I was just making bread and butter pudding. The aroma of vanilla and freshly grated nutmeg brought back happy memories of puddings past. Then my mind jumped. Smell has such memory but it’s not always pleasant. Disinfectant. Alcohol hand wash. Worry. Despair.
The human brain is a strange beast. I was still grating nutmeg as the sounds and sights of the special care nursery filled my thoughts. Monitors beeping…humidicribs lined up…tiny nappies…wires attached to little bodies. So many wires attached to my girls body. I was there. After fifteen years I can still be transported back there in an instant. My breath quickened and chest felt tight.
The person that baby has become is extraordinary. Unexpectedly so, as the future, back then, looked bleak. The person her mother was has…changed. Nutmeg used to just remind me of Christmas.
There is something about taking a moment to be still. To meditate with a coffee (it’s a thing…or maybe I’ll make it a thing!). The warmth of the cup in my hands; the sweet caffeine feeding my addiction; taking time to sit and savour it. Usually it would be an opportunity to relax except I did all of this so my head didn’t explode with a stress induced eruption of frustration and bile.
The disability sector is full of great people…humans living their best lives. Unfortunately, we work within a system that often sucks. (Not eloquent I know but…). Last Thursday had the potential to be wonderful, as every day does. But it wasn’t. Bureaucratic bull won and my girl lost. Not forever…oh no. The fight will continue. It will. But I am weary. The battle is long, constant and draining. The adversary is steadfast and tied to their own rules. Did I mention that I am weary?
The next morning I picked up my weapons prepared to battle again. Instead I paused to called the one person who crossed no mans land for us and thank her. I also voiced frustration at the processes that fell apart and the person I believe dropped the ball. She listened. She agreed it was unacceptable. She worked hard to find a suitable solution. She is not the enemy but an empathetic human working within constraints set by people way above ground level. She still has faith in the scheme she is implementing so I shall try to as well.
I took a couple of days to regroup. The battle plan needed review to head into the next week fully armed but hoping for peace. It seems absurd that an war analogy is so fitting. In an ideal world we would hope our children could access the necessities of life even if we, as parents, were unable to provide them at times. This utopia would see us all looking after each other. Human dignity would be held in high esteem. Our girl has brought many fine people into our lives who aspire to all that is just and good. People who have blessed us with their friendship and generosity. So the battle continues but with the realisation that even the system is not the enemy. It is put in place to aim for fairness and hope for equality. It may not be perfect and the stress of working within in is certainly taking it’s toll but we live in a place of hope.
Today has been about contemplation. As I sat quietly under a completely cloudy night sky I looked up. The clouds had parted in an almost perfect circle revealing exactly two stars. The pointers looked down at me as I gazed up at them. Alpha Centauri shining a little brighter than her partner Beta.
I had a chat with them…as you do. For they perfectly represented my pondering. One a little more showy than the other. Each pointing the way for the other depending on the direction you looked. Both stunningly bright.
The wind picked up and the clouds began to move. From earth the stars themselves looked like they were flying. A tiny shooting star passed behind them both. Then they began to be dimmed by the cloud as one, then the other disappeared from my sight. But they hadn’t gone. Their light still shone just as brightly I simply couldn’t see them anymore. They continued to twinkle in another place.
That is how I think of you both today…shining on just out of our reach.
The rabbit leapt and went straight for her neck. Meredith yelled “You’re supposed to be a vegetarian!” Meredith flung blankets off sweaty and with a racing heart. “What was that?” She spoke to no one in particular because there was no one. He had gone.
Every morning for the first week was a different version of sameness. The rabbit never reappeared but she had wrangled with a bat, been late for a flight and gone to school with no undies on. “Freud would have a ball with this lot.” She muttered to a house plant. Everyone needs a sounding board . Bunnings had supplied hers.
As the full circle of a new Monday approached she decided cleansing was in order. Usually she hated cleaning but shiny windows now made her smile. The bed was stripped and adorned in the floral cover he hated. She sorted paperwork that had been procrastinating in a pile. Incense smoke danced in the breeze of an open window.
The first round of snoozing her alarm the next day came with a realisation. Calm. She squinted into the dark hoping for a memory of the dream that hadn’t rocked her. There was a taxi…or an Uber. She had heaved their tatty suitcase into boot and slammed it with a satisfying thud. His protesting voice came from behind her in the body of the guy from the post office. A tail grew from the base of his spine and dipped between his legs as he slumped into the Ubers back seat. She turned and walked. A bat, cat and rabbit stood clapping their paws. Her waking self smiled with the memory of her dreaming self. She was ok. And he was gone.
April is HIE awareness month. It also holds the anniversary of my first encounter with this thing I could barely pronounce much less understand. Hypoxic Ischemic Encephalopathy. It took a while to learn to spell it and understand it. And even longer to embrace it.
HIE robbed me of the relaxed early parenting experience I surely deserved for number two child. It threw us into a whirlwind of hospitals and appointments, tube feeds and medication. There were so many questions about our girls future, and ours, and very few answers. “She might…. She probably won’t…” My girls’ brain injury was severe, so her prognosis wasn’t flash. But as much as the medical-ese wasn’t measurable, neither was her spirit. Once she began to escape the swelling of her brain her light started to shine. Even so, it was difficult to picture a future for her which was independent of me.
The awareness catch phrase is “Hope for HIE”. It is difficult to reconcile those two terms at times but last week I could. Hope is having a glimpse into the future and it looks bloody fantastic. I used to be scared to look ahead. So scared. Life was doable if I stayed in the moment. HIE has such varied outcomes for kids that the picture of an older child wasn’t necessarily where my child was heading so the unknown possibilities were terrifying. Then a young bloke and his dad lifted my hope to that ethereal place somewhere in the rafters.
I shall refrain from using the “I” word for they are ordinary people like you and I and often the idea of being “an inspiration” weighs heavily. The promise I gained from them was wrapped in their ordinariness. They live life with all of it’s joys and disappointments and the many road blocks along the way. But they kept looking for ways to fulfilment…and still do. The dad is bravely listening to his (big) kid and letting him take the lead. This young man has some mad switching skills along with incredible know how and fierce determination…and a wicked sense of humour. He has made his own career with his dad (and the rest of his family) cheering him along. The key to this young man’s light shining through? Assistive technology.
Obstacles tend to fall in your path if you need wheels to get around…sometimes literally. When you speaking voice is unclear that multiplies enormously. The assumption that having no voice means you have nothing to say, is unfortunately still common. An eye gaze communication device is helping dispel that myth for my girl. Switch access options to things like household appliances and computers are taking that a whole lot further and give more choice and control than ever before. This young bloke and his dad reminded me that good, ordinary people are taking steps forward for us all. And aren’t they fabulous people to walk this path alongside…even from a distance.
The days of people like my child being locked in an institution are in the past (mostly). The time of people assuming she should have no choice in her education and only be suited to a “special” or being kept at home are waning. The day when she can work and play in any setting she chooses with the assumption she is more than competent to do so is coming…I hope. The technology to help her achieve that is here and improving all of the time. I place my hope in my kid. She will be the one to know what she wants and have the grit to get it. I remember what she said about Stephen Hawking in an assignment last year…..”he clever because his disability. It make him think differently.” When I see her life as a straight line with speed humps she will see the wiggles she needs to get around those suckers. Hope is her.
Man I am stressed. I’m talking head-spinning, hand-shaking, high-pitched-hysterical-style-laughter stressed. To add to the fun I was just served a weak coffee that is basically milk! I think they introduced the coffee to the milk from a large distance away. I feel the tears welling even when I pause for breath. (Not because of the coffee, though fair call!) This kid is my sunshine…the stuff around her is my thunder and rain.
At the moment, hours every day and well into the night are dedicated to coordination of her care. The NDIS planning meeting is tomorrow. It is long awaited and now desperately needed yet I feel so anxious and unprepared. So much about the ease of outcome for Missy is due to a person I have never met who needs to “get” the girl and her substantial and complex needs in a matter of hours. A big ask and a huge task to prepare for. (The coffee is improving…maybe I’m just getting used to it).
I hope I have thought of everything. I hope the planner sees the importance of our requests. I hope she understands the complexity of someone like our girl. I hope she sees a kid who wants to live her life well, as she chooses and just wants sufficient support to do just that. I hope she understands that I want and need to be a mum and take a step back from being a carer to save my body and increasingly fragile mind. I hope she hears us.
Hope. Stress. Love. The greatest of these is love. It’s what drives me. Well that and proving people wrong…I love a bit of that action. The meeting tomorrow will probably be emotional and raw. It will definitely be exhausting. Please…please let it be worthwhile. Sigh.
Coffee is done. Not bad in the end. Now to the chemist and supermarket…yes both for her. Even when a respite carer is at home with her I’m still “on”. Still working. This is the last shift for a week as funds are so very low. Please let this new scheme work for our girl…and fast.
I love to write. It’s cathartic and expressive. For me it’s necessary. Yet I often get stuck. I puddle about not knowing what I “should” write. I promised myself this year that I would just do it. Five minutes a day was my realistic goal. I was going great guns…until I wasn’t.
The “additional needs parents” club is an exclusive bunch. Shared experience binds us. One thing many of us share is superstition. When my child’s neuro dares to ask how her seizures are going I whisper and bemoan a modern hospital with no wood to touch. (He kindly offers his head…which I truly hope is not made of wood!). I digress. I was doing it…my 5 minutes a day. Until.
I was writing about the girl. The topic was difficult. Following a light bulb moment while trying to declutter, I was expressing the challenge of letting go of the stuff of a medically fragile child when it may be needed to keep memories…or for a memorial. Tough stuff. Then my phone rang. Her carer. “I think she’s had a seizure.” *#$%! It had been ages. On my race home my desire to write took a huge knock. (She’s fine by the way)
Actually the desire didn’t diminish so much as the anxiety and fear associated with writing wrapped my aspiration in a sticky web of what ifs and this-is-what-you-get-for-doing-something-for-yourself. From meditations to Facebook quizzes the answer keeps jumping at me. You need to write. “Should I go back to work?” Write. “Express your creativity.” Write. “How can I help others and create awareness?” Write. I am disappointed to have broken my promise to myself. In trying to find motivation via Catherine Deveny I came across THE quote. “Commit. Find time. Or just find another excuse. The choice is yours.”* Yep.
When people have said I should write a book I recoil. So many words, and about what? I recently came across a copywriting course which felt like a good fit, until I thought about it too much. But the time is now. So I’m committing again to writing, by writing.
*Use Your Words Catherine Deveny 2016