Saturday, June 7, 2025

Saturday, June 7, 2025

Tonight's picture was taken in June of 2008. Mattie had just completed kindergarten and that day he got together with his "girlfriend" Charlotte. We went for an adventure in Georgetown riding a boat through the canals. Mattie and Charlotte became instant friends in kindergarten and they brought out the best in each other. Their joke was they were going to go to college together and become roommates. It is hard to imagine that a month after this photo was taken, Mattie was diagnosed with cancer. 

Quote of the day: For there to be betrayal, there would have to have been trust first. ~ Suzanne Collins

Last night, as it began to rain, I noticed that the outdoor lights in our front yard went out again! If you recall, I dealt with this problem a month ago. Which caused me to get the electrician over and then our landscaper. Last night, I was determined to figure this out myself! As I am tired of paying unnecessary bills! I have NOW located the problem, as my husband has two extension chords running to our deck. One extension chord provides electricity to the lights by our driveway and the other GOES to no where! LITERALLY! I have deduced that this chord which is going no where is the cause of the problem. This chord runs under our deck and clearly when it rains, it trips the GFI in the outdoor socket. Blowing all of our lights. So now I have this chord unplugged and I will eventually trace it to its origin and remove it. But that will mean I have to get under the deck. I am in no mood to handle that right now. However, I did get the front lights working again. In addition, I had to flush the back up sump pump in the basement yesterday. The manufacturer requires me to do this every three months in order to have this device under warranty. I learned this the hard way, as the previous pump burned out soon after my husband left. When I tell you that I have been getting a crash course in electrical, plumbing, heating, and other home improvement issues, I am NOT kidding. I am constantly on call for just about everything in the house!

This sump pump is crucial, because when we first moved into the house in 2021, we have a flood in the basement during a horrible rain storm. Literally there was like an inch of water in the basement. It was a nightmare of a sight at 3am. Thankfully we had nothing in the basement at that time, and we worked for hours during the storm to remove the water from the basement. I will never forget that night, a night I never wish to have again! So whatever I have to do to maintain the pumps, I DO! 

In between caring for my parents and taking them out to lunch, I continued working on the Foundation's video! I HATE technology! This video is taking every ounce of energy I have and my patience is dwindling. Tonight, after working on it for several more hours, I shut down the application, and decided I need a mental and emotional break from this work. Hopefully tomorrow will be a better day. But I would say, I have always been a perfectionist, but now these tendencies have magnified. I believe this is the case because this is the only thing I can now control. Whatever I do or put together, has to be a solid product. Since I am the sole keeper of Mattie's legacy, I feel that whatever is Foundation related has to be of quality otherwise, I won't do it! This is all well and done, but I notice this is coming at a high price to my emotional well being. 

Friday, June 6, 2025

Friday, June 6, 2025

Tonight's picture was taken in June of 2003. Mattie was a year old. That day, my parents (who were visiting from Los Angeles) and I took Mattie to the Reston Zoo. It was a family favorite, because this Zoo is small, perfect for younger children, never crowded and children can experience hands on activities with the animals. I look at this photo now, and see the dramatic transformation in my dad. This was my dad before Alzheimer's took over. This photo shows the cute bond between Mattie and his pop pop!

Quote of the day: Betrayal annihilates trust. The more trust there is to begin with, and the more deception is involved, the more damage is done. ~ Sandra Lee Dennis

My college roommate and friend, Leslie, sent me the article entitled, A caregiver dad, Bradley Cooper and how a national crisis inspired an unexpected film. She sent it to me because she thought it would resonate with me. WOW, does it! The person highlighted in the article, Bradley, has shared his caregiving stories on TikTok. I admit I haven't watched them, as I am not adding one more app to my life. However, what I do admire, is his courage to share his story, and more importantly to highlight the many travesties family members endure each day, while caring for a loved one. Bradley talks about the poverty he is facing because of huge caregiving expenses. Yet there really are NO benefits that he is entitled to, to assist him with his vital role. Ironically most long term care insurances and other benefits are for paid services, NOT to help reimburse family members. Keep in mind that family members are doing the MAJORITY of the caregiving work in the USA. 

As Bradley points out, most of us do our roles, without much regard for being classified as caregivers. I remember when I was doing my dissertation research and had the opportunity to work with 100 caregivers..... interview after interview, the majority of caregivers did NOT identify as such! Many caregivers do not identify with the term because to them caring for a loved one is just what is  expected. They wouldn't have it any other way.

I absolutely LOVE Rosalynn Carter's quote. In fact, I used this quote to begin chapter one of my dissertation. She stated, there are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers! Why this quote is so captivating is because she allows us to see that caregiving isn't just my problem or the next person's problem..... it is something that affects ALL human beings. 

Ironically, unless you read this blog, most people do not know the extent of care I provide for both of my parents. People in our community see my parents out and about and therefore deem that they are fully independent. In the sense that they can meet all their own basic needs. But this couldn't be furthest from the truth. When I mentioned to someone that I couldn't get the phone because I was showering my dad.... she just looked at me. She did not realize that my caregiving involves heavy duty tasks each day. I manage all my dad's activities of daily living (dressing, bathing, and toileting) and I manage ALL instrumental activities of daily living (cooking, cleaning, transportation, managing finances, and all communications, and scheduling) for both of my parents. 

If you think that Medicare will cover ANYTHING of what I do, or what other family caregivers perform, you would be WRONG. Medicare only covers professional services (nursing, PT, OT, and speech therapy), and even that would be on a short term basis, and as for Medicaid, that would only kick in to cover institutionalization after you have depleted all your loved one's assets. So truly you can't expect help from these resources. Likewise, don't get me started on long term care insurance either! It is costly, but also doesn't cover family members who are providing the care. Insurance will cover certified caregivers or facilities providing care, but keep in mind at best, long term care insurance will only cover 3-4 hours of care a day! Mind you there are 20 more hours in a day that a family will then be financially responsible for! 

It gets better, I am THRILLED Bradley mentioned it..... he says he hasn't hired certified caregivers to help with his wife, because he can't afford it! This isn't a commentary on Bradley, but a commentary on how DOWNRIGHT expensive outside care is for our family members. What am I talking about? Let me paint the reality, why like Bradley, I am ALSO not relying on outside help!

The going rate for a certified caregiver (someone who performs activities of daily living and instrumental activities of daily living) is $30 an hour. I provide 24/7 care! So let's do the math.... $30 (an hour) x 24 (hours in a day)=$720 a day. Then let's calculate the weekly rate: $720 (a day) x 7 (days a week)=$5,040. There are 52 weeks in a year: $5,040 (a week) x 52 (weeks in a year)=$262,080. This is in theory how much I would be paying out for the care of one parent. But I need care for two. If I hired a caregiver through an agency, they would insist that each parent has their own caregiver. So for all intensive purposes you can take the yearly rate of $262,080 (a year) x 2 (parents)= $524,160! Do you see how this adds up quickly and that is only for ONE YEAR. I have been performing my 24/7 role for four years. So for fun and giggles, this would look like........... $524,160 (a year for two parents) x 4 (years) =$2,096,640. I am telling you this to give you a bird's eye view..... this is why the majority of family caregivers are performing this critical role! As I always used to say, caregivers are the unsung heroes of our society! 

Family caregivers do NOT perform our roles and endure certain sacrifices because we want MONEY. We do it out of LOVE, RESPECT, and COMMITMENT to those we care for and as a result you could NEVER put a price tag to what we do each day. 

If you are interested in seeing the caregiving documentary on PBS, go to: 

https://www.pbs.org/video/caregiving/

Thursday, June 5, 2025

Thursday, June 5, 2025

Tonight's picture was taken in June of 2002. Mattie was two months old! Though they say children at this age CAN'T smile, because they do not have the facial muscles, and therefore deem these grimaces as "gas," I never bought it! To me, Mattie was full of emotional expression right from day one! So I say.... look at that smile!!!!

Quote of the day: The saddest thing about betrayal is that it never comes from your enemies; it comes from those you trust the most. ~ Anonymous

It has been another day of dealing with my health insurer. If you have been following my saga, then you know I have been trying to get access to an MRI and the bone density drug, Prolia. Today's fiasco was regarding the MRI. I originally was going to take this scan tomorrow, until I learned I would have to pay over $2,000 out of pocket, as I clearly haven't met my deductible this year. While talking to the radiology center, they informed me of another facility of theirs that offers the scan at a reduced price. So naturally I canceled Friday's appointment and rescheduled it at the other facility. Apparently my insurance company did not like that change. So back on the phone I went today for another hour, until the insurer finally put an authorization in the system for this other facility. Mind you the person I was talking to had NO IDEA how to do this, even though I wasn't changing the radiology company, just the office location of this company. Needless to say, it is now resolved, but I am SO WORN out from fighting for my family's health care needs. Anyone who thinks healthcare is a human right, FORGET IT! Talk to a health insurer and you will see who really has ULTIMATE control!

I took my parents out to lunch today, and while out, my mom got an alert on her phone about my high school in California. There was a deadly car accident at the school, which killed a 15 year old student. I haven't been back to this school since I graduated. There are many reasons for this, one of which was my transition from New York to California at the age of 15 was NOT an easy one. When I attended Campbell Hall, it was a much smaller school. Now when I went to the school's website and campus map, I couldn't get over how it expanded. It is like ten times bigger from the small, sleepy school that I went to! 

If you would like to read the story, it is entitled, Teenage boy killed, 5 others hurt in parking lot crash at L.A. school. There is also a short news video about the accident. In a nutshell, it was the end of the day and kids were being dismissed from school. Cars were lining up to pick up students. School pick up lines can typically be slow. But somehow there was a young girl driving (picking up her sister), and was moving up the line. It is alleged that she hit the accelerator, and at the same time a 15 year old walked right in front of her car. He was crossing between cars to reach his dad's car. This 15 year old was crushed and the scene is said to have been gruesome. The accident was witnessed by other students, faculty, and the father saw his son crushed before his eyes. 

The trauma and loss that being experienced by both the driver's family and the 15 year old who lost his life, are simply unimaginable. Truly nothing in life is guaranteed, even coming home from school safely. I think this horrific story is a reminder to appreciate any day that we can open our eyes in the morning and shut them at night. I can't imagine how this young driver, who killed a fellow student is coping. Lives have been changed forever and my heart goes out to my fellow Vikings. 

Wednesday, June 4, 2025

Wednesday, June 4, 2025

Tonight's picture was taken in June of 2004. Mattie was two years old. That week we took Mattie to Boston to visit my in-laws. This was a summer tradition, of visiting both sets of parents. That day, we took Mattie to their local pond and as you can see he was LOVING the geese and ducks. Naturally we never came empty handed, as we had a bag of bread with us, which made us very popular. 

Quote of the day: Forgive yourself for the blindness that put you in the path of those who betrayed you. Sometimes a good heart doesn’t see the bad. ~ Unknown

This morning after I dropped my dad off at his memory care center, I ran home, because my mom was getting evaluated by one of her physical therapist's. I have gotten to know all my parent's therapists quite well. Today we chatted and the therapist was telling me about his wife, who died years ago. This therapist has been practicing for 50 years, and he says he never wants to retire. He works with five patients a week, and loves what he does. He then highlighted what life was like when he was raising his two children. He and his wife had to decide.... does she work or does she stay home full-time to raise the children? She chose to stay home and be present for both of her children, and he then explained he worked three jobs to make that happen. He worked even on the weekends! He said that he is not a rich man, but then I responded.... he is rich in family. He has a tight knit family and his children appreciate all the sacrifices he made for them over the years. This therapist misses his wife and always talks about her in the highest regard, as he understood and appreciated the tough job she did each day. 

As a woman who decided to raise Mattie full-time and work part-time, teaching in the evenings, it was very refreshing hearing a man express the sacrifices and the challenges of being a full-time mom. I remember when I was going through the divorce process, my lawyer had me list all the things I did each day to keep our household and family running. Her joke was what I did was priceless, and if we truly added everything up, I would be pulling in a six figure salary. She always got me to chuckle, but she was being truthful. 

I continue to work on Mattie Miracle's spring video. Gone are the days, where I could work for hours and concentrate. Now I work in piecemeal. Which makes creating a video challenging at best. But I keep chipping away at it. This afternoon, I took my mom out for tea. On our way into Starbuck's, a man was sitting outside with his German Shepherd. He is one of the regulars we see each week. Today, I happened to stop and told him we have been admiring his dog for the last two weeks. He was deeply touched. He introduced us to his charming fellow, who is 7 years old. He said that this was a guard dog in Iraq, and he worked closely with him over all these years. He said he is now retired and is getting pampered and spoiled. When I looked into this dog's eyes, I swear it was like he was reading my mind and if he could talk, we would have had an very enlightening conversation.

When I got home, I reached into the mailbox, and pulled out a tiny box. I wasn't expecting anything, so I had no idea what could possibly be in the box. When I opened it, I found this bracelet, with NO note. Therefore, I did not know who it was from! The bracelet reads.... "Don't Let The Hard Days Win." 

I can't tell you how much this unexpected gift means to me. It now sits with me right by my desk and it will be a reminder that I AM NOT ALONE and that others stand beside me. 

Tuesday, June 3, 2025

Tuesday, June 3, 2025 -- Mattie died 797 weeks ago today.

Tonight's picture was taken in June of 2003. Mattie was a year old. That day we took him to Great Falls Park. Mattie was fully ON and engaged with all the beauty around us. Everything from the water to the birds. I tried to pose for a photo with Mattie, but as you can see, he wanted me to put him down, because he was on the move. Something caught his attention and what I love about this photo was it visually captured Mattie's hand and fingers moving.... to me Mattie's fingers were like radar scopes, taking in information and making sense out of it!

Quote of the day: One of the hardest lessons in life is letting go. Whether it’s guilt, anger, love, loss or betrayal. Change is never easy. We fight to hold on and we fight to let go. If you’ve been hurt until it breaks your soul into pieces, your perspective in life will definitely change, and no one and nothing in this world could ever hurt you again. ~ Mareez Reyes

For the past two days, I have been working with a wonderful contractor, to clean up the decaying wood over my portico. I have put this issue off for years, and now that the wood was falling off of the portico, it needed to be addressed. I truly do not like making all these decisions on my own! That was the beauty of being married, to have one's partner to navigate through life. There is something very special knowing that you share life's triumphs and heartache with your spouse. It makes all things more manageable. It is funny, I have a neighbor who has told me that her husband refuses to let her interface with any workmen or contractors on her own. Mainly because he doesn't like leaving her to manage these stressors! Not only do I manage this stressor alone, but my list of daily tasks is not for the meek. 

This wooden post and spindle structure was uneven and rotting. You can see it! This was the before photo!

This is what the final product looks like. I have streamlined the look and now NOTHING blocks the beautiful Palladian window. The roof of the portico has had its wood and flashing replaced and now it is level again! There is something to be said about LESS is MORE! 

I always disliked seeing these spindles through the window. It had a jail like feeling! 

Now there is nothing obstructing the view and the contractor commending me for making this decision! He says.... this was how it should have always been! I agree!

I spent a portion of today starting to create a video for Mattie Miracle. I do one for the Foundation every spring. Last year I had to learn a whole new video software system and I freaked out! This year, it is the same software, however, features in this app have changed, so I am learning as I go! Though the video will be only 3-4 minutes, it takes me hours and days to generate a video. It requires time to make sure the video flows well to the music and that the clips convey an accurate story about Mattie Miracle. As I always say..... getting started is the hardest part. Remember I am NOT technologically savvy, yet since 2023, I have had to rise to the occasion, because failing Mattie Miracle is NOT an option!

This afternoon, I took my parents out for frozen yogurt. Whatever store or restaurant I frequent with my parents..... I know everyone who works there! I know about their lives and their families. What it comes down to is the human connection is and has always been tantamount to me! While having yogurt, the Angela Lansbury song, Tale as Old as Time, was playing! I posted the clip below for you to enjoy! This song transported me back to 1991...... seeing this movie with my college sweetheart, who became my husband. There was something magical about this movie and my husband used to say I was just like Belle, the beauty in the movie! Naturally years later, we introduced this charming film to Mattie! It is amazing how a song can trigger a whole flood of memories! Memories which I now carry alone.  

Monday, June 2, 2025

Monday, June 2, 2025

Tonight's picture was taken in June of 2004. Mattie was two years old. That day we drove to Connecticut to visit my mother in law's mom. Gladys was a real spit fire and she and I got along right from the beginning. Like me, she called it as she saw it, and enjoyed conversation and food! Gladys was in the hospital and I packed all sorts of goodies for our visit. I even brought her one of Mattie's birthday plates! Gladys loved children and I am so glad that she got to meet Mattie.

Quote of the day: There is always a lesson of a lifetime to learn in every betrayal. ~ Edmond Mbiaka

When we moved into our house in 2021, the portico over our front door already had issues. However, given all the other things that needed to be fixed, we tabled this problem. However, now that the wood is actually falling off the house, I had no other choice but to address this structure that is crumbling apart. I consulted my neighbors who introduced me to their contractor. I actually got the estimate months ago, but since I am so frazzled with bills and issues, I kept putting this problem off. This week, I decided I better address it before it got worse. So this morning started with the contractor coming over while I was showering my dad. I literally stopped the shower, handed my dad a towel (while he was sitting in his shower chair) and I told my mom to watch my dad, as I would be back in less than five minutes. Sure enough in the few minutes that I was gone to talk with the contractor, my mom was not watching my dad, and my dad somehow got himself up and out the shower and was walking around without clothes on. You can imagine my reaction to this! 

If you come down our staircase and look out of this big Palladian window, what do you see? Well if you are like me, you see those horrible spindles on top of my portico. What you can't see is that these spindles are rotting and the whole thing is tipping and slanted. It is a sight that has always bothered me for years. Today all those spindles were removed and to have an unobstructed view of the sky is wonderful. Thankfully I am addressing this issue now, because some of the ceiling portion of the portico was also rotting and the contractor said I made the right decision to address this before the whole thing would have needed to be reconstructed.  

I spent hours on the phone today dealing with both Prolia issues and issues associated with the MRI of the breast. Here's the kicker, my health insurer approved the MRI, but I would still need to pay $2,100 out of pocket. Truly I can't make this stuff up! I naturally lost it on the phone! Why have insurance, if insurance doesn't cover any portion of this scan!? Any case, I learned today that this radiology center has both outpatient centers and office centers. If I get the scan done at the office center, it will be half the price! I wanted to know what the catch was.... meaning is the technology different, is the radiology team who reads the scans different, what? She assures me that the quality is the same, so once again, I canceled my MRI which was schedule for this Friday, and rescheduled it to the end of the month at the office center. I truly hope this wasn't a mistake, but given that I regulate every expense in my house, I can't justify the outpatient center cost. 

Back to Prolia, GOD GIVE ME STRENGTH. I had it out with my doctor's office because the nurse from hell, sent my script to a different infusion center. When I asked her why she did this? She had no answer, but was playing confused. She basically said to me.... what's your problem, at least there is an infusion center that your insurer approved! She totally missed the point, as for me going to an infusion center is hard enough, but I had gotten used to the other infusion center and its staff. This kind of change makes me very anxious. But she is too dense to listen or to understand the psychosocial consequence of certain decisions. This nurse and I are like oil and water. So she was no help! I finally reached out to the new infusion center, and they turn out to be very lovely and extremely helpful. What a concept, and now I have an appointment for the end of June. But I have had it on every level. I am constantly fighting one system or another, and I fight alone! I HATE IT! I DID NOT SIGN UP FOR THIS, AND I KEEP ASKING MYSELF, WILL I WAKE UP TOMORROW AND THINGS WILL BE BACK TO NORMAL?!!!!

I end tonight's blog with this amusing story I read today, entitled, I Trade Marriage Counseling For Camel Rides: Why Adventure Travel Heals Divorce Trauma Better Than Therapy. The title alone had me chuckling, so I just had to read it! I for one, agree with this woman, that some issues transcend therapy. No amount of sitting or talking is going to improve your situation! The therapist can't change your reality and I know sitting in pain and trauma is counterproductive for me. So what I learned early on with Mattie's diagnosis and then death was the art of diversions and distractions! THESE are the KEYS to surviving the impossible. Why do I jump from one task to another? Why do I never stop moving? The simple answer is this is MY THERAPY. I can't possibly sit in my reality 24/7! It would consume me and I would be unable to see a way forward to the next day.

Now the woman in the article talks about the art of traveling and the DISTRACTION this causes, because when you are busy trying to translate what you are hearing, and trying to understand the culture and currency in front of you, you are too busy to focus on your divorce! Too busy to see that the one person you trusted and loved most in the world, LEFT, and too busy to absorb that the future you once expected and hoped for is GONE. So all I can say is.........send in the camels, I am ready!  

Sunday, June 1, 2025

Sunday, June 1, 2025

Tonight's picture was taken in June of 2004. Mattie was two years old and that week we took him to Boston to visit my in-laws. This tree swing has entertained multiple generations! Mattie loved it, as did I. In fact, when I first visited this house when I was in college, I went right for the swing. I have always loved tree swings as to me there is something magical about flying through the air and having greenery all around you. Mattie enabled me to have a second childhood, and I would say that the second time around was better as I got to see the world through his eyes.  

Quote of the day: Betrayal annihilates trust. The more trust there is to begin with, and the more deception is involved, the more damage is done. ~ Sandra Lee Dennis

I received an email today from my health insurer. I can't believe it, but all my advocacy work has paid off! I got an approval letter for Prolia. The approval is only for a year, so apparently I have to jump through this hoop again next year! Truly, I feel like this was a victory, because my doctor's office was frustrated and wanted me to simply accept what was easily approved, and that would be a daily injectable. NO THANK YOU!

There are times in my life, when the only things I can watch are Hallmark Movies. I can't handle hearing about pain, hearing about crises, or anything else that is remotely depressing. My mind and heart just can't take it. When Mattie died, that was my first experience with turning to Hallmark. I literally had the TV on during every hour of the day! I am not sure whether the silence was too painful to hear or whether the silence would have forced me to face my reality. Either case, THERE was NO silence, because Hallmark kept me focused on various story lines. What I always loved about Hallmark, besides wholesome story lines, is that there are NO UNHAPPY endings. NONE! Life is filled with many unhappy endings, I don't need to see that on a screen in front of me. All I know is Hallmark was my therapy then, and it is my therapy now. 

Every night, after I get my parents into bed, Indie and I head to my bedroom, and on goes the TV. I go straight to Hallmark! My DVR is filled with countless Hallmark movies and as strange as this sounds, it fills me with hope that someone is writing such scripts. Scripts where men actually mean what they say and are able to express themselves honestly and openly, and are willing to make personal sacrifices for true love. What a concept! Prior to my husband walking out on me, I embodied this same philosophy, that marriage is forever and you grow together, because "I do" is "always and forever." It is a hard reality to know that after 35 years, I was the only one in this equation who lived by that philosophy. It is very easy to become bitter by this, it is very easy to be angry, and disgusted with any and all relationships. Which is why I get a daily nightly dosage of happiness, of love, of commitments, and kindness. 

Last night I was watching a movie and the main character was talking about how being openly vulnerable to others shows our humanity. By showing our humanity, it in essence bonds people to us. I let that swirl around in my mind, and I would have to say that my nightly blogs are just that..... they give you a snapshot into my very vulnerable self. That could cause you to run in the other direction, but for the most part, the opposite happens. I have had loyal readers for years, and perhaps one of the reasons is exactly what was revealed in the Hallmark movie.... being vulnerable and sharing that vulnerability enables others to see that you TOO are not alone. We are human, and being human is filled with many moments, months, and years that are sometimes hard to understand and cope with, and maybe in a some small way, by hearing my stories, enables you to face and cope with your own stories. If this is true, then I am humbled that something I am writing is touching your heart and maybe helping you get through to the next day. Since my husband left me, I am back to living one hour and day at a time, and from my experience with losing Mattie, that is sometimes as good as it gets.