Posted on December 23, 2014
For as long as I can remember, I have never really allowed myself to need anyone. My childhood, though loving, revolved very much around the emotional state of one person in it – someone that i could rely on for days or weeks at a time, and find myself completely distanced from, through no fault or choice or my own, for just as long in an ensuing period. It taught me very early that I could only rely on myself, that there was no safe port in any storm, only a flimsy life preserver, which required all my own strength to hang onto for dear life.
As a result, I never really trusted anyone. Occasionally I looked on in envy when people seemed to have a “network”, those who upon the slightest hint of a crisis, had people fly in from all directions, with love, support, and practical help. I never got that, but then I didn’t give it either, and I was well aware that you only get back what you give in this life.
Over the years, it wasn’t that I didn’t make any friends, but for the most part they were people that could have wandered out of my life as they wandered in, and left me largely unchanged. Not their fault, mine. I only let people “in” so far, and like I suspect, quite fairly, that most people would have liked a greater investment in the friendship than I was prepared to give.
Then, a funny thing happened. My fourth daughter, born with Down syndrome, arrived in the first term of my 4yo’s kinder experience. Now, this child LOVED kinder. And with a new baby in the special care nursery, and a new specialist to contend with every day in the beginning, I realised that she simply wasn’t going to be able to go every day as kinder drop offs and pick ups often co-incided with times we needed to be with the baby. I barely had time to feel guilty about this when I was approached in the supermarket carpark by another kinder mum, who I only knew briefly, and she asked me if there was anything she could to do help during our time of need. I of course said that was lovely, but we would be fine. Then, she took charge, and said look, what you are going to do is drop Dakota off at my house before you go up to the hospital, and I will give her some lunch before dropping her at kinder in the afternoon, and if you are not finished at the hospital by then, you are to ring me, and I’ll give her dinner too. She then furnished me with her address and phone number and said she’d see me the next day. I literally stood there with my mouth open as she walked away, but instead of chasing her, I realised that to not take her up on her offer would only disadvantage my kinder child, and that would be very selfish of me.
So began my journey of learning that no man, or indeed woman, is an island. The mums at that kinder became my “network”, and though I was still nervous about friendships, I found I very much enjoyed the security of having one. And little by little I learned that I also had plenty that I could give back to people. Over the years that followed, and found four in primary school, there were plenty of ups and downs, and if I wasn’t having one, someone else was…..I became one of those people who found themselves surrounded, enveloped by love in a crisis, and often, I did the surrounding, saving the space around someone in need. It’s been, in both instances, a privilege, and one that I am very grateful that I opened myself up to. The more I have reached out, the more love I have received, and the more I have healed from the the ghosts of past hurts.
And then, of course, came cancer. The network surrounded me like nothing I had ever seen before. Meals, housework, messages of love, and astonishingly, a beautiful friend, who I had met when she cared for my little Georgia in a child care centre, held a fund raising market for our family, which became so enormous that it had to be held at my children’s primary school in order to hold the amount of stallholders, most of them strangers, who wanted to help our family. The day of the market is not one that I will ever forget. I worried so much in the days preceding, that not many people would come to the market, and this gorgeous friend, who had put in an astonishing amount of work, and all those stallholders would have no one to serve. As we approached the roundabout to the school on the morning of the market, I held my breath, and then let it out in a long exhale. There were HUNDREDS of cars, literally hundreds. And the crowd did not let up the whole day. My children were treated like royalty, free rides and food all day, many gifts prepared for them by generous stallholders, they had the BEST day, and I was so grateful of the acknowledgement of how incredibly hard the preceding months had been on THEM.
I was in somewhat precarious health on the day of the market, having just got out of hospital the day before with an infection, and I was on chemotherapy. However, I will always remember it as one of the best, and most overwhelmingly beautiful days of my life. All day, I was swept along in a wave of sheer love. I spoke to as many stallholders as I could, and some of them even burst into tears when I introduced myself and they realised I was the person that they were there for. My own tears were never far behind. And my god, did every single person I knew come to the market that day? I’m sure they did. I know for certain that I spoke to over a hundred people that I actually knew. How had that happened? To that kid that was always looking out for a life raft? There was so much to gain in reaching out, in trusting, in giving and receiving love. There was SO much good in this world.
With Dakota, and Tammy, the lady that organised the market day, one of the most beautiful people you could ever hope to meet.
And some scenes from “Watson’s Market”.
Tonight though, my friends, I find myself nervous. A dear friend, who also has bowel cancer, posted earlier today about receiving a message from a friend saying that she had basically been a pretty bad friend since she had cancer and she needed to pull her socks up. Now, this young lady has had an astonishing amount to contend with in the last 12 months (she was diagnosed the day after me). Close to death on more than one occasion, time in ICU, and a long stretch on chemo which has been extremely unkind to her. To say she has done it tough is an understatement. Yet, someone still saw fit to tell her she needed to try a little harder. Words? Well they absolutely fail me.
And yet, this is far from the first time I have heard this. Friends losing friends over cancer. It seems to be, in fact, extremely common. It’s not happened to me even once…in fact, with this journey now being a very hard 12 months plus long, no one has professed to be sick of me yet. They’ve shared every triumph in my treatment, mourned every bump in the road (and even when a whole fucking tree has fallen over the road), the cards and flowers and gifts and offers of practical help have never slowed down.
I’ve got a very large support network, and I am very grateful for “Team Julia”. I honestly believe that what I get from each and every one of you is part of what keeps me alive. But “compassion fatigue” is very real, and honestly, if you need a break from me, take it. I want every single one of you that were there at the start, to be there at the end. Not the end of my life, but the day I can announce that I have beaten this, very very much against the odds. And I promise then, that I will be there for each of you in your hour of need, just like I hope I was before. Be patient, I’ll be back…and it won’t be long.
Thanks for everything, and I love you (you all know who you are!)
I leave you with a photo of my most treasured possession in the world, my “love quilt”. It arrived on my doorstep a few weeks after my diagnosis, a joint project by my many friends who also have children with Down syndrome. It is covered in photos of my most treasured people, my children and my Gaz, and on the flip side there are patches sewn on with messages of hope, and inspiration, and friendship, from each and every one of the families involved in having it made for me. If these were a book, it’s pages would be well thumbed, as this quilt has come with me to every chemo, every hospital stay, every trip in the funbus, and it lives on, or near my bed at all times, so I can always see it and feel the love that went into it.
It has to be said that the two greatest challenges that life has bought me, being a child born with Down syndrome, and myself being diagnosed with cancer, have also made me realise what an incredibly lucky person I am, really, one of the luckiest, ever, in the world.
One more thing. If you are anything like I “used” to be, and find it hard to reach out…give it a try. The risks can seem great, but the rewards….just be brave – you won’t regret it