Reflections

Since hitting a pretty big low around Leroy's birthday in March I feel as though some of the darkness has lifted, and I've really been able to feel joy. Fantastical, guilt-free joy. Through a whole series of big and small things, I have found myself at peace with a lot of things. This has made way for feeling extra grateful and happier. Yay!

I should premise this with saying that there have been two things that I have experienced in my life that have altered the way I see myself, others, the world, the past, the future and what is possible. One is The Landmark Forum which I did way back in 2000. I hate to even contemplate how much harder things would have been if we had not done his course. It would have been a very different story and I reckon Peter and I would be basket cases and divorced. The second is an online course I did a few months ago (huge thanks to my very special friend Joey for putting me on to it). It's based on energy profiling, and has made a huge difference to how I relate to myself, Dylan, Leroy and Peter (and everyone else!). So much so that I am more in love with Peter than I have ever been before. 

It's also helped me understand how well Peter and I worked as a team to take care of Leroy and Dylan at home. I can see now how we played to each of our strengths, rather than my interpretation which was that I was weak and hopeless and as Leroy's mother I 'should' have been able to be Leroy's primary carer, rather than Peter. This has been a huge relief.

This was a beautiful moment. I was holding
Leroy very carefully whilst Peter and Dylan
  planted Leroy's special tree. Dylan came
over to me to gently push my hair away
from my face. Precious memories.

Another big revelation is that I have come to a deep knowing that Leroy's essence is within me, in my body and we are never apart. It's taken something to get to this place and I am not even sure how it happened, but it has given me a lot of peace. Leroy began life inside me, grew within me, and finished his last breath lying on my chest, heart to heart. He is with me always.

At the same time, I know that there is still some stuff to deal with.  My body is telling me. I have a frozen shoulder and it’s getting worse rather than better, even after seeing my fabulous shoulder dude (Applied Kinesiologist & Chiropractor) Simon. Simon sorted out my frozen shoulder pretty quickly when it appeared 6 years ago but it seems a bit more complex this time. We think it’s hooked up with grief and anger, that’s my next mission.

This has all been leading up to this past weekend when Peter and I attended a weekend retreat for bereaved parents. It is run by an amazing organisation called Very Special Kids. They provide all kinds of services and support for very special kids and their families. If anyone knows how to create a safe space, it's these guys.

We got back Sunday night, exhausted, and very glad we went. We are so grateful that VSK exists, and that we were able to attend the weekend (huge thanks to my mum for taking care of Dylan).  I have to mention that VSK receive no (or very little) government funding. The whole weekend, (accommodation, food and alcohol, yoga, massages, workshops etc) was provided at no cost to parents. Incredible. There are so many things I got out of the weekend, but I think the biggest thing was getting to hang out with other bereaved parents. I was so so moved hearing about their journey - about their family, their children, their sorrow, courage, inspiration and grief.  It was such a special time, and by being part of it, Peter and I feel that we have been able to let go of a heap of stuff, and we feel that we honoured Leroy and his life in a really beautiful way by being there.

This is a poem I wrote during one of the workshops we did on the weekend.

Leroy

Leroy my love

Leroy my darling

Flying high

Flying free

Full of love

Filled up with love

Love from me

From my womb

From every part of me

All the way up

From your perfect toes

To your gorgeous ears

And beautiful, big blue eyes

You are always with me

We are never apart

Brown Coloured Glasses

I remember the first bereaved parents night Peter and I went to last year.  A couple of parents told us that the second year after their child died was harder than the first. I found this very very hard to hear. I wondered how it could possibly be worse than what I was already feeling. In fact, I made a mental note that "It won't be like that for me, no way". Five months in to the second year I can confirm that it is 'harder'. The realisation that this is our life now, without Leroy, and that there is more healing and working through stuff to come, has hit hard.

It's been an emotion filled week. Yesterday was the UN Day of Happiness, and today is World Down Syndrome Day and Harmony Day in Australia. Today is also equinox. 'Equal amounts of light and darkness on both sides of the planet. A celebration of balance, of that point just before & just after, of the pause at the end of the exhale when we regain our footing on the earth, letting her pull us toward her so we can dance lightly but with exquisite balance' (Oriah). Very fitting I thought, as it is also Leroy's birth day.

All the memories of the last few minutes of Leroy's birth and his first day at the RCH have come flooding back today.  I can't bring myself to think of it as his "birthday".  To indulge in what might have been, and imagine Leroy running around as a healthy, happy 2 year old playing with Dylan and blowing out the candles on his birthday cake is torture - so I don't go there. 

Fun at the strawberry farm

We've had a lovely family day today. Dylan, Peter and I rode our bikes to the local strawberry farm this morning, picked some strawberries, and made it back up the massive hills on Flanagan's Drive without stopping (for Leroy). Dylan was a legend with his little legs pedaling away on the tag-along.

We made a cake in honour of Leroy, made a special dessert with the strawberries we had picked, had a beautiful walk (more like a run, led by Dylan) in the forest and acknowledged what an amazing, beautiful, patient and caring brother Dylan was to Leroy, and what a wonderful son he is.

We also watched a 30 minute video of Leroy, celebrating his life with us.  There have been many, many tears and hugs today, and it has been good to remember all the tenderness, love, care and beautiful family life we were able to give our beautiful Leroy (and ourselves). I have also been thinking a lot about all the amazing love and support we have and continue to receive, and the many incredible contributions that have come our way.  Thank you so, so much.

Peter recording the guitar for our song tonight

A song for Leroy has been brewing in me for a long time. I set myself a goal to write it this week.

This is the first, VERY rough cut of the song, Brown Coloured Glasses.   Not the kind of song I thought I would write, but this is what has come to the surface and it feels good to express myself and honour Leroy in this way.

3 April - new version is here

Nothing is the same

Time to fess up. One of the reasons I have not written for so long, is I that I have had thoughts that go something like, “This blog is soooo self-indulgent and people will be sick of me talking about grief and whinging, especially so long after Leroy has died”.  Funny how I let this get in the way.

The first year anniversary of Leroy’s death was on 19^th October last year, and it was tough, both in the lead up and on the day.  We went to Port Fairy to my mum’s, which was a great move. Being in Port Fairy is always a good thing - we had 3 family holidays there with Leroy and he really loved it there.

We kept it simple, and spent some lovely time remembering and honouring Leroy and his beautiful soul.  We allowed ourselves to feel the deep sadness, loss and grief at his life, his brain injury, and in particular, remembering his last day – finding him not breathing, our last ride in the ambulance, our decision to take Leroy off life support, and the amazing 3+ hours we had with him before he took his last breath laying on my chest. 

It seems the first anniversary of everything Leroy related is the hardest, and now it is behind us.

A lovely friend of mine showed me the photo below and said she thought of me when she saw it. It really struck a chord with me, and helped me see things differently. Rather than seeing myself primarily as weak and vulnerable, I can now see how brave Peter and I have been, and how much we have grown and healed. Not a day goes by when I don't remember and think about the  amazing things people have done for us, and how much we have been supported and loved. Those thoughts, deeds and acts of such open-hearted generosity have not been forgotten. In fact, I am able to remember them more now, as I have more room in my heart and in my head. My deepest thanks to you all.

 When I put Dylan to bed at night, we talk about our favourite part of the day what we are grateful for. A few nights ago I was telling Dylan what I was thankful for, including giving birth to Dylan and Leroy. Dylan replied, saying “But not Leroy Mum, ‘cos he died”. I told him that it didn’t matter that he died, I was very thankful to have had Leroy.  Both my boys are always teaching me and reminding me of things. Yes, I am grateful.

Some things are getting a bit easier. Seeing my friends who had babies around the same time as I had Leroy - seeing their child’s joy, growth and wonderfulness, as well as Dylan's Kinder drop-off/pickup, where I see lots of mums with their newborns, and the other kinder kids with their younger siblings.

Where I am at the moment, is starting to accept that this is the new me, this is the way life is now, and I have less and less control over what is happening in this life of mine.  Life with, and without Leroy was and will never be the same. I’ve been resisting this for a long time, and I find it very tricky, but I am making some head-way. Nothing is the same.