BY BLYTH LORD

Dear Courageous Parents Network:

I fear not having healthcare available to us [for my son] if we will need it badly. My suggestion on the content needed is something to help with fear, something to make us brave. Braver than we have already been,[if] that is possible.

• An email from a CPN parent, received Tuesday March 17

During this surreal and deeply unsettling time brought on by the COVID-19 virus and what essentially amounts to the shutting down of the entire world, I want to let you know that our thoughts are with each of you in the Network: parents, pediatric providers, family members, siblings, and all the vulnerable children living with serious illness.

COVID-19 has exposed, in a startling and entirely new way, how vulnerable we are. Of course, families of medically fragile children knew this already; they live with it every day. Now, everyone understands handwashing as a basic duty we owe one another; parents and siblings of these children have been master handwashers since they first learned the diagnosis and the importance of keeping germs out of the house.

CPN mom Brenda sums it up so well in her recent Facebook post, which I share here with her permission:

In case you didn’t get the memo — the world is CLOSED and we’re all supposed to “GO HOME.”

You’re going to be ok, trust me.

Our family learned the hard way, that home is the best place to be. (Sam taught us that.) We spent the last 17 years creating a life at home for us — because it’s where we had to be. And at times, in isolation for Sam’s health and safety. We structured our work, family time and other activities around being home. Now, as a result of it, we rarely feel the need to leave.

I’m here to tell you, you won’t die from being home more than you’re used to. I guarantee there will be strife, fights and feelings of isolation. Use that modern technology we have at our fingertips. Click on that video chat icon, call an elderly person & check in on them. You’re going to cook more, clean more and communicate more. Get ready for that.

I want to acknowledge that our family has basically been in “training” for something like this for a long time. There won’t be much change in how we operate. 

Some of you may find dark humor in the fact that the rest of the world is now experiencing your normal. Some of you may find that this surreal reality adds a scary layer of additional anxiety to your already-anxious-ever-ready-state of being, Hypervigilance is exhausting. It may be tempting and is certainly understandable to declare that this is really just TOO MUCH TO BEAR. But bear it we must and BEAR IT YOU CAN. Because you have already shown just how capable and strong and resilient you are. If ever there was a population of people who knows how to hunker down in the face of all sorts of adversity – financial, medical, social – it is you, the families of Courageous Parents Network.

To help lighten the load even a tiny bit, we are working on some additional virtual programming, beginning next week with a series of short videos from one of CPN’s advisors and therapists with strategies and non-technical thoughts for how to keep your family and yourself well and strong. You can do it. And we are here to help.

Most immediately, we direct you to these heartfelt CPN videos for guided meditation and gentle yoga in the home. My daughters and I have started doing 30 minutes every morning to help us keep our acts together.

CPN Mom Sandy Clancy leads a powerful and restful yoga sequence

A guided meditation from instructor Ben McLellan

Gentle Yoga Sequence with Ben McLellan

Walks outside are also antidotes that never fail, and a good podcast can be a helpful companion. (Yes, you deserve the time. Find someone to watch your child and give yourself a break.) Here are a few non-CPN podcasts we recommend to remind you that you have within you all that you need to cope.

Ross Gay: Tending Joy and Practicing Delight

Brené Brown: Strong Back, Soft Front, Wild Heart

Joan Halifax: Buoyancy Rather Than Burnout in Our Lives

Again, you are not alone. We wish you calm and well-being.

Forget the elbow-bump for a moment: Hug.

xox Blyth and all of us at Courageous Parents Network