R U Ok Day

Today it’s R U Ok Day here in Australia.

It starts with a suicide prevention organisation, but it’s so much more than that: it’s an opportunity to start meaningful conversations, about mental health struggles, with friends, relatives, colleagues.

It’s a good opportunity to check on one another, not just today, but every single day of the year.

And as my day unfolded between cross-checking nurses’ invoices, advocating to improve my daughter’s experience with therapies, and closely monitoring her mottled skin (a condition that has considerably worsened after contracting Covid, a week or so ago, and that might signal a deterioration in her complex and fragile heart), I realised that I’m not ok.

Well, I’m not ok the way I was before.

Before I wasn’t checking on another human being’s vitals, several times a day.

Before I wasn’t driving from a therapy to a hospital visit, talking about departments, surgeries and clinical conditions.

Before I didn’t have all this admin job of coordinating support staff, tracking medical expenses, requesting assistive technology, emailing a dozen specialists and therapists around Sydney.

Before my life was simple. Not always easy, but damn it was simple!

I’m not ok, because it’s not humanly possible to be ok, when you are at the beginning of your journey with your daughter’s rare syndrome.

It’s not realistic to be ok when you live in apnoea, anxiously anticipating the day that your baby’s cardiologist will tell you: “the time for the next open heart surgery has come”.

It’s simply not feasible to be ok when you fear that the next hospital admission might be around the corner, or that your kid might develop further medical issues because her syndrome will likely bring more of those.

Nobody would be ok.

I’m not ok, but I’m ok to talk about it.

I live with a much higher level of anxiety, never experienced before. But I’m aware of it.

I live with triggers and traumas that I would have never imagined, and that sometimes feel unbearable. But I’m willing to work on them.

Many times life is harder than us, and that doesn’t feel ok.

That’s why it’s important to talk about it. It’s important to say “No, I’m not ok”. It’s important to monitor how we feel: stressed, sad, hopeless, angry, restless, anxious, scared; and ask for help.

My wish is that, next year on R U Ok Day, I will not be so focused on the many reasons why I’m not ok.

I want to learn how to be there for others, who might not be ok and not even know it.

I want to focus on the many times when I actually feel ok.

I want to be able to create a community around me, a village where we can be there for each other.

Because none of us is ok all the time.

We all need someone who’s willing to listen, and I want to be there to listen.

It might not happen tomorrow, but someday I will be ok and I will be there for others.

If not today, someday.

Beatrice and I on R U Ok day