Almost 16 weeks. Almost 4 months.
I started to write this particular post about a month and a half ago. The words wouldn’t come. My brain couldn’t engage. I was going through the motions but not really aware of what I was doing - my brain was very much on auto-pilot and it felt like I was sleep-walking through each day.
Looking back, with hindsight, I think that my closest friends could probably tell that I had checked out. I was there, but I wasn’t fully present.
All of that came crashing in at about the 10 week mark. We were sitting in Hayden’s Patient Ed session on bladder management and the term “this is something you will need to be on top of for the rest of your life” sent my brain into a spiral.
Driving home that night I completely lost it in the car. The realisation that my son does not come out of the hospital “fixed”, that there will be deficits that he will have to overcome for the duration of his life. That he is more at risk of things that would be a blip on the radar for most of us but can be life-threatening conditions for him.
I swore, I cursed, I cried, I raged at the world. This lasted about a week. I couldn’t contain it. Every time I read a supportive comment from my friends, inside I kept thinking “if only they knew how broken I am”. I felt like I was failing Hayden because I wasn’t this strong, stalwart mum that everyone thought I was. I was a fake, a phoney - I was nothing like what I was projecting on the outside - my insides were like a misfiring engine.
My skin was showing my stress. Red, angry and itchy, my face was showing the signs of my mental wear and tear. My gut, which is the main barometer of my anxiety levels, had been playing up for weeks. I was sleeping about 2-3 hours of good sleep a night and then laying awake for hours labouring over things I needed to get done, the what ifs, the whys. I had daily headaches from the lack of sleep and my appetite came and went on a whim. Food gave me no pleasure and was merely a form of fuel. If you know me, you’ll know how very un-Sue like that is.
Everything just seemed to be piling on at once. Where was Hayden going to live when he left the hospital? What modifications will we get? When will the bloody roofer send through his quote so we can get our finance approved? Do I have enough savings to cover the builder’s deposit so we can get the ball rolling? What if they all need big deposits and I can’t get it to all come together in time? What do you mean friable asbestos? Which taps are the best ones? How will we set up access to the back yard? Is this the right thing to be doing? Is this really a good option for the lift? What have I forgotten to do today? Did I send that report for work? When is that evaluation due? What are we having for dinner? What packing needs to be done? When will that fucking roofer send through the fucking quote? And the list goes on and on and on…
I am so thankful for the many people in my life who have been there in big and small ways for our family. To the people who have fed us, given us gift cards for groceries (cos they don’t cook 😊), who have sent flowers, cards, messages and texts, who have organised fundraisers, shared our fundraiser links, supported our friends’ businesses who are fundraising, who have gotten us staff pricing for some of our purchases for our renos, who have sent words of support or simply a hug - you have all touched our lives for the better in the last 16 weeks.
I feel like I’ve turned a corner in the last few weeks and am getting my groove back. Everyone asks what I’m doing for myself. My previous answer was nothing. I was doing nothing for myself and that was not sustainable.
So I’ve started my nightly mindfulness meditations again, trying to get to a dance therapy session more regularly, making to-do lists to keep track of all the balls I’m juggling, and pushing back when people ask more of me than I can give at the moment. I’m also learning to share the load - I’ve always made the assumption that I have to do it all but I have an awesome family around me to help me through the tough times.
My focus is still on Hayden and his recovery, but I’ve stepped back a little to give him a break as well. He knows I’m there whenever he needs me, but the only way he will really get his independence is by me letting him work through some of the challenges and developing his own work arounds. After all, he’s the most resilient person I know and his positivity knows no bounds.
As a family, we’ve got this. And PS we are still waiting for that bloody roof quote.
