Sunday, February 18, 2018

Thoughts and Prayers

I've heard a lot of chatter this week about the futility of "sending thoughts and prayers."  Along with the rest of the nation, I was shocked, hurt, angered, saddened, and frightened by the news out of Florida on Valentine's Day.

Valentine's Day.  The day I danced with my last 6th grader at his dance.  The 6th grader who was a 1st grader at the time of the Sandy Hook shooting.  The day I subbed in a ballroom class in a high school.  The day my 17 year old attended a typical day in another high school.  Did it hit home?  Yeah, it really, really did.

But here's the thing, in reality, there's not a whole lot I can do for those families in Florida.  Do I think more gun legislation would help? I don't know. Would better mental health services work?  Maybe.  Would establishing better connections between people?  Probably.  So I'll work on that one.

And in the meantime, I do what I can in my own little world.  Every. Single. Morning when I walk into a new classroom, I scout it out.  I lock the door and use a magnet strip to cover the strike plate so it only takes a second to secure the door.  I look to see how to close the blinds.  I figure out where kids can go to be out of sight of a door.  And I pray!  Because I think it matters.

There are so many times when we can't do anything else.  But I believe prayer matters. I've always believed this in kinda a ethereal, nebulous way.  But in the past eight years, I've come to know it in the most intimate, personal way.

Eight years ago, when I simply couldn't stop crying, I felt the peace descend as family members found out, and started praying for us, and I found strength.   When Aaron was lifeflighted, I felt the prayers of the neighborhood that was woke out of sleep in the wee hours of the morning, and found peace.  When things took an awful turn for the worse during a time I stepped away from the hospital for a few hours, and I went racing back, the prayers of people around the world went with me as my daughter sent out a plea for them on Facebook.  I learned that they are tangible, real, and oh so important.

Does that mean that's all we have to do?  Of course not!  If a staff member showed in in Aaron's doorway and said, "Good luck, I'm praying for you" I think I'd take their head off.  They have a job, they can do it, and they darn well better.  But if they also want to add their prayers, well, this mama had better have some Kleenex handy.  I remember a nurse stopping me in the hall and telling me he was praying for Aaron, and he's not a member of our faith.  That was several years ago, and I still tear up when I think of it.  Because it matters.

So yes, using prayer as an excuse for not doing something is not acceptable.  Not at all.  But using prayer in conjunction with whatever can be done, big or small, and maybe especially praying and sending good thoughts when there's nothing else you can do is important.  It's vital.  It's life-sustaining in many, many ways.

And if you want to spare some prayers for my four boys who will have to drive home from Southern Utah tomorrow afternoon in the middle of a winter snowstorm, and maybe a couple for their mama who is already worried, I'd be so grateful.

The effectual fervent prayer of a righteous man [or woman] availeth much.
James 5:16

Sunday, February 11, 2018


Shirt says,
 “I’ve got MOVES you’ve NEVER SEEN”
Boom!  He’s grounded.  Until Easter.  

Yeah, we tried to make it work this winter.  He’s doing so well.  But more and more I’m hearing about how bad the flu season is, more people around here are getting sick, more children are dying.  We still haven’t reached the peak according to reports I’m seeing.  And it’s just not worth it.

While mortality rates haven’t hit as high as some years, the number sick are rivaling the year the swine flu made it’s debut.  And as long as people think they just “have to” go to church, the store, the hockey game (seriously!!), we’re not taking those chances.

He’s still going to school, but see, he goes with a nurse whose primary focus is keeping him well.  His school is very careful to watch for any signs of illness, any of them, and quickly exclude the child.  And his nurses think nothing of calling me and saying, “today doesn’t look like a good learning environment for him.”  Code speak for someone looks germy.  Nobody there is thinking the world will end if they happen to miss a day.

And frankly, that’s the crux of the matter.  The world in general will go on, in fact, it probably won’t even realize you missed a day.  Yeah, there may be some assignments that need to be made up.  Someone else will have to pinch hit for you.  That’s why I even have a job.  I substitute when a teacher can’t make it to work.  Is it ideal?  No.  But is it worth killing someone over?  No, it’s not.

But most people don’t see it that way, so I have to.  It’s okay.  We’ll just stay home and try to keep him safe.  And when spring comes (the real one, not just this lack-of-winter season we’ve been having) we’ll come out of hibernation with the rest of the animals.

Eight years ago today, we had an ultrasound that rocked our world, changed my whole focus.  I never dreamed my life would look like it does now, but that’s okay.  I’m a better person for it, more focused, more grounded.  And I’m not looking for it to change any time soon.

And that trach change that Michael said he wanted to do?  Yep, last Sunday night he did one.  My 11-year-old son changed his brother’s trach and did a fine job of it, too.

Better a thousand times careful than once dead.

Sunday, February 4, 2018

Not Much, But Still, So Much. Life is Good.

This cute kid has been doing really well!  Unfortunately "has been" seem to be the operative words here.  He's struggled the past few days and I'm not sure why. 

Has he caught something?  Right, like that could happen with all the bugs going around, not to mention we had the lovely influenza B right here at home a few weeks ago.

Is it a change in diet?  I ran out of the tofu we've used as a protein source and I started using a protein powder.  I've gone over the ingredients in the powder and really, there's nothing there that stands out.  It's a vegan, non-GMO, no sugar, etc, etc recipe, but still...  Actually, I'm kinda hoping it's this one.  Much easier to fix.  Tomorrow he'll be getting his food without it and we'll do that for a few days to see if that makes the difference.

In other news, he got a haircut yesterday.  Yep, he liked it about as much as most 7 year old boys do.  Not at all.  Unlike most of those boys however, he was also afraid of the clippers.  Poor kiddo.  As I flipped them on, he started crying.  But with big brother's help, he managed to get through it, and his bath and then fell asleep.  But the new do sure looks good!

Aaron knows what's going on.  He is very aware of what's happening around him.  A couple weeks ago he was using his talker at school to tell his classmate "good job!" on a presentation.  The next day he announced that he was "tired and grumpy."  And his nurse agreed, but then he perked up in the afternoon.  In fact, it was the same morning after he stayed up until 4 am.  Tired and grumpy?  I can't imagine why.

The other day I was talking with one of the boys about maybe learning how to change the trach.  We've always been more than open to teaching any of our kids how to take care of Aaron, but also careful not to push them into something they don't want to handle.  Joseph (17), Andrew (14) and Michael (11) are all very capable of suctioning, bagging, increasing oxygen, feeding, venting the tummy and so on.  But none have ever changed the trach, so I was asking about it.  Joseph and Andrew were both adamant that it was something they really didn't want to learn.  They've helped enough times that if they had to, I have no doubt they'd do just fine, but they don't want that responsibility, and that's okay.  Michael on the other hand, did try once, and Aaron was a bit of a turkey and started trying to do crunches and laughing at him. 

So as we were talking, I mentioned that Michael probably would want to do a trach change, and Aaron, who had been lying there watching the exchange, starts nodding his head!  Yeah, he really did!  I looked at him and grinned, and asked him, "So do you think Michael wants to change your trach?"  And he nodded more, and more vigorously!  Michael wasn't around, so later when he was, I asked him, and "of course I want to!"  Aaron knew, he knows his brothers, and he called it.  He knows Andrew and Joseph would do anything to help him, but they're not comfortable with that aspect.  And he knows that Michael wants to do it all. 

One more note about Aaron and Michael:  Michael's science fair projects have been driven by his need to understand Aaron.  Last year, he looked at barometric pressures and how they influence oxygen needs.  This year he also incorporated heart rates and respiratory rates.  As far as his project went, he noticed that even when oxygen needs didn't change, heart rate and respiratory rates increased.  HOWEVER, he also noted that Aaron has become much more stable over the past year.

Last year, Aaron's oxygen needs fluctuated much more than anyone else's did.  This year, his oxygen was pretty stable as his heart and lungs were better able to compensate and he didn't use much more oxygen.  And Michael was the one that realized that, not me.  Pretty incredible. 

Finally, it's heart month.  But for those who live with a congenital heart defect, every month is heart month.  And sadly, many babies don't ever grow up.  In fact, twice as many children die from CHDs than all the childhood cancers combined.  When a child passes, if they are dressed in clothes, those outfits need to be new.  Understandably, new clothes are not at the forefront of the parents' thinking, and so are often pulled from a closet at the hospital.  Primary's closet is empty.  A sweet friend wants to fill that in memory of her own heart warrior and I'm trying to help. 
This was less than $25.

If you would like to donate clothes (with tags on them), you can send them to her or bring them to me, or send money for them to be purchased.  Her Facebook page is Colton's Closet  and you can read more about her son there.  At the moment, sizes 4T and 5T are needed the most, but everything from preemie through children's sizes are welcome.  It's such a little thing for us to do, but means so much to a parent to be able to dress their child, sometimes for the very first time, before sending them away. 

“Awareness is like the sun. When it shines on things, they are transformed.” 
Thich Nhat Hanh