These Days

These days are so different from life as we have known it for so many years.  These days Brett watches tv from morning to bedtime.  He eats all of his meals there never venturing into the rest of the house or outside.

These are the patio chairs we sat in most summer evenings watching the birds and commenting on the state of the garden, our plans for the days and weekends,  The first thing he always did was turn on the bird app to see who was making all of the various bird calls we heard.

Now, I sit here alone.

I still watch the birds and the state of the garden, but I struggle with feelings of deep sadness so it has also become a place to let the tears flow.

In trying to understand why he no longer wants to come out of the tv room, I have concluded that this is the way he is dealing with the Amyotrophic Lateral Sclerosis (ALS) diagnosis and I respect that.  I can't even imagine how I would deal with such an overwhelming diagnosis.

Keeping connected to the garden helps to bring a slight sense of normalcy to the days while also providing a distraction from the constant caregiving.  The tiny fig plant that was given to me by a neighbor a few years ago is now bearing it's first fruit.  

The Meyer Lemon tree looked completely dead after spending the winter in the garage.  I gave it a few weeks on the patio and got tired of looking at it so I chopped it down to a more manageable size to be able to carry it to the trash can.  Before I got it there, I noticed a few green shoots popping up at the base.  I decided to let it spend the summer on the patio to see what would happen.  It is now close to two feet tall and looking as healthy as can be.  That was a happy surprise.  Now to see if it produces any lemons.

The garden has more weeds than I like these days.

When time allows I work on eradicating them.

As I tug and yank on them I visualize eradicating ALS.  Wishful thinking, I know, but sometimes it helps for a moment.

Bringing in a few flowers after my weeding sessions is a nice bonus.

Earlier this summer Jaxson and his daddy came for a visit.

Brett has changed so much since they last saw him at Christmastime.

I know it was sad for them to see.

We found many moments to create happy memories along the way.

Most importantly we celebrated Jaxson's 13th birthday.

He and I took several walks through the woods.  One day we sat on the swing and I smiled when he wanted to turn on the bird app.  We talked and talked.  It was wonderful to have this one on one time with him and learn more about his life.

Another exciting and happy moment was when we found out he will become a big brother later this year.  We have since found out that he will have a little sister.  Being a boy mom and grandma all these years I am over the moon to think that I can finally buy all of those adorable little girl clothes!!

I know that Brett is excited too, although he has expressed his fears of not being here for the baby's birth.  I pray that is not the case while knowing that he has reason to think this way.

Since January he has changed so much.

At his recent visit with the ALS team we learned that he now weighs 145.  Despite me doing everything I can to pack calories into his food, this disease speeds up the metabolism.  The dietitian told us that he would have to consume 2600 calories a day to maintain his weight.  That is a real struggle when the swallowing muscles are atrophying.  Scary choking incidents happen much too frequently.  His ability to cough effectively is nearly nonexistent so we now have a cough assist machine and a suction machine to help deal with this.

We also learned that his lung function/breathing numbers are down since our January visit.  Next month he will be getting a feeding tube.  If we wait much longer his breathing won't be good enough for them to safely do this procedure.  

These days are unpredictable, often exhausting, sad and not at all what we had hoped our first year of retirement would be like.

Saturday was our 45th wedding anniversary.

I realize that we are now in the "sickness" part of our vows.

Looking through our wedding album I had to laugh at this final photo in the album.  Partly because of how wedding photos have changed through the years and partly how that hand signal I am using has new meaning all these years later.

These days ALS is trying hard to steal Brett's voice.  Many times all that comes out is a whisper.  Most times I think it is tiring for him to speak so he often points to things or gives me a thumbs up sign.  Brett always loved to talk so this is particularly sad to me.

At bedtime he wears a non invasive ventilator to help his breathing while he sleeps.  Once we get the ventilator mask on and get him tucked into bed I want to make sure that he is comfortable before shutting out the light.  Trying to understand anything he says with the mask on is challenging so once he is situated he gives me two thumbs up followed by two okay signs.  

45 years ago I could have never imagined the new meaning that simple hand signal would take on.  So much has changed, but the LOVE remains and for that I am truly grateful.