I think I need to start this post by explaining myself a bit. It definitely isn’t a post asking for pity or even necessarily for understanding. In fact if I was to be really honest with myself I cant even tell you why I am writing it except sometimes a glimpse into the life behind piccolo explains more than pretty pictures ever will.
Last week I took a week off social media – Abby changed my passwords so I could not log on (clearly I have no self control) and I told her no matter what to make me last the 7 days. At first I wanted it to be longer but then I remembered that running a business online means I have a duty of accessibility for my customers, even disappearing for 7 days seemed funny although I assure you it was entirely necessary.
Some background …
Last November we received some not so great news about Hannah’s health, we have known for a long time that she was complex but nothing is more confronting than having your greatest fears spoken back at you and confirmed. Having a meeting with multiple doctors is overwhelming, having them put percentages on your child’s life is downright horrendous. Having them acknowledge that, with no other child like her in Australia currently, the very best they can do is guess the outcomes and those guesses could be worst or best case, they don’t know. All this while she is sitting on the floor in front of you tired from a day of physically demanding and invasive testing but still talking, singing and laughing, as she always does. We left Melbourne with the understanding that our next steps are both necessary and dangerous at the same time. That soon we will have no options but to move forward and suffer or celebrate the consequences. They had nothing positive. Not one response we got was tied to optimism, it was and still is the brutal reality of life with a chronically ill child.
And still I kept working. I brushed myself off and got home and got back into orders. It was good to be busy and it was good to be focussing on pretty things. Our family desperately relies on the income I make from Piccolo, it is integral to our daily life. Before Hannah was born it was always assumed I would be the primary earner but of course that has changed drastically. We have had to let go of a lot of things over the years – the nice house, lovely cars, holidays. It pales in comparison to what is truly important of course but it still there and some days, more than others, that hurts too.
And I love my job, never let me confuse that part. I am grateful every day to have this part of my life. I love creating. I love designing and networking and every part of my business. I have met amazing friends, many of whom started off as customers. It is never ever for a second the job that wears me down because in reality this some days is my only escape from reality.
Anyway back to the working. Christmas came and went and I got most of my orders out on time, even managing to raise $400 to buy Christmas presents for families unable to go home due to domestic violence. I had a clear path forward, an exciting outlook for 2017 and a whole lot of repressed feelings that I was desperate to not work through. Why? Because not only are repressed feelings shit to work through they are also a boring and constant part of my life. Rarely do I get an escape and if I do it is usually quickly followed by a quick reminder to not look too far forward.
So working and sewing and sewing and working. Still repressing. Then something happened. And it wasnt a big thing, in fact it was a normal every day thing. I just simply got tired. Tired of pretending this life is fine and I am fine and Hannah is fine and Peter is fine and the kids are fine. Tired of never being able to plan more than a few days ahead or juggling life around multiple medical appointments, each one which usually gives me a long list of things to do and try and fit somewhere into my daily routine. And this coincided with New Years or as I like to call it the month of memes. So far in the past few weeks I have learnt that apparently my life isnt shit, just my attitude to it, that I need to make those plans and take that holiday and go forth and just do it all and be it all. Except I cant. I cant be those things. They are things I want to be and grieve for but this is not the year of me. This is not the year of conquering my dreams and going forth being ridiculously amazing and super hot. This is another year in a chain of long years of trying to keep my child alive and my family whole. A year of trying to be all things to all the people I love even when grief wants me to just hide away from all of it. I dont get to shrug this crap off with a glib remark about my attitude. It is harsh reality and we are never really allowed to talk about it, and even if we could the words just arent ever enough.
So I broke a little. I didnt want to. I know it doesnt serve a purpose but sometimes mums are just really bloody tired and stressed people too. Sometimes one more picture of a happy family enjoying a simple life hurts more than I care to admit and then I hate myself for being so reactive to a situation noone can control. Sometimes the act of explaining all of this is so confusing and awkward it is best if I just stay silent, or at least I feel that way. Chronic illness means this is a whole life, it isnt a shit week or a bad day. It isnt just a thing we have to live with, in lots of ways and for a lot of the time it is our lives. I have spent the last week on hospital watch with Hannah. Daily conversations with doctors, even more crappy medications that will mean a reaction and the need for even more crappy medications. And around that all I have smiled, walked on the beach, gone to a Strikers game, given up carbs and sugar, and lived the life of someone that knows the difference between making a plan or tentatively pencilling something in.
So for a week I logged out of social media. I breathed out. Nothing got easier or harder. Except I didnt have to be more than I was right at that moment no matter how it looked. Will it happen more times this year – most likely. I am by nature a retreater and that doesnt always go well with an online business. I have to be honest and open with you guys enough that you realise it isnt about you. It is only ever about me and my inability to sometimes cope with my perception of everyone else’s normal life.
I hope you can understand this. I hope one day these sorts of blog posts come from a place of happiness and optimism. Right now they come from a place where I am tired. Where I am coping I promise and learning that the way to navigate forward is to accept that sometimes needing to be gentle with myself wins.
That said though, man it was quiet around here this past week! I have missed my notifications and messages and think I will be waking Abby up ridiculously early to reinstate me again!