Letter to myself as the mother of a newborn

Newborn Zoe

Dear Zoe’s mama, in 2006

I know you know she is a miracle and you love her fiercely. But I know how you struggle every day with mothering. With getting it “right.” When your refluxy baby screams night and day and cannot get the sleep she needs – and you cannot get the sleep you need – you feel like a failure. When listening to her cry feels like the deepest pain, like listening to the little girl inside of yourself cry, and there is precious little you can do to soothe her. Continue reading

The space to write

Notebook and laptop

The physical space I write in is nothing special – usually I just take my laptop into bed or park myself on the sofa, sometimes following the sunny spots around the house like a cat. But the mental space to write in is something else.

If you’re a regular reader, you may notice I’ve written more this year than I have since beginning this blog. Continue reading

Lessons From the Worst Day Of My Life

A beautiful post about grief, inspiration and kindness.

Gretchen Kelly's avatarDrifting Through

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“And I know it aches and your heart it breaks and you can only take so much….  Walk on.” -U2, Walk On

It was my wedding day.

I found myself standing outside the doors to the chapel. My heart was racing. Pressure began building inside and I felt my eyes fill up with tears.

I can’t do this.

Before I could turn and run, the doors were flung open. I was caught off guard as 80 expectant faces turned to look at me. I scanned the crowd….  I saw my family and friends…. I saw my Dad and Stepfather waiting in front of the alter to give me away.

But I was going to have to walk down the aisle alone.

And that’s not how it was supposed to be.

I don’t know how long I paused there. I felt like I couldn’t move.

Then my eyes found Joe. And…

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Happy Valentines day to me

I’ve understood for a long time that one of the interpretations of “love your neighbour as yourself,” is that it’s really hard to project love outwards unless you love and accept yourself first. But understanding it is not the same as feeling it.

The Angel Zoe Kindness Project was inspired by the idea of keeping Zoe’s memory with us by spreading kindness in the world, just as she loved to do. But perhaps the secret in her ability to do this was how she loved herself – a lesson I’m still learning.

Continue reading

Our first update in a long while

I haven’t posted all of our good news since Zoe finished her chemo, partly because we have been getting on with living a ‘normal’ life and partly because I guess I wanted to post something that had some insight and perspective on where we’ve been. That kind of inspiration doesn’t seem to be coming though, so I’m just going to post some pictures that show what a dramatic difference a few months have made to Zoe.

After my last post, Zoe’s post treatment MRI came back clear and we had a lot of celebrations with family and friends. Even though I thought Zoe was coping amazingly, when I told her that Dr Mark said she was all better, she was like a different little girl. She blossomed literally overnight.
In early February she got to remove her own mic-key button from her tummy since she didn’t need tube feeds anymore.
Then before we knew it we were off to the Child Cancer Foundation’s sunshine lodge for a week.
Continue reading

Nearly there


Nearing the end of Zoe’s scheduled treatments, she is back to just over her diagnosis weight, she has grown 4cm, her dimples are back and even her hair, with a couple of two week breaks from one of the chemo drugs, is trying to stage a comeback.


Today we chose and decorated our Christmas tree. The new year will really be a new beginning for us.
For Zoe, I think this will come naturally. For me, it will be hard work to let go of what I need to about the past and hold on to the things of value.
I have the gift of this precious girl and the responsibility to guide her through life and yet she has so much to teach me.
And in the everyday magic of day to day life, Santa must now be on the hunt for a tiger suit.

 

MRI Results : ) we are cautiously elated

Today Zoe had the MRI that has been delayed by some 10 weeks due to problems with the machine. When we got to Starship afterwards to start her long chemo day the consultant told us we probably wouldn’t have the results until after Friday, when they have their review meeting. I told him that the anaethetist was concerned about the level of swelling around her airway and had had to administer dexymethazone (a steroid) and an adrenalin nubuliser and wanted to discuss it with him. I was horrified to look out the door a few minutes later to see two oncology consultants and Zoe’s radiation consultant huddled around a computer screen and incredibly relieved when Zoe’s consultant came in a few minutes later to say they were really happy with the results so far! There are only a few small areas left (1cm across) showing any sign of active disease, and some of what is showing up may be due to radiation effects. For those of you who don’t know the full story, in April the affected area was from her shoulder to the base of her brain, so this seems in the realm of the miraculous.
The reason they had looked at the results early was partly due to the swelling around her airway and throat/chin area. They believe it’s a radiation side effect, causing poor drainage of the lymph nodes in that area which may get better, but unfortunately may be permanent. It’s the cause of Zoe’s snoring getting worse over the past week or so and will be real concern if she gets any cold or infection or it gets worse. That part’s a wait and see game.
In the meantime we can start to think about life after treatment. Mark (Zoe’s consultant) says we can think about taking a holiday about the end of February, just in time for Zoe’s cousin’s third birthday.
This has come at a time when I have been doing some thinking about how we can balance living every day now with the necessity of putting some things off til the end of her treatment. This was prompted by learning of the death of a little girl we spent some time with in the clinic and at the CCF Family House. When we met her, this little girl had spent nine months of the last year living in Ronald MacDonald House and two months in isolation in the transplant unit before being transferred to palliative care. She had only a few very short months left to really live her life. Luckily during this time the Make a Wish Foundation enabled her to have some very happy times.
On the other side of the scales we have seen the example of 12 year old Ruby, who survived a battle with cancer that saw her lose 70% of her liver and undertake a gruelling regime of chemo. Unlike many people who might want to just put this behind them, Ruby is putting her energy into fundraising for Starship. You can see what she’s doing at by clicking here.What an inspiration.
We have a long way to go and we don’t underestimate that the second half could well be as tough as the first, but we are heartened by our good news at this milestone and by the generous and varied support we have had from so many people on our journey.