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.
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
To the lady in the car park at K Mart today.
I have had a tough few days. Pain will do that. Today I needed to do a couple of things with the girl before school goes back. My big boy has been driving me over the last couple of days but he had important big boy stuff on. So missy and I ventured to K Mart. Slowly and steadily I got her out of the car. She carried my hand bag and the shopping so I simply had to push and walk. Until it was time to get back in the car.
I was so pleased at carefully placing the straps and that’s where my satisfaction ended. I pushed, she didn’t move. My foot nudged a back wheel a little up the ramp but that was it. The closest disabled park on a flatter surface was occupied by someone without a permit so I was left trying to push 100kg of wheelchair and kid up an incline that my back simply couldn’t manage.
My kid requires more hands on care than the average 14 year old. I was born with congenital spinal deformity that is now delightfully arthritic. Mostly we simply get on with life but sometimes the combination creates havoc. You didn’t know any of that. But you saw us. As you parked your car you saw a mum struggling to get her kid in the car. I’m not sure what prompted me to look your way. You could see my pain and frustration and uttered those few words…”Do you need help?” Usually I would say no but I didn’t. I couldn’t.
I could have hugged you as you approached the back of our car with willing hands and an incredulous “I can’t believe no one stopped to help you”. A quick question and you had her up the ramp and in the car. You needed to get back to your own children so I’m not sure you realised just how grateful I am. As I sat back in the drivers seat tears fell. Frustration and pain were overtaken by your overwhelming kindness. Thank you for being the person who didn’t just look but actually saw us.
I have a confession to make. When our girl was born I did not know cerebral palsy. I had heard of it, sure, but was oblivious to what it meant for her…and for us. I didn’t know what it looked like. Yes, that’s where I was at in my post birth, crazy grieving state. I wanted to know what cerebral palsy looked like.
So I asked. The only person with knowledge I could trust with such a question. My lifelong friend (who is an OT) said…well I can’t remember her exact words anymore. A lot of that time is hazy. She did reassure me. The feeling I remember from that conversation is that my girl will look like herself. That CP has no discernible features and even if it did that we will be ok. Looking back I am astounded by my lack of knowledge. But I use this experience now. If anyone asks an apologetic question about Missy I’m able to truthfully say that I too didn’t know this, once.
Now I reckon I could see signs of CP in a baby before a doctor (exactly as one experienced mumma once saw in my girl)…not because there is a “look”, but there are signs. Now I celebrate the lessons and people this kid has brought to us. So, on International Day of People with a Disability it’s not simply about generating awareness for me but a celebration of some of who our gorgeous girl is. She is a kid first…a friend…a thinker…a sister…a joker…a daughter and a kid with CP.
In her words of reflection back on World CP Day….. “Am thinking I have an idea. The universe chose me to be different. I answer, I feel (the) same. I understand. I want to do what the others are doing thank you. I’m ready. You need my cerebral palsy to help you world. Think; come alive; give love; be better friend; be you. (I) can be proud.”
So very proud, kid.
I am now the parent of an adult. Well I have been for a while but when said adult was still at school I could dance to the tune of denial. Now, the music has stopped. He has finished exams and I am left with dancing legs twitching wondering what now?
The boy/man is doing exactly what he is supposed to. Growing and learning to become increasingly independent. As a parent it’s a challenge to keep a little bridge over that independence. The clingy mamma in me would still like to have a firmer grip!
It’s tricky to take a step back for the hard stuff. He takes a more relaxed approach to exams than I do so watching from the sidelines has been frustrating…for both of us. I rescinded on my “no nagging” deal this year and have squeezed much poking, prodding, reminding and encouraging (read…”why can’t you just do it my way” 😉 ) in the last month. The replies of “uh huh” and “I know” and the like had me burst forth with “but I have wisdom” (for full effect read this in the voice of Tania from Muriel’s Wedding…I’m beautiful”!! )
The “wisdom” I think I have is trying to take half a step back. He has to do this his way (I guess). So I fed him all the brain food (Eggs, blueberries, bananas and walnuts oh my…not together!), wished lots of luck for exams and let him be him. He’s the only person who can and he’s doing a fine job of it. The big world awaits my boy…go embrace it.