Tuesday, February 3, 2026

Tuesday, February 3, 2026 -- Mattie died 831 weeks ago today.

Tonight's picture was taken in January of 2002. It took me months to clear out this space, as my desk used to be where the crib was and I had books and things all over the place. Slowly but surely, things got organized, filed, thrown out or donated, and my parents and I purchased the crib, baby furniture and linens. Ironically to this day, Mattie's bureau is in my bedroom and I use it for my things. Notice I put up a Hey Diddle Diddle border by the crib area, because I always loved black and white cows. But what strikes me now about this is..... there is a moon in this nursery rhyme. Who knew this would eventually be Mattie's symbol in preschool and a name that we still use today..... our MATTIE MOON! 

Quote of the day: Tell your friend that in his death, a part of you dies and goes with him. Wherever he goes, you also go. He will not be alone. ~ J. Krishnamurti

I woke up later than usual today because I am struggling with a head cold. Though I thought it was going to be a more even paced day, it wasn't! I started the morning by changing the linens on my own bed. I am so busy keeping up with my parents' bed linens, which is a large chore, that I do not change my sheets as often as I used to. This morning, I had just about enough, and decided.... no I am taking the time to do this for myself! Especially with a head cold! Indie spends so much time on my bed, by my pillows, that I am breathing in fur! But as I have learned no good deeds go unpunished. 

Throughout the morning, I checked on my dad twice in bed. In fact, one time I got him up to reposition him, so his back wouldn't ache. By the time I got myself showered, dressed, made breakfast, cleaned out the litter box, and cleaned up the first floor, I must have gotten back upstairs to my dad at 10:30am. So later than usual. As I went into his room, I saw the disaster awaiting me. It wasn't as bad as when he had Norovirus last week, but it was bad enough. No matter how well I protect the bed, he soils all the linens, it lands up all over the bed rail, the bed frame, and the box spring. Truly I wanted to cry over seeing this, because it took me a week to clean, disinfect, and air out their bedroom while my dad was in the hospital. The only advantage to today, was I knew exactly what I had to do to address this mess! But I wasn't happy, as that set me up to strip their entire bed (AGAIN!), and do five loads of laundry. Not to mention hours of cleaning and I got the fans out and had them running all day! Of course while I am doing this, my dad is clueless. He has NO understanding for what just happened, the amount of effort it takes to clean him and everything around him, and most definitely has no memory of last week much less today. 

Seeing the drastic changes in my dad are sobering. Let me put some things into context for you. When we go out to lunch with my parents, I tend to do activities with my dad. Otherwise, he sleeps at the table, my mom is glued to her phone, and it leaves me in silence. 

Yesterday, I tried to do this 'find the object' activity with my dad. Even coaching him through it, was close to impossible. He couldn't remember what the purpose of the activity was and truly he was lost in his own mind. This is a significant change from just a few months ago, where he used to like doing such activities. 

Two days ago, I tried to do this activity with my dad, which was to look at both pictures and find the differences between the two of them. You would have thought I was asking him to discover the cure for cancer. It was that difficult to think through the process and come up with some observations. I even color coded some objects to help him, but that accomplished nothing. 

Overall, another sad day in a sea of sad years. There are great differences between seeing Mattie die and watching my dad's decline. I know the outcome with eventually be the same, but the journey is different. Nonetheless, it is so unfortunate that in all my caregiving experiences, the patient never gets better. Instead, I am learning the painful art form of helping someone live with as much dignity and  as in little pain as possible before their death. 

Monday, February 2, 2026

Monday, February 2, 2026

Tonight's picture was taken in May of 2003. It was at my doctoral graduation party in Washington, DC. I remember that moment in time as if it were yesterday. It seemed like anything was possible back then. Mattie was a year old in this photo, and basically I collected data and wrote my dissertation while Mattie was an infant. I assure you that was NOT easy, but his presence in my life motivated me to get this very hard task behind me. Pictured with us was my dissertation chair (Carol), who not unlike myself is a perfectionist with high expectations for herself and others. As Carol once told me about my dissertation.... Vicki NOT all dissertations are created equal! Which translated into.... Vicki you did an excellent job!

Quote of the day: The truest devotion is that which we give with no expectation of return. ~ Khalil Gibran

Recently I received an email from a good friend and colleague of mine. She knew me way before I had Mattie. When we met each other, I was the president elect of a national professional counseling association. Back then I was in my late twenties, but I was also working on my dissertation, which focused on the stresses of family caregiving. My friend was caring for her mom at the time, so though I wasn't a caregiver, I had the clinical insight into what she was balancing. I think caregiving was one of the many things that bonded us together.  

My friend continues to reach out to me and in her latest message, she said something that got me to pause. In essence she was saying given all the incredible loss and heartache I have recently faced with my divorce, that it would be understandable if I took a break from Mattie Miracle. Or gave up Mattie Miracle altogether, given that this was a non-profit that I co-created with my other half. Yet, as my friend noted.... I DID NOT do that! Not only did I not do that, I have run Mattie Miracle seamlessly. 

Many people in my world do not know I am divorced. It is not something that I am screaming from the roof tops, mainly because to me, a marriage vow is forever. As I always say..... in the eyes of the Catholic Church I remain married. But reflecting on my friend's astute reflections, she is absolutely correct about me. Love, responsibility, and commitments guide my life. I can think of NO GREATER responsibility than being a mom. But being a mom to a child who is no longer alive is actually harder. It is harder because it requires discipline to remember the nuisances of your child, as the mind is good at playing forgetful tricks on you. Which is one of the reasons I write the blog daily.... it is like working out my mental memory muscle, which enables me to have the fluidity to nurture Mattie's memory and share him with you.

But tonight's quote speaks to what my friend was pointing out...... true devotion is given with no expectation of return. The work I do with Mattie Miracle has been done for 16 years, in which I never received a salary, I receive no monetary benefits (which would have helped with my future), and when I help others like Mattie, I get no kudos, that-a-girls, or anything tangible in return. As my friend points out.... not many people could handle that level of commitment and devotion. I never really thought too much about this until we had this email exchange. 

What I do know is that my life is guided by my love for Mattie, it is guided by the insights of Mattie's cancer treatment and journey, and in turn I am devoted to using that knowledge to help others like us. For me KNOWING that we are: (1) funding wishes for children with cancer (and in some cases we are funding wishes that other organizations wouldn't necessarily support because of the child's age, or the fact that the child is a survivor or is dying), (2) we are paying the therapy bills of children with cancer (so they can get the necessary mental health support in the community), and (3) we are funding the salary of a child life professional (to help children within a hospital setting).... these are the Mattie Miracles! That said, if you just scratch the surface of who Vicki is, you will see that these miracles are inspired by the devotion of a mom to her amazing son.

Sunday, February 1, 2026

Sunday, February 1, 2026

Tonight's picture was taken in March of 2002, a month before Mattie was born. By that point I was already on bed rest and feeling extremely uncomfortable. With Mattie, I gained 50 pounds. Notice "Nurse Patches" in the background! She was the best cat! That day, my friends were hosting a baby shower for us, so I was working on pulling myself together. 

This was me at the party. I know my friends weren't sure whether we should have the party or not, because I was only allowed up on my feet for so long each day and I was supposed to remain calm. Not my best state!!!! Friends and family attended this event, and I can see one of my mentors, Don, in the background. Don was the person who gave me his cuckoo clock (which is in my front hallway), and he gifted Mattie the book, Goodnight Moon. Goodnight Moon had to be our all time favorite book, as we read it so often, we could recite it by heart!

Quote of the day: That if desperate times call for desperate measures, then I'm free to act as desperately as I wish. ~ Suzanne Collins

My dad developed hiccups on January 21, during his first visit to the emergency room. As of yesterday, my dad had been suffering with hiccups for 12 days! Last night's bout lasted four hours. My mom was hysterical and I truly wasn't sure who to manage first. It was at that point that I gave my dad a combination of Advil and tums. Normally, because my dad has a pacemaker, I do not give him Advil. But since I think Advil is one of the world's greatest inventions, I decided to try it on him. Understand that there is NO research evidence that supports the use of Advil with intractable hiccups. 

Within 15 minutes of giving my dad Advil and tums together..... the hiccups stopped. So I decided to give my dad Advil every four hours today, along with tums at every meal. All I can say is we had a hiccup free day. Now I am not saying that this combination stopped the hiccups. I can't prove it, as it could just be a result of him healing from the norovirus or that the hiccups just ran their course. I truly do not care what the explanation is, all I know is I am hoping this is a trend because my dad is exhausted from hiccupping and my mom was on the edge emotionally. Remember she has been dealing with his intractable hiccups since the 1980s!  

This afternoon, I took my parents out to brunch. We haven't been able to visit this restaurant for two weeks. Getting my parents from the car into a restaurant now is a show. First I get my mom out of the car and into the restaurant, and then I help my dad out of the car, while carrying his pillow, two blankets, my purse, and a large tote bag of supplies. Once I got my parents situated at the table, I ran back outside to park the car. One of the managers came over to me while I was in the hallway. He gave me a huge hug, and told me that they missed us. He also wanted me to know that he admires me and considers me a strong woman, as he said not everyone could or would do what I do each day. He happens to be a religious person and said that he believes God sees how devoted I am to my parents and that there is no way that God will not be looking out for me in my future. Actually he said that God will provide unexpected gifts to me. He then hugged me again because he was at a loss for words. 

Rarely do I receive hugs now, so when I do, it is a reminder that someone thinks I am deserving of love. What are my thoughts on his feelings about God providing unexpected gifts? I don't know! What I do know is I have learned to have little to no expectations anymore in life, because the only thing I have experienced is love is fleeting and it leaves to heart break and isolation.  

Saturday, January 31, 2026

Saturday, January 31, 2026

Tonight's picture was taken in November of 2001. By that point I was four months pregnant with Mattie. Before Mattie was born, I went through a huge clean out and reorganization of our apartment. In one of our bedrooms was this very big walk-in closet. As you can see I was in it and clearing out shelves and things to get ready for our new addition. In fact, that whole room went through a big clean out, and it got transformed from my office space into Mattie's room. They talk about the  "nesting" instinct while pregnant, I would have to say this was true for me, because by the time I finished with this space it looked like a baby would be living in it. 

Quote of the day: I felt her absence. It was like waking up one day with no teeth in your mouth. You wouldn't need to run to the mirror to know they were gone. ~ James Dashner

Since my dad has come home from the hospital (on Tuesday), he has been refusing to eat real food. He only has wanted soft foods and bread. I am slowly integrating real food back into his diet. My dad is not a vegetable person, but last night I decided to make cream of broccoli soup. It is a hearty soup and when I served it to him, I did not tell him it was broccoli. Telling him would have only caused him to push the bowl away from him. After he ate the soup and loved it, I told him it was broccoli soup. He was stunned. In any case, his is definitely regaining his appetite. 

Things still remain challenging as my dad is having bathroom issues and I look forward to the day that this virus is completely out of his system. I think until this virus is gone, there will be NO breaks from hiccups either. Today I tried all sorts of home remedies to manage the hiccups. The problem with any solutions that involve deep breathing or holding his breath is that my dad truly can't hold his breath. Not even for a second. I can't determine if he doesn't understand how to cognitively do this or that he just physically can't do it. But breath holding is a great way to reset the spasms and I am frustrated that I can't get him to participate in any way to help himself. This is one of the many things about dementia that I absolutely hate.

I spent the day doing more clean up around the house and while going room to room, I found that my Christmas cactus was abloom. I absolutely love Christmas cactuses. We used to have a very big cactus that we brought with us when we moved from the city in 2021. However, in the fall of 2023, with the start of my separation, I was so distraught that I forgot the plant outside. Typically we would have the plant summer outside and winter inside. By the time I remembered my beautiful cactus was outside, it froze and died. 

So I went to Lowe's and bought a small plant. It was so small, it fit in the palm of my hand. Since 2023, it has been growing and it is blooming beautifully. There is something very special about seeing greenery and flowers in the winter and if you were to see my all-season room now, you would find it filled with palm trees, a zee plant, prayer plants, hibiscus plants, geraniums, an orchid, and even old poinsettia plants that have continued to thrive. 

Friday, January 30, 2026

Friday, January 30, 2026

Tonight's picture was taken in January of 2002. I was six months pregnant with Mattie. I literally have a photo file entitled, "Belly Shots," as we anxiously were tracking from month to month my/Mattie's growth. I remember this particular night captured in this photo, as we were headed to a company holiday party in the city. I was surrounded by a lot of twenty somethings and in comparison to them, I felt enormous and uncomfortable. About a month after this photo was taken, I went into premature labor. The doctor was able to stop the process, but I remained on bedrest until Mattie was born in April of 2002.

Quote of the day: There are no goodbyes for us. Wherever you are, you will always be in my heart. ~ Mahatma Gandhi

As if things couldn't get worse.... they do! My dad has been dealing with hiccups since last Wednesday. So we are talking 9 days and counting. I finally found a combination of drugs that was helping to slow down the number of hiccup bouts in a day and the duration of each bout. However, I had to STOP all of these medications last night! Why? Because while we were watching TV together, I observed the following out of the corner of my eye:

• lip smacking
• tongue darting
• dancing fingers

I knew exactly what was happening, because I observed my grandmother develop Tardive Dyskinesia from medications. Tardive Dyskinesia is a reaction to most likely mental health or gastrointestinal medications, which typically can be reversed if you stop the medication. My dad was on a cocktail of medications for a day and half with me, but of course was also given doses within the hospital for three days. In addition to the above symptoms, my dad was lethargic, appeared unsteady on his feet, and sleepy. These are recipes for disaster, as he is a big man, and I can't afford for him to fall or to fall on me. SO ALL MEDICATIONS WERE STOPPED. 

This morning, I noticed that the Tardive Dyskinesia symptoms disappeared but in their place was a mental status change. My dad was talkative, argumentative, and delusional. By 10:30am, I thought I was going to jump out of the window managing his energy level and bowel movements. Thankfully today was his memory care center day, and all the staff are aware of his symptoms and issues. On the drive to the center, my dad was seeing things along the side of the road that were NOT actually there! He kept pointing them out to me and at first I literally wanted to say..... are you kidding me? But then I put my clinical hat on and my inner dialogue was.... you never confront a person having a delusion. You should either accept it, learn more, or divert the attention away from the delusion. I did both with my dad. So he felt heard and I was able to keep things calm. 

Of course without hiccup medication, WE HAVE FULL BLOWN hiccups! My dad's doctor doesn't want him on anything right now until his mental status improves. I totally appreciate that, but at this point I seek divine intervention to solve this problem because I am at my wit's end. 

Thursday, January 29, 2026

Thursday, January 29, 2026

Tonight's picture was taken in January of 2003. Mattie was 9 months old and I am not sure what I love more about this photo! Mattie's cute reindeer onesie or that look of happiness and excitement in his face! Mattie did not like spending time sitting on the floor. He preferred being up on his two feet and moving. So whenever it was time to play on the floor, I always tried to make it as engaging and stimulating at possible. Apparently Mattie approved of my efforts that day!

Quote of the day: But nothing makes a room feel emptier than wanting someone in it. ~ Calla Quinn

My dad had a 9:15am virtual appointment with the neurosurgery department. This was a follow up to his brain bleed in December. All I can say is THANK goodness they changed this appointment from a live one to a virtual one, because I would never have made it to the hospital in time. Not unlike yesterday morning, this morning's bathroom routine sent me over the edge. I literally can run around the bathroom collecting poop, and no matter what I say to my dad cognitively nothing registers with him. 

I got him downstairs and to the breakfast table in time for me to log onto my iPad and launch the virtual visit. My dad knew we were going to be talking to the nurse. I even wrote the appointment down on the white board in front of him. Yet while talking to the nurse, he was distracted, shuffling papers and moving plates and glasses around on the table. Naturally I am very aware that this is no longer my dad. This is my dad with moderate to late stage Alzheimer's. Any case we got through the appointment and she is concerned by the medications he is taking for the hiccups as they could make him drowsy and a fall risk. I told her I understood, but I can't let him just keep on hiccupping. 

What my mom and I have learned antidotally from past experience is the longer the hiccups continue unresolved the harder it will be to irradicate them. Which is why I am trying to aggressively manage this situation. 

Needless to say over the course of the last day or so, I have read a lot of articles on intractable hiccups. There are patients like my dad where monotherapy (one drug) doesn't work, and therefore a combination of drugs is needed. Between the hospital and my dad's doctor, I have access to muscle relaxants, proton pump inhibitors (basically antacids), and anti-nausea meds. Since Baclofen (a muscle relaxant) cured his intractable hiccups in 2020, I feel compelled to stick with that drug, rather than a different muscle relaxant. However,  I have learned that intractable hiccups can be triggered by neurological problems or gastrointestinal issues or both systems can be involved. Baclofen calms the hyperactive nerve signals causing the spasms, so I felt I needed to pair it with a drug that addressed the gastrointestinal side of things, which led me to Reglan. So since yesterday, I have created this plan:

• tums right before every meal
• Baclofen (10mg) every 8 hours (so three times a day)
• Reglan (5mg) twice a day (I administer it three hours after Baclofen)

On Wednesday, my dad had countless bouts of hiccups, each bout lasting 2.5 to 3 hours straight. Then about a thirty minute break between bouts. His hiccupping occurs while eating, resting, and sleeping! After a day of being on the medications listed above, I would say that today, my dad has had at least 6 bouts of hiccups, but none of them have lasted more than 30 minutes. That may not sound great, but to me this is a noticeable improvement. All I know is my mom and I are on EDGE, my dad is wiped out from hiccupping and the side effects of the medications, and overall it is a very challenging time for us. 

On top of this circus show, I am now turning my attention to taxes. Another thing I absolutely hate. I try to stay organized and collect the documents that are needed, but no matter how diligent I am, there always seems to be documentation I struggle with obtaining. I am so grateful that I work with an accountant, because if I had to figure all of this out myself, it wouldn't be wise. 

Wednesday, January 28, 2026

Wednesday, January 28, 2026

Tonight's picture was taken in May of 2002. Mattie was one month old. Each day I would try to capture photos of Mattie and this one I titled..... Do you hear what I hear??? Mattie had a precious baby face and he was born ON, engaged, and wanted to take in the world around him. 

Quote of the day: Every object had a shatter point, a limitation to its tensile strength. Apply enough force, and it would break. ~ V.E. Schwab

I woke up this morning to a credit card security fraud alert on my phone. That was at 6:30am. Nothing jolts me out of bed faster than fraud! Turns out everything was okay because it was an auto renewal of a membership. So it was a known charge to me! But honestly, I have now become a person who gets anxious over emails, texts, and mail!

I wish that was the end of my morning anxiety! Forget it. When I went to wake my dad up and got him in the bathroom, he proceeded to poop all over the bathroom floor. I got him in the shower, was cleaning the bathroom floor, and he pooped all over the shower! Which of course meant cleaning him thoroughly and then scrubbing the shower. When I finally got my dad cleaned and dressed, he pooped once again all over himself, the bathroom floor and his clean clothes. It was two hours of torture. Mind you I spent over a week getting the smell of norovirus out of their bedroom. That took Clorox, white vinegar and constant fans running. In fact, while my dad was in the hospital, I removed my mom from that room altogether for a deep clean out. 

Originally I had a conference call scheduled today at 11am. However, given the nightmare I was juggling. I had to reschedule the call for thirty minutes later. I hate doing something like this because it reminds me that I have NO CONTROL over any aspect of my life. It is hard to look professional when juggling the care of two 90-year-olds. When my parents moved in with us in 2021, it was a hard and painfully SLOW adjustment for me to say good-bye to all aspects of my life.... friends, outings, events, social activities, free time alone, and of course being able to schedule Mattie Miracle meetings and gatherings. But this is the life of a full-time caregiver, it is absolutely impossible to juggle anything else. Today was a reminder once again of my reality and it is frustrating, upsetting, and makes me angry because caregiving was thrust upon me, and when I agreed to do this, I agreed because I wasn't going to be doing it ALONE. Trying to do all of this while going through what I deem a horrific divorce is close to impossible. 

It was such a bad morning that my "former" in-laws called me. They were both worried about me. I could hear it in their voices and when I did not respond to their text messages earlier in the morning, they knew something was wrong. Truly anyone following my saga wonders.... how hasn't Vicki cracked up yet?

But the pièce de résistance, is the hiccupping! I honestly do not know how I am going to manage this, as my dad has been hiccupping for a week now! Doctors are clueless and have no other solutions and basically it is me who is left to deal with it. My dad is exhausted from hiccupping and I have no idea if it recovering from Norovirus or the hiccupping, but he is refusing solid food. So overall, it has been a hellish day in my house with no end in sight.  

Tuesday, January 27, 2026

Tuesday, January 27, 2026 -- Mattie died 830 weeks ago today.

Tonight's picture was taken in April of 2002, about five days after Mattie was born. Why am I posting this photo tonight? Because when I picked my dad up at the hospital today, he wasn't in the main hospital building. He was in the building pictured here, which is now renamed... Women and Child Health. As I was picking up my dad and helping him into the car, I had many happy families all around me placing their newborns in the car with them. Honestly, that sighting alone made me very uneasy, sad, angry, you pick the descriptor. Why is it that I stood in this same location as these parents in 2002, and yet for me my child died and then my long-term marriage landed in divorce? All I know is it is a painful reality, which is one of the reasons I hate being anywhere near this particular entrance of the hospital. 

Quote of the day: I think the purest of souls, those with the most fragile of hearts, must be meant for a short life. They can't be tethered or held in your palm. Just like a sparrow, they light on your porch. Their song might be brief, but how greedy would we be to ask for more? No, you cannot keep a sparrow. You can only hope that as they fly away, they take a little bit of you with them. ~ Emm Cole

I do not know if it was the pending return of my dad today, but what I do know is I did not sleep well last night. The notion that I have to manage my dad's intractable hiccups alone is daunting as I know this hiccup sound truly upsets my mom and neither of us like to see my dad that debilitated. 

At around 12:30pm, I told my mom that I had to mail the cookies I made, and therefore I was going to drive to the UPS store and then would return for her. Sure I wanted to mail the cookies, but I also wanted to assess how safe our neighborhood was to drive. I preferred doing this without my mom in the car, as she can get fluttered and anxious quickly. Thankfully the roads in my neighborhood were cleaned fairly well and certainly the main streets were great. 

I returned home, got my mom, and at 1pm, we were back to the road. I first wanted to visit Mattie Miracle's post office box and pick up the mail. While I was driving the hospitalist called me. What is a hospitalist? This is a medical doctor who specializes in the care of patients solely while they are admitted to the hospital. They work on-site, providing continuous monitoring, rapid, in-person responses to emergencies, and coordinating care between specialists to speed up recovery and improve outcomes. For the life of me, I have yet to meet a hospitalist that I like. I am not just talking about hospitalists at this particular hospital either. I am sure they have their own pressures placed upon them by the hospital system and insurance companies, but overall, I have found many of these physicians are rigid, they have black and white thinking, and truly they seem disinterested in receiving input and concerns from caregivers.

When my mom and I got to the hospital, I was carrying a bag of clothing and things for my dad in one hand, along with my purse, and holding my mom's hand with my other hand. Typically I bring a luggage cart to the hospital, but since I did not think we had a long walk from the car to the room, I did not bring it today! BIG MISTAKE. We went through the security process at the hospital and took the elevator up to the fourth floor. When I got there, I couldn't find my dad's room. Thankfully two nurses assisted me and it was at that point they told me that my dad's room wasn't in the main hospital building, but over in the Women and Health's Building. Which I assure you is a big walk with bags and my mom in tow. But we did it!

When I finally got to my dad's room, his door was shut. I opened it and I found him slumped over in bed, sitting in urine, hiccupping and out of it. You can imagine how this hit me, especially since the doctor had been telling me how well my dad was doing. The room my dad was in was literally the size of a closet. It had two chairs in it, the kind of chairs that harken back to my old elementary school days! My joke today was this was where the hospital put patients and family members who need to sit in the corner for punishment. The room couldn't possibly contain more comfortable chairs, because they just wouldn't fit. The room looked like a mess and I was so busy trying to wake my dad up, stabilize his hiccupping, and cleaning up the space around him that I forgot to take a photo of this noxious space to share here. Oh and by the way, the room felt like a sauna! I like heat, but this was sickening! In addition they had a video camera on my dad, which meant to me they were understaffed during the storm.  

I did meet with the hospitalist, who wasn't concerned about my dad's hiccups (which he has had since last Wednesday). I told the doctor that he may not be concerned by the hiccups because he doesn't have to manage a loved one with them! He just kept saying over and over to me.... we can't keep your dad another day! To which, I said.... YOU ARE NOT LISTENING TO ME! I never suggested that my dad remain in the hospital, on the contrary, the hospital is the worst place for a 90 year old! I told him what I DID WANT FROM HIM was scripts for various medications to help manage the hiccups. 

Any case, my dad is back home after three nights in the hospital and I am hoping I can keep him out of the hospital for a while now. But so far it isn't looking good:

July 2025: Hospitalized with a virus after falling on the bedroom floor (spent three weeks in the hospital)

December 2025: Brain Bleed (spent a week in the hospital)

January 2025: Norovirus and intractable hiccups (spent 3 days in the hospital)

Monday, January 26, 2026

Monday, January 26, 2026

Tonight's picture was taken in January of 2003. Mattie was 9 months old and I took him outside in our commons area of the city to walk around in "Tot Wheels!" This was Mattie's favorite thing to do..... walk and be independent. You would be amazed how he could steer and maneuver this big thing throughout our first floor. Tight corners and door ways didn't stop him, Mattie just had natural spatial ability! I am so grateful for this enclosed outdoor space, because it was in this space Mattie learned to walk, ride a bicycle, fly a kite, play with our neighbor's dog JJ, and of course drive Speedy Red (a ride-on vehicle).  

Quote of the day: "Put your oxygen mask on first" comes from standard airline safety instructions, used as a powerful metaphor for self-care, meaning you must secure your own well-being before you can effectively help others, a concept echoed by leaders, coaches, and mental health professionals.

I am sure we have all heard tonight's quote in some shape or form. Meaning it is commonplace, familiar, and part of our societal norms. Some of us may have had this quote used on us, some of us may have used it one others and all of us have heard these safety instructions before a plane takes off. In the context of an aircraft, I 100% understand and appreciate this instruction because unless you have your oxygen mask on, there is no way you are going to be conscious enough to help anyone else around you. I fully support that fact and reality. However, how well does this quote apply to the full-time family caregiver? It doesn't, the quote in my book gets a zero! This is the problem when quotes in one context get adopted and translated into other contexts. 

When on an airplane, you can easily grab a mask and put it on. Putting on a figurative oxygen mask for a family caregiver, isn't a quick fix. As most of us are chronically exhausted, chronically stressed out, and chronically balancing the impossible. In order to get that so called breath of life sustaining oxygen, it wouldn't require a two second gesture. It would most likely take us weeks, months, or years to recover from the daily stresses we are managing. Which is why you will NEVER hear ONE caregiver say to ANOTHER caregiver.... put your oxygen mask on first. Mainly because it is a pointless statement that negates our whole situation and the context we live in. 

It was another ridiculous day here on the Farm. This morning I received a call from my dad's doctor at the hospital. He wanted to update me on how my dad is doing. Bottom line... he still has diarrhea and he still has the hiccups. However, from a medical standpoint there is NO LONGER a need for him to be in the hospital. Translation... MEDICARE has decided they will not cover the cost of anymore hospitalization, which of course puts the doctors in a difficult position. Any case, I expressed to the doctor my concerns with driving as my neighborhood hadn't been totally cleared out. He then told me if I did not feel comfortable driving to pick my dad up that the hospital will they could have a transport vehicle take him back home. He then said that case management would be in touch with me a little later today. 

But here's the thing! Did you know that these transporters are NOT covered by insurance? (Thank you Cheryl for this 411!!!). Which would have meant that I was going to be faced with a hefty transportation bill as the hospital is over 20 miles away from where I live. As soon as I learned this fact, I called case management myself and chatted with a social worker. I literally said.... when was someone going to tell me that I would have to pay out of pocket for this service? I bet that many families are left paying these fees because all this important information is not conveyed to them. This to me is criminal. So I told the case manager that I refused to pay for transport and I also did not feel comfortable driving to the hospital. She told me she would convey this to the doctor and get back to me. It is almost 8pm, and of course no one called me. Therefore I will be prepared to pick my dad up tomorrow and deal with the consequences of him being apart from me since Saturday night. I assure you it won't be pretty, as he will be disoriented and physically depleted are being quarantined in bed. So anyone who thinks a hospitalization is a break, hasn't experienced a hospitalization.

Of course my mom is deeply upset as she has a whole history with my dad's bouts with intractable hiccups. I can't tell you how upsetting it is to hear someone hiccup non-stop for weeks on end. I can say this freely because both my mom and I can freely say we have this experience. In the past, when my dad was younger, he would get hospitalized and completely knocked out with Thorazine (an anti-psychotic medication) for a week. That was the only way to get rid of the hiccups. Now that my dad is 90, this isn't an option. The doctor at the hospital said I should consult a GI doctor about the hiccups. Newsflash.... it can take up to six months to get in to see a GI doctor. There is no way my dad can continue hiccupping for six months. It is debilitating on him and it will set my mom and I over the deep end.... literally!

Today I decided to bake macaroons for my "former" father-in-law, as his 92th birthday is approaching in a few days. This is my new tradition with them.... on every occasion, I bake them something and mail it. My local UPS store gets a kick out of me, as they always ask me when will be bringing them a box of cookies!

I made two different kinds..... macaroons with semi-sweet chocolate and macaroons with cranberries and white chocolate. 

Sunday, January 25, 2026

Sunday, January 25, 2026

Tonight's picture was taken in January of 2009. Why am I posting this photo? Because Mattie took it! All these women were packed in his postage stamp of a room and they were working hard to get Mattie up, moving, complying with physical therapy and engaged with the world around him. I honestly do not know where we would have been without Mattie's child life specialist (Linda), his art therapists (Jenny and Jessie), and his physical therapist (Anna). Each one of these women was amazing, but together there was nothing they couldn't accomplish from a psychosocial perspective. 

Quote of the day: A good doctor treats the disease; a great doctor treats the patient who has the disease. ~ William Osler

I wrote the blog on Saturday night before chaos ensued. Knowing that we had a winter storm warning that night scared me to no end. I contacted my dad's doctor numerous times that day and in the evening, after my dad vomited up more food, the doctor suggested I buy Boost or Ensure and other soft foods for him to eat to manage through the storm. So literally at 7pm, I got in the car and headed back out to the grocery store to purchase Ensure, pudding, and jello. I was expecting to find NO food in the stores, but the store was still stocked with plenty of things and the store employee told me that management and store employees were sleeping nearby, because the store is open even in a blizzard. I am not sure why I found comfort in hearing that, but I did! I think I have been feeling very vulnerable this last week with my dad very ill, me being so sick, and the notion of a pending storm was the icing on the cake. 

When I got home from the grocery store, my dad's doctor was still writing to me and between what he said and my own observations on my dad I had to make the tough decision.... do I keep him home and manage his declining symptoms in a snow storm, or do I try to get him to the emergency room before the storm hits in hopes that they will admit him. It was a very very difficult situation because driving during a snow emergency not only puts me in danger but it puts my parents in danger. Keep in mind that I learned to drive in Southern California... the land of NO SNOW! So I truly do not have snow driving skills! So picture it being 8:30pm, my mom was already in her pajamas and I had left the dinner dishes on the table (since I ran out to the grocery store for my dad). I then proceed to tell my parents that we had to go to the emergency room and we had to mobilize. My dad had no idea what was going on and my mom insisted on coming with me. So I had to wait for her to pull it together. While she was getting herself together I cleaned up dinner (dinner that my dad vomited up), packed snacks and blankets for the hospital, put out extra food for Indie, and within 30 minutes we were out the door. While driving I realized I forgot my phone charger! But I wasn't turning back!

Seriously I felt practically unstable driving in the car and I was literally screaming, and I mean screaming................ I miss my husband (okay legally, I know he isn't my husband for the record)! I HATE negotiating the world alone, it is daunting, stressful, and last night I thought I was going to need an ER bed alongside my dad. 

Thankfully when we got to the ER, it wasn't crowded and they took us back immediately. As soon as we met my dad's nurse (who was outstanding, as he has worked in his profession for 17 years) I explained to him that I wanted to talk to the ER physician to get this process moving because I have a two hour window to get out of the hospital and home safely before the snow traps us at the hospital. Now mind you I realize that snow isn't a medical crisis, but honestly everyone I interacted with was kind, understanding, and when I tell you they streamlined the assessment process, I am not kidding. 

I do not always have the best of luck with ER doctors, but Dr. Russell, was outstanding. Listened, assessed, put things together quickly, and got to understand the full picture. CAN WE CLONE HIM? Within thirty minutes he had my dad get a chest and abdominal x-ray, which then led to an abdominal CT. He ordered all sorts of blood cultures and wanted a fecal sample. Note.... when I brought my dad to the ER on Wednesday of this week, they wanted a fecal sample too, but none presented itself (lucky them!), and therefore they had no data to hold my dad. 

But since my dad has been vomiting and having massive amounts of diarrhea since Wednesday, as well as hiccupping non-stop since Wednesday, this merited a hospital admission. Seriously when the doctor told me he was going to admit my dad, I thought I was going to cry, because he could see how sick he was and if I was overwhelmed caring for him, it meant.... we indeed have a problem! I should mention that early on in my interactions with Dr. Russell, I thanked him for working through a blizzard and for choosing to work in an ER, which is not an easy place to do medical care. I told him that he and doctors like him are the true heroes in our society. Honestly he stopped, absorbed what I was saying, and thanked me for my kind reflections. 

At 11:30pm, I whisked my mom back into the car. It was snowing, but it wasn't bad. The blessing was I was driving on Route 66 with the snow plows. To me the snow plows are my friends! We made it home after midnight and I was so wired, I continued doing chores and helped my mom get settled. It was at that point, I realized I needed to eat something. Keep in mind since Thursday, I haven't eaten much. I did not want just anything.... my stomach said I needed potato chips. Something that I rarely ever eat. I keep chips like this in the house to give out to people who help me with house projects. But last night, I cracked open that supply and ate potato chips and drank gingerale. I eventually made it upstairs and got into bed, with Indie my side kick, and it was the first peaceful night of sleep I have had in days. The stress of my dad's illness was removed from my shoulders and he was where he needed to be. 

When I woke up this morning, I checked my dad's patient portal and reviewed all his medical test results. Sure enough.... my dad has Norovirus. It now explains his symptoms and my own. He and I presented very differently, and I am just thankful that my mom is fine. But with the way I clean around the house, I should be able to do a commercial for the benefits of bleach and white vinegar. 

Meanwhile, we were inundated with snow today. I am sure snow serves some sort of purpose by from my standpoint... snow is for children. After that phase, it is a great hassle! Bordering on dangerous. I am very grateful that I have neighbors who look out for me, as they worked on clearing off my driveway and front walkway. Hopefully making it easier for me to dig out tomorrow.