Sunday, November 10, 2013


Friday, a typhoon hit the Philippines.  I have my own memories of being in one when we lived there.  We weren't in danger, but let's just say as a four year old and afraid of the dark, I was plenty scared.

Today though, there are moms and dads who put my fear in a different light.  There are still several missionaries unaccounted for, and I can not imagine the aching feeling of not knowing where my son or daughter was, or how they were doing.  I can not imagine the exhaustion that comes from that kind of worry.  For me, it's the unknown, the lack of ability to do anything to help that's the worst.  The very, very worst time for me in Aaron's journey was the time when he was in the NICU and I couldn't be there all the time with him.  That was worse than heart failure, pneumonia, and the major issues we've seen this summer.  Not knowing, not helping, not being there.  And that's where these moms and dads who have sent their children out to help others are currently sitting.  Please, please pray for them, for their children, and for all the others who are suffering over there.

Aaron is doing well here.  He's back to his old tricks:  staying up until 4 a.m. (last night), sleeping through school most of the week.  On Friday, he was making some really weird breathing sounds.  And they were loud enough that I could hear them in the next room.  Generally, that's not a good thing.  I went to investigate and found him blowing raspberries!  Yep, he was thinking it was pretty funny.  Last night, he was laughing around his trach.  We haven't had this for so, so long.

I remember a conversation with Dr. G. when we were getting ready to bring him home from the NICU.   I was still trying to get a feel for how long we might possibly have, and how to tell when it was drawing to an end.  He told me that he had seen many do well for a while, six, 12, 18 months, and then their bodies would just be fighting too hard.  I asked him if I would see it coming.  He assured me that yes, I would know, I would see it happening.  It was more rare for it to be sudden in a case like that.

And that's what I've replayed over and over as our hospitalizations have gotten more frequent, longer, and with fewer options.  That's the conversation I heard again in my mind when cardiology started talking about needing to have a new, higher oxygen flow baseline for discharge from the hospital.  That is why I have been so thrilled with the idea that his asthma is contributing more than we thought it was.

He still struggles to lie flat for long periods of time, but we all breathe better when our heads are up a bit.  And we've used his albuterol a couple of times since discharge.  But his demeanor, his energy level, and even (or especially) the noises he makes now that he's got more energy all point to very good times ahead.

One last note, Joseph's tonsillectomy has been moved to this Tuesday.  He's pretty nervous about dealing with the pain afterwards.  Can you please keep him in your prayers as well?
You are not alone on this journey. Your Heavenly Father knows you. Even when no one else hears you, He hears you.
Dieter F. Uchtdorf


November 4th - I'm grateful for Michael's enthusiasm.  He is so excited about just about everything.  He brings a freshness, a newness to simple joys.

A quote a day from 2013 conferences
with space to jot a thought or two.
November 5th - I'm grateful for helpers in the insurance world that will work hard to figure out how to get Aaron the care he needs.  The hospital dentist isn't listed as a provider for our insurance, but the representative took my name and number, GAVE me HER name and number and promised to figure out something.  Then called back bright and early the next day to say it was all fixed.

November 6th - I'm grateful for home computers and the internet that let
me put together meaningful, lasting gifts for my children.

November 7th - I'm grateful for Matthew and Jonathan, and for their quirky sense of humor.  These boys make me laugh.  It's so fun to have "almost adults" around.

November 8th - I'm grateful for my kids' overall good health.  When I went to fill out pre-proceedure paperwork for Joseph's surgery, I was dreading it.  Aaron's takes a good 45-60 minutes.  Joseph's was simple, less than three minutes, start to finish.

November 9th - I'm grateful for our special needs community.  In happiness or sorrow, we "get" it.  And it was so much fun to take "hero" pictures yesterday for a fundraising calendar.  Michael was my hero yesterday as he worked hard to help Aaron in his pictures.  Both dressed up, and Michael played a star role as a supporting (literally!) actor.

November 10th - I'm grateful for the gospel, for the peace and understanding it brings.  There are simply not words to express.  I would not be me, I could not do the things I do, without it.

1 comment:

  1. Hugs to you and your family. I am SO happy to see Aaron is doing better! I love his little laugh! Bless all of you.