It is true that we are all enduring the same storm right now, however, I agree with those who say we are NOT all in the same boat.
I feel like this is a reality for ASN parents at all times but even more so now during the current crisis.
I’m not sure what kind of boat we are in, but I can tell you that my boat changes day to day, sometimes minute to minute! It can be a wee tug boat chugging along getting the job done slowly but surely. Other times it’s an out of control speed boat, the steering and breaks have both gone and I’m clinging on for dear life. The next minute we are in a burst dingy and I am simultaneously scooping water out of it, plugging an air leak with my elbow and frantically paddling to shore using just my big toe.
Pre lockdown we had pretty much gotten to a place in life where we had enough crew to get us through our usual storms. School, home carers and we even almost had some respite arranged! Then came the storm of storms. Strategies of routine and certainty went out the window/porthole and we are right back to survival mode with zero crew or back-ups.
As with many ASN families, our highs and lows hinge on our disabled child. If she is good, we are good. Sometimes this means we have to play 184 games of Uno in a row but if it stops the screaming its usually worth the sacrifice.
I have experienced many highs and lows on this ‘ronacoaster’.
My daughter rediscovering her bike and seeing the joy on her face and she freely cycled around the garden at speed, followed by the low of her tipping it over and making a neighbour cry because she was so upset for her. A day spent in the sunshine setting up our tent. Cooking on a fire we built in the garden and playing games as the sun went down with a gin in hand. Swiftly followed by the low of my 6 year old son dropping his white hot chocolate (he hates regular chocolate and this was made from the last sachet) right next to the campfire before he even took a sip. The dog licking it up burning her nose in the process and my husband shouting at my son after sprinting to us because his hot chocolate related screams of despair were like those of a boy who fell into the fire.
My ultimate low point so far (there is every possibility that I will have topped it by the time this goes to print) was around week 3 of a mammoth tantrum my daughter had. To clarify, although she screamed a lot, she didn’t scream for the full 3 weeks but rather was constantly on edge and by the time we reached week 8 of lockdown we were thoroughly being put through our paces. After hours spent listening to wailing, I was taking an hour to myself upstairs while my husband cooked tea. Emotionally she had been like a whirlwind the whole day, we were all just DONE and begging for bedtime. Listening to things escalate downstairs I realised my ‘me time’ wasn’t an option anymore. It had been a poor choice to attempt to cover the grey hairs that had been bugging me. I rinsed as much dye out as I could in 20 seconds under a cold shower, threw a towel on my head and bombed downstairs. I lifted her 36kg body as it flailed around and silently put her in her wheelchair and rolled her in to the car.
Off we drove to nowhere with her still screaming, covered in snot and snarling at me for reasons even she didn’t know. I drove and dripped until I found a layby. I parked, took a deep breath and got into the boot to comfort her. (Don’t worry, it’s a wheelchair accessible vehicle. I didn’t throw her in the boot like a kidnapper!) She calmed a little for moments then went back to rage, biting my exposed shoulder and chewing my cheek as I stroked her hair, cried with her and sang as loudly as I could manage.
When the sobs were soft enough I spoke about how I wished I could help her feel better and that I could see how angry she was because sometimes it helps when I acknowledge her feelings even if I can’t make them go away. We both cried more and said, ‘I love you’. As time passed she started to kiss me gently between sobs and we laughed when she got bogies on my face. She was still crying but it felt less about anger and more about release so we drove on. I was also in the way of a tractor, being driven by a farmer who clearly, by the look on his face, had never seen a half dressed woman in the boot of her car singing with a towel on her head before. We headed home and her sobs slowly turned into stories. By the time we arrived the cloud had lifted. We ate and bed time was blissful.
Luckily for me, I recover fairly quickly from these traumatic events and I have rose tinted memories.
When this is all over, I know I’ll forget or laugh about the hardships we faced. What I will remember will be the months we got to spend together with my husband who has worked away 6 days out of 7 since before the children were born. We have really enjoyed a mid-life retirement period full of evenings together, cooking, laughing, being silly and remembering why we love each other so much. Despite the fact that I ‘breathe too loud’ and he lacks the ability to move a cup once empty.
I will remember relishing in the permission to STOP.
STOP the many hospital appointments,
STOP the activities,
STOP the lists of things needed for school,
STOP work, stop the coffee catch ups,
STOP overloading myself with tasks and jobs because I can physically fit them in my diary.
STOP school meetings and volunteering, stop feeling guilty about not spending enough time at the gym or with friends or feeling guilty about spending too much time doing these things.
STOP the rush that is our lives.
The permission to STOP, breathe and just be at home connecting with our families while we loved them through that scary time back in 2020.
STOP & BREATHE