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.

Mum’s the word

Tomorrow is Mother’s Day here in Australia. It is supposed to be a day of flowers and chocolates…hand made cards and mushy cuddles. A day to celebrate and show appreciation (or a bah humbug day for some 😉 ). But, as with other occasions, it can also emphasise what is missing. Many will mourn their children, their mothers or motherhood that could not be. For many it will be just another day. There is no leave from parenting tiny people and kids with additional needs.

So tomorrow go gently. Embrace the love around you. And I hope you have reason to smile.

 

 

 

Grin and we might be able to bear it!

Accessibility is important in literally being able to get to school. But it isn’t everything. Access can be tweaked and small steps ramped if the school is willing. That is the key…being willing and accepting of a kid who does things a little differently. Last week we went on a somewhat scary tour of a mainstream high school. We listened to the principal and saw the facilities. We appreciated the ramps but were most impressed by the smiles. Smiles from teenaged students!

I now live with two teenagers and know they sometimes get a bad rap but they are not known for their cheerfulness. And the sunny looks happened not once but several times! In a world where my girl still has people stop in their tracks and stare, I was pleasantly stunned. As we had arrived the reality of transitioning to a whole new school hit hard. I was tempted to get back in the car before even trying. I know my girl so well but it takes a lot of time to teach all of her intricacies to others. And secondary schools can be prickly places for the most confident and able kid.

To succeed at school one needs to be able to communicate. Learning how missy talks takes some time and effort. And, of course, recognising a smart, funny person with a lot to say. Seeing a young  lady not just a wheelchair. In class time much of this will be the responsibility of an aide. But peers are so important to time at school. And these students filled me with hope.  For me, last week (and often) it all begins with a smile.

HIE…an anniversary

The “Hope for HIE” foundation has April 20th marked as a legacy…for children gone too soon. Have you heard of HIE? I hadn’t until…..I heard it from a neonatologist…in a small room…at The Royal Children’s Hospital…with a young nurse holding my hand. It is our girl’s diagnosis. Hypoxic Ischemic Encephalopathy.  (This is why it has an acronym…so hard to spell!)

In a strange coincidence today is also the anniversary of our foray into this new world. It’s the girls birthday. The day is always a bit tricky….for me not her, as usual. I celebrate her life and her excitement and I grieve and contemplate “what ifs” and have scary moments, pictures and conversations pop into my head. It has been quite the rollercoaster and that is typical of HIE.

She is exactly who she is supposed to be. I firmly believe that. (Yes…there IS a but!) But…..if I could take away her pain and help her do more of what she wants to do then I would. So I can’t help thinking…why didn’t the medical team cool her? How did they not see what I plainly see now with my untrained eye? This pointless pin ball game of “what ifs” is ricocheting around in my head.

But I want today to be joyful. I want to be grateful so I shall shake this off….to Taylor Swift if I must! This extraordinary kid has brought so much to so many. She attracts amazing people to us. She teaches every day. She makes me laugh and cry and be silly and dance. She exudes love from every pore. And today she has moved into teenager-hood…..today she is 13! Crazy right!

Considering her early prognosis this alone is incredible. So today I think we can both celebrate our Missy Moo and honour little ones with HIE who grew their angel wings by looking for joy. Join in. Look for Autumn (or Spring) colour. See that bird flying past. Smile at a young person helping out. Marvel at a toddlers chatter. Breathe in fresh air. Take a photo. Surprise a friend. Share a coffee.  Search out the joy…or make it…and tell me what you find. For in all of the craziness of a HIE diagnosis and the challenges it brings these little things really are what matters most. To my gorgeous teenager who reminds me of this….happy 13th birthday kiddo. Love you buckets.

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.