Wednesday 21 January – He’s dancing in the sun

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:-

Butterfly Wings

‘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.’

photo 2WP_20150121_002WP_20150121_001WP_20150121_004  WP_20150121_006

Download of Oisín’s Mass Booklet

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22 Responses to Wednesday 21 January – He’s dancing in the sun

  1. Lisa lancaster says:

    Sleep tight beautiful butterfly boy x


  2. Fiona barry says:

    RIP Oisin! You now have your butterfly wings and continue to shine bright!xx


  3. Edel says:

    Fly high Butterfly Boy, you are in our hearts forever xxxx


  4. becky says:

    Sheila – thank you for the beautiful post. I’m crying now as I read it but also feel a new emotion that I hadn’t in the last few days, weeks and months.. gratitude. Gratitude for you and Barry bringing Oisin into this world and everyone’s hearts. His spirit is with us all and will always be. Lots of love to you. x Becky


  5. I was honoured to be part of Oisin’s Christmas party at The Radisson. There was so much love in the room. Bless Oisin’s wee soul, and may he rest in peace.
    Love to you all…Trace Irwine


  6. Grandad Wilton says:

    During this heart wrenching few months, my soul, my body has ached constantly. Every day, sleepless night, thought and action has been filled with the anxiety of knowing that my beautiful little grandson’s time on this earth was short. Oisin is now at peace, my heart is now at peace and I can deal with my grief in a positive way.
    During this time, a song that I love kept playing in my mind and gave me great comfort (it’s amazing how music has this ability). The song ‘PEACE IN THE VALLEY’ is the only song I have of Oisin’s Great Grandmother Wilton singing and is one that she recorded not too long before she died also.
    I am comforted by the thought that Oisin is now in communion with his Great Grandmother Wilton and is singing this song with her. One day I know that I will be joining them and this earthly sadness will, forever, be gone.
    I hope the above youtube link works


  7. Laura says:

    Rest in peace little butterfly boy, we feel very blessed & honoured 2 have met u and ur amazing strong parents, we will always have u in our hearts xxxx Laura, Cormac, Orlaith & Carragh xxxxxx


  8. Colette Burke says:

    Dear Sheila, Barry and Cillian. You have all shown such strength during the past few short months. Strength that shone through in little Oisin. I am so very sorry for your loss of your beautiful little boy. He was an incredible little boy, so incredible God called him back. He’s in a peaceful place now and Im sure he will give you plenty of signs thats hes happy and looking after you all from Heaven. Thank you Sheila for your updates and also your honesty. I’m sure everyone who has followed your blogs can only be astounded by your courage and strength of a mothers love. Lots of kisses and big hugs to you all. Colette xxx


  9. Debbie says:

    Sleep tight beautiful,, may your mam dad and brother Cillian find the strength to carry on such a heartbreaking story thinking of all Oisins family at this sad time xxxx


  10. Brenda says:

    What dignity. What strength, What beautiful parents Oisin was blessed with. May he guide you on your journey through life and may God bless you and keep you all comforted in the knowledge that He is now babysitting your beautiful boy. Safe in the arms of the Angels.


  11. Roisin says:

    God bless you Sheila, Barry and Cillian. May Oisín’s light forever shine brightly and surround you with love. Róisín xx


  12. Uncle Andy says:

    The Yorkshire shamrock will never wilt. Little Oisin has spread his wings. At the the inn at the end of the road we’ll meet again, have a pint and he can tell me what he’s been up to and show me around. Will miss you my darling nephew, you’re one in a million, love Uncle Andy, Cousin Joseph and Cousin Annie, xxxxx. Please give Cilly a big hug from me, xxxx.


  13. Auntie Lisa says:

    I would like to give a big thank you to Danny and Joan Boland (Oisin’s grandparents) for their devotion and their complete lack of selfishness in helping my sister and brother-in-law over the last painful few months. To Barry and Sheila, you have been such amazing parents to Oisin and will continue to be to Cilly. You are all my heroes. Xxxx.


  14. Nora Crowley. barry says:

    Dear Sheila , Oisin’s funeral mass was was beautiful so pure and gentle.
    I will always be in awe of your mental strength and presence of mind.To have logged your family’s journey will enable you all and especially little Cilly to remember the happy and special moments you experienced.You have ensured that the good memories will outweigh the heartbreak and trauma and in time this will be a source of comfort to you all.May your angel Oisin who has returned to God bless you forever.


  15. jhwasc says:

    R.I.P. dear sweet boy. The people working from St. Brigid’s Hospice in the Curragh are amazing, beyond good. Our heartfelt and most sincere condolences, with love, The Hanlon family, Kildare Town x


  16. Michael &Hilary Miley. Baltyboys. says:

    Amazing tribute to a very special little boy from his wonderful parents & family.May God & Oisin continue to watch over you all.


  17. una says:

    ” Good night sweet prince:
    and flights of angels sing thee to thy rest! ” x


  18. Teresa o Connor says:

    Rest in peace Oisin that beautiful little butterfly .Amazing little boy .Amazing parents and little brother and must not forget grandparents that gave all the extra care in t last four months ,there by his side 24/7.may Oisin light shine brightly on ye all.


  19. nelda says:

    RIP BUTTERFLY BOY….your story has been moved by many and your heart was felt here on earth….I know JESUS CHRIST IS WITH YOU NOW….AMEN


  20. Sharon Barrans says:

    Good night, God Bless little Oisin.
    I am a friend of Lisa, and have followed your journey. You have all been so amazingly brave, and given him the most amazing (if far too short) life. As a mother of a 3 year old boy myself (and a six year old girl) I cannot even beging to imagine how you have got through this. May you have peace and strength together.
    God Bless you all.
    Sharon Barrans


  21. Marco says:

    Dear Barry and Sheila,

    time will pass really fast however the story you have shared through this blog will remained forever with us. We keep thinking about you all. This blog is much more than sharing with people your terrible experience, but it is a story of how to face difficulties and our worst nightmares with extreme courage and true love. It is also a story of how to appreciate every second of the time while we are in this planet. We are all here for a short while but we tend to forget this as we are busy with our day to day stuff.. that are not important at all even though we give too much importance.
    This blog will not only help people that will be unfortunately facing similar problems but will make people thinking that the real problems we face everyday (e.g. I arrived late at work, my boss does not like me, oh no it’s raining again…I hate this place ;-), etc… etc… et…) are not problems at all and we should use our time and energy to hold each other and keep telling the ones we love that we care about them.
    I feel that you have been very generous in sharing this story with all of us as you have changed many people for the best and i hope that it will keep reaching the hearts of more and more people. I can only hope that time will help you forgetting this difficult time and to highlight the happiest moment of your life while your beloved Oisin was still with you. Don’t forget that we will always be here for you whenever you want to.


  22. jane says:

    Thank you for sharing your incredible, profound journey Sheila and my deepest sympathy to you and all of your family on your great loss


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