Heavy

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….”.

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Counting Blessings

7 weeks home; 2 surgeries; 6 whole hospital days plus visits; 9 wound sites; 16 medications; many hours of extra help…but not enough; 1 tired, crazy mamma and infinite trust and patience (mostly) from a 14 year old girl. The numbers are overwhelming but can never tell the whole story (as a maths head it pains me a little to say that!). It is the moments between the numbers that count. (Pun unintended…or was it?)
To say Missy’s orthopaedic surgeon is amazing is both unusual (orthos are not always renowned for their sunny disposition) and an understatement. The work he does on my girl scares me but, even when he changed the consent form moments before I signed, he has the skill, confidence and charm to win us over. He is dedicated and fiercely supportive. He pauses and takes the time to talk with her.
There have been times of pain and grumpiness for Missy…too many. Amongst it though the girl has used her words. She worked so hard to describe how she was feeling and what she needed. Her ability to differentiate between discomfort due to muscle spasms and other pain and then request the specific medication blew me away. She is proud of herself too.
And the difference? She is only just out of plaster so it’s not all apparent yet but what we can see is wow! Imagine trying to sit a plank of wood in a wheelchair. Then, just when you manage to bend enough to get in, it straightens again…that was our girl. Now she sits tall and proud with her bottom all the way back in her chair. And her feet! Her left foot has been transformed from a twisted mess to an actual foot. Dancing is already more comfortable for her which is great because her motivation for all of this was …”I dance”.
The irony of this little post-surgical contemplation and finally having a few minutes to sit and write? The draft was written on the only piece of paper I had with me…the back of a hospital appointment letter. This life! Amongst the challenges and fatigue and heartache there are blessings. And I am glad of a little time and quiet to count them.

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.

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}}

Round and round

This roundabout is dizzying. Every now and then I hop off for a while. But when the time comes to get back on, the memory of previous nausea-inducing rides is strong. The mind hopes “all will be fine” while the stomach churns. Sometimes the fear of being thrown off takes over and panic rises. Today was a sometimes.

The mornings are the worst for me. When the sky is still sleepy my mind wanders to plans for the day ahead. At first a few nervous tears snuck out. Soon breath would not fill my lings. Panic is ugly. The amygdala takes over and the only way through is to talk it down. It will be ok. She will be fine. It will go well. It will be ok; she will be fine; it will go well. All will be ok, she will be fine because it will go well. Breathe.

It is ok. She was super brave…clearly more than me. And it did go well. But, even thirteen years down the track, the ride to get to ok makes me sick. The procedure today was relatively minor. But last time this same ride was too much, too fast and too scary and that is hard to forget. Tomorrow I think we shall share a quiet day.

 

I dance

The girl doesn’t have much control over her life. Many choices, particularly medical ones, have necessitous outcomes. So while she always has things explained to her and has the opportunity for input she can’t always have the final say. I aim to offer her communication book during any appointment. This is both to give her the chance to comment and to remind medicos that her voice is important. At last weeks pre-botox appointment I did just that. My girl grinned as she navigated her book to say her piece. Her words? “I dance.”

Tears welled as I looked at the proud, determined kid before me. Dance classes have become more important to her than I could have anticipated. They are fun…and so much more. She is motivated to make her body work. To open scrunched hands. To lift uncooperative arms. To coordinate moving her legs in her wheelchair as instructed by her teacher. But, clearly, she wants more.

The girl can see that Botox treatment gives her a chance to improve her movement. She recognises that the medicine that will make her arms and legs less stiff can do more than enable her to be dressed more easily or assist with other aims we have for her. It can help her achieve her own goals. It can help her to dance.

 

 

 

 

 

This seems a fitting quote for our determined girl……….

“Life isn’t about waiting for the storm to pass…It’s about learning to dance in the rain.”
Vivian Greene

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.