We lived in social isolation for 10 months

Petition update from change.org/SantaSusana

MAR 24, 2020 — 

In 2017, after receiving a bone marrow transplant, my eight-year-old daughter Grace and I lived in the isolation ward at Children’s Hospital Los Angeles. Her immune system had been intentionally destroyed with chemo and radiation so that her body would accept the transplanted cells. Thank God, the procedure was successful and after four months in strict isolation, we were allowed to come home.

That’s when life became truly terrifying for me. Her doctors projected it would take six to nine months for her new immune system to heal. Until then any contact with germs, viruses, mold, mildew or spores could be deadly to her. Except for medical care, Grace and I lived in social isolation. For six months straight. 

I wanted to share what we learned as a family from our experiences while you and your family, and the rest of America, live in partial or complete social isolation during the CoronaVirus-19 crisis. 

Worst Case Scenario
The hospital's child life specialist’s advice seemed so counterintuitive that we ignored it at first. She told us to keep disciplining our kids as if everything was normal. There should be extra compassion and flexibility, she said, but the basic rules need to stay in place. She was right.

Kids can piece together snippets of news, emotions, and changes in their environment. If you let go of the family rules they will conclude that you’ve given up all hope of them growing up into respectful, responsible adults in the future. They’ll give up hope, believing that you’ve given up hope for them to have a future. 

So don’t be tempted to let everything slide. I know you might be just barely holding on, but keep the rules they already know (and don’t be tempted to add new ones). You might need to change how you implement the consequences, but as much as you can, keep the normalcy that rules bring for your kids.

Tell No Lies
Here’s another counterintuitive one, especially if you have young children. Grace was four when she was diagnosed with cancer the first time. The child life specialist told us that she was old enough to know the truth, in an age-appropriate way. 

So we explained cancer to her. We told her before she got procedures. We explained that her hair would fall out, and that allowed us to help her mentally prepare. When we didn’t know what was age-appropriate, we waited for her to ask. Anything she asked we answered honestly.

We were taught that if we “white-lied” to Grace, like saying a shot wouldn’t hurt, then she would be in constant apprehension, not knowing what to expect. She wouldn’t be able to rely on us to help her navigate her crisis. If you don’t tell the truth kids will feel it but they won’t have enough information to come to logical conclusions. They’ll always assume the worst. 

And as Mr. Rogers said, “Anything that's human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary.”

Don’t tread water. 
As a person, and especially as a parent, don’t allow yourself to tread water during a crisis. You need to have enough physical, mental and emotional strength at all times. Especially if the Coronavirus-19 lasts more than a few weeks.

I learned that lesson the hard way, living at the children’s hospital. I thought if I ignored my basic needs it would give me more time to take care of my daughter. First I ignored my body’s gentle reminders like hunger and exhaustion. I ignored my husband and concerned friend’s suggestions. Eventually, my body’s red flags went unnoticed altogether. 

My head was just barely above the crashing waves of crisis. Anytime a new problem came, big or little, it forced me underwater and I was left holding my breath, praying I wouldn’t drown. And that’s a dangerous place for any parent to be. 

You might need to force yourself to eat and sleep. Be honest if you need help. Exercise and relax if you can. Depriving yourself during a crisis won’t solve any problems, but ignoring yourself is guaranteed to make new ones. 

Find your minimum
In a parent's support group at the hospital, we were taught that every parent needs to find their minimum during a crisis. It’s the minimum thing we need every day to feel like there was a moment of caring for ourselves. A moment of small victory. Mine is to eat a piece of good chocolate every night. Another parent said they needed to drink their coffee while it was hot. Another parent needed to have a long, hot shower.  

You might need morning devotional time, or go for a walk, or make your bed, or listen to your favorite song instead of Baby Shark. Only you know your minimum, and it can’t be ignored. It must happen every day. Your minimum guarantees one victory, and in a crisis, you need at least one to keep you going.

Plant a tree. Later. 
There is a time and a place to be Martha Stewart. Right now is neither. I’m a recycling, anti-plastic, organic-food kind of mom. But we’re in a crisis. And this is the right time for paper plates. I still cringe when I use them, but skipping dishes when surviving is smart. You can’t afford a fight with your spouse over the dishes. You can’t afford to run out of energy while sanitizing all surfaces, at the same as potty training the puppy, at the same time you’re not sleeping well, at the same time your daughter hits puberty, while doing the dishes. You can’t afford to burn out. 

You can afford to plant a tree later, or better yet, use bamboo paper plates now (they’re more sustainable). During a crisis, take all the shortcuts you can.  

Leave the spices alone. 
When we were living in isolation at home I would find myself organizing the entire kitchen, right down to the spices. I generally hate all forms of housework, but it was my way of trying to control the only kingdom I could rule. And yes, I suppose my neatly organized kitchen made me happy for about three minutes. Then my three-year-old son would come “help” me. I’d feel even more out of control than before.

We’ve never been in total control of our lives. We know that, but it feels more threatening with the Coronavirus-19 raging around us. In times of crisis, coming to grips with that truth can be a crisis in itself. 

But trying to compensate for the loss of control takes a lot of work to maintain and it never works out well. Aggressive organizing, unrealistic expectations, codependency, or short fuses are some of the gentler outlets of trying to steal back control. Eating addiction, alcohol addiction, or drug addiction, self-harm, and abuse are the more obvious and deadly forms of it. 

When I was able to admit that I wasn’t in total control of my life, I was surprised by the weight that was lifted off my chest. I can do my part, but I can only do my part. That focuses my attention and energy to do what I can do, instead of dwell on the things I can’t.

To remind me of this, I often say the Serenity Prayer, which I learned in Celebrate Recovery.

God, grant me the serenity
to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.
Living one day at a time,
enjoying one moment at a time;
accepting hardship as a pathway to peace;
taking, as Jesus did,
this sinful world as it is,
not as I would have it;
trusting that You will make all things right
if I surrender to Your will;
so that I may be reasonably happy in this life
and supremely happy with You forever in the next.
Amen.

Godbless,

Melissa