For the last six years, Galwaywoman Geraldine Renton has been one of the most popular bloggers in the country. Her writings have focused on her role as a determined and driven carer for her young son Ethan, who suffered from Hunter Syndrome, a rare genetic life limiting condition which mainly affects boys. In that time, she has become a champion for other carers; her words clear and concise, her advocacy appreciated, her forthrightness a welcome distraction.
Anyone who knows Geraldine can only be impressed by what she achieved in the face of adversity, her stoic nature, her ability to meet head-on whatever challenge came her way. However, this stoicism has been severely tested in the past twelve months.
While 2020 was a forgettable time for all of us, for Ger, it was to prove doubly tragic. First with the passing of her beloved brother Liam in March, and then in September, with the sudden passing of her teenage son Ethan.
Bereavement in Covid is far removed from that in normal times; the absence of people around makes mourning a very different experience. We react differently, we interact differently in ways that we will maybe not understand for years. For the past few years, Ger had been compiling a book based on her blog It's Ethan and Me, but it remained unfinished. Until now, at this time of great tragedy, when she has thrown herself into its completion to produce a wonderful book, a tribute to Ethan but a eulogy to those who work as carers in our society.
Changed my life
"Ethan came into this world when he was good and ready. He was born 10 days overdue, on the 18th of May 2002. From the moment he was born he changed my life. Ethan brought so much joy and wonder into my life, I felt like I too was learning alongside him. Ethan was the type of child that when you met him, you rarely forgot him. He was full of energy, chat, laughter and love. As the years rolled by, Ethan changed, he lost some abilities and he became unsteady on his feet, just to name a few little things my husband Dave and I noticed.
"After almost six years, we finally got an answer as to what was happening with our whirlwind of a child; Ethan was diagnosed with MPS type 2, also known as Hunter Syndrome. Hunter Syndrome is a rare genetic life limiting condition which mostly affects boys. There are just under 2000 cases worldwide. The diagnosing doctor softly told us to go home and love him, for there wasn’t anything they could do.
Faced with such a stark prognosis, Geraldine and Dave and family went about living their lives.
"Throughout Ethan's life he brought us on many different journeys; from battling the system to get a drug that could slow down the progression of Hunter Syndrome to us getting married on television's Don't Tell The Bride. Ethan showed us that no one has tomorrow, and all we ever truly have is right here and right now.
"For every ability Ethan lost, he gained something else; when he was no longer able to verbalise what he wanted he would point and nod while we would go around the room asking him “Is this what you want buddy?”
Life is made up of everyday moments
Ethan taught Ger how to face adversity in life, how to be strong when she needed to and how to let her emotions out when she had to.
"He taught me that life is made up of many everyday moments, that life isn’t what you have but who you have. Ethan was truthful; he had no issues telling people that he was gorgeous, or telling them to ‘Fug off’ or warning them that they were standing too close to him. He taught me that honesty works."
Ger began writing about her life with Ethan back in 2016 on her blog “It’s Me & Ethan.”
"That first year, I won Best New Blog of 2016 which gave me a little confidence boost. I began to submit my work to many different websites all over the world and soon became a ‘writer’ in my very limited spare time.
Many writers bemoan the lack of time they have to write, and for Ger, writing and caring for Ethan and his two brothers was hectic.
"By 2018 I decided to finally write the book. Ethan at that time was going through a calmer stage of Hunter Syndrome, he was happy and his care needs were being met both at school and at home. I had finally got home help and Ethan had access to more hours of both respite and home help. I began the early drafts in the summer of 2018. That same Summe, my brother was diagnosed with cancer. As anyone who has had any dealings with cancer will know, it took over our lives. My book became less of a priority while I focused on my family.
"By 2019, my brother was in a good place and was strongly encouraging me to finish the book. I think he was tired of hearing my reasons for not finishing it. 2019 was the year I also had to begin transitioning Ethan from child services to adult services, to say that was daunting is an understatement. Everything and everyone Ethan and I had known on our journey would now change as Ethan was one year closer to adulthood," she recalled.
But 2020 came with a bang.
"My brother decided to go into the Galway Hospice for, what I had hoped was respite. By then I had sent the manuscript off to Marguerite Tonery from Tribes Press, here in Galway. I was eagerly awaiting her opinion when my family were told that our brother had not too long left with us. Once again, my book got shoved to the side while I focused on spending as much time as I could with my brother and family.
"By February, I still had to make a decision on the right centre for Ethan while trying hard to be strong for my family. By March the pandemic hit. I now had no services support for Ethan, no home help, no respite and was expected to homeschool while the Hospice had to shut its doors for the health and safety of everyone.
"I was devastated that I could only ‘FaceTime’ my brother. The last conversation I had had with him was about Ethan and my book. He insisted no matter what happened that I get that book published. In fact he made me promise, in turn he promised to always mind us and especially Ethan.
Sadly Liam passed away on March 22. Ger's heart was broken.
"Funerals and bereavement are hard, funerals and bereavements during a worldwide pandemic are almost unbearable. My brother's funeral was the loneliest, saddest funeral I have ever attended in my life. It was just us, his family, there was nobody else. No chats, no stories told and no one to comfort us, only us - the bereaved.
At the graveside we said our goodbyes not just to Liam, but to each other as we did not know when we could embrace and see each other again.
"It was in the Summer 2020 that I began to put the final touches on my book. I felt it was something I should finish, now in honour of my brother. By September I had only little bits and pieces of the book to tidy up, which would have it ready for the pending Christmas season.
"Over the Summer, I battled as parents with special needs children often do, newer battles. By mid September, Ethan had finally begun the transition period into adult services. He loved it and they loved him. He was happy and easily adapted to his new people, new surroundings and even his new support teams, it was a huge weight off my shoulders.
"However, on September 23, almost six months to the day since I lost my brother, my beautiful bright as a button Ethan, suddenly passed away.
"There is no heartbreak like losing a child. I cannot put words to it and I fear if I did, I could not do the pain justice. Once again we faced a funeral during a worldwide pandemic. I cannot honestly tell you about those days because my mind will not let me go through that again and that is ok, sometimes, our minds do these things to protect such delicate hearts.
Devastated
"We were devastated, shocked to the core and unbelievably broken, not just our hearts. Since my own bereavements, I have not had any support from services. I have had support via phone calls, messages, Zoom chats from friends and family and even the wonderful team that took care of Ethan for most of his life. What the services do is the math of the loss, they take the role I have happily, proudly filled for Ethan through his lifetime and reduce it to nothing.
"According to the Government I don't work and I haven’t since 2008, the year Ethan was diagnosed. I think the Government really needs to reevaluate how they treat Carers in this country, and those Carers who find themselves bereaved especially during a time like this.
So what now for this mother who loved and advocated with all her life?
"Ethan was my life. He was the reason I did many things, including writing and finally getting my book published. Being Ethan's carer was a privilege. I worked hard, extremely hard as Ethan's Carer. I relished and shone in being his Mammy.
"Life is different now. It’s quieter. It’s still. I have time now for me and with that time I tend to write or read. I have two beautiful sons here with me and I am thankful for that. We talk about Ethan every day, we miss him terribly. I have no plans to stop writing because now Ethan and I are on another journey, he may not be physically here with me but he is and forever will be with me in everything I do.
"Ethan lives on through the pages of my book. His face and spirit jumps off the page from every little battle we had to fight for him, right through to him telling the Priest to say ‘Amen already’; he was never one for ‘Mass’.
"Yet, I have hope. I have always had hope. Hope is powerful if you let it in. My hopes reduce to singular little things, like today I hope that I can sit with a hot cup of tea and remember the days when I used to have to drink cold tea, with a smile on my face and a tear in my eye. I hope people enjoy my book and I hope that Ethan and Liam are proud of me. And I hope my book shines a little light on the carers, the parents, the siblings, families, those with special needs and all those who support families like ours through a road less travelled, with barely any signposts and no roadmap whatsoever.
Life is a journey for us all. Ger's book is a fantastic insight into the role of the carer, but told with a love and a determination that so many families will find familiar. It is well worth reading.
You can purchase ‘Ethan & Me’ on Tribes Press https://tribespress.com/product/ethan-and-me-pre-order/
