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needs: Late January, the term calendar and the whole shebang.

As January unfolds, I wrestle between relax and ready. And then, or finally, it comes. Early, early in the morning, I choose the music to ease the launch into our year. Something sweet, something fierce, Florence + the Machine floats around me as I reach for my textas and my phone.

I begin by marking out the dates on my Grid pad, dropping in numbers under the days of each week and set the frame for the next term. There is a push and a pull. I feel relieved pushing the weeks ahead into a plan, bending time towards the things we love. All the things I know she must, we must, do, get done, find and undertake to meet the needs, pulls me into each day ahead. When the push and pull rise in me, I settle into a sunrise with Florence and my coffee and breathe.

I reach for magenta, a fun colour to etch the fun into our days and ways. The movies, free summer concerts, outdoor movies, and deep web dive finding the free fun stuff that we would never get to if I don’t give it a gold medal in the calendar Olympics. It has to come first.

Red is for celebration- the anniversary of coming home from hospital, birthdays, weddings, our kissaversary, our anniversary of moving out west, getting our dog… celebrations define our family.

Next, comes green for school, because we have missed so much. I open the school calendar for this year, or if it’s not cooked, last year will do. In this moment I am completely on top of the parent must show days. I make sure I record all the stuff where they might need an orange t-shirt, funny socks, cupcakes, costume, cardboard.

• These little things can be the difference between being included or left out.
• These little days, when she misses so much school mean more.
• These things are often out of reach for her brother if she is having a bad day/week/month.
• These are the days anyone can join, even if you are not fast or have trouble with letters and numbers.
• These are the things that I can grab in the last week of January, but if they fall unannounced into a tough sleepless week, hospital week, assessment week, fall are out of reach for my special needs family.

Blue is for hospital, doctor, therapy, imagery and pathology. Blue is for the stuff we have to do and sometimes wish we didn’t. Blue is for patient not the kid. It’s important that there is not too much blue, that blood tests are not the same morning as the book week parade. I get the chance to push back a little on the blue and make sure it works for the kid. Some blue can be deferred to another term. This way our home life factors in the blue, rather than the blue obliterating our kitchen dancing. If the blue is blocked out, I begin to say “is there any way she can have less appointments, do those outside school hours, do this next term?”

Orange is for extracurricular, and while that is fun, it comes with its own challenges. Extracurricular is money, time, and can be difficult for her to navigate. They are all essential for him to have a break from the special needs family life. In our house, its swimming because I can get laps at the same time. Its taekwondo because it ticks so many OT targets without being a patient and makes both kids feel strong when they don’t. Its bushwalking and Parkrun for us as a family. I lock in extracurricular and make a note if I need find the cash for it. Sometimes this stuff is the best grandparent present.

Black is for Meds, getting scripts, filling scripts. It’s on there because we need a lot of reminders for this and it takes time.

And then I sit back and the completely free days reveal themselves to be shaded in Purple. I claim it. I steal it. I keep it clear. I send my beloved a text. These are the days, not for home maintenance, or for meeting up with people but these are the days to guard and keep free for breathing.

needs: Mid-January is for undercover getting ready.

They are still salt washed, windswept babies. Their cuddled forms sleep heavily as the summer breeze whips through my house. They have plans for LEGO and swimming and puzzles and craft and kitchen dancing. There is argy bargy for the remote, to avoid a bath, at the incredulity of shoes. Scratching their heads, they navigate a peach or an egg.

The pin pricking to do list of last week has settled into a gentle hum in me. As the lists get too long in my head, I flip a page of my notebook. The last entry is the Christmas Present list. I begin quietly making a back to life list. Lunchboxes. Even as the recipes crash my Facebook page I resist. Last year’s school stationary idles in corners and uniforms have settled at the bottom of the washing basket.

I yawn and click, click, boom some name labels as a baby step. A soft start that eases the urge and puts a down payment on the organisation required later, later, later. The smug glow of that order buys me a day or two. A couple of picnics masquerade as family fun while I collect intel on where her gross motor sits. In the park, under trees and on sand, I watch her fingers decode things to be opened, closed and connected.

Too intense, it’s summer just let a picnic be a picnic, but if she can’t eat, she can’t concentrate and take her meds… While the angel of summer and the demon of the YEAR wrestle my attention, the just right lunchbox becomes a thing for me. Or is it just the thing to satisfy my hum?

And somewhere I begin to collect stickers and tabs, anything to mark a book spine so her brain can recognise what she needs while the rest of the class puts pencil to paper. I adopt the car park method: pink – level 5 – kangaroo, my family always remembers where we parked but each do in a different way. It is her way to remember differently each time. I know it’s pot luck. I’m fishing for the thing that velcros to her day.

It’s all undercover, it’s in the gaps because it’s mid-January and I want the sunsets long and lasting and the sunrises slept through.