Means and Needs

needs:

January rolls a sleepy head and I can feel the Year sprawled before me. January has always been the foundation for me. It’s when, the dates and times slip and slide and I meander through the things that are out of reach during the year.
It’s school shoes, I just need to sort the orthotics first.
It’s lunchboxes but it’s also about settling in food around meds.
It’s new meds, or new doses of old meds, but it’s also prescriptions, repeats and reviews.
It’s school books but it’s also about revising so we don’t lose the gains made last year.
It’s a GP visit for a new mental health plan so she can see the psych in the holidays.
It’s a chance to do the physical therapy that fell away in term 3.
It’s the dentist that we never get to.
It’s the scans so we don’t have to miss classroom time.

Sweet soft January. Waves and board games are calling. Star gazing and painting at the kitchen table, Minecraft and Disney are stirring my dudes into another day without a name. January, finishing Christmas ham, that school holiday cereal and that single jar of chocolate spread, you know the one. Even the bright joy filled balloon of January is pierced: by The Year. It looms over me. All the bits and pieces that need to be clicked into place are nudging their way in.

And while the planning and the getting out of the way and managing time out of school is such a driver in our life, is it really what January is for?

means:

I believe (try to at least) that January is for the things that build her up, that build them both up, for the year ahead. I have to believe January is for the blocks that make us a family, for the laughter that comes from things that happen only because there was space for them.
I feel useless if I am not getting some kind of result. Not so healthy for me and entirely exhausting to love. I need a parachute, life vest, a life guard, who pulls the planning rip cord and saves January.
I’ve done a little list for myself, for them and for my beloved, the team that paves the way to my heart’s desire. Ours is a family that needs to remember what Summer is all about:

Summer is about lazy dinner at the beach and standing in the sea.
Summer is about lying around and reading books until the very end.
Summer is about a late-night star gazing.
Summer is about learning to cook, see, plant seeds, and building stuff from stuff.
Summer is about my beloved and I having sleepovers in their rooms.
Summer is about swimming in the pool, any pool, any beach, lake or body of water.
Summer is about dancing under a sprinkler.
Summer is about a game that lasts for days.
Summer is about all day dress-ups.
Summer is about a jigsaw that takes a very long time.
Summer is about writing letters and cards to other friends.
Summer is about oh so cool museums and galleries.
Summer is about hot days in cold cinemas.

And Summer, just maybe, Definitely Maybe, “You’re gonna be the one that saves me
And after all, You’re my wonderwall”.

needs: Ode to our Favourite Gatekeeper.

Dear Daisy,

I hope you are enjoying your retirement. Our little family misses you, and I dare say Dr Neuro is missing you more each day. We never had a chance to say good-bye. Only an email to say he would try to navigate the world without you.

I remember you called me to confirm the first appointment and gently nudge us towards the simplest parking and suggested reverently that it was not unusual for Dr Neuro to run late. You warmly said there was no need for panic if traffic thwarted us. The first day we met, your actions cushioned our stumbles. That day, you had the first of many waiting room playdates with my girl while we got answers we didn’t want, to questions we didn’t know we had. You cared for the object of our love so we could talk about all the unsaid things that would forever change our lives. You knew to write down the appointments, contact details and test names. You gently repeated the information that slid off the edge of my mind as it reeled with revelations about the girl I made from scratch. You were everything that day.

Later, we slipped into a happy routine, of making appointments for my girl at the beginning of the day because you said she would be at her best then. You reminded us when a new referral was needed so we could claim it back, always reminding me that “every bit helps”, and it did.

You put my emails under his nose. You took my tear-soaked calls from the hospital the day she broke her neck and the day her school needed guidance. You edged me towards the questions so Dr Neuro could give us the means to help her needs.

Thank you for all the time you spent chatting with my boy, Grandma or Pop while they waited. You always made our family members welcome as they breached your work space and we gleaned our course for the next 3/6/9/12 months.

Thank you, for always remembering her name and her wonders while we shuffled the papers that leaked more sinister things. Thank you for finding ways to accommodate her life within his schedule, for seeing the merit in an excursion or assembly. You found a way to fit him into her life, as you fit us into his.

You were with us for 7 years of calls, emails and minutes before and after appointments. Your kind and gentle ways made those days a hundred times better and a thousand times more effortless than they could have been. Somehow you managed to grow us and nurture us into being the special needs parents we needed to become.

So, Daisy thank you, and bless you and we hope you are happy and cared for and loved because you were there for us and continue to be whenever we book or call or have an appointment.

means: Getting to know your gatekeeper.

These women, they are all women, keep my world turning. They keep the gate to the specialist, therapist, test or assessment. Gatekeepers are schedulers. Whenever we catch a lucky break it usually comes from a gatekeeper. Gatekeepers are the human face of the Australian healthcare system. They are the only step in the chain between suffering and treatment that applies common sense and compassion. Gatekeepers gently push back the chorus of parents jostling for an appointment, scan or test. Gatekeepers assess things quickly over the phone or by fax and determine who gets to see who and when. I have shame for the years spent fighting with gatekeepers, thinking if I was more persistent it would result in whatever she needed. Now I ask for help. “Help will always be given at Hogwarts, for those who ask for it.”

Getting to know your gatekeeper.

Have your gatekeeper spiel. I need an appointment for my daughter as soon as possible. What do you need from me? They are busy, so get to the point.
Work out the best time to call ,and the best mode of communication. I don’t bother with emails to someone who doesn’t read them – ask when it is a good time to call.
Take a second to get to know them – books, music children or grandchildren. Anything that can help you find something personal when the time comes to show gratitude, or to draw a connection when you need assistance. It will come.
If you are taking a coffee into the waiting room, it takes 2 seconds to call and see if she wants one. A small kindness can make a big difference.
Remember her birthday. If you only see her every 6 months – take flowers.
Make sure she gets positive feedback, if she works in a hospital then make sure that feedback is formal. It has an impact on her review, and takes so little time.
Get your kids to bake/make for your gatekeeper. Friendship bands, loom bands, a picture, a story. Gratitude, gratitude, gratitude….

Posts

Early January is for Getting Ready or is it?

needs:

means:

Ode to our Favourite Gatekeeper

needs: Ode to our Favourite Gatekeeper.

means: Getting to know your gatekeeper.