Tuesday, December 17, 2019

I Want to Remember, I Don't Want to Forget

December.  Christmas Time.  The most “Wonderful Time of the Year.”

For so many years it was my favorite time.  In lots of ways, it still is.  The lights, the sounds, the smells.  Friends, family, surprises under the tree. Celebrating the birth of our Savior.  It’s magical, sacred, glorious! In my 50 years, I’ve only slept a handful of times on Christmas Eve. As a kid, I wondered what I was getting.  As a mom, I can’t wait to see my kids’ faces. Yeah, it’s special.

But life has changed for me.  Or life changed me.  I don’t know.  I still love the music, the decorations, the Spirit of the Season.  But I’m also hesitant, frightened, and a bit sad.  Nine years ago I was praying for just one Christmas with Aaron.  Now, I keep praying for “one more”.  And hoping that it’s many more.  

Winter is hard on kids like Aaron.  So many in the hospital, so many who have passed away in December, often from a virus.  Yeah, and the common cold is the most common culprit. Most years we spend part of the month in Primary’s.  Last year we raced in, almost too late, and fought for ten days to keep him breathing.  Five years ago, we spent the days before Christmas, Christmas day and the week after in the PICU, coming home on New Year’s Eve.  That was the year our children voted unanimously to put off Christmas so Aaron could be part of things.  

The reality is, someday Tiny Tim’s crutch will be alone by the fireplace, and no one wants to deal with that before it has to happen.  
So along with my smiles, I find myself fighting tears.  ‘Cause this is hard.  Aaron is declining.  He has been for the past year or two.  It’s slow.  I hope it’s very slow. 

But it’s real. We are getting poorer results while giving more support than we ever have before.  

And because I want to remember, I don’t want to forget, I try to store as many memories of the good times while I can.

I want to remember the look of joy on his face as he sees Daddy come into the room.  

I want to remember him imitating Linnaea’s cries.  He was so funny.  She was upset, and he chimed right in, then stopped and looked at us to see if we noticed how cute he was being.  And then went right back to it.  Newborn cries in stereo, without twins!  

I don’t want to forget the looks he gave David when David snuck brownie crumbs into his mouth.  If looks could kill...  And he wouldn’t take his eyes off Big Brother for quite some time, in case he tried it again.

I don’t want to forget how excited he gets when we get him ready for church and put him in his wheelchair.  He likes going out, but he really gets going on Sunday mornings when he’s all dressed up.  Buckling the straps is a challenge as he wiggles and giggles through the process.  

I want to remember how he laughs at his own jokes, and how silly they are.  He loves to tease his brothers, and is quite the imp when it comes to “helping” them with his cords and tubes.  He often laughs so hard that the ventilator alarms, thinking that he’s breathing too fast.

I want to remember the look of wonder when I first turn on the flashing penguins above his bed.  

I don’t ever want to forget the cuddles and the look of determination, along with pain, when he endures yet another IV poke, or other hard time, but does so with an expression of trust that as long as I’m there, he’ll get through.  

I want to remember him “leading” the music down in the congregation on Sunday while I’m up front.  

The wiggles and giggles in his bed.  (Did you know the cool kids don’t lie upright in bed?  It’s sideways with feet hanging over, always.). 

The running and spinning with his brothers in his wheelchair.  The “supervision” of basketball games on the driveway and soccer tournaments.  

The drives in the car where sometimes he manages to unbuckle his seatbelt, making it so we have to pull over to refasten him.  

How he “helps” with diaper changes and g-tube feeds, and laughs at you the whole time.  

Sunday was our Christmas concert.  That’s really where I feel the Season begin.  And this was the first year I brought him.  I don’t want to not have a memory of him there while I sing.  And so this year, he came.  He sat and played with Daddy through the music and really enjoyed it.  And I have another memory to tuck away, safe and sacred, and treasure when there are no more memories to make.  

At a Christmas party two weeks, a friend was telling me about how her son’s condition has progressed to only soft foods, and they’re not far from a feeding tube. I had no words for her.  It’s natural to tell someone that things will get better, it’s just a bump, it’ll improve.  But it won’t for him, for her.  And I’m starting to realize that we’re in a similar position.  

Oh, I’m not discounting that things can’t get better here and there, but overall, we’re on a downward trajectory.  That’s what progressive diseases do.  They continue to get worse.  They don’t get better.  And “someday” will come, sometime.  And I don’t for a minute think I’ll be ready.

But in the meantime, like a squirrel storing nuts for a long winter, I’m packing away as many thoughts and memories and pictures as I can.  

You remember someone said that God gave us memory so that we might have roses in December.... ~J.M. Barrie


  1. Having walked this journey, I believe the day will come where you will be ready to make the hard choices for Aaron's sake.

    You'll never be ready for your own. I'm still not ready for Lily to be my angel and it's been three years. Nonetheless, helping her cross that bridge remains one of the most sacred honors I've ever had.

  2. Such a touching post! And I understand. And I continue to pray for Aaron. And you. Hugs!

  3. Rebecca, I understand your fear, and I am very sorry to hear Aaron's health has been declining. My son Caleb (FT13) passed away at 9 years of age this May. I have always related to what you write. I hope Aaron lives many more years.

  4. I hope you had a good Christmas and New Year's. I keep checking for blog updates, hope all is well and life is busy in a "good way." :-)