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
–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.