A Work in Progress

A couple weeks ago I got together with a bunch of other heart moms for dinner.  And a painting activity.  Talk about outside my comfort zone.

You should have seen her painting, the one we were supposed to recreate, more or less.

As we started painting, (and it was just the background) there were a lot of depreciating comments, and I recognized the mutterings around me echoed what I was feeling too.

No way I could make something like that.  Even the background wasn't turning out like she had it, and we hadn't gotten to the "real" painting.

But I was feeling a bit dark myself, and rebellious, and maybe not in the best place for feeling down on myself, or letting my friends put themselves down either.  So I said, "yeah, well, that's why she gets paid for this, and we don't.  But I bet she doesn't know how to hear a heart murmur, or tell if a kid needs more oxygen, or what to do when they do."

And you know what?  That's okay.  It's good that she can do what she does, and it's okay that we don't.  But our kids rely on us to do what we've been taught, and this was supposed to be a night of relaxation, or maybe discovery.

Her painting was a lot lighter than mine, but I wasn't feeling "light" at the time.  I made the sky dark,almost foreboding.  I was feeling it.  But then my words came back to me.  It wasn't all that way, and it wouldn't stay that way either, so I added in some lighter tones, just up in the corner, a bit of hope peeking through.  And you know, as I painted it, I was already thinking, "If I did this again, I would do it this way instead of that."  "I would make this line different, put that in a little bit of a different place."  And maybe we do the same thing in our own lives.  "I would say that different, I would go there instead, or maybe not go anywhere."  And that's okay, too.

There wasn't a single painting that looked exactly like hers, or like any other one.  But I can also say, I loved all of them.  They were all somewhat similar, a tree on a foreground with hearts, tones of reds, blacks and whites.  Kinda like all of us.  All of us in the room were bound together by hearts, hearts that weren't "perfect."  For some, it was our own heart, for many others, our kids.  We're on a journey we couldn't have known about before, but we embrace it, the fears, the joys, the triumphs and the sorrows all the same.

In the end, although I saw things I might change, I was pleased with my efforts.  And on the way home, I turned up my song loud, and sang it at the top of my lungs.

It's a work in progress, and so are we.

And Aaron, he's progressing, too.  The only thing we can come up with is that the cold he caught just over a week ago exacerbated both his asthma and his pulmonary hypertension to the point we couldn't help him enough at home.  We think we've turned the corner and are watching today.  It's been concerning for both me and the staff here that he has stayed quite high on his oxygen around the clock, whether awake or asleep, and he's slept a lot.  He's consistently needed 11-12, and sometimes a little more, liters of oxygen.  But early this morning we were able to wean him down to four liters, something very doable at home.  He bumped a little higher when he woke up, but he's still looking pretty good.  So we're hopeful that the end of this stay might be in sight.

Unless I accept my faults I will most certainly doubt my virtues. 

~Hugh Prather

Another Holiday in the Big House

Ready to roll yesterday morning.

It's been a busy two weeks.  Soccer games, last day of school, start of summer, you know, the good stuff.  We've also dealt with asthma (a LOT!) and a cold.  I've started in on some of the things that were put off while working, and maybe I'll get around to posting about them some time, or maybe not.  Sorry, that's just kinda how life is going right now.  I get these awesome (in my own mind) thoughts about posting and then it just doesn't quite make it out of the brain and into reality.

Cutest elephant in the jungle.

Anyway, here we are.  And "here" is back in the Hotel on the Hill.  NOT in my plans for this weekend, at all.  I mentioned he'd caught a cold.  We started seeing signs of it on Monday, but really, he weathered things pretty well.  Thursday afternoon was rough, really rough, but again, we managed to make it through with lots of suctioning and albuterol, and a few bagging episodes.  Thursday night was okay, and Friday was much better.  So I figured we'd take a few extra precautions and heading out on Saturday would work.

Saying goodby to a beloved teacher who is retiring. 

Initially, it did.  William's mom had asked him to take flowers to various family member's graves in three different cemeteries.  We started in mid-Salt Lake and then moved to the Salt Lake Cemetery with plans to continue on to Logan where his Dad's family plot is.  He needed a little more oxygen after an hour or so, but nothing too out of the ordinary, so I didn't even give it a thought except to revise how soon we'd need to switch O2 tanks.  I had plenty with us, so no problem.

But then we stopped for hot dogs before leaving Salt Lake.  And Aaron must have looked out and realized how close we were to one of his favorite places.  All of a sudden, he was in the 70's instead of high 80's.  I did some interventions, and nothing.  Did a few more with the same results.  I switched him back to his ventilator in hopes of opening him up a bit.  Um, yeah, try 60's instead of 70's.  (Someone wasn't reading his script.)

View from Salt Lake City Cemetery

So I pulled out the bag and started bagging him.  It still took about 15 minutes to get him back into the mid-80's.  I told William he needed to drop us off at the hospital and continue without us.  Andrew took over bagging while we drove, kinda like he did just over a year ago.  He's a pretty awesome big brother.

Hanging in the ER.

Once we got here, they called a "red patient admit" again.  Hate hearing that, and knowing that means they're rallying the forces 'cause he's in trouble.  Glad they're all there, don't get me wrong, hate that they're needed urgently.  It still took a while (probably only 15-20 minutes, but still) to get him stabilized.  Did x-rays, ran labs, it looks like the rhino is still the culprit, although he's really not too symptomatic.

For a while last night, it looked like he might end up on the higher hospital vent with a percentage of oxygen flowing instead of the rate of oxygen that we use, but he did manage to avoid it.  He had a pretty good night.  In fact, the team is pretty certain it's time to send him to the floor.  I'm very leary of that plan, and I've weighed in.  They still want to move forward.  I guess we'll see what happens, right?

Life keeps throwing me curve balls and I don't even own a bat.

At least my dodging skills are improving.

Jayleigh Cape

It's Gonna Be Okay

One week apart, and yeah, the first one was earlier.

I've had so many thoughts about Mother's Day this past week, where to take this post, what to say.

My sweet husband orchestrated a very thoughtful lead-up to Mother's Day.  Every day for the past 9 days (yep, nine kids, count 'em) I was given an envelope with a personal note from a child.  Even my missionary in Canada sent one, and somehow I missed it coming through the door.  Probably something to do with the craziness of my life lately that I missed the return address on a personal letter addressed to his dad.

I felt the love, and the reality.  I even teased my 13 year old about his.  He wrote a delightful poem in which he told me twice I was "the bomb."  Now, I know that's used as a wonderful endorsement, but I did ask if that was because I was always "blowing up" lately.  He grinned.

Anyway, back to life.  I'm going to be real here.  There's been some work going on in between my ears lately, hard work.  And so much more to be done.  It's been a rough week.  Okay, a rough few months.  Aaron is as happy as ever, but his body isn't quite as cooperative.  I've been sick, a lot.  I've missed out on so many things, sometimes because he's not stable, sometimes because I can't take the chance of passing along whatever the latest goo is that I've had. And it's hard.  I miss being with people, I miss my friends.  It's hard to tell my kids that yep, once again, something's not going to happen because we just can't take those chances with Aaron.

And then there's today.  I got up and my nurse (fabulous nurse!) gave me report.  He said we'd call it a "win" because we were still at home, and not in the hospital.  Aaron slept all night last night, but he was still battling oxygen sats.  When he's asleep is when we gain ground.  Not last night.  Nine to ten liters all night.

On Facebook, I found a sweet girl who lives down the road was LifeFlighted last night.  Now, the paramedics in our area are all Advanced Life Saving certified, and they're all familiar with trachs and vents and such.  They don't LifeFlight on a whim.

A woman at church who is battling her own set of challenges stopped me and laughed and talked about how God uses our situations to teach us patience.  I think in my case, He knew he needed a 2x4 to hit me over the head with.

This thing we call life is HARD!  Really hard!!  And sometimes it hurts.  Sometimes we feel left out, alone, abandoned, like no one else quite gets it.  And frankly, they don't.  But that's okay.   And that's my new mantra, my new song, literally.

Piano Guys has a song, "It's Gonna Be Okay" that puts it all together.  They don't paint a picture of roses and sunsets.  It's real, it's raw.  Yeah, "doubt is a broken record that plays inside my head," "So many times now I was supposed to tap out, all the walls would fall down around me."  Reality.

BUT it's going to be okay, really.  "No matter what [I've] been through, here [I] am ...  no matter if [I] think [I'm] falling apart, It's gonna be okay."  Yep, it is.  Love the saying, "My track record for getting through bad days (weeks, months, years?) so far is 100%, and that's pretty good."

So I'll keep on working on those thought processes, work on remembering who I am, what I stand for, who I'm in this fight for.  It's gonna be okay.  And if you need help, too, listen to the song, turn the volume up high, and dance like no one is watching.  (And if they are, maybe they'll dance, too.)

Life is hard, but so very beautiful.

Abraham Lincoln

Bereaved Mother's Day

I live in the world of child loss.

It's a taboo subject, one we're afraid to talk about.  It's almost like if we don't give it voice, it can't exist.

But it does.  It's real, and the silence only serves to deepen the pain.

I've now been to more funerals for children than I have for adults.  It feels wrong, it hurts, and I admit, it's scary.

I love these parents, these souls who've given back their most cherished hopes and dreams.  I watch them, knowing that someday I'll be part of that awful club that no one ever wants to join, and knowing that when I do, they'll be there, waiting to hold me, mourn with me, and tell me that yes, somehow, inconceivably, life does go on.

Chances are good, better than good, that you know someone, a mother, who no longer can reach for her child.  Someone who won't get a phone call, email, or hug from their child next week on Mother's Day.

In the past week alone, two friends have joined this sorority.  One knew ahead of time, like I do, that her time would come.  The other did not.  Both grieve, and I ache that I can do nothing to help.  And even when you know it will happen, no matter how much time you had, it's never, never enough.

Reach out to her, say the name.  Let her know you haven't forgotten.  One of my biggest fears is that after Aaron passes on, his memory will, too.  He won't have children and grandchildren to tell stories about him.  He won't have a wife who will miss him.

When you lose a child, you lose a future.  So take a risk.  Yeah, she'll probably cry.  But you're not reminding her that her child died.  She knows that, she knows that in ever single fiber of her being.

You're reminding her that her child lived, and you remember.

There is no footprint too small to leave an imprint on this world.

Author Unknown