Friday, May 27, 2011

Right Where I Am: Three years Two months and Twenty Seven days

still life with circles: Right Where I Am Project: Two Years, Five Months.

I am taking part in the Right Where I Am project that Angie is hosting. Click on the link above to see the stories that others have written.

This is right where I am.

In a moment I can tap into the feelings that bring a prickling sensation to the back of my eyes, and the knowledge that I am about to lose control. I am feeling the pain and helplessness and disconnectedness to my world because I can see myself standing beside an infant crib in the neonatal intensive care unit of a very large hospital for children. My child lies there.

In the second moment I am holding my breath, with tears welling in my eyes I am trying to blink away the confusion of how that happened.

I draw a breath and blow off the disconnectedness and confusion and I feel as though those months of his life were fleeting and so brief. I am disappointed that I didn't do something differently. And I cry tears that make my cheeks wet and my nose run. Who knew that 135 days can flash past so quickly. I approached each day fairly patiently believing that the day was just one of the days that it took for him to get better, so he could come home. I didn't know each day was a day that it took to get to the point where his illness took his life. I was holding onto hope. Why would anyone want to do anything different to that?

And then he died. I am resigned to that part of the experience. It's the one solid place I can stand. He did definitely die and it was definitely 1,183 days ago. He was ready and so were we.

A few minutes later I am focussed on my life today and where I am now. Grief feels like this to me. Sudden and strong with anxiety and then back to calm and rational seeing how far away I am from those moments.

At some stage of this grieving process I feel like I passed from being a girl or woman, to being a person, I feel like I left stuff behind and that makes me feel like there is a possibility that I can be simple and free. I just don't care for superficial small talk. I don't like to talk on the phone anymore. I am much more likely to say no now that I am three years + out. At the beginning I was so desperate to have contact with people who could make me feel better, or feel nothing, or feel something else, that I said yes to stuff that was clearly unhealthy for me. Doing stuff that made me feel stressed was a way of avoiding how I really felt.

My life today is a series of reinventions. After the crisis of Thomas' death I began a search and rescue mission, looking for the pieces I left behind beneath the rocks I hid them under. Now I have collected the pieces that were most resilient and I am working with them. some might say that I am starting with the hardest ones first but I am in am in recovery mode, so I am doing the most important ones.

I am reinventing my career, studying and working with kids with disabilities. Going really well, it has taken some real courage to be able to honestly tell people (who matter) why I am doing it.

I am reinventing my body, losing weight. Going really well, I am down 31kg. And its scaring the shit out of me, I have moments of wanting to be fat all the time and its a battle I sometimes lose.

I am reinventing my relationships and marriage. Well I haven't actually got very far with this one, but my marriage has survived at least.

I didn't even know that I could work in the disability sector, I felt drawn to study so I applied, the whole time I just couldn't imagine how I would behave when I met someone who had Down syndrome. And what if they were called Thomas. How would I do a job in the disability sector if I had to avoid all Thomas' with Down syndrome? And what if they were a child? How could I cope with that?

I am starting to think that its the unfulfilled parent in me that wants to work with kids with disabilities. I never ever had the desire to work with kids before. At first I thought that the unfulfilled parent reason is a bad and unhealthy reason to want to work in this field. But now I think it makes me passionate and committed. I just want to see that anything is possible when it comes to a kid with a disability and workers that will step up to a challenge. In a placement that I am doing at a kindergarten I work with one boy with Autism, the rest of his kinder friends are kids headed towards the mainstream system. It has been my test case scenario, somewhere that I can dip my toe in the water to see if I can do it. It seems I can.

Today I had some amazing feedback. We had a meeting, a Psychologist, Speech Pathologist, the kinder teacher, me the Aide and his Mum. We had an hour of going over all the things that could be done to help this young man move towards school readyness. They acknowledged the things I am doing with this young man and all said that he has progressed because of it, they said it over and over. It's a wonderful place to work, I am loving it. Kids are great people. It's not like being a mum when you work with them.

One of my weightloss goals was to be able to ride a motorbike. This picture shows me having a go. I have had two lessons so far and I haven't damaged any property or fallen off. I look like I am doing it right, don't you think. I don't know if I will go and get my motorbike licence but I am now in a space that I can do that if I choose to. And we have a spare motorbike (now that my husband has bought a bigger one), and I have the gear (so I can go places on the back of his motorbike), I just need the confidence (it is building).

I need to see the big picture not the small scary one that sneaks up to me and tells me that I will never be skinny for any amount of time, I will never be successful, or loved, or whole. I need to see the big picture that tells me that this is just a hump that I will defeat on my way to victory. I can be a healthy body weight and I can be active and I can be successful and I can defeat that sneak who whispers to me "you can't".

That is where I am now, getting more confident, taking charge in some areas of my life, moving toward a career that I have chosen because of Thomas. And grief is still there just as strong, but for shorter periods of time, and I now accept it's arrival because its a familiar feeling now, it is a part of me that I would never wish away. It's proof that I love.


  1. That is a beautiful snapshot of this life. I forget that we are right at the same place, and that idea of reinvention, yes. I feel that too. I think I am finally strong enough to find my legs and my voice and recognize what I am hearing and where I am taking myself. Thank you for participating, as always, my dear friend. xo

  2. Lovely post, Julie. Great to get this glimpse in to your life right now. I think you are absolutely doing the right thing working with children with disabilities. I think your passion and first hand knowledge will be a wonderful asset to everyone you come in to contact with.

  3. It's beautiful that you are working with children who have disabilities. I did it for a while and it was most fulfilling. I am positive Thomas is very proud of his mommy. Thank you for sharing your love for him with us~

  4. This is inspiring reading, good to know it's possible to go on with life, with such enthusiasm, and dedication.
    Your Thomas was a very beautiful baby, that photo up there is adorable. x

  5. As always, I can relate so much to your words Julie... I am drawn towards working in disabilities too. One day...


  6. Such a beautiful photograph of your Thomas as the header of your blog. What a handsome little boy.

    This post is so inspiring, I think that all the reinventions you are undertaking are amazing. It sounds as though you have done some fantastic work with the young man that you mention in this post, it certainly sounds as though you have found your vocation.

    I love the photograph of you on the motorbike, you certainly look like you are doing it right to me!

    And yes that familiar grief that you wouldn't wish away. That makes sense to me. xo

  7. You are a brave woman, Julie. I am still in danger of stealing children with down's syndrome home with me. it is a strange feeling to feel so connected to other families and yet not have my child (or my sister) to show for it. This is a good direction you are travelling in.

    I'm liking the whole getting out there and active thing. Maybe not motorbikes for me. I'm thinking kayak...


  8. The reinvention - there is something in us that dies ... we must find our way out of the ashes.

    And I think you look awesome on that 'cycle!

  9. Hi, Julie - This is the first time I've visited your blog, I think. I'm so sorry you lost your Thomas - he was an absolutely beautiful little boy.

    What you write about reinvention and being in recovery mode made me hopeful. I'm not quite there, but I think I'm approaching it. Motorbikes scare the pants off me, but you look darned good on that one!

  10. Wow! I'll say it again for good!

    This post (and you) are an inspiration. I've sort of lurched through the past 3 years but you've kicked them right in the ass. What an incredible tribute to your son!

  11. Echoing the others: you are amazing. SO inspiring. I'm losing weight too right now, at 3 years 15 days out. I wonder if the third year is often one of reinvention?

    I'm so sorry for the loss of your beautiful Thomas x

  12. I think that death has a way of removing those things which separate us from other people. When you are experiencing the death of a child (and we are all still experiencing this every day), we are not a woman or a man or christian or an atheist. We are all just people. I hope that someday, like you, I can find that path to be just simple and free.
    What a simply beautiful boy your Thomas was.
    Thank you for sharing this.

  13. I love that you have found some strength and peace in working with children with disabilities. That's where my passion is too...and in many ways i find comfort knowing I can play a role and make a difference in the life of a child, especially since I cannot do it for a living baby here on earth yet. Thank you for writing and being a part of this project.

  14. "I approached each day fairly patiently believing that the day was just one of the days that it took for him to get better, so he could come home. I didn't know each day was a day that it took to get to the point where his illness took his life. I was holding onto hope." This brings me back to the hospital and the waiting and the hoping and the just getting through the day.

    Wow! Lots of changes—and it sounds great!

  15. I've headed over from the project. Your Thomas is scrumptious, just beautiful.

    I am in awe of this post. The things you are doing, because of your son, are amazing. I wage an ongoing battle with my weight and my self image - that is some amazing weight loss mama, well done - and you look fantastic on your bike. And your choice of career - wow. I am rethinking my life choices too. I'm not working right now but am considering midwifery, which seems mad since I lost a child in labour, but I can't shake those feeling you describe so well - the unfilled parent part.

    Thank you for sharing your grief and your little boy.

  16. I would be happy to find that someone working with my son was someone who had a child with Down syndrome. I worry about predators/pedophiles and it would relieve me to know why this person had entered the field.