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.

Teen Queen

Recently I came across a quote which resonated. “Disability does not mean inability.” {I can’t recall where I read it and a quick search reveals many people have said it so I give credit to them all!} It applies to our girl in so many ways. She may not speak but communicates in other ways. Her legs don’t carry her around all of the time but her wheels sure do. Little miss may not be able to climb out of the window or swear at me but she is thirteen and a half and is wielding defiance like a sword!

The kid’s expertise at reading body language and facial expressions have helped her to develop epic skills of pushing my buttons! You may wonder how dear reader…let me tell you. It begins first thing in the morning when she has buckets of energy and I don’t. Getting her dressed can be akin to defending myself against a black belt with a wet paper towel. The legs kick {c o n s t a n t l y}, arms flail around and butt lifts off the bed with reps that would make a pilates instructor proud. “She can’t help it…she has cerebral palsy” you may think. Yes she does but she sooo can help it!

The attitude and determination with which she tackles life are a little harder to smile at when aimed at my stomach with full force before I have so much as had a cup of tea. She fools people with her sweet smile and delightful personality…there is a ninja hiding under that beautiful mane of hair. Let’s talk about planking. It may not be such a thing anymore but no one has told the kid. She times it perfectly. As soon as the hoist sling or two people lifting get close to her wheelchair under the impression that she is cooperating…boom. The head flings back…bottom up…legs straight just waiting for a selfie and social media praise for her extraordinary plank. Meanwhile poor helpers desperately encourage/plead/beg/yell at her to BEND. Guess what she does next? She laughs! Yep.

I often finish the morning routine in a sweat of exertion and frustration. A couple of days ago when she sat sweetly in her chair after a Tyson like fight to get pants on I asked her why. “Why do you do that when I know you can cooperate beautifully? Do you enjoy getting mum worked up?” Her answer? One of the most enthusiastic nods I have ever seen. So to anyone who may have thought the teenage years would be a little more cruisy with a kid with CP…umm no. Hormones still run rife and she finds a way to make her mumma crazy {ok, fair call…craz-ier!}. I have a little confession…I am a bit proud, she’s so clever even at my expense. But please don’t tell her. I am sure she has more weapons up her sleeve!

Class of 2016

This is it. The culmination of 7 years…12 years…39 years. I didn’t anticipate when my family moved to this little foothills town 39 years ago that my children would attend the same lovely school as me but they have. And now they won’t.

What began again twelve years ago with her brother was celebrated last week and will finish tomorrow.  Our gorgeous girl is growing up and moving on, just as she should, and she’s excited. Me? I’m sad and nervous and not ready. I have (because it’s all about me 😉 ) been an emotional sop all week. I cried watching kids I didn’t know at the school concert,  am getting mushy over Christmas ads and bawled on graduation day when I bumped my hand. It is a big change but when I say it’s all about me that is just the sadness. The excitement and celebration is all about her.

Missy has conquered this primary school thing. She has had to adapt to a noisier, busier setting every Friday and work in a different way. The girl has friends. She has learnt…and she has taught. Last Thursday she popped on the dress she chose and proudly joined her graduating class…just as she should. (I was the one harbouring wads of tissues!) Tomorrow is her final day. She will have her bear signed and join her friends for final assembly. (I will again be the one with the tissues.)

To you my gorgeous kid….the next stage of life now unfurls itself at your feet. Make the most of every opportunity. Take chances. Shine your light. Be brave. And if you could turn back every now and then to pass me a tissue I’d be ever so grateful.  Go and enjoy. {{sniff}}

Heavy Stuff

Holidays are fun, right? Well they are supposed to be. I enjoy spending time with my children. Really. It’s just…the stuff. That which still needs to be done (These people need food. Every. Single. Day. And the washing. Don’t get me started.). And that which can’t easily be done. That is what is messing with my head today.

Last week the girl was pretty sick but we did manage a couple of afternoon outings once her coughing had settled. I have tried to make fun and take the focus away from a fortnight almost sans help. With success, I think. The issue seems to be that I haven’t learnt from my mistakes. I continue to look at Facebook.

Happy snaps from all over the world greet me daily. Which is great for the snappers. For me, today, it feels heavy. The weight of the stuff we can’t easily do as a family is making me sad. It may sound ridiculous considering we adventured with another wheelchair wielding family on the weekend. How many wheelies can say they bumped along track in a four wheel drive looking for snow?

We have good times. Fun. Joyous times. We push the boundaries of expectations for this special kid. Even then I need to consider phone range and charging equipment and measuring meds and timing feeds and temperature management…you get the picture. {{sigh}} Tomorrow my big girl wants to see a movie and have coffee. So I shall go now, sleep off the heaviness and wake to a smiling girl. Tomorrow I will be ready to enjoy the stuff we can do.

The adventures of Ben and Holly

This morning I sat briefly as I administered medications. Missy was watching television before school. Ben and Holly (of Little Adventures fame) were playing hide and seek. Cute right!

The words came out of my mouth before I realised. “That’s a fun game isn’t it.” Well…she may say it looks fun. But she has never played. Never played Hide and Seek. Sometimes it’s the littlest of things that punches you in the gut.

Change is in the air

The house is so very quiet. It happens every time they head back to school. But this year feels a little different. This year they have both moved up the ladder. The boy is now in VCE with only two years of school left…eeek! And the girl….she is currently enjoying (I hope) her first day of senior school….s e n i o r. Being at two schools with slightly different criteria tomorrow she has her first day of Grade 6…her final year of Primary school. A year of endings and beginnings at the same time.

Many families are tackling the push and pull of change this week. As children begin primary or high school our babies suddenly look like giants . There will be tears and smiles and lots of sighing…and that’s just the parents. If Missy is anything to go by the kids will adjust and embrace their new challenges a little faster than mum and dad. Having said that yesterday my girl was nervous. Her senior campus is on the same site as her old primary but expectations and some of the people will be new.  After a few chats she downgraded her apprehension from “frightened” to “a bit worried”. So is was with trepidation that I put her on the bus this morning. She was wearing a little smile which I hope stayed and grew wider as she saw her friends.

Change is not my thing. So I have been (am) struggling  with newness of this school year. But it is more than that. For a kid like Missy the future after school is less what will she chose to do and more what will she be able to access. Will she be able to access further study if she wishes? Will she be able to engage in meaningful  interaction with her community? Will she be able to work? Who knows. So today is a big step closer to that uncertainty. For now I will try to remain hopeful….and live in the present. To all families heading into new stages this week…all the best of luck. May your children find their feet quickly and may you have a stash of good wine and/or chocolate close by.

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.