I because Cerebral Palsy

On Sunday missy and I met a curious little dude at the market. His mum gently suggested he say hi. He was quite shy so my girl used her communication book to ask his name and tell him hers. He asked his mum why she’s in a wheelchair. The lovely mum began to explain but she wanted to use her book again. It was the first time I have ever seen her explain her own diagnosis….my voice may have wavered as I said the words on her behalf…”I because cerebral palsy.” The mum (who I now have a mummy crush on) took the opportunity to relate missy’s words to the para-olympics they had been watching at home. Meanwhile his baby brother and my baby-adoring girl made eyes and had a little chat.

 I had seen the little man looking and took a sharp breath in expecting past experiences….but his mum turned it around naturally and gently. She made it ok for him to ask questions and answered them all. She encouraged him to interact and check out missy’s communication book but didn’t insist. Parents often look awkward when their kids stare and I get that. It is not always easy to know what to do and is a rare thing for a parent to ace it like this lovely mum did. A simple smile would have sufficed but this chat was so much more.

It reminded me of another occasion. A time when a child looked at and spoke about mine. It was so very different. I was shocked by what came From his mouth . There have been numerous occasions in between. Pointing. Staring. Swivel-on-the-spot-mouth-gaping. And a gorgeous girl who simply wanted to tell missy they had the same dolly. On Sunday we met a mum who made it normal for her son to be curious. And my girl….she shone. She took the opportunity to speak for herself, about herself.  At what the girl calls “country market” we were reminded that there are good people out there…really good ones. And for that we are grateful.

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Help?!?

I scared myself last week…like really scared…at 3am, the time for all sensible thinking! I had endured a day of back pain that came out of nowhere (not exactly true but I hadn’t done anything stupid) and packed a punch. Bed brought little relief with stabs in every wiggle or turn. In the end I rose to walk the house hoping for ease…then returned to attempt to sleep. One change of position and the pain stopped….stopped. All I could think was how could I push a wheelchair from a wheelchair. I had to get back up and walk to reassure myself that I could. I have never been so close to calling an ambulance…for me.

So began a very challenging week. The pain was barely manageable and the restricted movement meant I couldn’t do my job. No dressing, hoisting, changing, caring for my girl. No driving. I have really struggled with it…still do. It’s great to be the independent type…except when it’s not. I have had to ask for and accept help. Hard. Don’t get me wrong I am overwhelmingly appreciative of all of the help I have received. Dinners, many support workers shifts, coffee, lifts to appointments, drivers to pick up my girl, drop offs and pick ups for my boy, cleaning….truly amazing. But I still think I should always be able to do all of that myself.

The thing I have been mulling over (as I sit and sit some more) about the human condition is there is hard stuff and associated fears. Hopefully not constantly but it’s around. I have been contemplating how I can now make this challenging experience part of my story without it defining me. I have always had a “funny back”. (Language was of importance in my family as a kid so even with a congenital deformity I was discouraged away from the term “bad back” as “everyone has one of those”.) The physical strain of caring for a child with high needs is great. I still don’t want to be the carer with the bad back but I can’t ignore it and I realise I am different due to my recent experience. Not necessarily in a good or bad way but different. Lately I have been admiring a friend for the way she is incorporating her challenges into her own story. She may or may not agree with me, and I know it hasn’t been easy but she seems to be striking the balance well. The experience doesn’t define her but she acknowledges the way she has changed…and grown. I also recognise that for others melding a difficult time into their story is very distressing.

For me, at the moment, I think I am getting there. Changing my perception of this difficult time has made an enormous amount of difference. I still have pain today, much more so than yesterday and that will ebb and flow. There is still fear a horrible flare will recur and still fear that I won’t be able to do everything a want to do as a parent and a carer and as a person. That I won’t be able to look after myself much less my family. But I have managed to get my head in a different space to make it ok. It’s part of me, part of my story. It is a work in progress mind you…there is still editing to be done.

One of the things I admire about my daughter is that she seems to do that seamlessly. Well she seems to because I don’t really know how much of a challenge it is in her head. But there is something about her that enables this kid to incorporate difficult experiences into her story without letting them define her and without caring about other peoples perceptions. She just does her thing…and that’s pretty cool. That’s my aim…to manage the pain and fear as she does. But don’t expect superwoman. There will still be tears and swearing and whingeing to whoever will listen cos man it hurts.

Success

I watched a TED talk today. An eloquent, thought provoking woman, who happens to have a muscle wasting disease, spoke of her desire for a change in language. You see she reflected on parents-to-be hoping for neither a girl nor a boy but a healthy baby. She spoke of feeling like it was a kick in the pants to realise that she was that unhealthy baby that nobody wishes for. I too hear a “healthy baby” wish  and have a sudden intake of breath. Don’t get me wrong I wish my child didn’t have to endure the pain that she does but I do think she’s exactly the way she is supposed to be. I understand that no parent wants to look down the barrel of grief and pain and loss and endless appointments. I do. But it’s hard to hear folks saying that they don’t want the baby that I’ve got. Because she’s not healthy. This gorgeous woman had an idea. Lets replace that word with a different one. “I want a happy baby. A happy child.” How cool would that be?

So I started thinking about language, hopes and dreams for my children and how I judge their “success”.   When Missy was only 2 years old I really had to stop and completely rethink my own measures of success. I had travelled overseas, could play a musical instrument, had a job, had bought and driven a car, got married and I had a University degree. They were some of my measures of accomplishment at the time.  Then I had to request equipment funding (there was my first shock…kids with additional needs did NOT just get what they needed!)  I had to fill out a form for a corporate type charitable body that was looking to set goals and then be able to measure the outcome, that was how they were distributing their funding. So I had to figure out what future goals I had for my 24 mionth old. Average kids, developmentally “normal” kids or whatever term you want to use…most kids…Ill say most kids, by 2 years, would be playing with simple toys, walking, speaking and eating family food. A year and a half ago they would have been looking at friends and family and engaging. I had a child who was just getting to that goal…who was only just looking when you spoke to her.

The short term goals we had for her were being able to tolerate the standing frame to stretch her muscles and quite frankly just getting her to Early Intervention over a 20 minute drive without her screaming until she vomited was a goal. Sleeping was a great goal for her AND me. But these weren’t the sort of goal this form was looking for. They were looking for longer term goals.The realisation that I had a child who would not, in all probability, achieve the measures of success that I has set for myself was shattering. And it took a lot of hard thinking to figure out and change my thoughts about success. So I started thinking “in what other ways am I successful and in what way do I want my child to be successful? And my 6 year old…what goals do I have for him?” I realised it hadn’t been a conscious thought. I was hoping I ensured he was happy and healthy every day in small ways…you know, fed, bathed, clean clothed, books shared, Lego creations admired, parks walked, balanced him on a tricycle. But I hadn’t thought of what a successful life would look like for either of my children longer term. And here was a piece of paper confronting me with questions for which I didn’t have answers.

Even the small things my son had achieved were out of the grasp of my little girl.
Different people have different goals. So what would you consider an aim for your child? To be wealthy or to be rich with friendship? To be in a position of authority or to be part of a community? And does it have to be a choice? Are these pairs mutually exclusive or can they co-exist? Now, as it was back then, there are a lot of questions unanswered. Because there is no clear answer. Not one right path for us all…for what a boring world that would be. Different goals suit different people at different times…and even these goal posts shift (pardon the pun).
So, what did I write those 8 years ago? I found the forms. Apart from an extensive list of family and medical background the first question was “How would funding from the —- Foundation improve the quality of life for the intended recipient?”. With a little therapist input my answer was…*It would assist coordination/muscle control. *Help train her toward communication devices. *Introduce learning *HAVE FUN the way her brother can!  Pretty straight forward. Then came the tricky question…the source of  headache and reassessment. “What are the goals and future objectives of the intended recipient?” Deep breath. I have to confess to being teary when I read the answers. Silly I know…my own words…but I had written my musings about success before I looked at my nearly decade old thoughts and was pleased. This is what I wanted for my girl then…and what I still want.

To communicate her wishes and express herself.

To gain some independence.

To interact and play with our family.

To feel success.

To be active and mobile.

To participate in her community.

To know how much she is loved and be happy.

And there it is. To know she is loved. A happy baby, a happy child. That is success. It’s something that we all wish to have in common. And it’s what she has. She is loved and loves. ..she is happy. They both are. No time for pats on the back here though. There is washing to do.

 

 

 

To see the inspiring Karni Liddell talk, click away.

http://www.mamamia.com.au/health-wellbeing/karni-liddell-ted-talk/

The Legacy

There are people, extraordinary people, that leave quite an impression in their wake. Not the gung-ho “look at me I’m fabulous” kind, that may well be fabulous but we all hear about it. No, I mean the ones who quietly change the way we think and live. Those who snaffle a piece of out hearts with just a look.  There is one such treasure who is always in my heart and often on my mind. She sends her lessons from afar now ….but I still get them.

Today I thought of her as Missy stood proudly in her walker, still in two purple casts, ready to stretch her legs. My intention was for her to wear braces and just stand. Hers was to take a few steps…in two heavy casts. As I marvelled at her tenacity I wondered where she gets her strength. The girl often chats with friends who are no longer with us (in the traditional sense). I am sure she has her own inner reserves of determination (she does have red hair you know) and I hope she knows how well she is supported but I also think she does the hard stuff for her friends who no longer can. For such a young kid, and one with big obstacles in her way, she has a great sense of appreciation for what she has and what she can do. Her friends have taught her that.

My lesson is also one of appreciation. On this occasion a joyful one. I stopped and revelled in that moment. More commonly I draw on her message in difficult times. The hoist drives me crazy.  I am sick of (insert any one of: doing so much washing, cleaning vomit off the carpet, measuring so many meds, charging suction, pump, communication device…blah blah). I don’t like hospitals.  Missy is growing up and getting heavier, exactly as she should be. And I know that, as hard as it can be, I will do whatever I have to for as long as it needs to be done. I ache today for my friends who wish they were still doing the hard stuff…. because not doing it is the hardest of all. Their girl has left her quiet impression and still teaches her lessons in the sparkle of a star. Winnie the Pooh is indeed  a wise old bear. My hope is that his words ring true today….. “If ever there is tomorrow when we’re not together…there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we are apart…I’ll always be with you.” A. A. Milne

Always remembered

A different view

Perspective. View from askew. A difficult day can be transformed by looking at the world through someone else’s eyes. Magically this lesson was delivered to me by one who doesn’t know of perspective…in the traditional sense. Neither the message nor the teacher were traditional today.

It is my privilege to spend time with my girl’s friends and have many opportunities for such lessons. Today was special…and timely. Such a simple scene. A bunch of students hanging out at lunch time. Sitting in the sun. Two on a wooden bench. Four in their wheelchairs. Three feeding pumps alarming intermittently. Five primary kids and one senior student. Is it a maths lesson you ask? No. It is one of humanity and joy.

The big kid was relishing her role as mentor. Her voice sing-songed through a story of poltergeists with a  young audience hanging on every word. She politely introduced herself to me and resumed her tale. What transfixed me and filled me with admiration? She was reading with her fingers.

Every child in that scene faces challenges on a daily basis that would make many adults’ toes curl but is was so…natural. They were sitting, reading, listening. As I watched, the challenges of my morning drifted away into the air  with this gorgeous girls’ words. For I was witnessing kids who can and do every day, where some may only see cannot.