Two under the weather, maybe?

I've been sick for the past 8 days and today Ben is starting to show signs of also feeling under the weather. I'm hoping this passes. He has much more secretions than normal and is a tad warmer to the touch. He also had a restless night last night and is snoozing more than normal today. We've been pretty fortunate with not many illnesses, so I can't really complain.

We have a date for Ben's MLB (airway scope). It is June 8 at 12:30.

I also received this story from another CHARGE mom and I just loved it and had to share.

Sounding the Alarm: Tune in to Life’s Warning Signs

By Scott Newport
Modern life is crowded with alarms, dings, bells and beeps. The dryer buzzes when the clothes are hot and ready to be folded. The oven timer dings when the lasagna is ready to be cut into squares and dished up for the family. The answering machine beeps to tell us we’ve missed an important phone call. Alarms are a good thing.Beep…Beep…Beep…Alarm clocks get us to work on time.Beep…Beep…Beep…Okay, maybe alarm clocks aren’t so great.Beep…Beep…Beep…But this isn’t an alarm clock. This beeping is different. It’s Evan’s alarm.Beep…Beep…Beep…This alarm tells me my son’s oxygen levels are unstable.Beep…Beep…Beep…Is Evan’s nurse going to check on that alarm?Beep…Beep…Beep…Okay, okay, I’ll go check it out.The insistent beeping continues as I get up from my warm computer chair and head for my son’s home-ICU.As I climb the basement stairs and pass through the darkened kitchen, I remember that Evan’s night nurse finished her shift an hour ago.Okay, now I’m panicking just a bit. My pace quickens.I enter Evan’s room. The beeping gets louder. Red warning lights flash on Evan’s ventilator, giving the room an amber glow like the inside of a space ship. In the semi-dark, I silence the alarms by pressing my favorite button: Silence/Reset. Ah, I’m granted two minutes of relief from the beeping.Is there anything in life more indulgent than the snooze button?While the ventilator is on “snooze,” I check Evan. Breathing okay. Pulse okay. I start fumbling around in his crib to find out why the alarm sounded. With all the tubes and wires in his bed, it’s like untangling extension cords in the dark. The swishing of air below his blankie clues me in on the problem: Evan rolled up in his ventilator tubing and one of the hoses detached. I quickly reconnect the circuit and straighten the tangle of wires. Now, he can breathe with the full assistance of the machine.My two-minute “reset” window is up. But the alarm is silent as if to say, “All is well.” In the quiet darkness of my boy’s room, I think back to the first time I used the “Silence/Reset” button…We were at the hospital, where Evan spent the first 252 days of his life. “Hey Scott,” the ICU nurse said, “Can you silence that alarm?” I knew what she was talking about, but I’d never dared to mess with any of the unfamiliar electronics in Evan’s small room. But, with the nurse’s permission, I was reassured that touching the button wouldn’t put Evan in harm’s way. I got up from the wooden rocking chair with the gold plaque engraved “In Loving Memory of…” and cautiously pressed the”Silence/Reset” button. Though I’d seen it used frequently, I’d never had the nerve to use it myself. Amazingly, after that day I felt like I finally gained some small control over my son’s care, some small control over the direction our life had taken.

Our New Direction
We were already a family of four when our boy, Evan, joined us in 2002. Though he was born with a terminal heart disease called hypertrophic cardiomyopathy and a variety of other complications brought about by a genetic condition called Noonan’s Syndrome, Evan is much more than a diagnosis. He is a beautiful child with a happy, playful disposition and a head of angelic blonde curls.Sometimes people ask my wife, Penni, and me: “Wouldn’t it be great if you guys could go back? You know, reset your lives to a time before Evan was born?”And sometimes we hear comments like: “That’s such a shame.” “It’s just not fair.” “Do you guys ever go out just to escape?”Or the worst: “He’s going to get better, isn’t he?”No, I tell them, Evan isn’t going to get better. The disease he has is incurable. Every time, their faces fall. And as I break this news to them, some small part of me must accept that reality all over again myself.But, even if I could, I wouldn’t reset my life to before he was born. Sure, there are times when I wonder what that would be like. But life B.E. (Before Evan) would be missing all the things Evan has given us: A higher standard to live by. More compassion for others. A rare sense of how precious life is.Here’s the thing. My life was reset. Evan pushed the button.

Pushing Your Buttons
Who–or what–is pushing your buttons? I’m not talking about your boss or rush-hour drivers or your mouthy teenager “pushing your buttons.” I’m talking about that thing that pushes your “silence” button, pushes your “reset” button. That thing that stops you right in your tracks.And there you stand. There are no words. There is no reason. There’s nowhere to go but up. Maybe for you, like it was for me, it’s a diagnosis or health issue. Maybe it’s a family crisis. A problem at work. A divorce.The lesson I’ve learned from Evan, and want to share with you, is that, in the midst of a difficult life event, don’t give up. Don’t give audience to the thoughts of “If only…” and “I wonder if…” and “I wish that…” Embrace joy where you find it–in the poignant, the bittersweet, the temporary. Those moments are sometimes so subtle, they flutter into our lives for just a moment and, if we’re not paying attention, are gone in the next blink.I think we need to learn to actually choose to push the “silence/reset” button. To sit still. To appreciate more. To wonder about life. To adjust our thinking and retool our attitudes. To juggle out priorities away from what’s just pressing and toward what’s truly important. To have grace with ourselves, and to give ourselves permission to “reset,” even if only for a short while–just long enough to get the energy we need to continue.

Alarms Are Good
When an alarm goes off in our lives, we need to sit up and pay attention. We need to leave the burning building. We need to pull over and let the ambulance pass.But we also need to heed the alarms or “warning signs” that are more inconspicuous.We need to recognize the early signs of depression–in yourself or someone you love. We need to confront teenage behavior that may indicate drug or alcohol use. When we get that “gut feeling,” we need to choose not to leave your child with someone that you “just don’t feel right” about. We need to acknowledge that there’s distance in your marriage that shouldn’t be there and fight to get it back.Because my son is terminally ill, I’ve met more than my fair share of parents whose children have died. I find it interesting that these moms and dads almost always feel compelled to tell the story of those last few moments with their little boy or girl. If, at the end, there was nothing else that could be done, they just turn off the alarms. That’s why I never really complain about Evan’s alarms.Life is risky. When the alarm sounds, it means we’re alive. And if we hear the alarms, it means we’re tuned in–which is more than just being alive, it’s really living.

About the AuthorScott Newport lives in Michigan with his three children and wife, Penni. His son, Evan, now four years old, is diagnosed with Noonan’s Syndrome and hypertrophic cardiomyopathy. If Scott had a bumper sticker on his car, it would read: “Proud Parent of a PICU Soldier.”