Smelly

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.

 

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Planting a seed of hope

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.

HIE, Our Story

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.

 

 

Stress and 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.

 

Lady Luck

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.

Ho, ho ho…Merry Equipment

Funding. There, I said it. The very word can invoke nervous laughter from funding applications past. The NDIS promises a better system but the transition over to it is proving to be a quite a process. Change isn’t easy. But it’s ok, I have a solution. Santa.

Think about it. He has plenty of workers with centuries of experience, He has a fail proof delivery system that always…yes always…delivers on time. There may have to be some adjustments to the only-once-a-year thing but it’s doable. And, possibly the best bit, there would be hardly any paperwork. Simply one letter of wishes politely written with a promise to eat your veggies and tidy your room.

No more would we have to think of five year goals for our severely disabled two year old just to get a wheelchair. No longer shall we impart all but our knicker size with not so much as a coffee date first. No more forms! A carrot might be a nice incentive though…plus some cookies and milk. And painting the darkest picture of your child on their worst day to be deserving? No way. He’s a jolly old fellow. A “Santa please stop here” sign should do the trick. There would be no more wondering how long your teenager can fit in a wheelchair she’s had for four years…Santa would give a delivery date and stick to it. Oh the possibilities. New AFOs with little sleigh bells. A walker lit up with Rudolph style nose. A shower chair as soft as Santa’s hat.

So we’d better watch out, we won’t have to cry, Santa Claus is coming right now! What are you wishing for??

 

Another Day, a Little More Insight

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.