Sunday, January 26, 2014

Hard Times, Good Times.

When you stop and look at things, it's been kinda rough around here the past few months. Aaron has dealt with heart issues and been rushed into the PICU twice in the past six months.  William's father passed away.  Joseph had his tonsils out and Michael is heading that direction.  William's mom had extensive surgery and is now recuperating in Arizona. Jonathan's wisdom teeth needed to come out, and then he developed dry socket in two spots.  My van decided to go on strike this past weekend, and no, we don't know why yet.

Now David is coming home tomorrow with a torn ACL and  needing surgery.  His one year mark for his mission will be four days later.  He needs surgery.  And this is on top of so many other issues.

So where are those blessings?  There's a common saying that "God will not give you more than you can handle."  That is just not true.  At least if you listen the unspoken rest of the sentence "on your own."  He absolutely will give you more than you can handle, alone that is.

But the beautiful part is, we were never meant to handle things on our own.  We have ministering angels, both seen and unseen that help us.  Those angels take the form of a sister who gets your car back home from one hospital while you take an ambulance to another. Your mom who spends the night and next day at the hospital while you attend to other pressing matters.  A neighbor who, out of the blue, offers to build a ramp.  A dedicated medical professional who listens, validates your feeling that one test is not necessary, and helps develop a plan for others.  A pediatrician, fresh from a traditional office, who sees things through a different lens.

It's the special needs community that responds within 28 minutes with the offer of not only one, but TWO wheelchairs, and even delivers one to your door for your older son.  It's the online friends whom you've never met in person who lift up your family in prayer.  It's a visiting teacher who drops what she's doing to run your child over to school, so you don't have to package your youngest for the trip.  It's the PICU nurse that you haven't been assigned to in over a year, and the custodian from Africa, who both tell you that they'll be praying for you and your son.

It's the neighbor who is also an orthopedic surgeon who makes house calls to see your son within hours of his return.  It's the many, many prayers offered around the world for comfort and healing.  It's the neighbor across the street that comes to snowblow your driveway because the older boys are gone, the snow is too heavy for the younger ones, and you can't go outside without taking Aaron out.

And I know there is also help from the other side as well.  That is not so easily documented, but real and felt all the same.  And this is just a touch of the blessings that have come our way.  I am overwhelmed by the goodness of God, of His love and attention to the details of our lives.  I do feel down and burdened from time to time, probably more often than I should.  Believe me, I know how to throw a pity party.  But He is there.  He has broad shoulders.  He has given His angels charge over us.  And He will bring us through.  What a blessing that is.

I, Nephi, will show unto you that the tender mercies of the Lord are over all those whom he hath chosen, because of their faith, to make them mighty even unto the power of deliverance.   

Tuesday, January 21, 2014

A First Time for Everything, or This Mama's a Bit Gun Shy

He was pretty happy, just thinking it was also nap time.
Aaron has been (or had been) off for a few days.  On Tuesday, I pulled a bunch of blood out of his trach.  Not just a little, quite a bit.  Like way more than I've ever seen before.  That prompted a quick phone call to the office to ask for a day off and another to the hospital to check on some things.

Then on Friday afternoon, just as I was getting things lined up to go to a friend's wedding, his heart rate shot up.  It wasn't crazy, emergency high.  Just 20-30 beats above what it usually is.  Yeah, fever-coming-on high.  So I watched.

Wanna talk about compulsive?  I think taking a temp every 15-30 minutes is a bit of overkill, but I was doing it!  (And maybe closer to the 15 minute mark.)
It was a low-grade fever, just about a full degree above where he usually sits.  And there was some color in the stuff we were pulling out of the trach,not much color or quantity.  But I was still on edge.

Saturday things continued kinda along the same path.  By Sunday, I'd had enough.  While William and the kids were at church, I talked myself into thinking that it was possible there was something more going on.  When they got home, I told them I was heading up to Primary's to get him checked out.  They told me they'd see me sometime next week.  Yeah, it's kinda become a familiar refrain.

As we left, he was on five liters of oxygen, but before we even hit the turn-off for the Lone Peak Fire Department, we were using seven.  I even briefly considered turning in and telling them I saved them coming to get us, but we needed a ride anyway.  But  I also figured it was a Sunday afternoon and traffic was going to be pretty light.  I could probably make it, so we went on, and I tried to tell him to cool his jets!

When we got there, he was between five and six liters, but starting to be pretty smiley.  We talked about admitting him, but there are so many germs up there that I told them if it looked like it was just viral, I was pretty sure I could handle things at home.

It took quite a long time to get his labs and x-rays.  I always make sure I see the x-rays when they take them.  Yep, it looked like Aaron:  Cloudy with a chance of junk.  BUT, unlike the last two times we've done this, instead of deciding he wanted more and more and MORE of that lovely oxygen, Aaron was content with less and less.  By the time the labs came back (and were perfect!) he was actually down on two liters.  TWO!!

So yep, they gave us our marching papers and we were outa there!  First time, VERY FIRST TIME, we've gone to the ER for anything except minor stitching and come home again.  Yeah, I think I'm a bit gun shy here.  But that's okay.  It's all good.  And he was very smiley tonight, too.

Don't refuse to go on an occasional wild goose chase -
 that's what wild geese are for.  ~Author Unknown

Friday, January 10, 2014

"And Who is My Neighbor?"

"And who is my neighbor?"  According to the parable, a certain man fell among thieves and needed help.  And the one that came to the rescue was not the expected person.  Now, I'm not trying to say that we've had thieves here, but there have certainly been challenging times.  And it's hard, very hard, to ask for help.  We've always tried to take care of ourselves, be independent, but sometimes things are beyond what we can do on our own.  And a Good Samaritan found us.

Last Sunday, a man in our ward (local congregation) came up to me and asked if we were still needing a ramp for Aaron.  Yeah, we were.  I was planning on building one over Thanksgiving break, but you know, Aaron had other plans.

We spent it (and the week before and a few days after, just for good measure) fighting to keep him alive as he battled a cold.  You know how you feel lousy and say you feel like you're going to die when you get a bad cold?  Well, he takes it a step further and actually does start down that path.  So that kinda took priority over the ramp.

So then he asks, "Can I come over and build you one tomorrow?"  What??  I nearly cried.  I mean, it's REALLY hard to get in and out of the house with Aaron and all his equipment, and has been for over three years.  In the past, we just didn't go much of anywhere, especially in the winter.  This year has been harder because he has school every day.  And it becomes overwhelming, exhausting, day after day.
On his way to school with his nurse.  So much easier!!

And then he did.  He and William spend Monday morning putting in a ramp, and it's WONDERFUL!!  Beyond wonderful, actually!  It would have taken us so very long to do it.  But this man had the tools and the expertise and it just came together.  As they called me out to look at the finished product, I heard the bus brakes.  Perfect timing.  And Aaron rolled right up it, into the house.

Such a blessing.

Which now of these three, thinkest thou, was neighbour unto him that fell among the thieves?  -Luke 10:36

Sunday, January 5, 2014


Aaron is a Sunbeam!  In our church, the children change class on the first Sunday in January.  Those who have turned three before January 1st are called "Sunbeams."  

I have to be honest, I never gave his first day of church class much thought.  I didn't think about it happening or not happening, because it just wouldn't.  But funny, he's here, it came, and he went.

He had a good time with the singing time, smiling at the music.  It was so good to be doing a normal, growing-up thing with him.  

And as they left, each child got a smiley face sticker.  Since Aaron is a "don't touch" at church, she put it on the oxygen tank.  Funny, it made my heart smile, too.

So what do you think?  Think he makes a pretty good Sunbeam for Jesus?  I do.  He certainly brightens my life.  How about yours?

    Jesus wants me for a sunbeam,
    To shine for Him each day;
    In every way try to please Him,
    At home, at school, at play.

    A sunbeam, a sunbeam,
    Jesus wants me for a sunbeam;
    A sunbeam, a sunbeam,
    I’ll be a sunbeam for Him.

    Jesus wants me to be loving,
    And kind to all I see;
    Showing how pleasant and happy
    His little one can be.

    A sunbeam, a sunbeam,
    Jesus wants me for a sunbeam;
    A sunbeam, a sunbeam,
    I’ll be a sunbeam for Him.

Friday, January 3, 2014

Wheelchair Snow Tires

Before I get started, let me say I didn't come up with this on my own.  A friend of mine posted the idea on Facebook.  Unfortunately, I can't remember who it was.  If you want to speak up, I'd love to give you the credit!  Update:  Valerie Ford, another special needs mom who lives nearby was the one that posted the idea.  Thanks for letting me know, and most of all, thanks for the idea!!

Anyway, it seems (if I'm remembering correctly, always kinda iffy) that in France people use zip ties on bike tires to help with traction in the snow.  My friend suggested this might work for wheelchairs, too.

The road is just past the pine trees you
can see in the middle of the picture.
Since we have this wonderful driveway that goes down to the bus, I figured we could use some help.  We try to keep it cleared, but that means getting out and shoveling at 5:30 a.m.  Yep, not exactly my kids (or my!) favorite time to be up and out in the snow.  Plus, there's also the issue if it continues to snow, or if it got driven on before we got to it, or, or, or . . .   You get the picture.

So I figured, what's there to lose?  I grabbed some 8 inch zip ties (also called cable ties) and put them around his wheels.

Guess what?  They work great!!  Snow tires for a wheelchair, complete with studs.  We have lost a couple here and there, but at $3 for 100 from Wal-Mart, I think we'll do okay anyway.

Safety is a cheap and effective insurance policy. 
 ~Author Unknown

Thursday, January 2, 2014

Weighted Blanket for Almost Nothing

Prior to my introduction, (or forced initiation) into the special needs world, I had never heard of a weighted blanket.  I've since learned that many kids with challenges use these to help them feel in control, or give them comfort.  They're especially widely used in the autism or sensory disorder community.

Aaron doesn't struggle with those, but for quite a while now when he gets really tired, he gets very agitated.  He'll rock back and forth, almost violently.  So I was trying to find something that would help him calm down.  So this what was recommended.

But I wasn't sure he'd really like it and I didn't want to spend a lot of money on something if it didn't work out.  You can buy Poly-Pellets from a store like Joanns, but they're about $7 for two pounds.  The plus side is that they're machine washable.  The down side is that Aaron needs a blanket weighing about five pounds.  I'm thinking that's a bit of cash for something that might or might not work.  (For children, the recommendation is about one pound of filler per ten pounds of the child's weight, plus one more pound.)

So I went looking for something else I could use and found beans!  Yep, we've got some pinto beans sitting around.  I'm not sure, but I think they came from William's grandmother's food storage.  Even if they didn't, you can tell by the color contrast that these are very old!

I also had some fun fabric down in the basement.  Even better, one of the pieces was already blocked out in squares, so I didn't have to measure and mark lines on it.

I counted out the squares I'd have (48, six across, eight down) and divided five pounds by that.  Then used Aaron's scale to figure out how much per square.  Turned out to be about a quarter cup.

I sewed the two pieces of fabric together on three sides, right sides together and then turned them right side out.  Then I sewed columns down the fabric.  I put 1/4 cup of beans in each column and sewed across the top of the square.  Repeated until all the columns had been turned into squares.

Then I turned the top edges under and just stitched across.  You could also hand stitch it with a blind stitch, but that was more than I wanted to do.  Plus this way the seam is stronger. I have more faith in my sewing machine to do a strong stitch than I do in my own hand sewing.

The beans are old enough that I figure even if I soaked them for days, they'd still not sprout.  I have washed it a few times, but only on a delicate cycle and air dried it.  I have no desire to beat my washer and dryer to death.
And how does he like it?  He loves it!  It really helps him calm down and go to sleep.  I even finally took it with us the last time he was in the hospital and I think it helped him relax.  His nurses loved it, too.  Frankly, it feels like a hug.  Plus, the sound of the beans is almost musical.  Naptime anyone?

Think what a better world it would be if we all, the whole world, had cookies and milk about three o'clock every afternoon and then lay down on our blankets for a nap.

Robert Fulgham

Wednesday, January 1, 2014

2013 in Review

2013 has been a good year for our family.  It's brought a lot of change but it's been good change.  Yeah, I'm afraid this is probably going to sound a bit like a family "brag letter" that everyone hates. 

But frankly, it's also how I remember what happened, and I want to remember the good and let the bad fade.  You know those older women that you run into and they say, "cherish every moment" and "I loved every second of when my children were at home."?   I don't think they're lying, but I also don't think they really went "Yipee! Someone's throwing up again!!" or "How fun, we get to go get your arm set AGAIN, I just love paying for doctor's visits!"  I think the trick is in remembering the happy and learning from the challenges.  And besides, I don't want anyone airing my dirty laundry.  I'd rather it just be washed.

So here goes:

Aaron is still with us!  Yes, that's a big one.  In March, he celebrated his 1000th day on earth.  2013 was a rough year for him.  After some relatively small blips in 2012, he spent much of 2013 in the hospital.  In fact, from April through the 1st of December, he was in at least once a month, sometimes more.  But we think we have some new answers and we're hoping for better times ahead.  He's very interactive and loves his toys.  He's going to preschool now and gets so excited when I'm getting him ready!  I think his favorite part is the sensory room.  He does tend to want to fall asleep partway through the day.  I've tried to tell him he's not in high school yet...

Michael (7)  is an amazing big brother to Aaron.  He's growing up sooooo fast.  He's in 2nd grade and really loving school.  He plays soccer and can't decide which is his favorite position:  keeper where he keeps the other team from scoring, or forward where he can score goals.  He's also looking forward to his baptism this summer.  He was pretty disappointed when he found out that he couldn't go with Mary and David on their missions.  He loves to get out and run and play and ride his bike.

 Andrew (10) is having a lot of fun playing soccer and futsol competitively.  His team works really hard together.  He's also enjoying school.  His teacher says he's not only got a natural aptitude for math and science, but he has the ability to explain it in ways that the other kids get it, too.  What a blessing that is.  He's active in his Webelos den and on his way to earning all 20 of his activity pins.

Joseph (13) made the Musical Theater class at Timberline and is looking forward to the Men's Chorus class that starts next semester.  He left competitive soccer this year to be able to participate more in the drama department at the middle school.  He's in band and switched from trumpet to euphonium.  For those who remember Mr. Magorium's Wonder Emporium, that's what Mr. M. plays.  He also got his tonsils out this fall which makes sleeping so much more restful for him.

Matthew (15) is a sophomore and loves the drama department at the high school.  He made the prestigious Productions Class and is enjoying participating in many activities including plays and the Shakespeare Festival.  Last year at Timberline, he had a main part in a rewrite of Much Ado About Nothing.  He and Joseph also play on the same rec soccer team, having a lot of fun without the extra practices and pressure so they can devote more time to their drama endeavors.  He's  working on his driving hours, hoping to get his license this next summer.  Yea!  Another driver to help out around here!!

Jonathan (17) is in his senior year at Lone Peak.  He was selected as one of the ballroom team captains and is working hard with his team to get ready for Nationals in March.  He and Deborah also compete together and have a lot of fun performing.  He was selected as Lone Peak's Math Sterling Scholar and is focusing on college and scholarship applications.  All in all, we don't see a whole lot of him, but he's still pretty handy with helping out.

David and Mary left BYU after fall semester to serve missions for the LDS Church.  David was called to serve from January 2013 to January 2015 in the Oregon Portland Mission.

 Mary entered the MTC  (Missionary Training Center) in April of 2013 and will return in October of 2014.  She's serving in the Canada Vancouver Mission which covers almost all of British Columbia.  We miss both of them and it was so wonderful to talk to them on Christmas and Mother's Day, but we are grateful for their service.  In blessing the lives of those they're near, we are also blessed here at home.  It's great to get their emails and see the growth in their own lives. 

Deborah returned to BYU this fall after taking two years off to earn money for school.  She's working towards a degree in Exercise Science and really enjoying being back in the learning environment.  She spent two years as a vampire, working the graveyard shift, and it was a little harder to get back to a more normal schedule where she actually saw the sun.  But she had a very successful semester:  one A- and all the rest A's.  And she's also having a lot of fun dancing competitively with Jonathan. 

William and Rebekah just try to keep up with everyone.  We spearheaded a large family reunion in June for William's family to celebrate his mom's 70th birthday and his parent's 50th anniversary.  It turns out that the timing was very fortuitous.  Shortly after the reunion, his father was hospitalized and passed away.  We'll always treasure the memories of that week.  Between that, work, Aaron's hospitalizations and just life, we have kept very busy. 

We are so grateful for the blessing and lessons of 2013.  We are mindful of the Lord's tender mercies that are in our lives everyday, and especially for His lengthening of Aaron's life and allowing him to still be here in our home.  He brings into sharp relief the tenuous nature of life and the reality of the world to come. 

Year's end is neither an end nor a beginning but a going on,
 with all the wisdom that experience can instill in us.  
~Hal Borland