Sunday 7 Dec – Butterfly blessings to Oisin from Balllymore and Beyond

Another week has passed yet it seems just a few hours since I last wrote. Time is timeless. It’s happening but I have no sense of it.  Not sure how else to describe it in words. Oisin is doing well. We are ten weeks on. He was climbing around a soft play centre this week, which gives you some sense of how well he is doing. He is a little more unsteady on his feet, he seems a little more tired and sickly, he still loves his cars, he remains determined, he continues to connect through humour.

Relatively quiet week here at the farm in Ballymore. All around us we are aware that so much support, hard work and creativity in fundraising is happening……Auntie Mai, supported by her family, held a Christmas cookery demonstration that raised money for Make a Wish Foundation. What a really good idea Mai, given what a fabulous cook you are, to do what you love for a person you love. Thanks also to Ballymore GAA club who, as part of their usual fund raising event “strictly come dancing”, generously donated some of the funds to Oisin and Make a Wish.

Oisin’s journey has moved a whole community of people here in Ballymore, and they were keen to try and help in some way. You may recall in a blog some weeks ago that the Ballymore parish had a bake sale and various other fundraising activities. A huge amount of money was raised and today we attended a very memorable presentation of this money  to Make a Wish and to Oisin. We were delighted that Sinead, a Kildare woman herself, came from Make a Wish to accept the cheque and gave a very beautiful speech. Sinead, I was moved to tears as you talked about the blog and of Oisin, calling him our beautiful butterfly boy. We were presented with a most colourful and symbolic painting of a Red Admiral butterfly landing on a big vibrant flower. Aine we are absolutely thrilled to receive your work and will find so much comfort from it as we go along our journey. We were presented also with a very clever and delicately crafted picture of two butterflies in black on a white background. A closer look reveals the word Cillian in the wing of one and Oisin in the wing of the other.  Thank you to Jenny’s friend for this delicate piece. We will treasure it. Msgnr. Wilson said some inspiring words that helped us along our spiritual way as always, Maureen coordinated the presentations and said her own kind words to us, I received a beautiful presentation of flowers from Mary and Tony, Santa was there to give the boys gifts and we met and heard the thoughts and blessings of so many members of the Ballymore community. It was just so nice to be with you all today and connect with you as individuals. Many of you shared with us your own challenging journeys. Maureen, Jenny and Cher, thank you so much for all your hard work in organising this. Thank you to all the other members of the parish who put in so much hard work and time.  Really looking forward to the photographs. It was hard to stay composed and give a smile for our patient photographer, Christy. The wiggling Santa hat you wore helped to raise a giggle at the right moment and I felt under no pressure to hide my tears from such a loving community.

As for what we have been up to over the week – just hanging out on the farm really, but we did venture out to Joey’s play centre in Naas towards the end of the week. It’s the first time we have been to a play centre since the diagnosis. We worried Oisin might find it too much. Joey’s is a small and cozy place that’s great for the little kids. We went to the the morning music session and it was nice to meet up with friends there (big hug Sandra and Olivia :)). Oisin seemed to have an air of “I am too cool and big for this now” about him whilst Cilly gave it gusto with the dancing, singing and clapping. His moment came when he got to hold up the star as all the children sang “Twinkle Twinkle”!! Going to Joey’s wove another incredible thread into our journey. A member of staff introduced us to a family with a little girl who was being treated for a tumour. They just happened to be in Joey’s after weeks of not visiting. The little girl’s mother invited us to a Christmas party organised by “Aoibheann’s Pink Tie,” a charity set up by Jimmy, who lost his beloved daughter to cancer. We went along to Dunboyne Castle Hotel and had a nice time. The boys had great fun in the big American style truck. Cilly was miming and acting along as a very talented young girl sang the Frozen song and the boys had a giggle at hip hop style Santa and his elves! (Nice to meet my friends Julie and Eleanor for a hot choc after too – even though Cilly was pretty wired by that time!!)

Meanwhile back in Cork a bake sale was held a few weeks ago and again a substantial amount was presented to me by my fab colleagues and friends from the Blackrock and Mahon adult mental health team. I have sent my thank yous to you all through Orla and I just want to say as way of raising awareness that whether you are a person who receives the support of a service like ours in Blackrock or whether you are someone who is facing the most heart breaking loss, suffering comes to us all in its various guises. It doesn’t differentiate between those diagnosed with a mental health problem or not. I intend to make full use of the various therapeutic services because I know that they really can help both me, my husband and our children. Now is the time. We never have to suffer alone. We are constantly impacting on the lives of those around us and I have never felt and absorbed that fact more so than now.

My good friends in England (hugs to you Also and Guy) sent us some chocolate brussel sprouts (presently being gobbled down a whole lot more readily than the real thing, which has made its way to the Boland dinner table in last few weeks!!) I really like the words on the front of the card you both sent, so wanted to share….

“There are some who bring a light so great to the world that even after they have gone, the light remains.” 

I also received a card from my good friends in Cork (Bethan and Rich) with some Dolly Parton song lyrics enclosed. The song was played at their wedding and now it reminds Bethan of us. You may like to know that Barry surprised me the year I went to live with him in New York, by bringing me to see Dolly Parton in concert. We were in the twelfth row and as you can see, her song writing is just beautiful and this song in particular is very fitting for our present circumstances…..

“Love Is Like A Butterfly”

Love is like a butterfly
As soft and gentle as a sigh
The multicolored moods of love are like its satin wings
Love makes your heart feel strange inside
It flutters like soft wings in flight
Love is like a butterfly, a rare and gentle thingI feel it when you’re with me
It happens when you kiss me
That rare and gentle feeling that I feel inside
Your touch is soft and gentle
Your kiss is warm and tender
Whenever I am with you I think of butterfliesLove is like a butterfly
The multicolored moods of love are like its satin wings
Love makes your heart feel strange inside
It flutters like soft wings in flight
Love is like a butterfly, a rare and gentle thingYour laughter brings me sunshine
Everyday is spring time
And I am only happy when you are by my side
How precious is this love we share
How very precious, sweet and rare
Together we belong like daffodils and butterflies

Love is like a butterfly
As soft and gentle as a sigh
The multicolored moods of love are like its satin wings
Love makes your heart feel strange inside
It flutters like soft wings in flight
Love is like a butterfly, a rare and gentle thing

Love is like a butterfly, a rare and gentle thing

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2 Responses to Sunday 7 Dec – Butterfly blessings to Oisin from Balllymore and Beyond

  1. Nicola says:

    Hi! Not sure if you know about the big butterfly count that happens every year in the summer:http://www.bigbutterflycount.org/ Your blog reminded me of it. Sending you strength. x

    Like

  2. Sinead Christian says:

    Hi Sheila thank you for your lovely words. We are so grateful at Make-A-Wish Ireland to your family and your neighbours and friends for the fantastic fundraising. You are helping us to create more extraordinary moments for brave children and their families.
    Kind wishes to you all
    Sinead
    ps your story is inspirational and filled with hope, strength and joy.

    Like

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