift of your time. That is truly the best present. I’m sure some of you will find it difficult to be still and quiet, it’s not always a welcoming place. Thank you for going on a small journey with us today and for being part of Lotta’s life, her journey, for lending your support, for giving us your love along the way. 

She teaches me life changes, everything passes through, it is all just a phase. She has taken me on an incredible journey into myself, introduced me to all kinds of people, the very best of people and sometimes, the very worst.

She has shown me my strengths and my weaknesses in equal measure.

When she was born I thought she was perfect and today, I think she is perfect. She is resilient and strong, quiet and calm, loud and sometimes very annoying, needy and independent, beguiling and irritating, extraordinarily sweet-natured and unlike her mother, she has never said a bad word about anyone. How wonderful is that?

Sometimes Lotta is approached with pity and people feel sorry for her that she can’t speak, or walk. And whilst I don’t want to at all diminish the difficulty she has and the impact it has on her health, she has I think, found a way to cope which belies an internal strength and independence and level of acceptance that not many of us can boast.

She also finds a way to make herself known, to those who have the time for her, she can, without words, make herself understood. How many times have you found your words to be inadequate or misunderstood and how much conflict arises in those who can speak, yet still can’t communicate? The two things are actually quite separate.

For a long time I could not see past Lotta’s very profound difficulties. However, now, I can indeed see their gifts. They remind me to be grateful for the very basics. The fact she finds it hard to breathe, wee, eat, sleep, poo, talk, choose, remind me to be grateful that I am able to.

It also teaches me that some of the things I think are desirable, for example, the ability to choose, isn’t necessarily a good thing. For the most part her diet is very restricted. There was a time when I would have cried because she couldn’t join in with birthday cake and couldn’t think of anything to buy her as gift, but now I feel quite differently and strongly that as a society, we have perverted our sense of what is a treat, what is a present, and forgotten how to look after our bodies, our environment, our planet, and maybe even each other.

Lotta embodies what it means to be vulnerable and the fragility of what it means to be human and I think she can provoke some uncomfortable questions. Will I be ok? Will I be looked after? Will I be loved? Am I indeed lovable? How am I flawed? For most, their disability and vulnerability is hidden and often the source of much pain and internal conflict.

Maybe the answer to some of those questions is answered by the very fact we are all sitting here. We will all be ok. We will all be looked after. We will all be loved. We are indeed lovable despite our flaws, and maybe what Lotta teaches is that the route to that is by making ourselves vulnerable and becoming aware and accepting of our own disabilities and shortcomings. 


I feel that Lotta gives something very pure, her spirit, her essence is one of love and those who take the time to know her can feel that. We have indeed been through some very awful experiences with her, ones which never allowed me the time to feel what I can now feel, away from the drama, so incredibly proud of her.