The Last First

Do you remember lolling about on long summer days as a kid? You felt like they would last forever. And waiting for your birthday was a torturous countdown of weeks, days then hours. Gran, or some other “oldie”, would remind you that life goes by so quickly but it didn’t ever feel like it would. Then. When life was leisurely. Yesterday I blinked and today my son starts year twelve.

He has already turned eighteen which was tricky to get my head around but this feels even bigger. Once he finishes school it will be different…the end of an era. It’s weird isn’t it? My mum brain {or maybe heart} is clinging to a baby who has been grown for many years. The young man in his place is growing more independent just as he should. But…sigh.

I watched him walk to the station on his last first day feeling proud and a bit sad. Living in this family with the girly for his sister is…different. He has had to deal with lots if ups and downs so is a bit more worldly than his age suggests. I think he is growing beautifully. He is a caring friend. He is witty and funny. He is terrific at reaching things on high shelves! And he has a sister who likes nothing better than to gaze at him adoringly. The timer on his childhood has buzzed {l o u d l y} and will continue to emit crazy odd beeps on days such as this but I think he is ready…even if his mum is not.


What I am glad I told a newer mum….and what I wish I had added

Fellow mum, I was pleased to meet you yesterday. You took me back ten years. To early days when I was still reeling from a diagnosis and unsure of what lay ahead. I enjoyed our chat. And I meant what I said…..

You are doing a great job.”

It’s true and important for you to hear. Even (or maybe especially) from someone you just met. Not to mention your child is simply gorgeous and clearly adores you. But there is more. I wish I had told you:

  • Many of us {in the club} have a particular concern for our kid apart from the obvious fear of hospitalisation. For me it was, and is, learning. I am a teacher so I guess that stands to reason. The first time I found the courage to ask about my daughter’s cognitive ability is etched in a frightful memory. The specialists response was grave and uncertain. But my kid learns…and loves it. The worry that sits heaviest in you is more than understandable. I think your child will surprise you too.
  • A diagnosis is most helpful when filling out forms {heads up…there will be many more forms!} and that’s about it. Trust yourself and those in your medical and therapy posse who have earned you respect. And keep asking other parents. Their experience is gold.
  • I am still smiling thinking of the way you described your kids together. They are lucky to have each other…and you. Siblings have a tricky road and you are paving it well.
  • Google describes “normal” as conforming to a standard; usual, typical or expected. I say every family has their own definition and you are rocking yours.
  • It is still early days for you. I distinctly remember waking up one day when Missy was about 3 years old thinking “Ok. So this is us now…let’s do it.”  It really was an overnight change in my headspace that made all the difference to tackling whatever came our way including expecting the unexpected. Patience is indeed a difficult lesson but it will be rewarded.

The most helpful pearl a stranger passed on to me was as simple as it was magnificent. “Enjoy your baby.” I think you already have that one covered.


Today the man-child put a dream in an envelope. I sent it with the hope that he gets what he deserves. There was much encouragement to apply. And some advice about tricky questions. But only because he doesn’t see his life the way I do. His life is just his life…and his sister just his sister. But, the truth is, he is a young carer.

“I don’t do much” was his line. But his mates don’t rise early in the holidays to help get their sister out of bed. They probably don’t fetch, tote and carry as much as he does. Nor would they have such intimate knowledge of the medical field. The average sixteen year old doesn’t have to time a seizure, watch the ambulance leave and wonder what will happen next. And I’m pretty sure most aren’t subjected to endless hours of Playschool by a twelve year old…with a smile.

He adores his sister and accepts his life well. Carers Victoria recognise that young carers often miss out…on time, on activities, on special treats. So they, along with Rotary, have implemented a scholarship. A little something just for them. For education or recreation purposes that the young person would really like but not ordinarily manage given their circumstances. So, I hope my boy gets what he wants. But mostly, I would like him to be successful in order to be recognised…and to see in himself what I see.

The Big Boy

The man-child is growing up. As I write, he is in the midst of a pre-driver training course. I can picture him lapping it up…so to speak. The oft forgotten, or at least somewhat overlooked, “Y chromosome in da house” is a delight to watch. It is still easy to regret the passing of time but, mostly, I revel in the grown-up he is becoming.

Over the last few weeks he has turned sixteen, studied for and passed his driving learners test, got his first facial piercing and started to look at buying his first car. This is big stuff people! I tend to be one for stress in anticipation. True to form, the approach to sixteen has been rocky…for me, not him. But, now that we are here, it’s all good. Fabulous in fact. Don’t get me wrong. We still have teenage “issues”…a bomb is required to wake him before noon and the hair is washed on a “mum’s nagging is now too loud to ignore” basis. Minor really.

During these holidays he has regularly stumbled out of his bed to help lift his sister from hers {then stumble back!}. She gazes at him in adoration – especially since the piercing! He’s a good kid…teenager…man-child…person. He’s an ace person.

The awful truth of hanging about in the severe disability/high medical needs world is…kids die. They shouldn’t, they really shouldn’t, but they do. So I try, on the days when I can, to enjoy watching my kids grow up…exactly as they should be. Today is one of those days.

………For Miss P, Miss C, Miss A, Master T, Master E and all of the other angels…….

The red-headed Ninja

Donuts on the concrete near the garage. Spinning back in the opposite direction so she doesn’t get dizzy. Because that is what a brother does with a sister in wheels. I wander off to check the letterbox, smiling. As I return she sits at the end of the path with a grin on her face. I notice the garage door is closing. He must have let her have a turn of the button, I think, how sweet. Then I hear it. “Muuuum!” What had I done? The boy is yelling from inside the garage so I check my pockets for the remote as I have  often inadvertently pressed it. I don’t have it. She has it. The grinning girl.

Then I remember giving it to her to look after. She so loves to help. Apparently her brother was putting the ramp on our car up and about close the back door when red-headed-ninja struck. He had to kick the garage door to stop it squashing the car. And there she sat. The girl with such limited fine motor skills that she cannot independently draw or play with her doll or hold puzzle pieces had managed to press a small button on a garage remote all by herself…and wasn’t she so pleased about it. She had done something funny and was thrilled! As her brother and I approached calling her a monkey she laughed proudly and we both joined in. Simple, precious fun.

There’s a Y chromosome in da house.

A boy lives here too. With all the talk of her, you may not know that or have forgotten. I don’t forget, although I’m not sure he always sees it that way. The path of a sibling is a winding one full of obstacles, sign posts pointing in weird directions and piles of challenges obscuring the view. Too often I feel like I wave him straight ahead as I shout “just stick to the path while I {{insert assorted caring and/or medical procedures here}} with her. But this kid is mostly happy to grab the back of his sisters’ wheelchair and push her on through the potholes. Not around them mind you….straight through to make her giggle.

He wasn’t always so comfortable. People stare you see. As a teenager the mortal enemy is someone taking unwanted notice of you so being gawked at by association is not cool. Strangers stopping, turning and scrutinising his sister because she happens to have wheels makes him angry and rightly so. There doesn’t seem to be an answer yet Kamahl. “Why ARE people so unkind?” The unkind public haven’t changed much(yet…it’s a work in progress) but the boy has. He has taken time and growth and the sum of his own experiences to care less what others think and stick even closer to his sister. Last year it was his turn…not that I advocate sharing in this case.  A week in hospital. Countless tests and tubes. Scary surgery. As we stood at the lift to leave the hospital he didn’t bemoan the horrible experience (which would have been quite understandable) but told me how much he had learned. Wow. And the lessons have stayed with him.

The girl has a new recreational chair which, much to her amusement, he has used a few times. Picture this: she in her wheelchair, over six foot of him folded into her other chair, side by side, her hand reaching for his, both happily watching her favourite show. Priceless. The next day a level crossing would have been handy in the kitchen as a wheelchair train came chugging (or is that giggling) on through. Visiting the park on the school holidays…she in her large new wheelchair and he pushing in a tail-wagging, green, dinosaur onesie! I have no idea who they were staring at that day. Small moments of play that may not come naturally in siblings with such differing abilities. It helps that she thinks the sun rises and sets in him and that the giant man-child had a kind and sympathetic heart. Our night time routine would not be complete without his visit to her room to say goodnight. She may not speak but they share knowing glances about the crazy mother they both have to endure.

The boy is considered, as a sibling, a young carer. He is exposed to increased levels of stress and has a clearer understanding of  medical terminology than most adults. He witnesses the unfair divide between those who can and those who cannot. But he sees great joy and humour in his journey too. His experience of the human condition is laced with understanding, empathy and acceptance. He drives a wheelchair like Speedy Gonzales and she loves him for it. To her he’s just a brother and that is ace.