It’s 4.16am. Willow wakes. She likes a snuggle. Arms wrapped close around her and she usually drifts back to sleep, but not this morning. Her pretty face breaks into a cheeky grin. A song starts.
e make our way to the kitchen, so as not to wake hubby John and Noah, her older brother. She continues to sing. I join in with my high-pitch attempts at soprano. She smiles and continues. The feeling of joy fills me to the edges, the simplicity of a moment — our moment — a cherished memory in the making.
Willow was born December 1, 2016, following an emergency caesarean section. A happy time quickly became a living nightmare. It is a story I have often relayed, yet now from a different place.
We were told that Willow had a traumatic brain injury and that she would not survive without life support. I had yet to hold my beautiful daughter, and now I faced the first moments of holding her in my arms as being my last, to say goodbye.
I sat holding Willow. The moment came. Her life support was removed. In my arms she suffered a seizure, her breath stopped. I heard loud crying. I felt like I was having an out-of-body experience, looking in upon myself, watching me fall apart.
Willow’s face began to swell, her colour almost purple, and then a gasp. Breath. She was still with us, she continued to breathe, and so her life, our journey, began.
Willow was going to fight for her place in our family. I told her if she stayed, we would be with her for everything. I could accept her extra needs. “Please don’t leave me”. I just wanted to be her mum. She wasn’t expected to survive. I was scared. John stood strong for both of us and said it was the right thing to do. Her funeral arrangements were made. We chose her tiny coffin. We took Willow home on December 5, home to Noah, to be a family of four for however long that would be.
Being a parent to a child with complex medical needs is like being asked to take control of a pirate ship — you become outlaws in unchartered waters. No map, no compass, no plan in place, just our little crew of four. Those first few weeks you are sailing at full mast into a raging sea, your sails bulging with the force of the winds. You fight and you struggle to keep afloat, protecting all around you. Your only focus is not to sink, to keep above water, not to lose one of the crew. You yearn for calm seas, to anchor and maybe rest a while.
The following evening the house was manic with visitors. I sat in a corner of the room, watching Willow closely, keeping check of the rise and fall of her tiny chest. She was breathing. I wanted everyone to leave, just to let us have our time, peace, quiet. That’s when Anne Reilly walked in. I felt her presence, her smile greeting me when I looked up, our Fairy Godmother had arrived. We could finally drop anchor and let someone else take the helm.
Anne Reilly is our Jack & Jill Children’s Foundation liaison nurse. I had often heard of Jack & Jill, even made donations, but never realised they would become such a lifeline in my new world.
Anne stepped in and calmed the storm. She helped us navigate everything that we needed to do — medical forms, medications, palliative care. You are completely lost when all you are trying to do is make it to the next day. Anne has been my rock. She has the ability to make it all seem possible. She always said Willow was going nowhere and she was right.
Willow would be diagnosed with level five spastic quadriplegic cerebral palsy, epilepsy, and global developmental delay. She is also visually-impaired. She is peg-fed and relies on eight different medications daily. For Willow to survive, she needs 24/7 care.
I remember once calling Anne on the way home from Newry having taken Willow to a hyperbaric oxygen chamber — clutching at straws, perhaps, but any intervention that might help. I was so down. I was concerned about Willow’s vision, typical with her type of brain injury. Anne met me and Willow in a little pub in Ardee. We sat and chatted. She was honest, realistic, and set out what I needed. Just one of the countless ways she has lent me a crutch when my legs felt weak.
When Willow was three weeks old, nurse Catherine Fullerton came into our lives. She has been Willow’s day-to-day nurse since — her second mum! We have gained a new family with Catherine’s family. The love Catherine and her own family have for Willow goes above and beyond nursing. She is one of their own, she is adored.
Thanks to the home nursing care provided by Jack & Jill, we are afforded the gift of time. Time to do the things we took for granted before, time to be with Noah, time to rest. Now as we make our way through choppy waters again with Covid-19, we know we have our safety net with Jack & Jill.
Should you ever meet Willow, you’ll soon discover a social fairy! She really likes meeting people and being part of the action. Nature is her place. She loves getting out for a walk with sounds, smells, and wind in her hair. She enjoys music and time on her floormat, kicking her legs to a song. She is always happy to help with baking and cooking, even helping Noah with his homework.
Noah is Willow’s most cherished past-time. Her face breaks into a huge smile when she hears him coming. They share a secret world. The elf and the fairy! Always giggles, hugs, noise and joy. The day can suddenly become a wonderful adventure when they are together.
Our lives have changed, somewhat dramatically, but would I go back to my old life? No! Willow has brought so much joy, clarity and perspective. When you face your greatest fear, when you ride the waves of grief, yet you still have a living person to start again with, the days are filled with small, happy moments.
We are living in the present and looking forward to what may come.
The Jack & Jill Children’s Foundation is looking for people to do its socially-distanced ‘Up the Hill for Jack & Jill’ fundraising challenge this month. To take part, simply pick a local hill within five kilometres and make a date to walk, run, or cycle it. Each participant is asked to donate €16, to support one hour of home nursing care for the 362 Jack & Jill children across Ireland. Visit jackandjill.ie
Health & Living