One Week Later... Expressions of Grief

It's been a little over a week since Mom died. At first, I thought my grief wouldn't be so bad. I had spent so much time with her that I didn't have any regrets. I said good-bye to her multiple times, in different ways. And I knew that she was going to be in a better place, with her arm and all of her other issues finally healed.

In fact, I was a little concerned that I wasn't more upset. There were times I thought that something might be wrong with me. 

I think it was at least partially because I stayed incredibly busy with her Celebration of Life. I can't let anything be the standard if I can help it... I must make it special, even over-the-top. 

So, not only did I pick out (and edit!) photos for her slideshow that would run during the service, I ended up with about 340! Not only did I choose what she would wear, I put a lot of thought into it. She had already picked out the gown she wanted to wear (of course, she wanted to be comfortable) but I put a lot of thought into which robe and slippers to get for her. 

Someone in my household had joked about giving out dominoes to remember her by... and so I once again went above and beyond. My husband said we should write her name on each domino. That sounded like a great idea and I realized it wasn't enough.

I thought we could add a saying on each domino along with her name. Then I went even crazier. I used AI programs and searched with many keywords to find very short expressions (dominoes are tiny) that summed up her characteristics. I ended up writing tiny phrases and Mom's name on about 90 dominoes!

One day when we were discussing the Celebration of Life, I shared my first post in this series with her, "The Roller Coaster of the End of Life." I just wanted it to be a sweet moment between us. To my surprise, she insisted that I read it during the service. She had wanted all four of us siblings to speak... instead, I chose to sign the song "Scars in Heaven" by Casting Crowns. She wanted me to do both.

It was an incredibly long post (which you know if you read it) so I needed to edit it. Add that to practicing the song, which had a lot of metaphors that I had to translate into ASL and learn several new signs.

Then I decided I really wanted to add "Make it Well," by MercyMe, which meant another song to learn to sign. I decided to sing it too (with the regular track) so that was a challenge as sometimes the signs don't match the words.

But the big project was her program (I never did figure out what to call it.) I found a copy of my dad's and realized that it was very, um, basic. It did the job, but that was it. Mom wasn't basic in any way. Her program had to be much more. 

Instead of four pages (regular paper folded in half, front and back), I did eight. The first page had her picture, dates of birth and death, and the service time and place. The second page was what went on during the program (which was a debacle in itself) and a thank you for those who interpreted the service for my Deaf friends.

The third (or seventh depending on how you looked at it) was the lyrics for "Scars in Heaven." That song fit Mom so well that I wanted everyone to be able to read it. The last page listed the pallbearers, a thank you to everyone who came, and a note about how people could download any of the pics from the service from my website (after all, many of them were in them with Mom). 

The insert included special photos of Mom on one side and the obituary on the other, each basically taking up two pages.

Even with Canva, it was a lot. I'm very perfectionistic when it comes to work like that and there were several changes that meant I had to redo parts I had already finished. 

Then there was the paper issue. I had card stock I planned to use to print it, but it was a cream color, and the photos and graphics looked washed out. It wasn't expensive to buy some white card stock, so I did... three times. The first was out of stock. The second never showed. So, it took three tries to get it. I was nervous that I wouldn't get it in time, but I did.

Thank goodness there wasn't an issue with the ink. ;-)

Anyway, I didn't mean to go into all that. I just wanted you to know how busy I've been - and why I wasn't grieving. I had too much to focus on.

Then the service was over, and I felt lost.

I was on our worship team that week and even though I didn't feel a bit like going to practice, I went.

However, on Sunday morning, I woke up with my stomach absolutely killing me. I think it was the stress of the week plus extreme exhaustion after the adrenaline was finally gone that got to me. I wanted to play so badly... it was the first time in, well, in decades since I was on a team in another life, that I could go to church without worrying about Mom. 

But I couldn't go. I felt so nauseated I had to put a garbage can by the bed. I ended up staying in bed until my husband got home from church and he wanted to eat lunch together. I still felt bad but sleeping all morning gave me some energy and I was able to get up and do a few things that afternoon.

Was that an expression of grief?

That I still can't sleep through the night just like when she was so bad that someone had to be with her all of the time - is that another expression of grief?

In fact, was staying so busy with everything that didn't actually have to be done - but I felt it had to be done - last week also an expression of grief?

Of course, I have the "typical" expressions of grief... wanting to tell her good news, and then crying when I realize I will never get to do that again; wanting to ask her opinion, and then crying when I realize I will never get to do that again; wanting to find out what she wants for supper, and then crying when I realize I will never get to do that again.

I've been going through her clothes. It has to be done and I'm the one to do it. I'm keeping more than I imagined I would. My daughter had a good point and one that after she shared the idea, I remembered I did it with her baby clothes. We keep anything we might want. We can always donate some of it later - but we can't ever go back and get the things that we remember her by once we've given them away. 

In fact, being so methodical when going through all her things - is that one more expression of grief?

I have one more thing I want to share before I leave this and get back to all the different expressions of grieving... one of the last really fun things that Mom and I did together were to pick out some new glasses online for her. Totally unlike the past, well, I guess all the pairs of glasses she had ordered before, she wanted something fun.

We ended up picking out purple, octagonal oversized glasses. It took a couple of weeks to get them. I was so worried that she would pass away before she ever got to wear them.

In fact, it ended up that she was able to. She got them on about the third day of her last few weeks - when we all knew it was a matter of time. She looked so cute in them! We took several pictures and showed them off any time a friend came by to visit (to say good-bye). She loved them so much.

However, as much as I wanted to keep them, I knew that I probably could get a refund for them. After all, she didn't need them and they cost about $100. That much money is a big deal for us. So, I went the practical route and got on a chat with Zenni, where she bought them, to see if an exception could be made on the return policy since it was slightly after a month.

During the chat, I realized that it was going to be much, much harder than I thought to send them back. But I was torn - the money was important too. After all, I had the memory... did I really need the tangible glasses?

I knew I did.

So, I was brave and I asked if I could have the refund and still keep the glasses. I reminded the person that was helping me (who was AMAZING, by the way) that they would just be destroyed anyway. They couldn't reuse them at all. In fact, they would lose money because they would provide the shipping label. 

I did this while I was ugly crying. Of course, it was a chat. She couldn't see or hear my ugly crying. But she felt my heart.

At first, she didn't think she could do it, but she tried. I asked if she could talk to her supervisor about my situation and see if an even greater exception could be made. 

AND THEY DID IT! 

It's truly one of the happiest moments I've had in the last month or so. I'm so thankful to Zenni for listening to me, empathizing with my situation, and giving me both what I needed and what I wanted.

Just another expression of grief... but this one turned into joy.

Maybe that's what happens as time passes. More and more of these expressions of grief turn into joy. Instead of being sad that I'll never see Mom in her favorite robe again, I'll be able to smile about the times I did see her in it. Instead of being sad that I can't talk to her anymore, I can be happy about the many conversations we had. 

And even though I might not get to see her wear the glasses that we had so much fun picking out ever again, I will always have the memory of that day and how cute she looked when she finally got to put them on. 

Maybe there is hope, peace and joy even within the expressions of grief.

A Tribute to My Mom, Judy (AKA - The Obituary)

Judy Gilliland Hill - AKA Wife, Mom, Friend, Church member, and “Cheater" - had five major passions in life: Jesus and church, family (especially Dad), friends, travel, and playing games (and being accused of cheating while doing so).

With a smile and laugh that could light up a room, she was quick-witted, had an incredible sense of humor, and took life as it came, no matter how good or bad. She was liberal with I-Love-You’s and hugs. Just about everyone she met became a friend. She collected owls, preferred wearing gowns and bathrobes whenever possible (that just had to match), and her favorite color was purple (contributing to how much she liked Grapico).

All this was despite having numerous health issues throughout her life, including having a full shoulder/humerus/elbow replacement at 87-years-old. Nothing kept her from living her life to the fullest.

Born on April 13, 1938, at home in Blount County, AL, Judy lived 88 wonderful, fulfilling years. She joined Jesus and reunited with her husband on August 2, 2026, from her home in Trussville, AL.

She married the love of her life, Oliver Jackson “Jack” Hill, on February 1, 1957. Jack (“OJ” or “Orange Juice”) was her rock. She has missed him every day since he passed away and has been dearly looking forward to holding his hand in heaven as she did for their 66+ years of marriage

In 1958, they became pregnant with their first son, Michael Jackson. David Arthur followed soon after. Nine years later, Tracy Dion came, and then Daryl Wayne completed the family. For about the first 15 years of marriage, Judy was a stay-at-home Mom. Her life was her husband and kids. Then she also found a job that she loved, becoming a bank teller and eventually a much-valued trainer.

Travel was always important. Though not well-off, the couple prioritized annual family vacations (often including friends and extended family) to the mountains, beach, or even occasionally across the country. This continued as their children got older and grandchildren entered the picture.

There will be a Celebration of Life service at Jefferson Memorial in Trussville, AL at 2:00 PM on Saturday, August 8, 2026. Family visitation will be at 12:30 PM and friends’ visitation will be at 1:00 PM. There will be no graveside service.

Judy requests that everyone wear “cool, colorful, comfortable clothes.” She didn’t specifically request this, but it would be fun to wear purple, if you have it.

Her family would greatly appreciate it if you could bring a card or note with a memory or two that you have of Judy. Also, in lieu of flowers, Judy asked if you would donate to Blanket Fort Hope, a one-of-a-kind home for girls who have been trafficked. You can find out more about the organization at www.BlanketFortHope.org. Go to https://blanketforthope.kindful.com/?campaign=1338047 or scan the QR code below to donate in Mom's name.

***To see and download photos included in the slideshow at the service, go to https://NovelPhotos.instaproofs.com/InMemoryofJudy

Still Waiting... The Long Road to a Loved One Passing Away

From my small sample of those whom I've talked to about this, it seems like a universal feeling. A brief amount of research seems to back this up. Most are like me and feel guilty, but it is apparently a common perspective...

I'm not only ready for my Mom to go ahead and pass away, I also want her to.

Let me explain before you start judging me.

My mom found out she had lung cancer last December. It's now the very end of July. That's eight months. When the PET scan showed that the mass she had for years, that had barely grown in that time, had gotten much bigger, we had hope that she might be one of the few who had a year (at least). 

She had beaten death so many times before. Once she even coded (and saw Jesus and my crying brother at her bedside, by the way). She has had pneumonia numerous times, and several were touch-and-go. She had four major surgeries at 87 years old, with one lasting about 10 hours. That's on top of so many other medical issues, surgeries, and procedures throughout the last few decades of her life.

She chose not to have any treatments... She didn't even care about a formal diagnosis because it was invasive and she would have to be under anesthesia for the fifth time in 6 months to get it (very, very hard on someone elderly with all of her medical conditions). 

When I became realistic about it was when I became brave enough to look up the prognosis for those with lung cancer. I found out there are two main types, and with one, a person could live years. For the other, eight months was a stretch. 

Still, I thought that she had more time. 

Two and a half weeks ago, everything was normal. My husband and I went on a very rare date purely because we had a coupon at a place where we also had a gift card from this past Christmas. We went for an even rarer walk around the neighborhood at 9pm that night because I was restless and knew I wouldn't be able to sleep.

I'll never forget something I realized when we almost got to the main road where we would turn around. I looked around and told my husband, "You know? One day soon this house, this neighborhood, this time in our lives will be just a memory." 

Then we went back to talking about other aspects of our life together.

The next morning Mom woke up unresponsive; her breathing was, um, different; I knew things had changed.

But she had been there before. Not exactly like this time, but similar - showing signs of being at the end of life.

And each time she came out of it.

However, each time she came out of it, I knew one day it would happen that she wouldn't.

This time there's no doubt that she's not coming out of it. She hasn't eaten in days. She hasn't drunk more than a few sips a day for a few days. She has gone back to being unresponsive the majority of the time. 

I knew we were close.

I guess 15 hours ago (give or take a couple of hours) she again looked like it was imminent. The biggest indicator was that her oxygen went down. I called my brothers and her pastor and asked them to come.

And then she perked up. 

It was very slight, but she definitely knew they were here. She even said a few words during that time. 

Eventually they all left, and my husband, daughter, and I were left to watch her and let them know when they needed to come again.

In fact, I was writing this and heard something different from her. (Yes, I wasn't at her bedside at the time. I've sat at her bedside for hours so far, and one can only do that for so long without going slightly bonkers - at least I can't.)

I jumped up in the middle of the word "mass" in the fourth paragraph when I realized she wasn't breathing. (I know because it was almost funny coming back after leaving during the middle of a word. I don't think I've ever done that before.)

Her oxygen level was lower than it had been before - her heart rate was higher (which is unusual because she has a pacemaker). 

But as I had been fooled before, I waited - and waited - and waited... until I felt sure that I needed to call my brothers.

(Funny how I titled this post "Still Waiting" even before this happened.)

Anyway, the final straw was when her O2 got to 19 before going back up to the mid-30s. She started breathing "like a fish," which I hadn't completely understood until I say it. I KNEW this was it. So, I asked my husband to call them.

I turned on some music I knew we both would enjoy...

And got prepared to wait even longer.

The music changed things. Her oxygen started going up. It finally leveled out in the 60s. I waited a little bit and then texted them again to tell them what happened. I told them to just wait to come (there's that "waiting" again!) until it dropped back down.

It's about 45 minutes later and it's still holding steady. Her breathing has gone back to what has become her normal. 

By the way, for those of you who are in the same boat, I've learned that there is a lot of variation in signs of the end of life.

Keep in mind I'm not a medical professional so do your own research or talk to someone who knows to confirm what I'm about to say. My point is that it's good to remember that everyone is different in the way and timeline in leaving this life.

One classic sign the end is near is low blood pressure. My mom's has been high - occasionally really high. These spikes in blood pressure were also when her oxygen was low. 

I didn't understand until my daughter and I were discussing theories on why she was hanging on so long. She mentioned that her brain just had to be deprived of oxygen, but her brain stem was still functioning - and that's where the autonomic functions of the body are located (blood pressure being one of the main ones).

My mom has POTS, a form of dysautonomia. In other words, her autonomic nervous system hasn't worked correctly in decades. Her blood pressure fluctuated each day from low to high. Instead of having blood pressure medications to lower it or raise it, she had both and took them depending on what it was at the moment.

I looked it up, and yes, that is a thing. With someone with dysautonomia, an indicator of it being the end isn't low blood pressure. In fact, it can shoot up. 

Another difference with Mom is that she has a pacemaker. That also changes the typical end-of-life signs. Until yesterday afternoon, when her pacemaker started flaking out, her pulse rate was a steady 75. She was on oxygen, so her blood flow kept going to her extremities. (Purplish extremities are another sign the time of passing is close. Mom's have stayed the same color.)

Yesterday afternoon it started varying from 75, but not by much. This morning it went up to 89, a big spike for her. That's where it was when her oxygen was 19. My theory on the physical reason she went from being so close to death to then having steady vitals is that her pacemaker kicked back in (even though I still think the music was part of it... somehow.)

One last thing for those who may be in the middle of similar experiences: having a pacemaker with a defibrillator adds an additional step at the end of life. The purpose of a defibrillator is to shock the heart when it goes out of rhythm. For someone dying, that means it will go off when the heart muscle starts to die due to lack of oxygen. It causes a minor shock to the person. 

It did that yesterday to Mom. It wasn't a bad shock, and it didn't hurt her. But both her hospice nurse and I saw it. She got a special magnet that deactivates the defibrillator. If you have that situation, make sure you check into how to do that for your loved one.

In other words, don't take what the Google and the booklets and even the nurses tell you. There are special circumstances that affect all this.

So, even more waiting........

The Roller Coaster One Week Later

The roller coaster has continued for a week now... This time a week ago, I had absolutely no idea what was coming.  

In fact, last Monday night my husband and I went out to eat (a very rare thing lately). Afterward,  we went for a late-night walk on our street (an even rarer thing). I don't know why I did it,  but I remember remarking that one day this would be just a memory - this street,  this house,  this period of such pain, struggle, but many good times. 

I'm in bed with Mom again right now. (It might be the last time she sleeps in her bed.) She had a big rally yesterday where she was really lucid,  wanted to eat, and actually stood up on her own. I'm thankful that I knew what to expect, but even knowing doesn't make it hard to keep in mind that she's not getting better, that it was just a blip on the road to heaven. 

It's a strange dichotomy at the moment.  I hear the pulsing noise of the oxygen concentrator while also listening to some beautiful hymns. (That I consider them beautiful still amazes me because for several decades I've hated them. But that's a story for another day.)

My husband came down a little bit ago to help Mom transfer to the bedside commode. I look around and see all of the equipment we rely on now. The bedside commode, the waterproof pads on the bed, the wheelchair, the hospital bed outside the bedroom... all reminders that she's in this stage of life. 

On one hand, I can't wait to get rid of all this stuff. On the other. I know what that means... and I'm very willing to put it off a little longer.

I'm recording and taking videos of just about everything. That's how I remember, and this is a time I desperately will want to remember. 

One thing I wasn't able to take a video of was her getting into bed. She has a high bed with side rails. The way she gets on the bed is to sit on the side, put her feet on the side rail, and push herself up. 

Every time she does it, I think of that scene in the movie "Titanic" where the elderly Rose steps up on the rail of the boat to throw the Heart of the Ocean (I think that's its name) into the sea. I've always thought she was so beautiful in that scene, with her wrinkled bare feet and wispy hair.

Mom is also that beautiful. She has an amazing smile that lights up a room. However, she absolutely hates her hands and feet because she has severe arthritis and they are crooked and swollen in the joints. 

I think they are beautiful. 

That reminds me of a song I'm planning to sign (while my daughter sings it) at Mom's Celebration of Life. It's called"Scars of Heaven" by Casting Crowns. It sums up Mom's life so well, especially due to the huge scar that runs all the way down her right arm.

This is the YouTube URL: 

    https://www.youtube.com/watch?v=NiJUE9Eii0Q&list=RDNiJUE9Eii0Q&start_radio=1

And here are the lyrics:

If I had only known the last time would be the last time,
I would've put off all the things I had to do.
I would've stayed a little longer, held on a little tighter,
Now what I'd give for one more day with you.

 

'Cause there's a wound here in my heart where something's missing,
And they tell me that it's gonna heal with time.
But I know you're in a place where all your wounds have been erased,
And knowing yours are healed is healing mine.

 

The only scars in heaven - they won't belong to me and you.
There'll be no such thing as broken, and all the old will be made new.
And the thought that makes me smile now, even as the tears fall down,
Is that the only scars in heaven are on the Hands that hold you now.

 

I know the road you walked was anything but easy.
You picked up your share of scars along the way.
Oh, but now you're standing in the sun, you've fought your fight and your race is run.
The pain is all a million miles away.

 

The only scars in heaven - they won't belong to me and you.
There'll be no such thing as broken, and all the old will be made new.
And the thought that makes me smile now, even as the tears fall down,
Is that the only scars in heaven, yeah, are on the Hands that hold you now.

 

Hallelujah! Hallelujah!
Hallelujah! Hallelujah! 

For the hands that hold you now.

 

There's not a day goes by that I don't see you.
You live on in all the better parts of me.
Until I'm standing with you in the sun, I'll fight this fight and this race I'll run,
Until I finally see what you can see. Oh-oh!

 

The only scars in heaven - they won't belong to me and you.
There'll be no such thing as broken, and all the old will be made new.
And the thought that makes me smile now, even as the tears fall down,
Is that the only scars in heaven are on the Hands that hold you now.
   Source: LyricFind
    Songwriters: John Mark Hall / Matthew Joseph West
    Scars in Heaven lyrics © Essential Music Publishing, ME Gusta Music, O/B/O DistroKid

It's a beautiful song. 

I need to try to get to sleep. Friends and family have been and are coming to visit over the next few days. It would help if I'm not exhausted. 

Good night. 

The Roller Coaster of the End of Life

My mom has been on hospice for about 8 months now. It's funny in a way. She was referred for hospice mostly for pain management, was admitted due to congestive heart failure, and then found out she has lung cancer - which is not even part of her official diagnosis (because she didn't want to have a biopsy, which is required for a formal diagnosis).

It took some convincing for her to talk to the hospice company. She told me that everyone she knew who was on hospice died not long after being admitted to the program. I explained that it was because they went on hospice too late - and that many lived years while on hospice. 

She agreed to discuss it with them and then agreed that it was a good idea. 

It's been a huge God-send... for many reasons. There are some practical reasons - free pull-ups, wipes, gloves and other items needed for the latest years. Some of her meds are free, too. 

No doctor appointments... at least for us. I don't know about all hospice companies, but ours has one doctor, so all of her care is managed by one doctor and very caring, knowledgeable nurses. After going to probably about ten different doctors for YEARS, this has been nice.

Relationships with the aforementioned nurses, plus aides, social workers and chaplains are a big bonus. All have been amazing. I can say they are truly becoming friends. I know I can rely on them to answer questions, provide support, and do many other aspects of care that go above and beyond what many in those fields are able to do.

So I have a great support team for this very rough time of life. What I didn't expect was just how much of a roller coaster it would be.

In the beginning, even though there was never a doubt that hospice was the right call, sometimes I wondered if she actually needed it. Other than no longer being able to drive due to the pain meds, she was still very independent. She was able to cook, go to church, play dominoes with her friends every week and host family functions (with a little help, of course).

When it came time for her first re-certification, I reminded her not to lie, but also not to gloss over how she was doing. She has always tended to downplay her symptoms and her pain. Because I live with her, when she went to a doctor's appointment and reported her pain as a 4 out of 10, I knew it was actually at least a 6 or 7. She wouldn't mention very relevant symptoms. I was a little nervous that she would do that but she re-certified without any issues.

However, it wasn't very long after that things started to change. She became less independent. It became very difficult for me because I wanted to keep her safe while she still wanted to go and do everything she used to. Things like cooking became "discussions" (fights) because after watching her come close to getting hurt or catching something on fire from the gas stove, I had to insist she stop cooking. 

Sometimes I wonder if that was the right thing. So many decisions were debated - both during the heat of the situation (no pun intended) or afterward. My reasons were valid for her not to do those things but I wish sometimes that I was better at trying to convince her that relying on someone else didn't mean she still wasn't strong or capable - it was simply the best thing for the time.

Her decline has been very up and down - with more swings than I had anticipated. Several times, she has been completely unresponsive. I would call and get a nurse to come over and check her out, ask the social worker and chaplain if they could come, and share what was going on with friends and family. We would start thinking about where we would put items like a hospital bed and we even ordered one once. 

Each time, she just popped out of it. The first time was especially remarkable. She went from completely unresponsive to a few hours later walking out of her bedroom after her nurse came to check on her. (That was the time I got to cancel the hospital bed.) Those who had worked in hospice for years said they had never seen anything like it. I attribute it to her strength, stubbornness/independent nature, and the prayers of many of her (and my) friends.

After each episode, everything went back to "normal" (whatever that is). There might be a few more things she had a difficult time doing by herself, but overall, she was back to being able to go and do all she had done before.

This latest time was different. Though I knew it was different, having watched her intently for hours during each time before, there was still the hope that she would bounce back. Her care team agreed with me. There were aspects of being closer to the end of her life than had happened before - more episodes of low oxygen, alarming blood pressure readings, and though she was still breathing at a normal rate, it was just... not... the same. 

I had a feeling this was the beginning of the end.

That happened this past Tuesday (it's now 1:35 AM on Thursday). We all tried to explain it away. It was easy to attribute it to doing too much the prior few days. On Saturday, she went with my brother and future sister-in-law to pick up her old sewing machine from a repairman whose shop took over an hour and a half to get there and back. 

On Sunday, she visited a new church. This was the first time she was reliant on oxygen beyond sleeping or sitting still; the first time she had to use it outside of the house. On Monday, she played dominoes with friends she has known for decades at the home of one of the group's members, who lived over an hour away round trip. 

It was a lot to do for someone in her condition and could have easily explained where she was physically.

But like I mentioned before, in my heart I knew it was different. The subsequent days have proved it.

We ordered a hospital bed, a Hoya lift, a bedside table from hospice.. The hospice nurse changed the frequency of her visits from twice a week to every day. Some meds were changed, more were taken away, and others were added. 

And for the first time, I was brave enough to ask what to expect. I knew it was time to know.

My nurse brought a wonderful little book that explained what typically happens with people who are naturally progressing through disease- or age-related decline called "Gone From My Sight: The Dying Experience," by Barbara Karnes. It's an easy read, only 14 pages, and is based on research as well as experience. 

In it, I found that there are parts of the end of someone's life that they wouldn't know about unless they've experienced it themselves with a loved one or learned about it from someone who has. One is seeing people who have gone before. 

Yesterday, my mom saw my dad, who passed away several years ago. Then last night in the wee hours of the morning, she saw a woman standing behind me. She told me that I "couldn't go where she was going." Then she saw a man in another part of the room and said the same thing about him.

If that had happened without having heard about it before, I would have freaked out. But I am taking it as just one sign that she's getting closer to heaven than she is here.

She also had a very vivid dream yesterday. I won't go into the whole thing, but it turned out that she went into a very long tunnel towards a light. On the other side of the light were the pearly gates. She remarked that they weren't like she had always imagined - that they weren't made of pearls like she thought. 

We chuckled about that. 

Knowing what is typical helps on many levels, but even knowing this is what most people in her stage of life experience still doesn't help emotionally. 

Like many mother/daughter relationships, we've gone through different times where we were best friends, where we were more distant, where we've fought like siblings, and where we've shared everything. 

Currently, she is one of my best friends. I can tell her almost everything going on in my life. I ask her advice and truly know how amazing she is and the wisdom she can offer (totally unlike my teenage and young adult years when I "knew everything"). I rely on her, and she relies on me. 

There has been a role reversal. I am her caregiver now. I help her get dressed, remind her to take her meds and brush her teeth, and schedule those who help take care of her. The transition was difficult for both of us for a long time, but eventually we accepted that this is just what happens with most people in this age bracket.

But one difference is that I live with her. She and my dad took me in when I had a major life event that wrecked my world. This allowed me the ability to pursue my lifelong dream of becoming a professional photographer and writer. Though it's not unusual for a mother and daughter like us to live together, usually it's the daughter's home they live in. That adds a layer that makes our practical relationship different than other mother/daughter relationships. It took a while for us both to adjust when my daughter and I moved in - but it's been well worth it for all of us.

I'm writing this while sitting in her bed with her. She felt good enough to sleep in her bed instead of the hospital bed that we finally got - and I wanted to sleep with her, stay with her, be right beside her in case she needed me.

And she has. She has woken up a lot through the night. She sees people I can't see. She has very vivid dreams that she needs to talk about. She needs encouragement to drink when I know her mouth is dry. Though she can still bear weight and even walk a few steps occasionally, it's definitely not safe for her to get out of bed by herself.

I'm incredibly thankful that I get to be here, with her, right now. The sleep I'm losing is more than worth it... The sodium deprivation from copious amounts of crying is more than worth it... The fact that I am committed to not going anywhere until she either gets much, much better or she goes to heaven is more than worth it...

...because that way I don't have to depend on simply hoping that the times I'm able to visit her she is lucid. 

I have recorded her telling stories about her past. I get to hear her quips, which is a huge part of her witty, hilarious personality. We got to play a game of Five Crowns with her last night - and somehow, even being extremely confused and literally cross-eyed with exhaustion, she still ended up not only winning, but having an unheard of zero score after the five hands we played.

Mostly, I have gotten to see her smile - and laugh. Even though at times we're both scared, even though we both have cried (sometimes even ugly cried), even though we have each expressed how much we'll miss the other, I'm just so thankful. 

She's an amazing, wonderful, strong woman. She's been through a lot in her life. She's had really, really low lows and many high highs. She's very, very confident that she's going to heaven and looks forward to seeing my Dad, many of her friends and family who have gone on before her, and Jesus. She is also looking forward to finally being healed and whole after decades of ongoing physical issues, some severe. Her right arm, the one that has bothered her since she first broke it when she was six-years-old (for over 80 years), the one that had two previous elbow replacements before the huge surgeries that began almost exactly a year ago where she got a shoulder/humerus/elbow replacement, the one she was never able to rehab well enough to work correctly - it will finally be healed!

I have a photo of the last time she ever got to ride a roller coaster, which she loved. I was with her. We never buy the photos that cost an arm and a leg (no pun intended... again!) at amusement parks, but this time was different. I was pretty sure it would be her last time to ride her favorite amusement park attraction - and it was.

I'm proud to be her daughter, and I'm so very thankful that, as hard as it has been and is currently, I'm getting to ride this roller coaster with her, too.

Mom, I love you so much. Even though I'm going to miss you TERRIBLY, I know you'll be okay. In fact, you'll be better than okay.

And I will be too, mostly thanks to you.

Aspects of Caregiving that Aren't Talked About

Caregiving is HARD! I knew it would be emotional to have someone you love need help for so many formerly independent tasks. I knew it would also be taxing because of losing sleep. I knew it would be financially draining due to losing work and missing potential work opportunities because of something coming up with my mom's health or having a sitter not be able to come at the last minute.

But I didn't know there were so many other aspects that you would never think about until you are there.

Things like... 

- eating fast-food or take out more because of not having the energy to grocery shop or fix food;

- bills piling up and checks bouncing from not being able to stay on top of mail and paperwork;

- not being able to work out consistently because of needing to find someone who can stay with her when I want to go to the gym; 

- having to throw away food that spoiled because of not being able to keep my act together enough to use it in time;

- the guilt of doing things (like going out to eat) without her; 

- knowing that there are lots of other caregivers out there and even caregiving support groups, but not having the time or energy to access that support; 

- the brain fog that develops because of so many decisions to make, with some being tiny things to others being potentially life-or-death;

- how hard it is to keep a relationship going with your spouse because of the added stress and time apart, both physically and emotionally (mostly due to exhaustion);

- little things like missing return windows on items that we bought and didn't work out and missed sales...

But by far the biggest aspect of caregiving that I was totally unprepared for is always, always, always second-guessing every decision - from how much to hover to keep her safe vs giving her as much independence and autonomy as possible to not knowing what to do if she's not feeling well but it's not quite bad enough to call the hospice nurse.

It's been a little over seven months now since my mom went on hospice. Something else I really wasn't prepared for is how one would think that I would have adapted to this life by now. But obviously I haven't. 

I'll still see a concert I'd like to try to shoot and/or cover (through my freelance work as a photographer and writer), and only after I've started trying to get the job, I'll realize I have no one to stay with her. I'll see something I really want to buy on Facebook Marketplace and then realize I have no one to be with her while I'm gone - even if it's only 30 minutes. I'll meet someone new at church and start to plan to go out to eat with them after the service is over - only to realize the sitter I got to stay with her during church won't stay longer with her because they have their own plans.

One thing I want to make sure I emphasize - I wouldn't have it any other way. I feel privileged to take care of my mom. I'm thankful that I'm in a place where I get to.

But there are a lot of times I just really, really wish it wasn't so hard.

Long Time, No Writing (AKA Full Body to Thin Body - But Not in the Way You Think)

My title of this post isn't exactly completely accurate. I've been writing, but not here. It's been hard to write much at all with everything going on - and so this has fallen by the wayside. But I've decided that I'm going to try to write here more often.

As you know, coming here is my go-to when I'm sad (or really happy) or have something that happened I need to vent about or just have something I realized I thought you might be interested in hearing it. 

So, this morning, when a bout of sadness hit me, seemingly out of the blue, I thought I would come back to the best way for me to process it. 

Setting: I'm sitting along the back wall of my church. My husband is practicing with the worship team. I brought my laptop so that I could get some stuff done these couple of hours that I don't need to worry about Mom. 

I had asked to be on the team this week but there was a miscommunication between my worship pastor and me and I wasn't included. As it often does, it worked out better that I'm not on it this week. I really needed to be home with Mom this past Wed night during practice. (It's like God knows what's going to happen in the future - amazing!) 

It doesn't make it any easier to hear them playing and want to be up there with them. Well, I just figured out the why on my sadness! Though I know logically it was better for me to be with Mom and honestly, that I'm finally able to get a blog out for the first time in months, I'm still sad that I'm sitting on the sidelines of something I love to do so much. 

I would have to go back and see if I ever wrote about the miracle that me even being on the worship team is. A few decades ago I gave up on church - too organized, too many issues, too much hurt. Around the same time, I also shut my heart down concerning music - all types of music, not just worship. I thought that if I just shut it down and tried not to listen to any music, it wouldn't hurt so much. 

During that time, I also gained a lot of weight. A couple of times through during those years, I picked up my guitar and tried to play. It was physically just not possible. My full-body and shortish arms weren't long enough to reach the guitar strings with my full-bodied guitar. 

So, when I finally started back to a regular church (not Deaf Church) a little over two years ago, I wanted to join the worship team, but I didn't think playing guitar, my favorite instrument, was a possibility. Instead, I tried to play keyboard, which I had been somewhat successful in the past playing. Not this time! I failed miserably.

But my worship leader at the time kept encouraging me to pick my guitar back up and I had the bright idea to get a thin-body (not myself - my guitar). My mom supported me and gave me the money to buy a cheap one... and I was able to play it! Not only could I play it, it was like I had never put it down!

Then a few months ago, after losing weight and having more a thin body myself, I decided to be brave one day and try my beloved Takamine guitar, one that was special to me for many reasons. One was that during a horrible divorce, my worship team at the time took up the money to buy it for me. It's a sweet sounding guitar and through my no-music years and no money, I thought several times about selling it, but just couldn't do it.

It was incredibly special to me to be able to play it again.

Combine that with sitting on the sidelines... I've had other loves in my life where I had to sit out for various reasons. I know this is a common theme with humanity - there's not a person who hasn't had that happen figuratively if not literally.

Plus, add in being more than extremely tired. I haven't been sleeping much lately - averaging maybe 3-4 hours a night. It wears on you more than you realize until it happens. So my emotions would be on the edge even if I wasn't on the sidelines.

I feel that most of my posts have been more positive lately and I feel a little bad that I'm going back to my all-too-common post that verges on a pity-party. But I also have made a commitment to be real with this blog - and today I'm sad. Today, even though I know why, I feel left-out and on the sidelines. Today, I wish I was rested and up on the stage doing what I love.

But I'm not, and it's really okay. One thing I've been learning is that with life, and especially with bipolar disorder, emotions come and go. This sadness won't last forever. Not being able to sleep won't last forever.

And sitting on the sidelines won't last forever. In fact, most likely in just seven days (or three if you're counting until practice), I'll be back up there. 

For all this I am incredibly thankful.

A Gay Man Sat in Front of Me in Church Today

A gay man sat in front of me in church today.

During pre-service, I listened to him pray fervently. During worship, I saw him enthusiastically join in. During preaching, I noticed that he was fully tuned in.

If you read this blog, you know that I am not sure that being gay and being Christian aren't possible. I have heard a lot of perspectives from both sides. I've heard that Bible translations have been interpreted anti-gay when they weren't actually meant to mean what we now think. On the other hand, I grew up hearing from the pulpit and from other Christians how horrible it was to be gay, how incredible a sin it was, how it's impossible for a person to be gay and be saved. 

However, that's not the point of this post. I have only listened to the viewpoints of others. I've never researched it myself. Even if I did, there's a portion of anyone's interpretation of Scripture that is their opinion. How much is God's Word and how much is culture? Plus, even if being gay is a sin, is it really my place to judge someone else's actions? Isn't that the job of the Holy Spirit?  

Back to this morning. What I saw brought up a question. Which is right? If praying fervently proves you are a Christian, then this man was a Christian. If being engaged in worship proves you are a Christian, then this man was a Christian. If tuning in fully to preaching proves you are a Christian, then this man was definitely a Christian.

On the flip side, however, what about those who might not pray fervently, might not engage in worship, might not fully tune into the sermon? If someone doesn't do those things, does that mean that he or she automatically isn't a Christian? 

In other words, it was one of those tangible reminders that we can't know what's going on in someone's heart. Maybe, just maybe, we should let God do His job and we should worry more about Him changing us than Him "fixing" everyone else.

Size Shouldn't Matter... But It Does

Following is a question I asked my pastor, but first, some background.

Our church is like many now that has "merch" - coffee cups, baseball caps, t-shirts, etc. These items have the church's name on them along with an associated event or saying. In this instance, they came out with a design of a shirt that was very special to me, one I really wanted.

However, I was almost positive that they didn't have a size big enough for me. I try not to let it bother me but I do feel left out when I see so many others wear the merch to church events. Oh - I don't wear baseball caps so that's not an option, even though I know it would fit.

So, this is where the email to my pastor came in...

****************

What's the largest size of the t-shirts you are giving out next week? My guess is 3x - because that's usually the standard biggest one out there (if you even got any that big). 

But something I would appreciate you thinking about... 

I gave up years ago ever getting a t-shirt at a church event, a concert, or with a club because there wasn't ever a shirt my size. I thought it wasn't possible.

I battle feeling left out, even with a group where I KNOW I'm not. Not being able to look like those around me because I can't afford clothes my size doesn't help this. I wear whatever I can find, which doesn't fit right even on the best day - and since I've lost weight, they fit even worse. I used to just accept that fact but I'll admit, it's really difficult when other women wear such cute clothes and I can't - and church is the worst place I deal with it. Not because anyone looks down on me for it (I hope), but because I look down at me for it.

Every... single... time... I see one of these shirts on someone at church, I feel just a little left out. Every single time a new shirt comes out, there's a tiny hope that there will be one my size - or that I've lost enough weight to have one fit. And every single time, I'm disappointed all over again.

When it happened at the marriage retreat, I mentioned it to one of the leaders. Usually I try not to worry about it - after all, I could just put the one given to me (that was too small) aside like I have so many others. But because they wanted everyone to wear their shirts for the group photo, I had a rough morning. I so wanted to be part of the photo without standing out like a sore thumb that this was one of the very, very few times I tried it on, just hoping against hope that it would fit - 

It didn't.

Yes, I should have been able to let it go. Yes, I shouldn't have let it get to me... but it did, pretty badly actually. It sounds crazy if you weren't in my head, but that stress, combined with my camera messing up and thinking I had lost all the shots from the retreat plus the paid shoot I left the retreat to do that Saturday morning, left me somewhat suicidal. Yes, that's extreme, and the shirt was a small part of the problem (how it seems like everything keeps going wrong was the main reason) - but the shirt led to me feeling not a part and that made it take that much more effort to ask for help.

Back to when I talked to the leader... when I told her all this, she apologized and said that she could have gotten a bigger size, but didn't even think about it. Does this mean it's possible to get even bigger sizes when you guys order shirts? Does it cost a lot more? Is it possible, at least once in a while, to get one for me?

When I started writing this, it was going to be just a simple question. I didn't plan to go into all that. I didn't think it would be a big deal. However, I'm ugly crying right now, so much that it's hard to breathe. It's apparently deeper in my heart than I thought.

Anyway, like I said, something to think about...

On the Cusp of Another Year - New Year's Eve 2025 (aka: What I Thought Would be "My Year" Did NOT End Up that Way)

I keep spreadsheets for work each month where use Google Sheets to list the client's name, how much I made, mileage, when I was paid for that job, etc under the corresponding date. However, there's not a great way to find an old spreadsheet because this program has limited organizational options.

Because I'm a very visual person, I started putting a symbol at the beginning of the title of each month's addition. One year it was an asterisk, another it was an exclamation mark... you get the idea. This way I could scan the list to find all of the pages for a certain year quickly.

At the end of 2024, I got some business-changing news. My most steady client had to cut back and I was due to lose more than half of my income each month. However, as I had a feeling this was coming, I tried to be optimistic. If you know me at all, you know this isn't natural; however, I had been wanting to branch out. After getting this news, it was no longer a choice. I decided to be optimistic about where I was going.

In addition, my husband was studying to get certified as a paralegal. This was his major in school and he worked as a paralegal for a while after graduation. Then, for various reasons, he didn't stay in the profession, which meant that he had gone several decades without doing paralegal work. He wanted the certification to prove he was still able to do it.

So, I went into 2025 full of hope. It was going to be "my year" in my business. I was ready to get out there and make some money (and hopefully help others along the way). My husband was going to pass the certification test and get a really good job. For once, the pressure wouldn't be on me to make money as he should have a pretty good salary in that scenario.

To help keep that hope alive, I chose a dollar sign to start each 2025 entry. 

The year started off with a bang. 

I met with a friend who is also the head of a writers' professional group after telling her I wanted to pick her brain on how and where to start finding the writing work I had lost. 

I was floored when she offered me an amazing opportunity. The writer's group she was in charge of was starting to publish books. They were also having various staff write a book for a series of books on writing.

As an honorary staff member of the organization (because I'm their official photographer), my friend offered me the chance to write a book in the series with some type of photography angle.

What?! I had wanted to write a book since I was a child. This was an amazing opportunity.

However, the deadline was only a few months away, and I was trying to build up my paid work while working on it. It was a frantic, though fun time.

I was able to join my local Chamber of Commerce through a barter - photography work for the membership fee. I just knew loads of work in my suburban city would come my way as I was the only full-time photographer who was a member of the Chamber. I joined the local merchants' association and worked hard at networking with them and the Chamber, as well as attending other networking events.

There were successes. My book was published. I made a substantial amount at one shoot. I started writing and shooting for other publications. My husband was studying for his test. 

It was working out as expected... at first. However, two things happened that ended up changing my entire year. 

In January, my 87-year-old mother fell. 

That's not unusual in itself. She falls a lot. I joke that we should get frequent flyer miles at the ER. But this one caused her elbow replacement (actually the second one) to come out of the bone that goes into her shoulder. She was in horrible pain but had been told that if something happened to the second replacement, nothing could be done. There just wasn't enough bone left to attach it to in order to do it again.

She spent months in pain, simply trying to learn to use her left arm and deal with the pain. 

Though it would change the entire course of 2025, for months it was just (literally) a pain to deal with.

From April to June, my 26-year-old daughter moved back in with us. You can go back and read some of that story in earlier blogs. Just know that it took a lot of adjusting on everyone's part to make it work.

During that time, I was able to work some but it was difficult as the move was a major deal.

But back to Mom.

In April, she found the one doctor in our state who would take on such a surgery. We were able to get an appointment for mid-May. At every appointment, we held our breaths, expecting to hear that he couldn't do it.

But he could.

Her first surgery was in July. This surgeon had told us he would have plans A, B, C, and D - all of which he came up with after consulting with some of the top surgeons nationwide who do this kind of surgery. I don't think he knew we would end up with Plan E.

Halfway through the surgery, he came out of the operating room to talk to my brothers, my husband, and me. He told us that there was only one thing they could do - take out her current elbow replacement hardware. From there, we had a choice. We could either let it heal up, which meant Mom wouldn't have an elbow or a functional arm, OR we could take a few weeks for her to recover and go back in to do a total elbow-humerus-shoulder replacement.

We chose the latter.

This was when I became a caregiver - and when work became secondary.

The second surgery - about a 10-hour operation - was in August. She had to stay in the hospital for about a week and was at a rehab hospital for almost two more weeks. I was with her almost the entire time. I tried to work some from the hospital, but it didn't go well. She needed too much help.

However, she made it. She was extremely weak and needed a LOT of help at home when she was discharged, but she did it.

Then her arm became infected.

They went back in and did a third surgery - a "clean-out." This was in September. She was again in the hospital for about a week and spent another week in rehab. I was there the majority of the time, but I needed to work some, so I tried to do both.

Resulting tests showed that the clean-out worked. She got over the infection. But, for some reason, the wound wasn't completely healed. She had been opened up from her shoulder to her wrist, and about a 4-inch-long part wasn't healing.

This led to the fourth surgery - a debridement. They were hoping that they could cut away the tissue that wasn't healing to give it a boost.

She didn't have to stay overnight in the hospital for that one. Woo-hoo! Her surgery was on Halloween, and it was nice to be home instead of back in the hospital.

All of this wiped her completely out. Her body kept betraying her. Other issues throughout the four surgeries made everything harder. 

What this meant for me is that I was able to work less and less. I lost all of the momentum I had been gaining. In fact, I made nothing, nada, ZERO in September. 

It's been two months since her last surgery. That wound is finally healing. She's been able to use her walker for the first time in months. Part of this improvement was that she ended up going on hospice for pain management.

The ironic aspect of this part of the story is that after she decided hospice was a good idea, she found out she has lung cancer.

She doesn't want treatment, so there's no need to get a biopsy. As a biopsy is the only way to show what kind she has and whether it's fast-growing or slow-growing, she isn't technically diagnosed with cancer. She's technically on hospice for heart issues (though they know about the cancer and will address it as needed.)

With that news, work again became secondary. It took a lot of meetings to get her started with the hospice program and I had to be at all of them. She may be much more ambulatory now but she's at a huge fall risk and so it's more nerve-racking to leave her alone than it was before. 

This past month I made $25. Oh - and my husband never was able to finish studying for his test because of everything that happened. (He was the secondary caregiver as he was the only one who could pick her up when needed). 

I'm at a loss of where to go from here. I'm still needed as a caregiver too much of the day to really focus on work. Add to that, my back issues have gotten worse. It takes everything in me to complete a full event now. Writing is a better option, but writing opportunities are few and far between.

I have a few more days that I can procrastinate on any decisions, justifying it by knowing that the world is on hold for a couple of days. Businesses are about to close for New Year's Eve and many will stay closed tomorrow. Friday will be spent with issues that I've had to wait to deal with (medical bills make up most of them). Monday is my target day to try to figure out where to go next.

One thing I wish I had done when I started writing this blog is to get subscribers. I've looked into it since but never figured out how. But I do know there are a few who read this blog at least occasionally. As 2025 ends, I thank you - and anyone who has read any of my blogs. I hope I was able to encourage you through all of my ramblings... or at least let you know that you aren't alone.

Let's hope that 2026 is much better (at least for me). 

Depression, Anxiety, Mental Health... Do Bible Verses Help?

I’m at our weekly prayer time at my church. The person who did the devotion spoke about mental health. I’m not discounting her experience, but I believe differently. The advice she gave for those who are struggling is to reach out to others, to start back on an old hobby or start a new one, or to go to a Christian counselor. 

While those are good things, the very definition of depression (or at least major depressive disorder) is that you can’t do those things. There have been many medical studies of the brain that show that the areas that make a person have the ability to do those things are messed up, smaller than they should be. It is literally pretty much impossible to help yourself out of a true mental health depression state.

Now I’m not saying that God can’t work. He can heal. He can heal the brain (something I have never thought about until I was typing these words right now). Support from others can be a major part of that healing. Hobbies and counseling can definitely help.

But remember, with major depressive disorder and many other mental illnesses, the person who needs the healing can’t reach out. It’s up to the Church to do the reaching out. It’s up to the Church to pray for those who need help. It’s up to the Church to encourage hobbies by inviting those who are struggling to think of any themselves. It's up to the Church to provide qualified counselors at a rate that those with mental illnesses, many of whom have a hard time working and don't have the resources for such help, can afford.

As I write this, I’m in an “up” cycle of the bipolar disorder I still deal with. I’ve been awake since 12:30am, and while I might get tired later, I’m not at all tired now. I’m fully of “ready-to-go.” I couldn't have slept if someone bribed me with a huge sum of money.

I don’t know if the person who spoke deals with chronic mental illness. Maybe she said mental health and I translated it as mental illness. With mental health issues, maybe the advice she gave will work. 

Even if that’s what happened, the problem is that many others might do what I did - mix-up the terms. At the end of her devotion, she shared several scriptures about not being afraid, not being anxious, etc. I’m not saying the scriptures aren’t true, but it’s just… not… that… easy… If it was, I wouldn’t have struggled for the majority of my life with these issues. My husband wouldn’t be so depressed that he can’t look for a job. There wouldn’t be a need for psychiatrists and medicine and licensed counselors.

And there is.

There always will be.

Because putting the healing on the sick person isn’t what will heal them. God, through the work of the Body, is the only thing that will.

Waiting

Waiting is something everyone has to do, from the time of birth to the time of death. Sometimes waiting is predictable - like waiting for your birthday or Christmas to arrive. Other times it's unpredictable - like waiting for customer service to pick up. Sometimes it's over a long span of time - like graduating college. Other times it's short - like waiting in line at a fast food restaurant.

But having to wait is inevitable, occurring hundreds of times each day. 

Right now I'm waiting to find out the options available for my mother upon discharge from the hospital, which could happen as early as today. 

In an ideal world, going home would be the top choice, but she's really weak from fighting a post-surgery infection and I'm really weak from trying to take care of her while still managing the rest of my life. I don't know that she can come home and stay safe because there just aren't enough people who can take care of her at the moment.

I have plans this week - doctor appointments, church groups, and work - that I need to adjust depending on what options we have and what we decide. It's the uncertainty... the knowing that what I can do depends on information I don't have yet... that's killing me right now. I just want to have enough information so I can work out plans for the rest of the week.

But I can't.

All I can do is continue to wait.

Caregiving is HARD! (Especially When the Caregiver has Physical and Emotional Issues Already)

I've been a partial caregiver for my parents for years. However, the majority of that time, they were mostly independent, sometimes to their detriment. (Doing too much led to some of the issues we are facing today.) The only time I was really called upon to help in everyday life was for small things, like helping my dad put on his diabetes monitor or assisting mom with hard to reach zippers.

The times they needed more extensive help were after each of their many hospital visits. I was usually the one who spent the most time at the hospital, arranged follow-up doctor appointments, helped to fill out paperwork, etc. I have three brothers who were involved, but when they came to the hospital, they sat and visited instead of really helping with their care - and when each of my parents was discharged, a lot of the care fell on me since we all lived together.

After my dad passed a year and a half ago, I've had to do more and more for my mom in everyday life, but she has still been pretty independent. I suspected that this latest surgery my mom had would lead to doing much more than what I've needed to do before, but there was a part of me that hoped I was overreacting. 

It turns out I was right. 

In fact, it was worse than I imagined.

As much as we love and are thankful for the doctors who did the very involved surgeries she needed, they didn't help with the reality of recovery. In fact, they didn't mention what the recovery would be like at all. But I don't blame them... I really think a surgery this rare has never been done before on a woman of my mother's age. No one knew what would happen. 

Let me explain what the past two months have been like - and what surgeries I'm talking about.

It all started on June 5th. After hearing about this one-of-a-kind doctor, we had to wait a couple of months for this date to come. Mom and I were collectively holding our breath, thinking at any minute that he would say the surgery was too dangerous, too complicated, just too much for an 87-year-old with all of her physical issues.

It turned out that she was seeing the only doctor in Alabama who would even discuss doing this kind of surgery on her.

Backstory: My mom had crushed her elbow in a fall when she was 6-years-old. She found out about elbow replacements in her 50's. Still somewhat rare then, this replacement had gone well... at first.

Then it broke. 

In 2014, she had a second elbow replacement, with a surgeon at the time who was the only one who would attempt that procedure. The surgery went well but he told her after her recovery that if something happened to it, there was nothing that could be done. There was too little bone left to attach the prosthesis to in the future.

Early this year, she fell and broke it again. She went for months dealing with horrible pain because she thought there was nothing that could be done. That is, until she found Dr. Smith at UAB and made that wonderful June 5th appointment.

Dr. Smith laid it all out. He admitted that he wasn't sure how to do it but he had several ideas in mind. He explained the options and after scheduling a follow-up visit, he told us that he would use the time until that appointment to talk to some of his colleagues around the country and get their input.

There were several ups and downs between that visit and the first surgery but we made it. We were told she would need to spend one or two nights in the hospital before going home. I told them I thought we'd probably stay at least three.

I was right.

But what was really disappointing was that it wasn't even a longer stay because the surgery was more complex than they thought. Well, actually it was more complex than they thought. Much, much more complex. So much so that they decided they had to do it in two stages.

In the first - that initial surgery - they would take out all of the old elbow replacement hardware. Then, at some point in the future, they would put in a total shoulder/humerus/elbow replacement. Where the first surgery was a couple of hours, the second would be much, much longer... ending up with her being about 8-9 hours under anesthesia. 

This time they said she would stay in the hospital two or three days. I said it would be longer.

I was right - again.

She was in the hospital and then a rehab hospital for 20, yes 2...0 days. I stayed with her in the hospital every day and night, only going home twice to take a shower. Though I didn't spend the night, I stayed with her in the rehab hospital all day, every day, with the exception of one right before she went home.

It was exhausting. It was draining. It was HARD.

However, it was nothing compared to when she finally got home. 

My mom has a condition called ulcerative colitis. In her case, it causes diarrhea and makes her need to go to the bathroom often and very quickly after eating. In other words, she often didn't make it. 

Furthermore, did I mention that the surgery was done on the arm of her dominant hand? She had no use of her right arm and hand at first, due to major swelling and not being able to move her shoulder at all. Plus, it was difficult for her to use her left arm/hand.

I'm not a very patient or selfless person. I was a teacher - not a nurse. Teachers need these traits but it's totally different. However, I love my mom and would do anything for her. I tried to make myself become what I needed to be to take care of her.

Have I said it was HARD?

I'm sure it's hard on anyone, but you add back pain, anxiety issues, bipolar swings, auto-immune flare-ups and other similiar things to the mix, and it's HARD. 

But I did it - somehow. Still, I'll be soooo glad when she's able to be somewhat independent again.

Happy Birthday, Jack

 Last fall my sponsor, mentor and one of my best friends passed away. Today was his birthday. We hardly ever celebrated each others' birthdays on the actual days but we always tried our best to celebrate them in some fashion.

The main way we would mark the occasion was to eat either Chinese buffet or Japanese steakhouse meals. It was a special treat and a fun way to spend time together, especially when we went to a Japanese steakhouse and had them cook it in front of us.

This morning I looked at my calendar and saw his birthday at the top of my items listed for the day. It's the first birthday in about seven years where I didn't at the very least get to call him and wish him a happy birthday.

As we are both Christians, my hope is that this is the best birthday he's ever had - one where he's not in pain, where he's not dealing with his addiction that so affected his life, where he's not living alone in a house he had a hard time taking care of as he grew older. 

But I've been mourning all day. I miss him incredibly. My husband and I went to a Chinese buffet and ate in his memory. It wasn't the same, of course. 

So... happy birthday, Jack. I'm so thankful that you were a part of my life. I miss you.

I love you, big brother!

Being Part of the "Sandwich Generation" is Hitting a New Level

I'm 57 years old. My mother was 30 when she had me and I was 31 when I had my daughter. So we weren't exactly "young'uns" when we each had our daughters. 

If you haven't done the math, that makes my mom 87 and my daughter 26. Previous blogs have chronicled the health issues my mom has as well as some of the mental and physical issues my daughter has. I've also recently written a lot about my daughter's move back home.

For those new to this blog, the short version is that four people live in this house - my mother, my husband, my daughter and me. ALL of us have auto-immune disorders, mental health issues, financial struggles, and strong personalities. 

Let me sum up some of the extra challenges I have during this phase of my life.

For most in my age bracket whose parents and/or children still live with them, it's their house. In my case, it's my mom's. I went through a major job loss and career change not quite a decade ago and in the process, I sold my home and moved myself and my daughter in with my parents (my dad was still alive at the time).

It's a very nice home... it's in an upscale community, with a total of 4 bedrooms, 3.5 baths, a kitchen, dining room, a garage, and two attic spaces right off the 2nd floor (so no pull-down ladder). I'm thankful for that. 

However... the only space that's "mine" is an upstairs bedroom (and I sometimes still have difficulty with stairs, even though overall I'm losing weight and getting stronger) and a study full of what my husband and I need for our photography/writing business. 

Previously, I had 3 rooms - a den/kitchenette (so my husband and I could have some things of our own and not in my parents' kitchen), plus the bedroom and study. We had to move the couch from the den to the bedroom and the apartment fridge into the study, so our already cramped space became even more cramped. 

Here's the real fun right now... my daughter has 4 cats. She won't let them go outside unless they are confined because she has some big anxiety issues about them getting hurt. There is absolutely no space in her bedroom to have a litter box, so we built a "catio" outside her window with a cat door as access. This space has space for them to play, sunbathe, and use the gigantic litter box we included. 

Her bedroom and our study are connected by a small foyer with a bathroom in between the two rooms. We have double swinging doors at the entrance of this area.

I have one cat who goes outside as she pleases through a cat door in the living room window. This means my daughter's cats can't go out into the main house because they might use the cat door to go out. So, to give her cats room to run, each night my daughter lets them out of her room, locking the double doors with a barn door lock. 

This means during those hours, I have to fight my way into and out of my study to make sure none of her four escape. I can't just go in and grab a drink from my fridge or work in the wee hours of the morning (my favorite time to work) because of them. It's been a BIG adjustment.

Before I go on, I want to emphasize that I'm thankful she's here. She was in a toxic relationship and she needed time to heal. Our relationship is better than it's ever been with her here again. With my mom's surgery, it's nice to have someone else in the house to take care of her when needed. 

But that doesn't make it less difficult.

So, going on... my mom just had surgery. When she was a child, she broke her elbow, which never healed properly. About 10 years ago, she finally had an elbow replacement. Then she injured it again - and needed a second elbow replacement. This was rarely done (at least then) and they told her nothing could be done if it was injured a third time.

Well, she fell on her shoulder - where the rod was attached. The rod came out of her humerus bone, causing her a lot of pain. She was still able to use that hand (her dominant hand) and had partial use of her arm but the pain made her seek out help.

She finally found a doctor who would tackle this complicated and risky surgery - the only one in our state that would. We both held our breath every time his office called or we had to go in for an appointment, thinking that at any point he would say it couldn't be done.

We were wrong. It was done.

However, when the surgeon got in there to fix it, he said that the old hardware was "rattling around." None of the several options he had planned on were able to be completed within that one surgery. Any additional time under anesthesia could be fatal (and I'm not being dramatic.)

Midway through the surgery, the doctor called for a conference with my brothers and me to tell us the news - and to ask our permission to do the plan he had mentioned briefly but never really thought he'd have to do. 

The only real option was to do the procedure in stages... the first being the surgery that day, which meant taking all the old hardware out. Then he wanted to wait about a month for her arm to heal somewhat (they had to cut a bone to get the lower part out) before doing the second surgery.

What none of us had planned on was the impact this change would make. She was supposed to be able to use her arm within a few days of the first surgery. Now she can't use it at all until the second surgery - there's nothing holding her lower arm to her upper arm. 

It's the little things that make life so difficult. She can't open a jar of medicine to take a pain pill. She can't carry anything because she had to switch from a rollator walker, one that has a seat that she used to carry items, to a cane. She can't make a cup of coffee in the morning as she can't open the creamer she loves. 

Plus, there's so much more that she either struggles with or can't do now.

Currently, my business is practically dead. This is a wonderful thing because she needs someone around all the time, but it means one more month of taking money out of what was supposed to be for retirement. 

The hardest thing for me is how I'm always torn. If I'm helping her, I feel I should be working. If I'm working, I feel I should be helping her. I have to arrange for someone to be here when my husband and I are gone to a physical therapy session (the result of when we were rear-ended and my car was totaled) or a doctor's appointment. It's really difficult to go to the YMCA to work out. I've even had to miss church.

This challenge multiplies on the many days my back is hurting. One example is when bending over to help her dress, as there's a lot of strain on my back. 

Like I did with my daughter, I also want to emphasize that I'm glad I get to be here for her. The other option would probably be some type of rehab center, an incredibly expensive option where she would be miserable not being able to be at home.

Even though I'm thankful I get to have my daughter back home and I am able to take care of my mother when she needs me, it's just plain ol' hard. I don't know how those of you out there who do this kind of thing with much, much more intensity - like having several children with disabilities, or having both parents going downhill fast, or fostering children who have come out of rough situations - make it.

I guess we all just have to live day by day (sometimes minute by minute) and do the best we can. At least that's what I'm trying to do.

 

An Email to the Pastors of My Church About True Community

A few things you need to know before you read this. 

One - I've purposefully left out names in this post.

Two - I wrote it during the individual portion of our church's weekly early morning prayer time. I still debate with myself whether I should have done it then, but I also know that if I wait on something like this, it either won't get done or I'll forget aspects that were important at the time. 

Three - It has taken me a while to post it. I wanted to really think about whether it should  be posted - and to give those I sent it to time to react. Before you read it, I want you to know that both of my pastors came to me separately and apologized. They each acknowledged that they dropped the ball on this and they would work on ways to hopefully make this less likely to happen to others in the future.

*****************************************************************

This might not be the best use of time for prayer - and this wasn't my intention when I came this morning - but what our speaker this morning said touched on something I've been debating on bringing up.

You both know how much I love this church. I also think you both know that I was pretty much dedicated to never going to church again just over a year ago (other than to Deaf Church, and that was to practice sign language more than being "at church"). While covering the K-Love Fan Awards Weekend last year (the weekend before first coming here), God did a work in me and I had a desire to find a church. I had no idea where to start but when I googled it, this church's name jumped off the screen at me. When I watched a video of a service I pretty much knew.

It took maybe 15 minutes for me to fall in love when I first came June 2, 2024. This church ticked off almost every box that I had prayed about in the past (before I gave up on church). There wasn't a doubt that I was supposed to attend this church.

And I was right. It is an amazing church. I believe that God is doing great things here. 

But I recently had something happen that made me have to fight a battle on whether I could stay or go back to where I was before - being so hurt that I couldn't get past it and giving up on the idea of church again.

I think you both know about my daughter moving back home - I've shared about it in several prayer requests. Well, she doesn't have anyone who could help her move and other than at church, my husband and I don't know many in the area (one issue with freelancing). The few friends we have are either older or live far away. We couldn't afford to hire anyone. Those in my family have various health issues that kept them from helping. 

On top of that, a few weeks ago my husband and I were rear-ended and my Santa Fe was totaled. I had planned to use it extensively during the move. The wreck caused my back issue to get worse as well as it causing other, new physical issues. My husband, who was driving, also got banged up also with back and neck issues.

I've known for a while that it was going to come down to only my husband, my daughter and me to do the move. My daughter and I have back issues and can't pick up anything heavy. We also both have issues with stairs (and the attic where most of her stuff was going to go is at the top of a long flight of stairs.)

So, mostly the entire move was on my husband - whose back was also hurt during the wreck.

I shared this with my small group, fully expecting help. After all, I thought that was what small group was for. 

Only one replied, but later had to cancel. 

I happened to share it with a friend at church, who shared it with her small group, and she had one in her group volunteer to help for a little bit. The one who canceled from my small group ended up being able to help with one load the last night we had to get everything out. 

But other than that, nada. 

Oh - I shared this with the worship team and a few others I know at church, practically saying I was desperate for men and trucks. 

I knew how hard it would be on me (who would try to do too much and strain my back even more than it already is) and my daughter (same issue). But mostly I knew how hard it would be on my husband, literally carrying the bulk of the load, going up and down the stairs with multitudes of boxes and small pieces of furniture. (Thank God there wasn't a lot of big furniture). 

For a church that I know loves people and loves to serve, why wasn't there anyone who would help us? I assumed that my small group would help... I even thought they would come full-force and really help us knock it out. 

I know that I have a lot of crap that I deal with - and share. For a while I've been wondering if (1) those in my small group are tired of hearing it and so they dismiss what I share or (2) if they don't believe me and think I'm making all this up for attention. 

The lack of help for the move made me wonder even more if this is true.

I'll be honest - I'm hurt. I'm frustrated. And I thought about leaving. However, I know that God has us here so leaving isn't an option. 

I've been planning to share all this with you since the move (about 2 weeks ago) but I've been holding back and trying not to share about my life for the reasons above. However, about a week ago, I told our marriage counselor about what happened and he encouraged me to tell you.

I still love this church. I used to love my small group. I'll be honest again - now I have a hard time trusting them. I feel that they don't have my back - and, as I said earlier, I thought that was the main reason for small groups to exist. 

Like the speaker this morning said, I know our church isn't perfect. I know the individuals who make up the church aren't perfect. I definitely am not. 

But this was rough. Having my daughter move back in with us is an extreme change. The physical move messed us up physically and emotionally and adjusting to her being here is an adjustment like no other. My husband and I basically lived in 3 rooms before - a den/kitchenette, a study (which is filled with all of our photography equipment as well as big desks for the large monitors we need when editing), and a bedroom. Now we live in 2 rooms - a bedroom/den (we moved the couch in there) and the study. My dresser is in the landing at the top of the stairs as is our bedroom/den. It hurts to climb the stairs, so I hang out at my desk way more than I should.

Even though it's a huge change, there were no other options and we will do anything to keep her from being homeless. I feel that that God is going to use this time to bring her to Him. But even knowing that, it's still really, really hard.

Most likely there were really good reasons for people not helping. I know everyone is busy and many also have physical issues that prevent helping. 

I don't want pity and I'm working hard to not feel like a victim in all this and the other things that keep happening in my life. I just wanted to be acknowledged. I forgot to mention that not one person even said they couldn't help. Not one asked if there was another way they could help. Not one took me aside to listen to what I was going through. One person at church did tell me last Sunday that my email went to his spam folder and he just happened to find it, so I take it back - there was one... but it was 2 weeks too late. 

Like I said before, I know I share a lot - and I have a lot going on where I need support and prayer. Am I not supposed to share all this? Am I supposed to keep it in and just pray and hope by myself? 

In Matthew West's song, "Truth Be Told," there's one verse that says "There's a sign on the door that says, 'Come as you are,' but I doubt it... 'cause if we lived like that was true, every Sunday mornin' pew would be crowded. But didn't you say Church looks more like a hospital? A safe place for the sick, the sinner, and the scarred... and the prodigal like me." 

I feel this church is one of the closest I've seen to the hospital in this metaphor. But instead of treating everyone, it only treats some. Thinking more about it, I am supported - when I'm growing in my faith journey - not so much when it's a personal, real-life matter.

You know about this blog - "Spotlight on Stigma: Welcomed but Not Accepted." On it, I try to be honest in all the crap I deal with, in all the good, in the struggles and in the victories. But one of my main tenets is to be real. That means sharing what's really going on in my life - good or bad. 

That's who I am - that's one of the things I feel God has called me to do... to be vulnerable so that others know they can also share their hurts and questions as well as victories. I don't want to have to change who I am to fit in at church. I really thought we were more than that.

By the way, my husband feels the same way.

We love you guys and we still love our church. The joy I had playing guitar with the team last Sunday was real. But so is all of this. We refuse to let something like this get in the way of what we feel God is doing. We just don't know what to do with those feelings.

*****************************************************************

Okay... when editing this months later, I decided to add the following - and THIS happened. 

*****************************************************************

Remember my note at the beginning about my pastors coming to me to discuss it? They could have easily ignored it, put the blame on someone else, told me it was my fault, or a myriad of other options. Instead, they saw it as an issue and said they would work to fix it. 

They aren't perfect, but I love them even more because of that. When church leaders acknowledge that they don't know it all and don't do it all right, I can trust them. My church isn't perfect either.  

Uh, oh. What?! Did I just say my church isn't perfect either? If I feel I can love my pastors more because they aren't perfect and don't know it all, how can I not give church members the same grace? 

Whoa! Light-bulb moment!

This is something I need to think about. Yes, I still feel the church should have helped. Yes, I wasn't wrong in feeling hurt when my church dropped the ball. But there may be much more in this than I realized.