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.

Simplifying Easter Dinner

Easter dinner was made simpler this year.

As we continue to establish a new normal, day to day life with ALS can be unpredictable and, at times, exhausting.

Wanting to get the local family together to celebrate Easter and visit became the goal.  Currently Brett is most comfortable at home so it was decided to host the gathering here, just in a simpler manner.

Rather than make the traditional ham dinner, we went for everybody bringing either an appetizer or dessert.

I did make the carrot cake that has been a tradition for many, many years.

Not long before the Easter plans were drawn up, I had to call EMS after Brett fell and hit his head on the dresser.  His legs have already become so weak that he wasn't able to get up.  I was having no luck helping him up as I was trying to also hold a towel to his head as it was bleeding profusely (as head wounds do).  He took his first ambulance ride to the hospital.  Fortunately, there was no internal damage and his head wound didn't require stitches.  I must admit when I brought him home at 4 a.m. I was a nervous wreck wondering how I was supposed to get him back into the house and safely to bed.  Thankfully, our son was able to assist me.  It made me wonder how the elderly manage such things.  

This event has made me much less confident in leaving him alone for any length of time.  I feel like my 69 year old husband has aged twenty years in a matter of months.  😢

Anyhow, I share this to further explain my need for simple this Easter.

Now, back to that carrot cake . . .

Once it was done and safely under it's cake dome, I went outside to check on my azaleas.  It is their season now and all through the neighborhood they are blooming beautifully.

I found one large branch pushing against the side of the house so I did a little pruning.

Two simple bouquets.

Flowers, a few colored eggs and colorful napkins were all it took to add a bit of holiday cheer to the table.

While in the garden, I snipped a few sprigs of spearmint to add to my bowl of berries.  The ones that look like underripe strawberries are actually pineberries.  They are mostly white with a hint of pink.  After seeing them many times in the grocery store, I decided to give them a try.  Have you ever eaten them?

Life isn't always easy, but I am reminded that among the hardships there are blessings.  I want to remember that along the way.

Let me share a few with you today.

Our nephew's wife.  Despite mourning the recent loss of her uncle, she showed up with ham sliders, pasta salad, deviled eggs and her wonderful sense of humor.

Nephew & Sister-In-Law

Our nephew's sense of humor pairs well with his wife.  Despite everything, they kept us laughing which is such a welcome thing right about now.  

In the 44 years of my marriage, my sister-in-law & I have shared the ups & downs of life.  Too often lately she has become my shoulder to cry on.  Luckily she has broad shoulders. :). She showed up with the potato dish that has also been a tradition for many years & two big salads.

The oldest & youngest family members.

Brett's brother has had numerous surgeries and lives on pain meds to manage it all, yet he shows up every week to play games with his brother.  This week he is coming twice as I have an appointment for two root canals on Wednesday. :(

Their granddaughter and her boyfriend are the youngest of our group.

They add a fresh perspective to our gatherings as they talk about all of the things they are doing and planning for their future.  Oh to be young again. ; D.

And, finally, dear Brett & our oldest son.

Our son lives fairly close by.  He shows up for every appointment and comes over at least 3 times a week.  He's fabulous at researching things and is constantly coming up with new ways to keep his dad safe and figure out how to deal with things as they come along.  He has very willingly become another caregiver to his dad.  

If I could take away this terrible disease, I would do it in a millisecond.  Since I am unable to do that, I plan to do everything that I can to make this road as comfortable and meaningful for Brett.  So many people have told me that we will be carrying a heavy load with this diagnosis.  I can see that already.  I am so thankful to have others in my life to help carry that load.

The Sweetest Signs of Spring

Flipping the calendar to March was a real mood elevator.

The colorful flowers and the mama bird with her nest of eggs offers hope for the beauty of the upcoming Spring season.  The card attached to the calendar was made by my sister.  I think it pairs so nicely with the calendar.  Together they are a real bright spot in the kitchen right now.

In my last post we were anticipating a snowstorm.

It came and dumped nearly a foot of snow.  The most we've seen at one time since moving to North Carolina more than twenty years ago.

It was pretty, but overstayed it's welcome in my opinion.  

It seems like I am reminded almost daily about how much our lives have changed.  Realizing that I was to be the one totally responsible for removing all of that snow from the driveway was a bit daunting.

Usually our snow melts so soon after it falls that it rarely requires shoveling.  This was different.  The week before we had an ice/sleet storm.  The remnants of that were still hanging around on our shady side of the street.

Snow is so rare that I didn't even own a pair of winter boots, so I put on my gardening boots, grabbed the snow shovel and went to town.

I learned a few things along the way...

I'm a lot older than I was the last time I shoveled snow.

I needed to own snow boots even if they rarely get worn.

I have taken care of that which will probably ensure that we will have no more snowfall until they are totally out of style.

Anyhow, once the snow and ice finally disappeared, I put those spring bulbs (above) into my grocery cart.

I planted them right outside the window.

I make sure to glance at them several times a day.

A small investment with big returns.

As someone who tries to look on the bright side of things, it has been a challenge lately.  Watching my husband deal with ALS is just plain SAD.  There is no getting around that.  

In trying to keep looking on the bright side, I am vowing to spend more time working on my gardens.

Most of our time is spent at home now.  Even though I am happy@home, I find I am going a bit stir crazy at times.  Those are the times I head outside.  Gardening has always felt like therapy to me.  At this time of year I always envision beautiful bouquets of flowers and a healthy harvest of blueberries.  My current efforts have been in trimming the hydrangeas and fertilizing them along with the blueberry bushes.  

The bunny in the pot is happy to see the chives and oregano coming to life once again.

The earliest signs of Spring are making their way into the house too.

A little vignette to gaze upon while washing the dishes.

I would like to say thank you for your kind words and prayers on my last post.  It means so much and makes this journey a little easier to bear.

💕

New Year ~ New Journey

Pansies on Christmas Day

That day now seems like a million lifetimes ago.

So far, I'm not liking 2026 at all.

Since the year began there have been many appointments with a neurology specialist to further investigate the symptoms that Brett experienced all of last year.

Many questions were asked and many tests were performed.

The conclusion is that he has ALS (aka: Lou Gehrig's Disease).

Yesterday we met with the Doctor who spent a long time explaining what to expect with this disease and answering our questions.

After that we met with the nurse, physical therapist, occupational therapist, speech therapist and nutritionist.  Apparently, it takes a large team to manage the symptoms of this disease.  All were very compassionate and informative.  Still, we left feeling completely overwhelmed.  

We learned that there are only two drugs for this disease.

Neither cure, rather they hopefully slow the progression.  One is extremely expensive.  We will go through a process to see if we can receive it more affordably.  The doctor is a specialist in ALS and has been at it for many years.  He said he was sorry that he didn't have more to offer and told us that they need better drugs.

I've put off this post for awhile.

I'd much rather be chatting about happy things ~ normal things ~ boring things.  Basically, anything but this.  

But, this is now our reality.  A new journey.

As I struggle to find my footing, I can see how blogland will be a welcome distraction... just like it has always been for me.  I hope it will also be a way for me to continue to look for the bright spots even on the hardest days.

Ordinarily the first place I head when life threatens to overwhelm me is the garden.  The January garden didn't seem like a very hopeful place to offer me the comfort I was seeking.  But, there in the furthest corner was this teeny, tiny daffodil.  I wouldn't have even seen it had I not ventured outside.  Although it doesn't look like much, I knew it needed to come in with me.  The following day I was sitting near it talking on the phone and noticed the room smelled just like springtime.  I soon learned the source was that tiny daffodil.

I took that as a hopeful sign.  While it certainly didn't solve the problems we are facing, it reminded me of the seasons of life.

Nature has a way of doing that for me.

Now, here in the southern USA, we are bracing for a large winter storm.  Here they are predicting ice/sleet Saturday afternoon through Sunday.  That is always a huge concern for power outages.  I am really hoping that will not be the case.

I mentioned how I already dislike 2026.

In addition to Brett's health, we have a large infestation of mice in the garage and I have been dealing with jaw pain after a dental procedure.  My fingers are crossed that that issue is finally resolving itself.  At this point I don't think I could handle a prolonged power outage.

If you are in the path of this storm, I hope you stay safe and I also hope your new year is off to a good start.

Rethinking Christmas Decor

When I began decorating for Christmas this year, it was immediately apparent that something had to change.  Brett's health challenges have made it difficult for him to walk or even stand for very long.  In my heart I knew that the decorating would be solely my job.

Being a somewhat sentimental person (particularly at Christmas time), I anticipated a somewhat difficult process.

I think preparing for the party fueled the project.

I began with hiring a few helpers to bring down all the decor that has been stored in overhead garage storage.

When that was done, I asked them if they would like our 9 foot Christmas tree.  They did.  So off it went to a new home.

Strangely, that was a huge relief.

From there I went through every bin with an eye toward what pieces really held meaning or sparked joy (as Marie Kondo would say).

We still have a decorated tree.

It sports our favorite and most meaningful ornaments.

All the others found new homes.

This tree requires no ladders or stepstools to decorate.

It also resides in my favorite reading room.

We've also come to enjoy a beverage in here right after the lights come on most evenings.

In this open floor plan home it is also visible from most other rooms.

It was interesting to see what was kept during this process.

This postcard dated 1934 was something my mom held on to.

Obviously it was special to her when she received it from a little boy at age ten.  I think the Santa in his green suit is charming.

It needed to come out of the box I have been keeping it in and displayed on the bookshelf.  Might not mean much to others, but it warms my heart.

My vintage collection was thinned once again.

Now it is down to the most meaningful pieces.

Old family photos with Santa were given new frames.

I paired them with favorite snowmen collected through the years.

If you were to visit our home, you would most likely not notice

anything different as there is still plenty of Christmas festivity happening.

Behind the scenes things are much more manageable

and the remaining pieces hold memories and meaning.

This just might be the best gift we could give ourselves this Christmas. ;-D

Funny how priorities change as we get older.

❄ Wishing you a peaceful week ❆

Holiday Hospitality

Over the weekend we hosted a holiday party for a group of neighbors.

There were 23 of us in all.

I had intended to snap a few photos throughout the evening, but this is the only one I took.

One neighbor came early and assembled her homemade sangria.

Many oranges and lemons were juiced for this.

It was very tasty as well as festive.

One neighbor brought this darling floral arrangement in the Milk For Santa vase.  

Next to it is one of the waxed amaryllis I mentioned in my previous post.  They arrived the day before Thanksgiving.  This one is just beginning to emerge from the bulb.  There are four of them.  I'm curious to see how they do.  One hasn't started to grow yet.  They are supposed to take 3-5 weeks til bloom time.  They require no care and can be placed anywhere according to the instruction label.  I like that type of gardening, especially at this busy time of year.

Hosting this party forced me to do my Christmas decorating early.

Also forced me to clean the house more thoroughly than normal.

I'm happy to report that the party was a success and now it is so nice to relax and enjoy the clean and decorated house.

Have a wonderful week!!

November

In November our community offers the opportunity to participate in a walking challenge.  We are encouraged to track our daily steps and compete with similar communities around the country.  The more steps, the more money that is contributed to the chosen charity.  This year it is going towards a local food bank.

The first of November found me joining the group for an early morning walk around the neighborhood.

For me, it has been a great motivator to get outside and walk more.

We have had such mild weather.  Little rain and mostly blue skies makes for ideal walking weather.  Watching the leaves change colors was an added bonus.

On this day I stopped to take note of what was planted in place of the summer annuals.  It looks like a combination of dianthus, snapdragons and dusty miller. 

Back at home the Thanksgiving cactus is blooming.

The blooms on this one are beginning to fade.

It may be all done by Thanksgiving on Thursday.

For the first time I ordered some waxed amaryllis through an online source.  They are supposed to ship in November.  I hope they show up fairly soon as they would be welcome replacements to the cactus when their bloom time is done.

Thanksgiving is liable to be very low key here this year.

A few weeks ago we had two invitations.

For various reasons that has all changed.

It may be just Brett & I here or we may have a visitor or two.

We have a turkey breast in the freezer, plenty of potatoes, vegetables, cranberries and even a box of stuffing on hand.  One way or another we will celebrate and be thankful.

If you are celebrating, I wish you a very Happy Thanksgiving.

🦃