A few months ago, Dot began having what can only be described as anxiety attacks. My normally happy, carefree child turned into a creature who was concerned about everything within days. Water was perceived as a dark, ominous being in which whales and sharks could be lurking. The postman turned into an archetypal villain who went around houses trying to snatch children. Even the clouds morphed into harbingers of doom and destruction, as they apparently signalled the coming of a murderous storm called ‘Candy’. In the time it took me to process this change and decipher its possible meaning, Dot began having an overwhelming need for everything to be ‘in their right place’. What followed was outbursts of crying and anger; they seemed to arise with no reason and took hours to subside.
At first I tried what I knew; I took Dot to the endocrinologist and checked her thyroxine levels. They were perfect. I was stricter as a parent. I enforced stricter boundaries and a more rigid routine, thinking this would bring a sense of calm and would make Dot feel protected. In fact, it made everything worse.
So I started going to a paediatric neuro-psychologist. I spent months trying to learn the skills and tricks that can promote emotional regulation and help decrease anxiety in children. Dot and I gave names to emotions; drew them on paper and discussed ways to contain them. We pretended emotions are animals that live in our tummies; we talked about how they can escape and strategised about ways to catch them. We spent countless hours chasing errant emotions with actual binoculars and nets around the house. Nothing helped.
My wonderful, joyous child was disintegrating in front of me and I had no idea how to help. One day her teacher mentioned that she seemed more tired than usual and that, when she thought that no one was looking, she would stop participating in activities and would lie down to rest. She also overheard Dot telling another child that her legs and tummy hurt. I took her to a paediatrician. He sent us to a paediatric rheumatologist.
The rheumatologist asked Dot if anything hurt. She said no, but she flinched when he touched her joints and tummy. The specialist told Dot he had a magic spell for kids. He told her that if anything hurt, all she had to do to make it go away was to stand in the middle of a room and say “Go away” name the body part and then say “pain”. Young children live in a world of magic and infinite possibilities. She believed him without hesitation. And so she rose, stood in the middle of the room and with that magic phrase named everything that hurt.
“Go away tummy pain”, “Go away leg pain”, “Go away head pain”, “Go away hand pain”, “Go away neck pain” and on it went for what felt like hours. The specialist ran tests that led to more tests and more specialists. It turns out Dot did not just inherit my love of crisps and my incredible stubbornness. She also inherited Ehlers Danlos, a syndrome for which there is no cure.
So Dot has Ehlers Danlos. She will need intensive physiotherapy and occupational therapy. Currently a lot of her muscles are atrophic while others are in spasm, causing her a great deal of instability, weakness and pain. She now has prescribable insoles and special shoes. As she grows, she will need braces for her limbs. It is possible that her joints will, at some point, begin subluxing and dislocating. Dot needs regular rheumatological follow-up ad infinitum. Cardiology will step in to help ensure the heart complications of the syndrome are kept to a minimum.
It is no wonder that a four year old, in pain, exhausted and having no idea why any of this was happening to her would be angry and in despair. While she is by no means what most people would call well psychologically at the moment, Dot has made incredible emotional improvements following recognition of this syndrome. It is as if the fact that we know she is in pain and we understand is somehow enough.
When I was pregnant, I hoped Dot would be strong enough to survive and be born. After she was born, I hoped she would be strong enough to live through the gastrointestinal bleeding, the pneumonias, the lack of a vital organ. What I now hope is that I will be worthy enough and strong enough to help Dot see the complexity and beauty of life, to help her look beyond genetics, complications and pain and onto the life she will eventually choose for herself. Much like any other parent, with a few added quirks.
We are not only lucky, but blessed, that we now know about her Ehlers Danlos. Our family is lucky beyond belief that we happen to live in a country with an incredible health system ready to deal with the physical and psychological complications of such incurable syndromes. We are blessed to have the opportunity to find a network of healthcare professionals and teachers who are willing to stand beside us in this journey, ready to help and in full recognition of Dot’s struggles while simultaneously looking at the whole child in front of them and not just a part of her.
So Dot has Ehlers Danlos. Things have been difficult. Things will continue to be difficult. And I can’t help but feel grateful for all the wonderful things that have happened and that continue to happen amidst the chaos.