Saturday 10 Jan – Beautiful Agony

Beautiful agony were two words that came to me on the evening that we acknowledged our butterfly boy was moving along into the next stage of his journey. He is very close to getting his butterfly wings and flying his failing body. Beautiful is the time we are getting to spend with him. Beauty is what he brings to us and to the community around us. Agony is how it feels as we go through this pain and disbelief. We walk along with one foot forced to place itself in front of the other.  The pain and grief is felt very strongly now.

Oisin is sleeping in the big bed for much of the day. He is very weak. Still his spirit shines brightly, gesturing to the things he wants with the little bit of movement he still has, telling us faintly but with certainty about his likes, dislikes and needs.  When we ask him how he is he almost always manages to tell us, “good.” Even now, so far along in this process, he can laugh and show his humour. He even laughs in his sleep. So far his journey seems to be as comfortable and as peaceful as one could ever wish for. Please all of you pray that this continues to be as peaceful as it is.

This week he asked to go to the Ballymore Inn, he asked to go out for a burger, he asked for another parcel (i.e. a car!) and he asked to go swimming. We try to fulfill as many of his wishes as we can. He receives a new Disney car almost daily at this stage – as if Christmas was not enough! We went to Eddie Rockets in Naas to get him a burger and he enjoyed how much the interior looked like Flo’s diner from the Disney film Cars (juke box and all!). We went swimming at the hydro pool in Enable Ireland. With daddy’s help, he got a great kick out of squirting mummy and godmother, Yvonne, with the water pistol! So many times we worry Oisin might not be able for these experiences. Each time he shows us that no failing body of his will be stopping his wonderful spirit from doing all that he wishes to do.

The last two days have seen Oisin move a little farther along his journey again. We spend our whole day beside him as he goes in and out of sleep, wakes briefly for a bath or power shower and enjoys eating a few spoons of jelly or apple and rice sauce. We do not need any “parental” meds so far.  Pain relief is the usual Neurofen and Calpol. He wears a dinosaur pull up to make toileting easier for him and yet he continues to insist on using a toilet, determined as he is to remain graceful and strong. I am conscious I write very openly and feel very drawn to doing so. I want to try and share this experience exactly as it is. To not hide it away. To not be afraid (and I’m still grappling with that one). Death comes to us all.

I continue to meditate “a mother’s blessing” each evening in his bedroom as he sleeps. Daddy has joined me the last few times. I continue to massage his feet. He really likes the special time. We light candles and incense in his bedroom. The bed times are very peaceful and calm. We all sleep together in the big bed. Adorable little Cilly, who is spending more time with granny, seems to accept that mummy is spending a little more time with Oisin now he is very unwell.

One evening I was massaging Oisin’s feet and he said, “Why does the penguin sing the lovely song?” We realised he was talking about a film we saw called “Happy Feet 2” over the Christmas period.  The scene Oisin is referring to is when a little boy penguin, maybe Oisin’s age, sings a heart felt song . He is asking the giant elephant walrus to help reunite a stranded part of their penguin colony. Daddy looked the song up on you tube and played it to Oisin as I massaged his feet ….

After all you have done

You really deserve better
Nothing makes sense in this world
It’s all a big pile of crazy
And the kings are all fools
Where is the honor when a solemn promise
Is just a pretty lie
And the mighty mock the courage
Of the humble
Although he’s just an ordinary penguin
My daddy taught me
You don’t need to be colossal
To be a great heart
You don’t need to fly
To be awesome
My Hero
My father…

–Erik’s Opera, “Happy Feet 2”

I wept as I listened and rubbed Oisin’s “happy feet.” Only a few weeks ago Oisin picked out a Superman t-shirt to buy daddy. A few days ago Oisin was given his own superman top to wear. On both occasions my sister and Joseph, my nephew, were present. Oisin’s bond with his father is incredibly special. One other hero for Oisin is Lightening McQueen. His cars have brought so much protection and strength to Oisin in the last few months. In the first “Cars” film, Lightening McQueen had to find his “great heart” and he chose to help a friend in need over winning his race. I think Oisin has found his “Great Heart” too. How alike Oisin and the little penguin are. How extraordinary that Oisin guided us to the song in that particular moment. All of my boys (great and small) are heros to me, especially Oisin.

Please all of you pray for a smooth, peaceful and beautiful transition for our butterfly boy. This is his hero’s journey.

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27 Responses to Saturday 10 Jan – Beautiful Agony

  1. May God Bless you all Sheila.I pray Oisin continues to be happy and peaceful until he gets those beautiful butterfly wings.

    Liked by 1 person

  2. Rob Jobe says:

    Barry & Sheils, we are thinking about you constantly; Oisin is blessed to have such wonderful, loving parents and you all share a courage which we cannot comprehend. All our love. Wishing you peace. The Jobes xxxx

    Liked by 1 person

  3. Ciggie Quinn says:

    I will pray for Oisin and you all & hope the beautiful memories you have made & shared will help you in the future….god bless you all

    Liked by 1 person

  4. Mags O'Connell says:

    To Oisin, the warrior prince, as your journey marches on
    May life’s woes fall behind you as you turn to face the sun
    May peace and comfort wrap you in a blanket of angels wings
    May love and light surround you as another voyage begins
    We are holding you in our hearts Oisin and blessing you with love
    We are our souls promise, the best is yet to come x

    Liked by 2 people

  5. Emer Conway says:

    You are all constantly in our thoughts & prayers Shiela.
    Emer Conway

    Liked by 1 person

  6. josja Eggen says:

    Dear Sheila, Barry, we are thinking about you and holding you in our prayers, All our love. Josja, Jos and kids

    Liked by 1 person

  7. hfahy says:

    Not a day goes by where I don’t think of you guys and the amazing strength and courage you are all showing. What a beautifully written blog post, and thank you for sharing these precious and intimate moments with us all. I send you all the love and support I can, as you enter the next stage of this agnosining journey. All our love, Hannah, Richard, Amelia & Matilda.

    Liked by 1 person

  8. Jacquie says:

    God bless you Sheila, Barry ,Oisin, Cilly, our thoughts and prayers with you for your beautiful butterfly boy. Jacquie and Pierre

    Liked by 1 person

  9. hfahy says:

    Not a day goes by when I don’t think of you, and the amazing strength and courage you are all showing through this heartbreaking experience. What a beautifully written blog post, thank you for sharing these most precious and intimate moments with us all. I am sending you all my love and strength as you enter the next stage of this agonising journey. All our love, Hannah, Richard, Amelia and Matilda.

    Liked by 1 person

  10. Miriam says:

    Dear Sheila

    I’m praying for all of you and particularly Osin. I will be at the Sat Nam Rasayan healing today and I will ask the group to hold Osin in the healing space.

    May the Long time sun shine upon you.
    All Love surround you,
    And the pure light within you,
    Guide your way on.

    Sat Nam

    Miriam

    Liked by 1 person

  11. Adrienne Slattery says:

    Dear Barry Sheila Oisin and Cillian
    To the bravest family – I have learnt to embrace each day with my young children even more from reading your journey.
    Thank you for sharing and I will keep you all in my thoughts for contined peaceful journey.
    We are in New Zealand and our butterflies are just arriving with the arrival of summer here – i think of your butterfly every time one arrives.
    Adrienne, Tim, Henry 5 , Isabella 3 and Abigail 2

    Liked by 1 person

    • Martina Mullins says:

      Sheila & Barry – thinking of you all at this difficult but precious time with your butterfly boy. Thank you for sharing your blog which is so beautifully & inspriringly written. I have no doubt but it will be a huge comfort to you, Cillian & your extended family in time to come. Remembering you all in my thoughts & prayers. Martina Mullins x

      Liked by 1 person

  12. Nicola mulligan says:

    Barry, Sheila. Cillian & Especialy Oisin you’s are always in my prayers! I pray You’s find the strength as You’s go through the next stage of your heartbreaking journey xx

    Liked by 1 person

  13. Fiona Ringholz says:

    Just thinking of you. Hope you’re comfortable oisin. Sleep tite.

    Liked by 2 people

  14. Sarah curran says:

    Sheila, Barry and the beautiful boys you are all in my prayers and thoughts. Sarah

    Liked by 1 person

  15. Joanne Chambers says:

    Dearest Sheila and Barry, thank you so much for sharing your painful journey with us all. I’m not sure any of us can comprehend how you have the strength to write such beautiful words when enduring such agony. I hope it brings you as much peace as it is giving to others. Your blog has been a huge gift to me over the last few months, reminding me that every day, no matter how mundane, is beautiful, especially when there are young children to watch. You have literally stopped me in my tracks and made me notice all the beautiful things that are happening right in front of me, that before I was a little too busy to notice, or just took for granted. I hope these days are as peaceful as they can be and that your little hero keeps smiling and laughing. We are thinking of you constantly and sending you all our love – The Chambers family xxx

    Liked by 1 person

  16. Sabrina boland says:

    Amazing photos of your amazing family and darling boy
    Always in our thoughts x

    From this blog I just see the imense love you all have and while this poem is often used at weddings I think of this when I read this blog

    i carry your heart with me

    i carry your heart with me (i carry it in
    my heart) i am never without it (anywhere
    i go you go, my dear; and whatever is done
    by only me is your doing, my darling)

    i fear
    no fate (for you are my fate, my sweet) i want
    no world (for beautiful you are my world, my true)
    and it’s you are whatever a moon has always meant
    and whatever a sun will always sing is you

    here is the deepest secret nobody knows
    (here is the root of the root and the bud of the bud
    and the sky of the sky of a tree called life; which grows
    higher than soul can hope or mind can hide)
    and this is the wonder that’s keeping the stars apart

    i carry your heart (i carry it in my heart)

    Liked by 1 person

  17. Mary O'Connell & Mick Lennon says:

    Dear Sheila & Barry, I’m so sad to hear about your heartbreak and that things have been progressing for little oisin. Mick & I think of you a lot and check in to your blog, you have my admiration for the amazing and brave way you’ve tried to put oisin’s happiness & enjoying life the four of you together before all those less important things over the past months. I’m giving you both a ‘mental hug’ and will continue to send positive thoughts and prayers to you all. Love, Mary O’Connell & Mick Lennon

    Liked by 1 person

  18. garetho says:

    Sheila my heart breaks for you guys. My mum asks about you all the time. It must have been so hard to write this and even harder to deal with what is happening now that the next stage is approaching.

    No parent should ever have to bury their son or daughter, especially at such a young age. I’m not sure if prayers help any more but I’ll continue any way. You guys have been fantastic throughout and an inspiration for anyone having to deal with similar problems.

    Liked by 1 person

  19. Debbie says:

    I hope and pray Oisin has a peaceful and painless journey when he gains his butterfly wings yous are all truly amazing strong people just from reading the blog it shows how incredible yous are and yous have made sure your beautiful boy has enjoyed every last second as he has wished xxx

    Liked by 1 person

  20. Matt says:

    What beautiful words, our thoughts and prayers are with you daily.

    Liked by 1 person

  21. You have all found your ‘Great Hearts’, clearly. I’m on http://www.adrianmillar.ie, and I must send you my new book, The Beauty Of Everyday Life, with stories from the likes of Joe Duffy and Frances Black. xxxxxxxooo

    Liked by 1 person

  22. Morgan says:

    Such beautiful and moving words. Your butterfly boy is blessed to have such a wonderful family around him to fill his days with love and laughter. We are thinking of you every day and wishing Oisin and yourselves every possible feeling of peace and of joy for the gift of his being. Xxxxx

    Liked by 1 person

  23. Brenda Smyth says:

    What a beautiful child Oisin is, so handsome with his dark curls and long eyelashes. I feel so so sad for you all. If only wishes could come through your beautiful child would live forever, but he will, in you, in his brother and in his extended family. God bless you .

    Like

  24. Brian and Sinead says:

    Barry & Sheila, I can see where Oisin gets his strength and bravery from, and I’ve no doubt he has felt your exceptional love and care every step of the way. we’re continuing to pray for you all, and are here if you need anything at all.

    Harry sends his love.

    Like

  25. 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.

    Like

  26. veronique says:

    His beautiful smile and radiant sunshine has gone but his spirit, shines and soars. You will always be together. Always.

    With heartfulls of love, Veronique and John

    Like

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