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.
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??
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.”
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.
Recently I applied for a job. There was quite a gap in my CV employment history…14 years worth. I debated the idea of putting “caring for my child” as an occupation. It certainly consumes my time but is it a job? The idea that I, as a carer, thought this gig was not worthy of being on a resume seems ludicrous. It’s also a very good reason why the theme of Carer’s Week this year was Carers Count.
Carers Week may be a lovely idea but it didn’t change what I had to do that week. I didn’t go to any events. The care always needs to continue. I did manage a coincidental catch up with a lovely bunch of mums of kids with complex needs. My hope is that there was enough media exposure to have people pause and think about what we do. That maybe some call centre workers who, when told my occupation is carer, will refrain from redefining it as “house duties”. Sigh…maybe. I often explain to people that a lot of what I do is parenting. But it is much more than that.
To fill the shoes of unpaid carers with paid workers would cost $60.3 billion in Australia annually. That is over one b i l l i o n dollars a week! A week! It’s any wonder we’re all tired. I imagine you’ve heard it all before but it is a constant slog. There are always calls to make, emails to follow up, extra cleaning to be done….and that’s when she is at school. The prospect of the NDIS gives hope that carers will be able to be more well supported in their roles. Hopefully we will be supported enough to enable some self care…and maybe use our collective and unique skills to work outside of caring.
I didn’t get that particular job but I did gain a different perspective on the value of what I do every day. I have learnt so much. I can multitask like a breast-feeding-fire-twirler-doing-a-load-of-washing. (I’m not sure where that came from either!) I’m a manager. I’m a personal assistant. I fill the roles of disability support worker and therapist. I speak the medical lingo like a pro…I know this for sure because I did a Facebook quiz! So I sat up straight and proud and put “carer” on my resume. Anyone hiring?
The girl has been a bit difficult this week. Hoisting her in and out of bed is a challenge when legs are kicking and her dystonic body is arching. A few support workers have needed to call in the reinforcements (a.k.a. mum) in the last few days. But what happens when the reinforcer needs help? Grumpiness that’s what! And then…heartbreak.
I thought the worst thing was having so much trouble getting her in her wheelchair; that her squirming and pushing until my back hurt was difficult. That was until she told me why. She’s a smart kid. She can be so helpful. She can make her crazy body cooperate. So I asked her why she had been so difficult. (Because) “I’m telling you something I born different”.
I felt the world stop and the tears start. She looked at me like she thought I want her to be different and my heart broke. Her eyes spoke of a body that fights a daily struggle between what she wants to do and what her brain lets her. And all I could do was hug her and sob apologies.
Of course I don’t want her to be different, not for me anyway. For her I would take away the pain and challenges if I could and if she wanted me to. The thing is, this kid is way more accepting of who she is than most people would give her credit for…even her old mum some days. The challenges remain. She is fourteen now…and tall. I am short with a stuffed back. These facts will often butt heads. There is no easy solution. Well she had one. “I have an idea. I am go away to friends house. Have play”.
It was a great idea. A sensible option from the kid. Some time apart to take a breath. But she can’t just go to a friends house. It’s not that simple. (Aside from the fact that no one ever asks her…sigh). Giving her lunch is more complex than making an extra sandwich. Everything is more complex. So I bawled some more, we stayed home and figured out how to feel better together. Wii Dance is good for that.
I’m not sure why I was so staggered by her insight. I should know her better by now. I think it just hurt to hear. Because the grief never goes. And tonight, despite smashing out some moves to “Cake by the Ocean”, I’m feeling the weight of “different”.
Some days hold more weight than others. It hasn’t been a horrible day…but it has been a day.
The thing that can drive me crazy about this gig is the sameness. Exactly the same sameness (can I say that?) that keeps me sane through it’s routine. Today brought change. Not a lightening-flashing-thunder-crashing adjustment but something that will take time to get used to.
My mind is full and my energy drained in equal measure. Hanging around a hospital all day will do that to you even on days of “just appointments”. Yet life still nudges along with dinner to be made and washing done.
Today, though, the grief washed over me. It does that. It snuck up as we finished our hospital to do list and reminded me that our sameness makes us so very different. That the little change I have to accommodate wouldn’t have caused a ripple for someone else. But to me, today, it is another thing to do and think about. Amongst all of the other things…the things that began at that very same but old hospital next door with those diagnostic words….”It looks like she has….”.