Saturday 3rd Jan – New Year’s Butterfly


Butterfly blessings! Above is the butterfly we were greeted with at our front door window on New year’s day, a symbol for us of our beautiful boy and his road ahead.  Oisin is sleeping more now, his left side functions only to prop him up for sitting and crawling, his speech has slowed. Despite all these losses, we saw him as determined as ever to get around Joey’s soft play area this afternoon, whilst out with Sandra and her family. With much help from his dad, Oisin made his way through the nets, up the platforms and down the slide. He landed with a smile, and his humour continues to let us know what a fabulous and remarkable boy he is.

Just to give you a sample of Oisin’s humour, there was one day during the week Grandad was showing the boys the whole salmon (eyes and all!) that we had been given for dinner one evening. He pulled it out of a big plastic black bin bag. Fascinated, the boys stared into its eyes and felt its scaly skin. Oisin was sitting on Granny’s knee at the kitchen table and Cilly was in my arms (a favourite spot :)) Oisin turned around to Granny and said he had an idea. His idea was to leave the black bin bag down on the floor with the salmon in it and wait for Uncle Bren to come in. We were to tell Uncle Bren that Santa had left him a Christmas present!!  Of course we all played along and set the black sack with salmon down on the floor. What a great laugh Oisin got to see Uncle Bren shriek in shock as he pulled out a whole salmon! Oisin’s body may be struggling and changing, but his wonderful humour knows no limits. We encourage all of his strengths, and he continues to have many.

We said our sad farewells to Niall, Izzy and the boys on Tuesday. Some really nice family pics below. We also said our goodbyes to Niall and Becky, who were back in the Conway family home for Christmas. They had traveled over from San Francisco, a place close to our hearts and the place where Barry and I first met. We were so happy to catch up with you both and share an evening out, our first night out in months. Niall, you sneaked into a photo. It is of the day Barry took Oisin down the lane to visit your house. Mai and Mike (family) came to visit also, and with their visit they brought one of Mai’s fabulous dinners. We always appreciate them, Mai. Mike, thanks for giving me the heads up on the RTE doc of Enable Ireland, Sandymount. I enjoyed watching the hard working charity get a make over. I’d encourage everyone to visit their garden centre and have a look at their work if you are ever in the Sandymount area of Dublin.

As New Year’s Eve came and passed, I went through a couple of days of feeling low. Similar to Christmas Eve, it came and it went, supported by the love and listening ears of a dear friend of mine. I’m feeling calmer and accepting that this is all part of the journey we are on. The waves of emotion pass through us all in different ways. Sometimes in anger and outburst, other times in tears, other times in humour and distraction or business and it simply is as it is. We hold each other through it. We give ourselves a space when we need it.  We have no choice but to keep going on.

Yesterday my sister, Lisa and her fun loving boy Joseph visited. As always, Joe put a smile on Oisin’s face. Cillian is doing the interacting with the visitors more so than Oisin now, who tends to sit close to his daddy or granny where he feels safe. He is usually looking at his cars or looking at cars on the computer that he wants to get next! We all shared a beautiful day, the sun shone and Joseph got to do all he wanted, which was to ride with grandad in the tractor and feed the animals.

The boys are sleeping now. Oisin has upgraded to the best bed in the house, which means both mummy and daddy get to sleep beside him with comfort. If Cilly gives me a shout during the night then I pop in beside him. I have started to massage Oisin’s feet with some essential oils Barry had the good idea to get me as a Christmas gift. Oisin seems to enjoy the massage and it’s a way that I can share my own special time with him.

I really like the family pics below. Take a look at Oisin with Marian’s dog, Honey. Both Honey and Bella live along our lane and they have been great therapy for the boys, as have all the farm animals and Mr Grey.

IMG_0953 IMG_0958 WP_20141226_002 IMG_0972  IMG_0981 IMG_0987IMG_0974 (B+W)IMG_0974

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3 Responses to Saturday 3rd Jan – New Year’s Butterfly

  1. Julie Meehan says:

    Sheila, my heart was smiling reading about Oisin’s ‘trick’ on Uncle Bren…his energy really came alive on the page! Thank you Oisin for such a great ‘idea’ and thank you for sharing from your heart as always mama-warrior. It is an honour to be touched with your inclusiveness as you all traverse these frontiers.
    May you all continue to be showered with butterfly blessings.
    What beautiful photies xxx


  2. Rebecca says:

    I can imagine Bren’s shriek from here with that trick, good one Oisin! Here’s one of Jims favourite Christmas cracker jokes for Oisin & Cilly, ‘what do you get when you cross Santa with a duck? A Christmas quacker’
    love and hugs from all of us in Cork

    Liked by 1 person

  3. Lisa lancaster says:

    As always I read your posts with smiles and a broken heart for you all. Hopefully we will see you on Friday xx


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