Our undiagnosed daughter takes on the world...
When Eudora was born in 2014, my husband and I were expecting her to have a crooked foot, a treatable condition that would "in no way hold her back."
expecting the worst
But after she was born we knew things were more serious. Eudora could move only her right forearm, nothing else, and she was not strong enough to swallow her own saliva. Her condition baffled doctors. She appeared to be getting worse and was put on a ventilator, and we were told to expect the worst.
Eudora was always a fighter
When Eudora pulled through and came off the ventilator, we hoped for better news, but her doctors began to suspect an extremely rare metabolic condition that would be devastating, painful, and incurable. We were told me she may not be capable of forming thought.
Proving the the doctors wrong
All you can do as a parent in a situation like this is refuse to believe it. By now we could hold Eudora, and we made a point of ignoring all the wires and tubes. We sung songs to her. We saw how intelligently she looked into our eyes. We also did research, rooting out medical papers, pinning our hopes on an eventual non-diagnosis. Watching closely, we saw that she was gaining a little more mobility in her upper limbs. Her eyes were starting to track slow moving objects. She was finally able to make some noise, at first just moans and sighs, but now almost a cry. Surely, we thought, the doctors were wrong.
The fight to take Eudora out of the hospital
We fought hard to get Eudora taken off the heavily sedating muscle relaxants that had been prescribed, and then pressed the hospital to discharge her. The genetic test result would take months, so there was no point waiting. We had steeled our nerves and learned how to insert the feeding tube, like a strand of semi-cooked spaghetti, into her nostril and down to her stomach. We knew that proving ourselves capable was the only way of getting her home, out of the door of the hospital to see the blue sky, smell the grass, and hear the sound of the sea as we walked with her pram. I was longing to sit cuddled on the sofa with her.
When she was ten weeks old we finally left. We took a feeding pump, a suction machine, and an apnea monitor. Eudora had both legs in plaster to treat talipes on her right foot and vertical talus on her left foot. She also had to wear a hip harness day and night to correct developmental hip dysplasia. This was a treatment that failed after a few weeks, so she would later undergo several surgeries and seven more months in plaster from her toes to her chest.
When the genetic test result finally came back, the hospital forgot to call and tell us. Six months had passed and I was afraid to ask them, but eventually my husband bit the bullet. He called me and left a voicemail. I was driving, and I had to pull over and cry with relief, even though my gut had told me the truth all along. She was getting better, not worse. By now she was playing with toys. She was smiling, not exactly with her mouth, but you saw it in her huge blue eyes that opened wide and sparkled, and her hands that she'd flap with joy.
The doctors wanted to do full genome sequencing next, part of a long term study, but we refused. The result could take four years, maybe more, and would be unlikely to lead to a 'useful diagnosis'. We didn't want to live our lives with that over our heads. Instead we put our trust in the medical people who were getting to know her best, the physiotherapists, and we concentrated on massage, and singing, and being silly, which she responded to so well.
Celebrating the milestones
Not long before her first birthday, I woke up early with Eudora and noticed that it was snowing. The suction machine which she had once needed every minute had been consigned to the garage for five months, and we'd spent the last ten weeks gradually giving Eudora less milk through her feeding tube. As this happened she had begun to eat, first mushed peas, then porridge, yoghurt, and fruit, till now she was only taking water and nothing else through her tube. For so long I had imagined taking the final feeding tube out, and in my head it had always been a defiant celebration of her freedom from it. I had pictured myself burning the tube in a fire, or stamping on it. Instead I drew it out slowly and left it coiled on the windowsill. I showed her the snow and then we went outside and made fresh footprints. It was incredibly peaceful.
There were still so many questions. Would she walk? Would she talk? We didn't know. I'd stopped worrying about the diagnosis because most importantly, she was not suffering. It had occurred to me one day that I had no idea how Eudora's older brother's life would pan out either. What we wanted for them both was the same, just happiness, and all parents live with some measure of uncertainty as well as hope.
Nothing holds Eudora back
Eudora is now four years old and she is full of fun. She can't wait for her fifth birthday party, which isn't till next year. Recently she started modeling with Zebedee Management who are based in Sheffield, and earlier this month she did her first fashion shoot for a major high street name. She was awesome, racing around in her little red wheelchair, posing like a pro, and chatting to everyone. She's become a talker just in the last year, and her kooky personality shines out. She still loves music, wants to learn the violin, and sings all the songs from the musical 'Annie'. She likes retro TV programs, her favorite being Button Moon, and she likes pretending to be a waiter, taking orders in a cafe and scribbling them down.
The rule we live by is that we do nothing to hold her back. We check to make sure our expectations are as high as they would be with any child. We just sometimes do things differently, or in a different order, or maybe we take a little longer. Already Eudora has achieved so much, beyond what we dreamed possible when she was in hospital, and she has filled our family home with laughter and love. Nurturing her and watching her thrash through the limitations that were envisaged for her has been one of the sweetest surprises in life.
Eudora quickly turns strangers' expectations upside down
Our wish is that others would give Eudora the same chance. People assume she is different to other children, that she won't play with the same toys, or understand what others do. She quickly turns strangers' expectations upside down, and of course, we love seeing that happen, but at the same time, we wish it didn't have to. Eudora shouldn't have to prove herself with every person she encounters. This is why we are so happy she is part of the Zebedee Management agency, challenging common misconceptions about disability with other incredibly talented kids and adults and building her own confidence. Watching her shine is pure joy.