Ariana's Posts

So Lucky

We have worked to expand Tony’s tolerance for others doing hair cuts with electric trimmers and scissors with Emily during habilittion. All Photos by Ariana

This week, I really wanted to pull up the keys of my laptop and wrap them around my thoughts to skip out on writing a post altogether. Situational burnout has settled in like rusted dust, like a slowly tightening choker pulling me into an emotional exhaustion thicker than quicksand. Sometimes it feels like I am stuck in an endless knot of cascading dominoes, with one event falling into another and constantly trying to knock me about.

As I stared down my internal apathy, I thought about this: I really am so lucky. Tony and our family are very, very lucky.

We have someone fantastic who wants to provide (and feels comfortable doing) habilitation therapy for our son. During any time period that makes us lucky. But right now, during an escalating pandemic? Profoundly lucky.

Emily still needs to spread out the cutting over smaller sessions over several days so that Tony doesn’t become overwhelmed and melt down from the sensory input he finds aversive.

Many families have lost therapists that they might not get back. Therapists who might want to work but no longer have childcare. Therapists who have risk factors and are concerned for their own health and need to look after their own safety right now. And of course, some families are concerned about the possibility of a therapist bringing COVID into their homes and have themselves paused services.

Enough families are in need of therapists that the Division of Developmental Disabilities (DDD) is providing emergency approval for parents to become the paid habilitative provider for their own kiddos if need be. I am so lucky that I don’t need to do that. Sponging away additional time out of my schedule to fill out reports on top of already providing the services/supports (as I have done and always will do without being paid for it when therapists are on vacation, etc.) would feel suffocatingly stressful right now. And I am profoundly grateful that I don’t have to do that.

Although, if our family had lost income during this pandemic, I know that I would be grateful for the opportunity DDD is providing to be reimbursed for what I have always lovingly done very much for free. We are so very lucky that my husband has not lost his job as so many have right now.

The most recent hair cut saw him sitting for the longest period of time that I witnessed while she worked on his hair. He played with toys and listened to several songs on YouTube, but seeing this amount of sitting from him for something that is harder for his sound sensitivity, tactile defensiveness, and ADHD was pretty cool.

I am so lucky. I woke up this morning healthy. Andy woke up healthy. Our beautiful children woke up healthy. And next week, we are so very lucky that Emily is coming back from her summer vacation to resume habilitation work with our little man. So, so Lucky.

Before you go, please remember that luck isn’t guaranteed to anyone. I am going to ask you to read through a couple screen shots from the news I read today:

Our local Arizona front-line healthcare heroes are stretched to the breaking point. When Lauren, one of our state’s very own ICU nurses, said “You know, it hurts. It hurts to feel forgotten by your own state…” later on in that CNN interview, she wasn’t asking for kind words. She is hoping you and I and every other Arizonan will listen to what healthcare providers and top scientists are recommending when it comes to staying home as much as possible and wearing masks everywhere we possibly can. Because if we don’t, we might not stay so lucky, and the swelling wave of COVID patients flowing into and flooding hospitals hoping for help certainly won’t be either. Because there will far too many patients to be able to help all of them or safely provide care for. Sometimes it takes more than luck to have things go well.

And now, I am going to let my emotions sink into that quicksand and sign off so I can do some cleaning and everything else I can so that luck isn’t the only thing I can hope to rely on.