Tuesday 29th September – A Memorable Month

Oisin in the fallen leaves at our first house in Cork

September

A year ago I began this blog writing about September. I wrote the following….

“September has always been a memorable month. Barry and I got married in September. Our youngest boy, Cillian, has his birthday in September (he has just turned two and is emerging as a fiesty, funny and chatty little boy). Forever in our memories now will be the day we were told that Oisin had a brain tumour,  30th September 2014.”

We have arrived here again. The autumn leaves are changing. It is a time for new beginnings. It is a time for transitions. This time last year we entered the chrysalis. Our lives were never to be the same again. What we witnessed in Oisin transformed us all and we continue to grow from this experience. Now I look back a year on and I find myself painfully reliving this time. It is a time of reflection and a time where I seek to remember Oisin, as our human boy. I remember how we started to see him change around the time he began pre-school. I recall the early signs of his illness, and the quiet voice in the back of my mind telling me something was wrong, something neurological, as I watched him running around and not keeping up with his friends. I recall the first days in hospital, the tests and scans and the waiting for the results, with no fear in my mind that whatever it was couldn’t be nursed back to health. The remembering just happens in me. The crying and disbelief that we really went through this – just happens in me. I don’t know any other way than this way. It is the way of my heart. I don’t run. I surrender. Why? How? Because it feels real. There is a beauty to all that we went through…. the beautiful agony of this time with Oisin and his journey towards his butterfly being.

The picture above shows Oisin in the autumn leaves, on a trip back to Cork following his diagnosis. He was quickly losing the ability to walk. In the photo he has just been to football match in Pairc Ui Caoimh with his Dad. It wasn’t planned. We were just heading out for a walk and a match happened to be on. Barry knew he had to take Oisin and experience the magic of watching a match at a big stadium. This is one of my favourite pictures of him during this time. It captures the transitional time of year, his joy to be in the leaves on the ground, that incredible smile of his, a knowing look, his Lightening McQueen coat;  and also the clear signs of his tumour, his weight gain, that he is sitting and not running around in the leaves, and the way he holds his left hand. It’s all there in that one picture. That one heart breaking picture.

Cilly’s way is very different to my way! Cilly welcomed September in with a healthy obsession for blackberry picking and putting mummy’s nerves on edge with all the big jumping and climbing he has been doing!

Cilly’s bouncy birthday

Cilly turned 3 on 12th September. He continues to be a fiesty, funny and chatty growing boy! Of course he wanted to spend his birthday with Granny and Grandad in Ballymore. We decided to keep it small, tempted as we were to gather all our usual friends from the area and over Dublin way. It had to be for Cilly and Cilly only. So a sunny day, a bouncy castle and some nearby friends were just the right balance for a bouncy, happy day (thanks Jeremy and Fiona for the bouncy castle). The chocolate caterpillar cake was a hit once again this year as it was last year (no, I didn’t bake it)!! Great to have Reuben visit us in the evening to make a fun and magical end to Cilly’s day.

 

Cilly has become his playschool name, “a grasshopper!” He jumps off everything he can climb up and is getting higher, so much so it has now caught the attention of our mum friends here in Cork. As we watched him climb up to the top of the safety nets in the local play centre, and “let go” as his way of getting back down again, we starting to consider ways he might channel this love of jumping – perhaps gymnastics or climbing!

Very special moment at convent grounds near our house. I saw two butterflies together and then a grasshopper all around the old disused fountain. Cilly happened to pop his head into this butterfly shot at just the right moment.

I have taken on the role of mother and what feels like stand-in big brother and play mate to Cilly. He still seems to be in the role of younger brother. He needs to have an older person to feel secure before he will go to the slides at the playgrounds, explore in the play centres or be comfortable playing with other children. At playschool, he tends to stay close to the teachers but he does seem to be making friends within his own limits. Playing with him is a chance to learn how he is getting on emotionally. His play is full of magic and bringing toy animals to life. He is quite the dramatic artist!

The other night Cilly and I were reading a bedtime story. He got to a part in the book that talked about being lonely. Cilly piped up, “Granny is lonely when me and Tom leave.” Then he looked sad and said, “I miss Granny…. Do you miss Granny?” I said I didn’t really miss Granny too much because we can visit her but I said I did miss Oisin. I asked him if he missed Oisin. “No,” he said, “I still see Oisin.” I asked about this some more. He described seeing Oisin as a purple dragon and that I could see him too if I had lots of “love, love, love.” He told me he saw him when he touched the “love tree” at the gates of his playschool and he also saw him when the blinds were up out of his bedroom window. He said to me, “keep trying mummy.” We printed out a dragon picture today. This is one he picked out that most looked like Oisin to him.

First day of School

September is the month children begin school. Oisin would have started junior infants with his friends this year. Cilly continues to meet with the friends he and Oisin made, every Thursday in a play centre. We didn’t go on the Thursday they all started their new schools. Instead, Cilly and I went off to the beach where I often brought the boys. We could feel him all around us. I was terribly sad that day. I’ve moved through it again. I’ve managed to ask a little more about how Oisin’s friends are all getting on. I was surprised when I heard about all the academic books they were having to pay a small fortune for and the homework some of them have to do. But it was when we were talking about what the children were now drawing that it hit me how much I had become frozen in time. In my mind 4 and 5 year olds are still drawing scribbles. One boy gave Cilly a birthday card. Inside he had drawn a beautiful, sophisticated scene of a jungle. I could identify the creatures he had drawn. How quickly they have moved on already. I imagine Oisin’s wisdom is beyond any need for school now. I imagine that he is with each and every one of his friends as they make this big transition. But as much as I can comfort myself with what I imagine, the reality is that he will never be doing any of this.  I will never get to see the delighted smile on his face as he brings home his art work for mummy to see. I will never get to see him looking smart in his school uniform on his first day of school. I will never get to gush with delight at all the new friends he is making and all the new things he is learning, watching him go through all the ups and downs of settling into “big school”. I will of course get it all with Cilly – but that isn’t a reality that exists for me right now and I never know what tomorrow brings any more. I have only now. We all do. 

Me doing “Hast Kriya” in Dingle, one of my 40-day meditations!

One more week of Kundalini Yoga

I am preparing myself for my final week of Kundalini Yoga teacher training October 8th, in Italy once more. I am so excited about it. It feels like a home for my soul when I go there. I notice how much my practice has grown. How easily I move into the practice now. How my life has become so flowing and synchronised. What used to overwhelm me is much more integrated. It continues to open my heart and I let it. I just keep letting go. It has become part of who I am and I am so incredibly grateful for it in my life. Grateful too for the people I have met because of this journey. It is a compassionate, authentic, healing and accepting community to have in my life. I have been teaching Yoga to others as part of my training requirements. It is always met with a lot of positive interest. I was even invited to share it with a men’s group at work and it comes into a group I do on the ward all the time. It seems to be connecting with others very naturally. Thank you to all those who have participated so far. I look forward to more. Tomorrow I will be marking Oisin’s diagnosis day with morning yoga and meditation with my colleagues and friends. The following week, before I head back over to Yoga Borgo for the final time, I am giving a full morning sadhana (yoga practice) and aquarian mantra meditation practice to a group of colleagues who are based in Cork city. How fab you all are for getting up so early. It starts at 6.30am! I am also teaching it to a group of mums next week (thanks Bethan). I really enjoy sharing this practice, knowing how much it can help and heal.

I practice 40-day meditations as part of my training but much more because I get so much from them. Funnily enough, I will be finishing a 40-day one this evening. I didn’t time it to be on the eve of 30th but there you go. I might try this one “meditation for a grateful heart” next.  http://www.spiritvoyage.com/globalsadhana/heartofgratitude . This meditation is a global sadhana where people all around the world will be doing this 40-day meditation and receive an emailed link to a video each night. There is a forum to share experiences. The music that goes along with it has been in my head for weeks so it was no surprise to then see it had just started up as the latest global sadhana, such is the flow of life these days. I invite you all to try one!

More healing connections

Along with the yoga I have been forming more connections with others in the well being and healing world. Upon a recommendation from my friend, I decided to take Cillian to a kinesiologist called Tony Galvin. I tried to time it with Cilly’s end of nap in the afternoon but as it turned out Cilly was still fast asleep in the car when I arrived at my appointment. I woke up a grumpy Cilly, took him to this strange man’s house and Cilly was having none of it. He cried and cried then made a dash for the door and right out of the house! We took the hint. That was Cilly in general for a while. It was like he was just saying, “leave me alone. I just need to have everyone back off for now and let me be as I am with this. All you need to do is love me and I’ll do this in my own way and in my own time.” Days after the session Cilly decided it was time to take off his nappies, marking another transition in his life. He has been able to use the toilet for months but was just too afraid to take off the nappy. Cilly will always do things his own way, in his own time. I’ve learned to trust his wisdom – because he seems to have so much  of it!

As it turned out,  I discovered that Tony and I have a lot in common. We have both lost a child. We have both been on an extraordinary journey ever since. Tony is further along that journey and he tells me how life changing his daughter’s death has been. His life is now dedicated to helping others through kinesiology and he too has made some nourishing connections with others who have helped him along his way.

Nirinjan Kaur

Beautiful Concerts

Recently I went to a Nirinjan Kaur and Matthew Schoening concert. She is a very beautiful singer and kundalini yoga teacher. The concert was powerful for me. I found myself sitting on a yoga mat in the front row, directly in front of her. The first part of the day was a yoga workshop with her. The meditation she chose at the end of the yoga set spoke right to my heart. It was a meditation I had done a few times when I returned back to Cork – a meditation for a broken heart. It wasn’t the only time the tears flowed during her concert. During a song called “waves”, I closed my eyes and felt the words move through me. I was transported to a beach where the waves of the sea splashed over my face. As I sat there surrendering to the healing power of each wave, Oisín appeared beside me and I became aware of the loving presence of the whole room around me. Thank you Nirinjan Kaur.

We went to another very special concert as a family, in Dublin’s fabulous National Concert Hall. We went to hear the angelic voice of Orla Fallon:
    

You will recall that Orla sang and played harp at Oisin’s funeral. We have kept in touch ever since. The concert was intimate and relaxed, with many songs dedicated to family and friends in the audience. We too had a song dedicated to Oisin and our family, which had me crying throughout. Orla if you are reading this you will enjoy me telling you that my parents are also very inspired by the music and folk of Tennessee. They have been there themselves and have become friends with the Oakridge Boys. My Dad, especially, is a humongous fan! The song you dedicated to us, “In the sweet by and by” (this is a link to Dolly’s version) is a song my Dad and I strongly associate with my childhood and with Grandma. We used to sing it often, along with another song that my Dad has of my Grandma singing “Peace in the valley.” One of Dad’s comments on this blog was as follows, “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.” “Down by the Sally Gardens ” was another song Orla performed and was one I used to sing when I was a child long before I met Barry and then Ireland, two great loves in my life now! When I first arrived in Ireland I noticed that everyone had a party piece that they would stand up and sing at weddings or long nights out! I loved this idea and went in search of my own party piece. Well, the second song Orla chose that night was the very party piece I learned, the beautiful Scottish folk song “My love is like a red red rose.” How remarkable that she chose those songs. Another very special synchronicity. I am sure she felt Oisin whirl and twirl as much as we did when she sang that evening. Thank you, dear Orla Fallon.

A link and a message from Barry….

Barry returned to Barretstown for a family event whilst I was at the Nirijan Kaur concert. Like the one I described in a previous blog, it was a day for families who have loved and lost a child. It was much the same format as last time only this time Barry got a chance to speak with the CEO of Anam Cara, Sharon. This is what he shared…

“Here is some information on a support group for bereaved parents called Anam Cara (Irish for Soul Mate), who have been very supportive to us. The founder, Sharon Vard, is a great person and inspiration to us. Her daughter, Rachel, passed away 11 yrs ago from DIPG. I was talking to her last Sunday at Barretstown, and she’s the first person I’ve spoken to who went through the trauma of having to face the loss of a child to DIPG.

A link to an article ” Sharon Vard, CEO Anam Cara, “In the beginning it rips you apart. Parents discuss losing a child.”

September is also Childhood Cancer Awareness Month, and our thoughts are with all the children and families going through this major ordeal, filled with uncertainty.

So, as I close the blog and post it up this evening, I share with you a prayer that I was given that I have placed on my windowsill in the kitchen. It is a Catholic prayer to all who have to face days like the one we face tomorrow. Symbolic days. Days where that little bit more strength and courage is needed just to get through….

Prayer for Strength

Every day I need you Lord but this day especially, I need some extra strength to face whatever is to be. This day more than any day I need to feel you near, To fortify my courage and to overcome my fear. By myself, I cannot meet the challenge of the hour. There are times when human creatures need a higher power to help them bear what must be borne. So dear Lord, I pray, hold on to my trembling hand and journey with me today. Amen.

– We sometimes replace “Lord”, with “Oisin”

May you all have a peaceful, reflective day tomorrow.

All my love and blessings,

Sheila

P.S. Text written in blue are links you can click on, to video clips and websites you might find of value.