On Sunday, the 18th of January, our beautiful little boy, our butterfly boy, Oisin, got his wings. He flew. He soared high into the air. He was finally free of his weakened body. He was finally free of his tumour. Our pain is deep.
He gave us a beautiful final day. We walked in the bright sun along the lane to the main road. His humour still present, he put up his right hand and managed to wave at the cars as they passed. The small movement in his right hand was about the only bit of mobility he had left, and he used it to its fullest. He pointed his finger repeatedly to go in the direction of Granny Tick Tock’s house, where he used his finger again to request one of her delicious marshmallow biscuits. We gave him a taste on his lips. It must have been magical for him, as by now he was unable to eat and swallow much more than a few drops full of pureed food and water. We had to explain that granny had a cold and we didn’t want him too close. His determined finger won out and we took him over to granny, who rubbed his head. I will never forget her words, “Have a peaceful death. I will be joining you soon.”
Later that day he took the longest nap he had taken in a week. As he slept, we went for a walk with Cillian down the fields in the glistening afternoon sun. It was as if Oisin was preparing us for our lives together as three, letting us know that we would all be okay.
After posting the previous blog, we thought Oisin was going to die in the next day or two. Again, it was following a day of much sleep and a weakening of his body. After adjusting his medications, however, he seemed to pick up again and we got another beautiful 8 days with him (Thank you so much to Tess and all of the Palliative Care team at St. Brigid’s Hospice, The Curragh!). I was in no doubt that he was comfortable and in no pain or distress in those final days. Whenever he had pain, it was easily remedied. As his voice faded he continued to make sure he communicated by nodding and pointing. He never gave up. He never retreated into his mind. He never lost his humour. He never lost his strong spirit. He still made sure he used the toilet like any other big boy, even though it was a huge effort for him to go. Even when his body was so limited, we fell into a routine of care giving and continued to find ways to keep him in good spirits. We even got another (unexpected) visit from Reuben (thank you so much.)
His final activity that evening was watching his beloved Disney cars go around a race track that Uncle Bren had bought him. Those cars helped him through this whole journey and when he only had the use of his right hand, he used it to hold his cars and move their wheels around with his finger. He continued to receive cars every day in the post (his family made sure of this). His final car was the most fitting of all. It was a car called Holly Shiftwell – with wings.
Soon after, Oisin seemed to fall very tired. His breathing became laboured. The sinking feeling in my heart told me we had arrived at our final night together. Like every night before, we all kissed him and cuddled him. We told him how brave he was and we told him that we loved him. That night we played some of my Kundalini yoga music and a sacred song that my dear friend, Julie, had just sent me in that moment. We read his favourite books and a children’s story about a caterpillar that becomes a butterfly (Lillibit’s Dream.) He died very peacefully between us both, his mummy and daddy, in the big bed. He simply stopped breathing in his sleep, very quietly. It was 1.55 in the morning. Daddy put a hand on his heart, looked at me, and shook his head, “he’s gone.” Words I never wanted to hear. I wept for my loss. After a little while, as we lay beside him, the air stirred around us with a gentle breeze, and I sensed Oisin was awakening from his body and was experiencing beautiful re-birth into an angelic being. He had reunited with a place I will never comprehend beyond my imagination for now. My mind’s eye showed him dancing and happy. He was not afraid. He saw us and knew we were happy for him. We gave him our blessing to go and walk in the light, knowing we would be with him always. We did this some days ago, when an opportunity arose between us all. He seemed to dance around us for about two hours before I sensed the light beckoning him. I was still holding and cuddling his body, crying as I felt him leave.
Oisin had a typical Irish country funeral. There were so many people at the removal that our good neighbours and friends stepped in to manage the car parking and even flood lighting. Thank you to all of you who came, from near and far. The funeral mass was deeply emotional and beautiful. It all came together with the support of good friends and family. Yvonne, Oisin and Cillian’s God Mother, co-ordinated and contributed to our mass booklets, which were kindly printed by our friend David from Milbrook Press, a keep sake that I will treasure forever. I was carried along. Unused to the Irish culture of funerals, I simply went with the flow and it flowed wonderfully. I thought I might be overwhelmed by the whole experience and how quickly it all happens, but it was quite the opposite. I felt blanketed in love from strangers and friends alike. The music and readings were heart felt. Barry had contacted a singer and harpist, Orla Fallon, to play at Oisin’s funeral. We had been listening to her angelic voice and music on her album, “Lullaby Time,” and we knew immediately that we would like to find out if she might come and play. We were thrilled when she got back to Barry, very moved by our story, and very much wanting to be a part of making the ceremony for Oisin a beautiful one. Thank you to Claire, Fiona, Christina, Michael, Bren and Niall for your readings and prayers. Thank you to Yvonne for your emotional and courageous poem that captured Oisin’s life and final journey. Yvonne, you expressed every feeling I have had throughout this journey and I am certain you left no dry eye or person unmoved by your words. Thank you, my dear husband Barry, for finding your strength to stand and deliver a eulogy. It is the strength you find in the darkest moments that makes me love you so. Thank you Msgr. Wilson for being with us every step of the way, for being so honest as you stood and gave one of your most challenging services, and for becoming our friends. Thank you also to Fr. Marius O’Reilly from UCC for your participation.
As for Cillian, he fell soundly asleep, lulled by the beautiful harp and voice of Orla. He slept as I carried him out for communion. He slept as I gave him to daddy as we walked out of the church. He slept as we handed him over to Uncle Mike (now we know why you needed to come back from your holiday, Mai and Mike!) Granny had to wake him for the burial and we are pleased that she did. I held Cilly in my arms during the burial and as the coffin lowered, I opened a box of 1000 butterflies and told the people, “These are 1000 butterflies, each with a prayer for Oisin.” This is true. Barbara and family, Boland relatives in Chicago, cut, painted and blessed every single one of the 1000 paper butterflies with a prayer for Oisin. As the butterflies fluttered down to rest on Oisin’s little white coffin, it seemed as though it had sunk in a little more with Cillian that his brother would not suddenly awaken and he would not suddenly climb out of his white box to play with him like old times. Cilly made sure that every last one of those 1000 butterflies made their way down to rest upon his adored big brother, Oisin. Yvonne, who is always so in tune with her heart, started to sing. She sang “The Rose” just as beautifully as she had sang it on our wedding day.
Keeping us company throughout the service, there on the window beside us in the church rested a Red Admiral butterfly. Many commented on how it seemed to flap its wings and dance in time with the music. Oisin, our incredible child that we have so loved and cherished, you continue to show us your powerful spirit. Now you are free of your earthly body, we will be blessed with the strength and beauty of your spirit without any limitations. I am certain our lives have been made all the more enriched for having had you it.
We love you, butterfly boy.
To close, I share with you a stunningly written poem by my big sister, Lisa:-
‘I was once a twinkle that came into this world as a beam of light,
I shone brightly into the lives of our families and friends, a bundle of energy with a fantastic sense of humour, and an intelligence and understanding beyond my tender years.
You taught me how to be who I am, how to laugh, and how to love.
Without you I would not exist, without you I would not be me,
And without me and our journey together, you would not be who you are.
Your tentative and loving care carried me through this journey, and when the time came you gave me the greatest gift of love….you opened your hands and set me free.
I gently unfolded my beautifully coloured, delicate butterfly wings and now I fly freely and effortlessly through the skies.
Just look at me go! I’m riding on the wind, I’m Lightening McQueen!
Although you can’t see me and I move without a sound, you will feel my presence – I will always be near.
When I beat my wings powerfully, I’ll be the breeze that surrounds you,
And when you miss me the most I’ll be the gentle flutter in your heart.
I count not months but moments – that’s all it is to me before we flutter through the skies together; I just earned my butterfly wings and learnt to fly a moment before you.’