Tuesday 29th September – A Memorable Month

Oisín Going Up Hill

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.

WP_20141130_046We 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

IMG_1572image-1c9999ece70f28d1dfd79f1e8ea8cb24680555fa845d674573bebcffa69bcd0c-V

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.

image-20d612bc2fd2ddd1f900e229d18cc523a112016e4ebd9174c919019e6a9cf922-V  IMG_1577

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!

DSC_0139

DSC_0120

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 misoisin dragons 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. DSC_0157But 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. 

DSC_0066

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

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:
IMG_1427    IMG_1429

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.

Sept-Childhood Cancer Awareness

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.

Posted in Uncategorized | 4 Comments

12 July 2015 – 6 months later….

WP_20150708_012

Butterfly on the lavender, Yoga Borgo, Italy

SIX MONTHS ON

It is 6 months since Oisin’s death. My relationship with him has changed over time. Whilst my memories of him as our child are still so strong and painful, my experience of him now is of a bright, sparkling and vast energy. He is never too far away, dancing and twirling around. He makes himself known in so many different ways and through so many people. It helps me to stay open to this kind of relationship with him.

This blog has become a story of what this one incredible little boy gave to his family. To me, his human mother. To Barry, his human father. To Cillian, his human brother. It ripples out to all. I get one shot at making what he did for us really count. That’s why I keep my heart and soul open to all of the experiences I am having along the way. At times, the path has been going at such speed I have felt very afraid and I often wonder if I will keep writing this blog in such a public way. What we are going through is so personal. I don’t want this to be all about me and Barry and Cilly. I want this to be about how these experiences can shape the whole course of our human life in the most profound way. Suffering is without doubt, very cruel, and yet it can be the one thing that can shake us into a much more conscious existence. A much deeper understanding of who we really are. This is my experience. Everyone goes through the same journey in their own way.

SECOND WEEK OF YOGA TRAINING AT YOGA BORGO, ITALY
WP_20150710_003

WP_20150708_019

 

 

 

 

I have just returned from Italy where I did my second week of Kundalini Yoga training. It was a similar pattern as last time. The start of the week was difficult. I missed my family and felt particularly raw this time. The yoga practice helped me to bring up some very deep emotions, more than just grief. Painful as it was it was liberating to move through them and emerge out of the other side with a more solid sense of who I am. It’s like shedding layers of old selves that no longer serve a purpose any more. The yoga was so powerful this time. I experienced a lot of energy moving through me during the practice. It was a surprise to discover this energy can actually move around the body in this way, but in the surrender to the experience of it the feeling is utterly beautiful and quite beyond any words. I noticed how much more strength I have gained in the practice. I returned from Yoga Borgo feeling much more in balance with myself. The challenge, as always, is maintaining the practice.

WP_20150708_022

“We are not human beings having a spiritual experience. We are spiritual beings having a human experience.” – Yogi Bhajan

Flowers on the hillside

Flowers on the hillside

WP_20150518_001

A room with a view

WP_20150707_007

A place to sit

WP_20150708_005

Hammock

Stella. A yogi cat.

Stella. A yogi cat.

4 July BBQ - The Sada Sats are American!

4 July BBQ – The Sada Sats are American!

 

 

 

 

 

FAMILY TIME IN DINGLE

When I returned,  Barry and Cilly had gone to Dingle for the weekend to join Barry’s family. Barry sent me some gorgeous pictures of Ventry Strand. We have taken a holiday in Dingle every year for the last 3 years and will be there again in August. Oisin really loved going. It sounded like an emotional few days for the family. Barry told me Oisin’s presence was felt everywhere. Looking at the pictures, I can see why….

WP_20150710_001 WP_20150710_002 WP_20150710_007

 

butterfly being quote

BUTTERFLY BEING SITE LAUNCH

My dear friend, Julie, who I trained with in clinical psychology, has launched a web site. It is called www.butterflybeing.com. She is offering group and individual work, acting as “a facilitator and guide to work with you (or your child) to elicit and cultivate your own innate power to move towards wholeness and to transform what is ready to be discarded in your life, both internally and externally.” (taken from Julie’s site).  She writes on it that Oisin was her inspiration in bringing the concept together. I will add her details on the help and support section of this blog. It is a very beautiful site and I wish her well with her work. I share with Julie a vision of well being coming from the unification of body, mind and spirit to bring true, deep, lasting healing to people of today’s world.

Peace to all. Love to all. Light to all.

Sheila

Posted in Uncategorized | 3 Comments

Sunday, June 28th – A Mindful Walk for Barry’s Birthday

Seefin_Passage_Tomb

Seefin Passage Tomb, Co. Wicklow

Today Barry turned another year older. It was an emotional day. He chose this day to connect with the heart,  bringing family and friends together for a silent and mindful walk up Seefin, his favourite walk in the Wicklow mountains. The sun shone brightly as the people walked along their way. Barry set the tone of the walk and tuned us in to our “heroic journey” with the following words….

IMG_0718

Oisin walked his with grace and beauty

                 The Heroic Journey 

(adapted from http://celtic-spirituality.net/)

“Ancient Irish stories tell us about the hero or heroine who is ‘called’ outwards from the familiar place to experience something completely new. These stories teach us that it requires courage to step outside of the familiar and to follow the call of the heart. This is why it is “The Heroic Journey”. This heroic journey has much to teach us about our own life journey.

The heroic journey often leads the traveller into difficult and testing situations, but he/she returns from the journey a changed and more compassionate human being to share their gifts of wisdom and insight. The journey is also about the discovery of YOUR GIFT. The word in Irish is DAN – which means both your poetry and your destiny – for your destiny is interlinked with the practice of your gift in this world. Because we are all individuals, no one can offer your gift to the world in exactly the same way as you can.

This walk will take us on a personal journey and enables self exploration to uncover your giftedness and to hear ‘the call’ to the most exciting journey of your life – the Heroic Journey.”

Caim (Encircling) Prayer for the journey.

Circle us with peace – keep light and love within, keep danger without.
Circle us through this day – keep childlike trust within, keep fear without.
Circle us this night – keep health and peace within, keep dis-ease without.
Deep peace of the quiet earth, deep peace of the flowing air, deep peace of the ocean’s depth, deep peace of the God of peace. Amen.”

Cilly went up on the shoulders of his Daddy and Granddad and was perhaps the most mindful little hero of us all, taking in the energy of the nature around him and of the people as they walked. Here are some pictures of our climb…..

WP_20150628_004 IMG-20150628-WA0001 WP_20150628_003 WP_20150628_005WP_20150628_011

Morgans-1WP_20150628_007WP_20150628_012WP_20150628_020IMG_1362IMG_1360IMG_1361

At the top was a Neolithic tomb, a gift from the ancestors. The living gathered with the dead to take in the message of  Barry’s heart felt readings, which are shared below….

Tiny Footprints

– Authour Unknown

These are my footprints,
so perfect and so small.
These tiny footprints
never touched the ground at all.
Not one tiny footprint,
for now I have wings.
These tiny footprints were meant
for other things.
You will hear my tiny footprints,
in the patter of the rain.
Gentle drops like angel’s tears,
of joy and not from pain.
You will see my tiny footprints,
in each butterflies’ lazy dance.
I’ll let you know I’m with you,
if you just give me the chance.
You will see my tiny footprints,
in the rustle of the leaves.
I will whisper names into the wind,
and call each one that grieves.
Most of all, these tiny footprints,
are found on Mommy and Daddy’s hearts.
‘Cause even though I’m gone now,
We’ll never truly part.

I Don’t Mind

-Line of a song from album by Harnam Singh

Your heart will break from time to time
And hurt will creep inside,
But a heart that breaks is open wide,
Whatever happens I don’t mind

We took the climb down beneath a warm, bright sun and gathered at the end for a BBQ in the Kippure Estate Holiday Village. Friends and family chatted and children ran around. Here are some pics…

IMG_1369IMG_1372IMG_1368IMG_1371IMG_1367

 

An emotional day for Barry as he turns another year, knowing his butterfly son will be forever young. But Oisin, as we know him today, is a wise old soul and seemed to me to be dancing and laughing around us the whole day. His little buddies here on earth must have heard his gentle whisper in the breeze of the evening, and they all gathered around Barry and sang him the  sweetest Happy Birthday. Barry was left in tears, his heart wide open, a perfect example of the poem he had read at the top of the mountain.

IMG_1353

Across the seas in England, two other walks took place in tandem with our own, at 2pm (one in Regent’s Park, London and the other along the North coast near Whitley Bay) . Thank you for your love and support, Louise, Jenna, Holly, Helen, Graham and all of the family and friends who walked with them. I know many others took a mindful walk in tandem with our own and we thank you for sharing a heart space with us.

Link to Jenna’s DIPG Fundraising webpage that will support the Lylsa Nsouli Foundation.

Link to the radio interview we gave on the John Murray Show on RTE Radio 1

Infinite Blessings to all.

Sat Nam (truth is my identity)

Sheila

Posted in Uncategorized | 1 Comment

Sunday June 21 – For Daddys. Our Heroes.

A father’s day tribute to Barry and to fathers everywhere

I

Oisin with his Daddy. The beginnings of a very special bond.

This is a difficult day for fathers who have had to say goodbye to a child. You go through every father’s day with a pain in the heart.  As a tribute to you all, I bring to you once more the blog post that captured how a father is seen through the eyes of a child……

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…….  How extraordinary that Oisin guided us to the song in that particular moment. All of my boys (great and small) are heroes to me, especially Oisin.”

To my beautiful husband and father, Barry. To my own “great heart” father. To father’s everywhere. You are the heroes for your children. You don’t need to be colossal. All you need is your great heart. May your children always see the heroes that you truly are.   We LOVE you. 

Sheila x

I thank you Oisin again for your guidance in this tribute. The way you always bring to us such wisdom in just a few simple words. It touches my heart deeply, beautiful butterfly boy.

Posted in Uncategorized | 2 Comments

Friday 29 May – Yoga, infinity and the heart

WP_20150424_004

Friends who gave me their hearts x

My friends are going through a lot of suffering lately. I love you all so much and my heart is with you as you go through your own experiences. There is no figuring it out. It is like hitting a brick wall over and over. The only peace we can find is when we let go. When my heart was cracked wide open, it was through the sweet surrender of what just is that I was able to experience the vastness and infinity of what we truly are. Pieces of me have died, and they are opening the doors to living fully. Pain and beauty are in union. Invite it all with an open and pure heart and you will be loved.

yoga borgo

Yoga Borgo

Italy and Yoga

I have recently completed week 1 of Kundalini Yoga Teacher Training . Nestled high up in the hills of Umbria, Yoga Borgo is a centuries old monastic building that was lovingly restored by the Sada Sat Singh and Sada Sat Kaur. The Sada Sats have lived there for 11 years, offering retreats and Kundalini Yoga training.

I flew into Rome where my adventure began. I took a bus, a train, another bus and a lift from Sada Sat Singh. The journey took 12 hours. With no car and knowledge of the local wild animals, there was no way I was going to be coming down form that hill for a week! I met my room mate, a woman and mother living in Mexico. We were instantly friends. The rest of the yogis were similarly wide spread, coming from Bermuda, Slovenia, Latvia, Switzerland and Italy. We were quite the eclectic mix. There were 7 of us in residence and 2 local ladies who came up the hill whenever they could. Our day started early at 5.30 or 6.30 on alternating days. We did yoga practice, Sadhana, up until breakfast and then moved into teaching. Teachings follow the original teaching of Yogi Bhajan, who brought Kundalini yoga to the West. In the teachings we learned more about the purpose of Kundalini Yoga and how it fits in with Yoga more generally. Yoga means Unity. It is the coming together of God and Being. It includes mind, body and spirit. It is not just any one of these. It is a perfect harmony of all three. The main purpose is to come to know our truth, to use the energy within us to raise us to our highest awareness. More than a practice, I learned it was a way of living, and of being in the world. It is a very compassionate way of living. Food was simple, delicious, vegetarian cooking and everyone blessed the food and ate together.

C__Data_Users_DefApps_AppData_INTERNETEXPLORER_Temp_Saved Images_Dog-Mindfulness-195x300

Easy Pose!

WP_20150522_004

Yogis after Sadhana

The first two days of Sadhana were extremely challenging. Sitting in easy pose (legs crossed as demo’ed by the dog) for several hours a day, doing meditations that were sometimes an hour long, holding positions for what seemed like eternity. It was very intense. I have become particularly disliking of stretch pose. When I realised this was how it was going to be for 7 days I wondered what on earth a fragile person like me was really doing there. I wasn’t ready. I missed my family terribly.  I missed Oisin terribly. I was among strangers even though they were all so beautiful and compassionate. I felt very alone with all of this grief. By the third 62 minute meditation, after getting over the shock of having to sit that long,  I found myself surrendering to all that was happening in me. This was like the letting go I described earlier. Sweet surrender. I found some peace. I allowed tears to flow.

WP_20150518_001

The hills from my window

Many times I cried all my aching heart out, just sobbed and sobbed and breathed and breathed. The morning Sadhana was powerful. One morning I was particularly overcome. I found myself sobbing loudly, crying out at the vast, green hills to Oisin, “why did you leave me, why did you leave me.” The Hills had no answer. I was alone with my heart, feeling it break and break. After this experience I seemed to clear out some of this emotion.

Since I returned to Ireland, there has been a shift in me that others have noticed. It is like my energy has changed. I have more clarity. It’s hard to put into words. This form of Yoga, Kundalini Yoga, is a full package deal for how to live a happy, healthy and holy life. Devotion and practice reaps the benefits. I am looking forward to my next week in July. Easy pose and stretch pose are still hard but a little bit less. My diet has changed and we are eating really well with less meat than we have ever had. It’s very hard to work yoga into everyday life as a working mother who is still grieving. But these challenges are just challenges and that’s it. No need to add any more. It’s exactly where I need to be. I am just being a human being!

Grief has shattered me to pieces and yet my heart has never been more open and strong. The light is shining through. I feel a fragment of true peace for the first time. One day  maybe the glass will shatter completely and allow my true self to vibrate to the sound of others and others to the sound of me. I saw how Oisin did this so incredibly. He flows in me always. My teacher and inspiration.

C__Data_Users_DefApps_AppData_INTERNETEXPLORER_Temp_Saved Images_1792c904fbbe91e81ceefdd510d46304

Events

For your info, we are doing a radio interview on RTE radio 1, The John Murray Show on Friday June 26th. We were approached by the show shortly after our newspaper article in the Irish Independent. We will be sharing our story and what we have learned.

Barry was at the last two Anam Cara meetings whilst I stayed back and minded Cilly. The last meeting was a special memorial for all the children we have loved and lost. Anam Cara meet once a month nationwide.

Barry has become interested in mindful walking and will lead a silent mindful walk in Wicklow to mark his birthday on June 28th. We will be gathering at the Kippure Estate at 2pm and leaving to climb up to the megalithic burial tomb on Seefin shortly afterwards. It’s a very beautiful way of connecting with Oisin and with each other, where no words are needed. Just being. If you have an interest in joining us then feel free to get in touch. He posted details through his Facebook page.

Some dear friends who live in England have taken it upon themselves to organise a parallel silent walk at the same time. We a truly humbled and grateful by your drive to do this and to connect with us and with Oisin in this way.

Our friend over the seas, Jenna, will be doing a 150km run for The Lyla Nsouli Foundation, which supports DIPG research. Many many thank yous to you, Jenna. You will make a difference. Donations are through JustGiving.com and I will post details once finalised.

We must set up an events page for these kinds of things.

Sheila

To keep updated on future postings you can click the bottom right tab that says, “+Follow”

Posted in Uncategorized | 8 Comments

Wednesday 29 April – Newspaper article shares our story tomorrow!!

Hi all

Just a quick note to let you know that an article is going to be published about us in the Irish Independent tomorrow (Thursday 30th). It features a lot of this blog, photos, who has supported us and it aims to raise awareness of DIPG.  I am grateful to my long time friend, Rachael Everett, for putting this opportunity our way, sharing our story and helping in our work to raise awareness.

Thanks to everyone who reads this for your support,

Sheila, Barry and Cillian xx

Posted in Uncategorized | 2 Comments

Friday 24th April – Earth, Layers and The Mud Hole

WP_20150405_001

The Mud Hole

Many changes are happening on many levels. I am very slowly getting back into life again. One thing remains constant. This grief. The tears and disbelief at how this could have happened well up in me like a slowly rising volcano from deep within my body. I imagine this grief as a mud hole. I sit in this mud hole as life goes on above me on the “earth level.” I sit there in the sticky darkness, my knees hugged tightly to my chest. I cry for my little boy and I wonder what happened to my world as I knew it up there on “earth level.” I have dropped down to a layer that is both miserable and yet nearer to this amazing energy that is me. That is my life. Barry experiences these changes also. Witnessing the slow and certain death of our beautiful child is bringing about transformation and penetrating our many human layers.

therapy


The Gift of Therapy

Before Oisin’s diagnosis, I was already preparing. I didn’t know it at the time. As a Clinical Psychologist in adult mental health, I was becoming more interested in forms of therapy that compliment the talking therapies. I was looking for ways “in” to trauma and the source of all the pain the body carries. We are like the layers of an onion. Talking gets to some of the layers and how deep we reach depends on how safe a person feels in their relationship with a therapist. Its like infant to mother. An infant will only explore when it has established a secure and loving base with mother. I was beginning to experience the healing work of creative therapies like Art, Drama, Music and movement. Creative expression can bring people out of their head and into their heart, they can help us to access the deeper layers of the self. healing hands

The week I went back to work, I arranged a session with a Kinesiologist, which had been given to me as a gift from my dear friend. I didn’t know too much about it other than it being a form of therapy that works with both body and mind. After a brief initial interview, I found myself lying up on a table with a lady asking my body questions. To my surprise my body seemed to answer! How do I put this kind of experience into words? I sobbed and wailed my way through most of the session. At one point I was in a role play where I was Oisin and the kinesiologist was me. It was a beautiful moment.

download

The 7 Chakras of The Body

I was given another gift, Ira Greenberg, who works with energy in the body. The moment I stepped into his office I felt safe. I felt listened to. Some people have presence. I wonder if it is the ability to provide a heart to heart connection without the ego getting in the way.  In this session I experienced a similar and  deeper kind of state that I experience when I meditate. I talked to him about the image I had of the mud hole and he helped me to use imagery to change it. I dropped through its layers and got nearer to the beautiful light within me. My truth. My core. My entire body was energised and even more specifically I experienced the energy coming from each chakra. I barely knew about chakras before all this, other than them being part of all that “alternative stuff.” My body had gone through something that my head couldn’t put into words.

Monk'

I shared with Ira an experience I had in meditation during one of Oisin’s final days with us. In my mind’s eye I saw a classic looking, brown robed and hooded monk. At first I saw just one monk (my head interpreted it as the grim reaper because there was no visible face) then there was a circle of monks, all standing around Oisin’s bed. I discovered that this was a common experience. Loved ones report seeing beings, angels or past relatives around the dieing. The dieing person often reports seeing them too. We wondered if Oisin was glimpsing into this realm in his final week, because he kept pointing at something in the bedroom. It opened up a conversation where Barry and I spoke with Oisin about this beautiful place that he could go to if he was ready. We told him we would always love him. It was one of the many heart breaking and beautiful moments we shared with him. Oisin seemed to be one step in our world and one step in another in those final days. It is a comfort to feel that Oisin was so prepared and guided towards his own death. He wasn’t alone. He was holding the hands of love. They were all waiting for him to arrive.

Getting Back to Work

I am slowly getting back to work. There has been no pressure. I have the space I need to take my time. If I need to leave, there are no questions asked. It has never been as bad as my first week and I like the different focus that work brings. I am looking forward to slowly starting client work again. Last weekend I took a trip to Dublin to participate in a four day professional training. It was training in a model that primarily works with trauma. I had a strong pull towards doing it after reading the initial blurb. This training came at exactly the right time for me and I am so excited by it. It marries in with all that I was looking for before I left work to be with Oisin. All the ideas I had about needing a therapy that could get people out of their heads and into their body, to really work with trauma without re-traumatising. All of those ideas have been put together by this fearless woman, Lisa Schwartz, and she delivered a training that we also experienced. I found it incredibly healing, I witnessed it in other participants and I know it is going to be of great value to the people with whom I work. Lisa has partnered up with a lovely Glaswegian Psychiatrist who was working on getting the science bit into the work using neuro-biology and imaging. I can’t tell you how exciting it is to have a model that works with the trinity of body, mind and spirit and is boldly stepping its way towards being a “main stream” therapy.

All the therapies I have tried will be detailed in the help and support section of this blog.

anam cara image WP_20150328_002

Anam Cara

We have continued to attend Anam Cara. We have started to make a few more connections with others and we are meeting parents who have had a similar experience to our own. Anam Cara regularly hold events in Barretstown for the whole family. We went along to their Easter family fun day. There was a tree planing ritual that they do to open the day, where a poem is read and each person takes a stone and places it by the tree in honour of the beautiful butterfly children. The sun shone with piercing strength on us as we placed our stones around the tree. It was a moving and tearful moment for me. The rest of the day was very relaxed. Cilly went horse riding, played crazy gold, decorated fairy cakes (and ate them), did some arts and crafts and finished the day with an Easter Egg hunt. He carried the egg basket for his team, a role he too VERY seriously!

WP_20150408_002

Cilly “Grass Hopper” Boy!

Cilly is a bright and shining light that fills my heart with love. Settling into the Grass Hopper room of a local play school has been an opportunity for him to shine as his own bright star and without his usual attachments. There are beautiful green spaces where he can look for rabbits and see the cows in the field. There are woodland areas with fairy doors that the children like to knock at. The carers are all very loving, as are the group of children he is with. He loves “circle time” where he can chat and sing. There is so much he is going to really enjoy about being a “Grass Hopper” in his play school. For now, he is working his way through his fears and sadness at leaving me. For now, I hold a confidence in him that he is going to be one very happy and very wonderful Grass Hopper soon!!

WP_20150404_003Cilly has also been busy meeting up with his cousin and friends. I went to a Kundalini Yoga workshop in Clonakilty whilst Cilly headed off on a plane over to England to visit his cousins, Tom and Teddy. It was Tom’s birthday, which he celebrated with Thomas the Tank engine at the Didcot Railway Museum, Oxford. Cilly’s cousins Joseph and Annie came to visit us over Easter. More Easter egg hunts! Joe really noticed Oisin’s absence from our home. He still has that special connection to him. Pictured below are some visiting friends from over Dublin way.

WP_20150403_001 WP_20150329_002 WP_20150407_001 (1)

Skype with Ram Dass

Ram Dass

Last night we had a skype session with Ram Dass, author of the book Be Here Now and well known Spiritual Teacher in America. Now here is a man, a man who has lived a life, tucking into his eighties and seems to exist as both human and being, traversing the different planes. His big smile, his sense of humour and this warmth that radiated without any strings attached really came through. He was far from some untouchable Guru. He offered answers to our many questions about Oisin. To give you a flavour, I asked Ram Dass if Oisin was enlightenend. After a pause, he told me “no. the next one.” (i.e. his next life). Another pause. Then his big blue eyes stared right at us and this smile lit up across his face, “Pretty good going, hugh! ” followed by a big hearty laugh that spread into our hearts.

Ram Quote

guardian angel bridge

As we go forward

Overall, Barry and I are trusting our intuition more. We have lost a layer of fear that we once had. There are endless times when we miss Oisin and long to have him in our arms. There are as many times and more when we feel blessed by his constant, unconditional, radiating love that is all around us. He really wants us to know he is here with us and his life was a beautiful gift. I am learning to walk my road with my heart and I am learning to trust that my feet know exactly which way to go. When I stumble, I know it’s okay. I have some pretty amazing souls holding me.

WP_20150227_005

Light Ceremony in Cork to remember the loved ones we have lost to cancer

Posted in Uncategorized | Leave a comment