Eleanor is a gift. But she needs your help.
I gaze into her big blue eyes, long dark eye lashes and golden curls. I have learned every moment is a gift. Every milestone a celebration no matter how big or small. Sometimes it is a step forward and then a few back — but as long as we keep moving forward with good days it is okay.
When I heard my daughter sing for the first time, learn a new sound or word it is a delight to my ears. I never thought I would see her so happy and growing, but it wasn’t always this way. There is still a long road to take, but small steps is all it takes.
When I was 18 weeks pregnant, my husband Rodney and I were given the devastating news that our unborn baby had spina bifida and Arnold Chiari ii Malformation. Spina bifida in its basic form is a hole in the spine. This meant that when Eleanor was born her spinal cord was protruding out of her back and had to be surgically closed. Arnold Chiari is a brain malformation that causes speech, feeding and growth issues. She also has hydrocephalus (fluid in her brain) and syringomyelia (fluid filled cyst along her spinal cord) — so Eleanor Faith had a rough start to life.
I remember those first days and weeks of dealing with my emotions and possible outcomes of having a baby with a disability. The day Eleanor Faith was born was the best and worst day. I welcomed my first baby into the world but moments after she arrived, she needed a breathing tube and was taken away to the neonatal intensive care unit, where she spent the next six weeks. She was still perfect to me and my love for her grew with each passing day.
We spent 12 hours a day by her side, gently talking and holding her hand. Time and space merge in hospital. Our lives were divided into shifts no longer anything else in the world mattered apart from our little girl. Each night we left her always fearing what the new day might bring.
In those six weeks, Eleanor had surgery to close the hole in her spine and, a few days later, more surgery to insert a shunt to drain the massive build-up of fluid in her brain. A week later, she had yet another round of surgery as the shunt wasn’t working properly. Each day was like standing on a cliff edge not knowing what would happen, nearly holding my breath each time I walked through the doors. It was these days I would sing uplifting songs to Eleanor reminding her I loved her.
Days after her last brain surgery, the wound in her back broke down and I watched as the skin around it disappeared. It was frightening and the doctors told me ‘this happens occasionally’.
It was at this point I realised I had to know and understand everything myself if we were to ever go home.
Coming home brought more challenges of feeding. We were not to know for many months that she was suffering from neuropathic pain. This affected her with excessive sweating and an inability to control her temperature.
After weeks and months of talking to doctors, invasive tests and extended hospital stays, it was decided to try brain surgery. Eleanor’s brain sits further back in her head in comparison to ours, and by making more space we could relieve some pressure and help with pain and her temperature regulation.
The moments and hours waiting for that surgery to be completed were long and sad. The surgery was only a partial success as she lost too much blood and they had to stop. I remember the consultant calling us into a private room after many hours of surgery. I didn’t hear much of what he said. I was staring at his shoes, which were covered in blood — Eleanor’s blood. I couldn’t take my eyes off them. This brain surgery had not been performed on someone her age in this hospital. My heart was breaking.
After the surgery Eleanor was able to eat food more and we thought it was a partial success, but she still suffered with a lot of pain. The neurosurgeons wanted to operate again, this time on her spine and insert a shunt to drain the fluid. They said that this surgery can take years to realise the benefits and we have seen improvements over the years.
Life was still hard for Eleanor. She wasn’t happy and after another lot of tests it was discovered Eleanor required oxygen. She spent about two years on oxygen, eventually outgrowing it. During that time she had a nasal gastric tube to help with weight gain but due to her continued infections developed an oral aversion to food. One day we hope she will be able to eat again. Eleanor’s body responds differently to pain and infections and due to the brain condition and her feeding tube, Eleanor vomits daily. It is just another challenge we have had to adjust to.
In the last year I have watched Eleanor become independent by learning to drive her power wheel chair. This was the first time she could make her own choices. She would go around and around — hooray! She would drive up and down the washing line, touching her clothes and blankets. She would drive over to a tree and touch the leaves and do a wheelie on the grass.
Now is the time for Eleanor to learn to eat. Eleanor hasn’t been able to eat for over two years. She is to attend a feeding clinic in Adelaide — the only one like it in Australia — to assist us in weaning Eleanor off her feeding tube. This clinic has the support and resources that Eleanor needs, but the cost will be greater than we can manage. A big plus is they can Skype with us to help build the foundations for her feeding tube wean and then to continue to support us afterwards. We have just started their program in the last few weeks.
The final program has to be in Adelaide, in a hospital that gives the support, therapists and specialists we will need. With feeding and learning to eat, there is only very small window of opportunity for her to achieve success — and failure can make the future even harder.
The reason we chose the name Eleanor Faith was the meaning behind it. Eleanor means “shining light,” and through the challenges we still have a beautiful little girl who shines bright. Eleanor loves music, watching live sport, and she can’t get enough of anything with a ball. She loves the water and being by the sea. I think she could swim all day, if given the chance. I love when she laughs, as it lights my day and those around her. She has a wicked sense of humor and can be very bossy.
One way to make Eleanor laugh is to wear your hat inside with your sunglasses. You can often be at our house (before 6am) and all four of us will be wearing hats.
But what I love most is the moment she stretches out her tiny hand and with her long fingers, gently touches my eyelashes, concentrating so hard, staring at me so intently.
It is her way of saying “I love you”. Nothing could be more precious.
Eleanor’s mother Becky has started a Pozible project to help fund Eleanor’s treatment. Eleanor’s dream is to be able to eat – and to do that she needs to attend a special feeding centre in Adelaide. You can donate as little as $5 to help to support Eleanor’s treatment here.
Becky’s writing has been published on The Huffington Post, Mamalode and Literary Mama. Becky writes to make sense of her world. You can find her website by clicking here.