Stop Screaming and Listen!

"I don't believe it."
"That is why you fail."

Please Note: 
This post is going to be both spiritual, and religious, in nature. If that concerns you, read it anyway. You might like it.

Please Note, Part Two:
That being said, what I'm about to share is true.









The Power of Spirit aka Divine Inspiration

Like mother, like daughter.

My wife saved our daughter's life.

She would probably refute that statement, but with some hindsight you begin to notice interesting patterns. When you notice that timing was everything, especially when there was no reason to do what you did with what you had at the time, one looks for clues.

Seriously, I wonder. How did we avoid that particular bullet?

Things go bad, yet they can be a good deal worse. That being said, one of the blessings we sometimes take for granted are people sensitive enough to both listen to divine inspiration and act upon it.

My wife is one of those people, and she does it more often than she cares to admit.

For some readers, the notion of divine inspiration may seem a convenient way to describe ordinary intuition. Yet I firmly believe there are times when we are guided by subtle but powerful inspiration from our Creator.

I won't delve into the details here, but I will be frank. I personally have received information that A) I did not possess at the time that B) came into my mind as clearly as a voice that C) proved to be exactly what was needed at a crucial time.

Again, timing can be everything.

***

Last month, it worked like this.

Sharla saw Miriam's signs and, at first glance, they did not seem much of a problem. She had the tools to manage it, but despite a good night's sleep Miriam needed two liters of air to keep her saturation at the right level. Other than her racing heartbeat, there was no coughing or gasping or other distress. Pretty typical.

Yet Sharla felt she needed to go to the ER, so she did. She also felt impressed to bring an overnight bag, though I'll admit that in our life that's just good practice.

For the rest of the story, if you're short on time, here's a 1:45 recap of what happened (just in the lungs instead of the brain).

Still reading? Okay.

At the ER, an x-ray revealed pneumonia. Now Miriam needed four liters of air to keep her sats up. The doctor there decided she needed transport to Children's Hospital to be safe, though the ambulance did not flash its lights. Yet by the time they arrived, Miriam was on six liters of oxygen.

When they reached the bed at the Children's Hospital ER, Miriam's saturation had dropped to 50% and she was on ten liters of oxygen. Progressive x-rays revealed bacterial infection blooming in one lung and, within a short time, spreading to the other lung.

Here's the thing. It's never just one thing with my daughter. There's always something more.

Note: This is an analogy.

Long story short, Miriam crashed while in the Children's Hospital ER. The pneumonia had cascaded into ARDS, or Acute Respiratory Distress Syndrome. You can learn more about that here.

Scary stuff.

Taking her upstairs to the ICU, they placed a central line near her collarbone - which punctured her lung and caused it to partially collapse. They added a shunt in her ribs to drain liquid and gases surrounding her lungs.

I eventually arrived from work and had some time alone with Miriam and my wife. My daughter was in bad shape. How did things go downhill so quickly? For the first time in a while I was visibly shaken at the unexpected turn of events.

A friend and I provided Miriam with a priesthood blessing. Again, for those not of my faith, it may seem a quaint ritual, yet I have seen miracles exercising this power. For those unfamiliar, here is a great primer on priesthood blessings.

Inspiration is another name for personal revelation. This means you get information unavailable to you at the time (such as what the future might bring), but in a way that provides complete confidence. I remember the distinct feeling that came moments after the blessing finished, something I've felt many times in my life.

She will be fine.

I haven't always felt this after a blessing, but when I do it has been right. Always.

Fair enough, I thought, as if God was standing there. Thanks for the update.

***

With inspiration, with the Holy Spirit, there is no fear. The doubt is gone, I feel confident in my choices. I actually feel something I normally never feel: peace. I cling to this feeling when things look the more hopeless.

I felt this inspiration the night Miriam was born, struggling to live.

I felt this inspiration the night Miriam had the flu a few years ago and it turned out to be a rotavirus.

I felt this inspiration during a grand mal seizure, when I placed my hand on her head and offered a blessing and watched the seizure stop within seconds. Without medication, mind you.

***

Inspiration often comes as shared intelligence. I expressed to my wife I felt Miriam needed to be intubated. That's a rough thing to do to anyone, but it felt right.

She looked at me and said, "You know, I've felt the same thing."

We told the attending nurse a few minutes later, who looked a little surprised and said, "I came to see what you thought about that option."

Of course you did, because we knew before you arrived. We'd been inspired and prepared in advance. She's never been intubated aside from surgery before. No one had suggested it. She was stable, but struggling. For both Mom and Dad to have this same thought, mere minutes before the doctors come to the same conclusion in another room?

Coincidence? Maybe. Mutual decision-making based on experience? Perhaps.

Nah. It felt different, for one clear reason:

My fear was gone.

***

Please Note, Part Three: 
Another analogy.

***

Please Note, Part Four: 
What the dragon really looked like at the time.

Every Dragon Has Its Treasure

Bad things happen.

All of us fight dragons.  Our family's particular monsters are more obvious because cerebral palsy is overt. It can be easy to think we have it worse, but because it's...well, so obvious.

So now I'm going to get schmaltzy, but there a good reason for it. It's called context.

Ready? Okay, here goes.

It is easy to define ourselves by our trials. One of the many hazards of that kind of thinking is that when all we highlight are the dragons in our life, all the troubles we face, we never see the treasure that may be at our feet. There IS treasure in everything, but sometimes we have to force ourselves to see it to keep going.

All right. I'm off the schmaltzy soapbox.

My daughter Miriam gets sick every winter. It used to be chronic, not because she is sickly or has a poor immune system, but because cerebral palsy reduces the ability to do those things we take for granted: cough and spit, blow our noses, spit a gob off a bridge, that sort of thing.

Gross? Yep. Essential? You betcha.

For kids with this challenge, illnesses––especially the respiratory kind––crop up more frequently. Pneumonia is one of the leading causes of death for those with CP so, add to the mix that public school is one giant petri dish, winter is always a scarier time for us.

So we take precautions when she gets sick to help prevent a visit to Urgent Care. We have an oxygen pump she wears for extra saturation at night to help with the sleep apnea, and a saturation / heartbeat monitor as needed. We have a suction machine––the single grossest device more appropriate for the Baron Harkonnen in Dune, but very, very useful when she cannot clear the gunk the rest of us discard in a tissue.

We also started using a chest physiotherapy device. Miriam wears a vest and it literally inflates and shakes her like a doll to clear her lungs. 

The jury is still out on this one.

So it was of no concern when she started showing signs of a cold or flu early last month. She coughed more and spiked a high fever. She spikes a fever at the opening of an envelope, so no surprise there. With all the interventions and monitors, we could keep an eye out for anything more serious.

By the third day she was sleeping through the night. The fever was lower, though she was still showing signs of distress. Instead of coughing, however, she was making weird retching sounds. We figured it was nausea, since with his stomach surgery it is more difficult for her to throw up.

Again, appreciate the gross stuff. It literally saves your life.

The next day, she was in a medically-induced coma on life support.

***

Hindsight is everything, of course. Looking back on this past month, I have tried to set aside my frustration and anger and exhaustion and look, really look, for those blessings we often miss. 

It still sounds like a discarded Hallmark quote, but it's true: 

Every dragon has its treasure.

Where is the treasure you may ask? Why does this post sound like the text version of a Thomas Kincaid painting?

Read the next post to see.

___

P.S. I include this because it matches my analogy. And because it's just rad.

P.P.S. Yes, I used the word rad. If bell-bottoms and facial hair can make a comeback, so can groovy slang words.

Birdsong in the Ghetto

We had a close call this past month, one that saw Miriam in the ICU at Children's Hospital for three weeks on a respirator and medical-induced coma. It was a very close call.

More on that later.






I'll be honest and say I have debated sharing this. If Facebook has taught us anything (and it hasn't), it's that sometimes sharing personal moments on social media can be...well, cliché. It's hard to tell if people are looking for validation which, on its own, is fine. Yet I wonder if sometimes we use the public forum to turn our tragedies into something more noble than they deserve.

Still.

A perfect place for the next Jason Bourne movie.

Many years ago, I was serving as a missionary in Marseilles, France for The Church of Jesus Christ of Latter-day Saints.

One afternoon we passed through a dense ghetto near the harbor. Tenement buildings, some hundreds of years old, crowded until the sky was just thin strips of blue. Trash lay everywhere and, in the heat of the day, the air stank of old fish and sewage. The style was noticeably Arabic, a street more appropriate for Cairo than Paris, and the mood toward Americans was tenuous at best.

Ugly. That place was ugly.

In that moment, however, I recall hearing birds––countless birds. Above, swallows nested in hollows where old stone had crumbled away. They had built an entire colony along the red-tiled roofs. The sound was lovely, echoing through that spot as it had for over 300 years.

It sounds like a badly-written poem, but it was true: in that moment, that place was infinitely beautiful. I had to stop and look with different eyes and see things clearly visible yet unnoticed.

Being a father of a child with severe disabilities is a mixed bag. There are equal measures of guilt and uncertainty and anger. There is also a nobility to the work. I would be remiss if I did not notice––and call attention to––those hidden blessings that are so hidden they stare at me in the face every day.

So over the course of this coming week, I plan to share insights we learned the three-week experience at Children's Hospital.

I hope it comes across as less "Woe is us" and more "Whoa, look at this!" Until then, to quote The Beverly Hillbillies:

"Ya'll Come Back Now, Ya Hear?"