Saturday, May 7, 2022

Saturday, May 7, 2022

Tonight's picture was taken in April of 2004. That day we took Mattie to the National Zoo. Two things pop into my head when seeing this photo. First, Mattie never went anywhere without a sippy cup full of whole milk. So much for drinking milk and having strong bones. What a myth. The second thing was Mattie's favorite mode of transportation was on Peter's back. I can't tell you how many times Peter carried Mattie around this way. 

Quote of the day: Mother is the name for God in the lips and hearts of little children. ~ William Thackeray 

Peter sent me these beautiful flowers for Mother's day. I put the vase inside this big piece of pottery, which sits on our island. We received this piece of pottery as a wedding gift. The piece was personalized for us with our names and our wedding date. So we have had this bowl for over two decades. Who would guess that a bowl would out last our child? 

As mother's day approaches, it is a day that probably will never sit well with me. The past couple of days, people who I meet in passing (who don't know me) wish me a Happy Mother's Day. In the past I would have lost it and most likely would have gotten angry. Now I just absorb the comment, and say internally..... if you only knew. 

In the midst of Foundation work, and juggling my dad today, I worked with my mom to unpack many of her Lladró collection. Ironically, she collected several of these along our travels together. So Peter and I can remember practically recall where each piece came from. At my parent's home in California, these pieces were all over the place. Here, I have consolidated them to my curio cabinets. I had these shelves in our townhouse in Washington, DC. On them use to be my glass hat and shoe collections. 

Given this wall is so large, and I have a painting on the side wall, I did not want another art piece as a distraction. So I felt this would work. The piece of furniture underneath the shelving was given to me as a gift MANY MANY years ago by a friend in Boston. It was his grandmother's and he no longer wanted it. I am so glad I had the where with all in my 20's to grab this piece! They don't make furniture like this anymore. 

Friday, May 6, 2022

Friday, May 6, 2022

Tonight's picture was taken in April of 2003. Mattie was a year old and full of energy. Though Mattie wasn't walking independently, he was definitely moving around while holding onto things. The funny thing about Mattie was he did not want to walk, he wanted to move right into running. The beauty of Mattie, which I knew as his mom, was he was going to do things on his own time line, not one established by a pediatrician. 

Quote of the day: Today me will live in the moment, unless it's unpleasant. In which case me will eat a cookie. ~ the Cookie Monster

This morning, I accomplished my usual routine. After dropping my dad off at his memory care center, I drove to Washington, DC to get my hair conditioned and cut. I haven't done this in about a year. My hair looked terrible. Typically when my dad is at the center, I am either doing work or doing something with my mom. Today, I left all of this behind for about three hours, and tried to just let all of my daily stresses go. 

Being independent without caregiving tasks in tow, I was able to get my hair done and then drive to Mattie's hospital to make a donation of toiletries. While outside the hospital, I ran into Mattie's social worker and one of his nursing techs. Both lovely women. So though this hospital has changed since Mattie died, there are a core group of people who remain who I will always be grateful to, who made a huge difference in our lives, and are Mattie's legacy keepers. For me, whenever I go back on that campus, I am reminded of our cancer journey with Mattie, and how it was our home away from home. That feeling most likely will always remain for me. 

At the same time, I received a beautiful message from a music volunteer at Mattie's hospital. Anthony (as you see in this photo) plays the violin beautifully and for decades he shares his skills at hospitals and other institutions within our community. In fact, Anthony also met my friend Margy, when she was treated for ovarian cancer. But on April 15, Anthony came to my dad's memory care center and that is when my dad and Anthony united and chatted. No surprise to me, Anthony remembered Mattie. Which is why he wrote to me today. His email message was beyond touching and I am so impressed with Anthony, who has devoted a good part of his life to freely sharing music to patients and families in need of hope, joy, and peace. What are the chances that one musician could know my son, my friend, and my dad?  

When I arrived back home today, I was surprised by a box of goodies from Spoonful of Comfort. The goodies came from my long time friend in Boston, Jen. Jen and I went to graduate school together. There is something to be said for gifts that you aren't expecting. They have a way of brightening dark days, especially when I feel very isolated from non-stop caregiving. Frankly I don't know how I will have any friends left given how I lead my current life. 

If you aren't familiar with Spoonful of Comfort, the founder who created it was inspired by her own mother's cancer diagnosis and the fact that her mom lived in Canada and she lived in the states. She wanted to send her mom comfort foods, like soup, but at the time, no company like this existed. When her mom died, she decided to meet this need. However, what catches your attention immediately are the boxes. Each box is colorful and has a meaningful quote on it. As my loyal readers know..... I love quotes! 

Tonight's quote on the blog came right off of this box! I absolutely agree with Cookie Monster. Life's unpleasantness is more bearable with a cookie!

A Mother Theresa quote!

I took my parents out to lunch today. Since my parent's arrived in Virginia, we have frequented Clyde's of Reston. We have gotten to know many of the wait staff and the assistant general manager. Honestly for me it is like how the cast of characters on Cheers must have felt. YES I KNOW THIS WAS A TV SHOW, and not reality. But you get my gist. You feel like family when you walk in. 

Of course, like everything else in my life, this restaurant is closing its doors on May 21, after decades of service to the community. It figures, the one place my parent's love, that is close to our home, and where everyone knows our name. Life is full of adjustments, and I just don't care for it one bit. 

In the midst of everything else I have going on, we have the Foundation fundraiser next week and we are in the throes of what feels like a HOA battle regarding the house next door to us, which is proposing a full blown demolition. Needless to say, I am not an HOA fan and I have no hope that they will rise to the occasion and support those of us who are living in the community and thereby abide by their own community by-laws. 

Thursday, May 5, 2022

Thursday, May 5, 2022

Tonight's picture was taken in April of 2004. Mattie had his second birthday party days before this photo was taken. I decided to leave up the activity sheets I taped up on the wall for party. I did this because Mattie loved coloring them and checking them out. This photo was literally taken as Peter came home from work. Mattie greeted him and wanted to show Peter some things on the wall. Regardless of the fact that Peter had a long day at the office, Mattie was always a number one priority and Peter eagerly engaged with Mattie whenever they were together. 

Quote of the day: Patience is a conquering virtue. ~ Geoffrey Chaucer

It was another crazy morning of running around. I got my dad up, showered, dressed, and downstairs for breakfast. We than all got in the car, dropped my dad off at the memory care center and then drove to the National Institutes of Health in Bethesda, MD. Our trunk was loaded with toiletry items for our Snack and Item cart, and we were invited to take part in a cart reveal party. 

Though I wanted to bring my dad with us, I knew he would never make it. As getting onto the NIH campus is like entering Fort Knox. In addition, a lot of walking is involved. Which he hates. Not to mention that I never know when he will need to run to the bathroom. So I felt the best decision was to take him to the memory care center for today. It turns out I was right! As Peter says, it takes longer to get on campus and go through security than it actually takes to drive to NIH from our home. That may sound funny, but it is the truth. It takes a good hour to process through, as you have to get out of your car, your car has to be inspected, and you have to walk through metal detectors and show ID. 

This was the invitation that went out to the NIH community about our Cart, which they call Wellness on Wheels. Before the ceremony we met with Lori, who works at NIH and we have been connected with her since 2011. We may have had the vision for Psychosocial Standards of Care, but it was Lori who provided the leadership to get them created and published. In addition to Lori, one of Mattie's doctors now works at NIH. We absolutely love Corina, and it was so special to reconnect with her today. She is an outstanding advocate and helped me tremendously when Mattie was hospitalized. She was the only doctor who never said to me that Mattie was addicted to pain medications or that he was developing an eating disorder. She understood the true nature of Mattie's cancer and how he was suffering. 

This is Corina with Mattie back in April of 2009. She is a doctor that thinks outside the box. She had to examine Mattie, but he wanted nothing of it. So she made a deal with him. He could use her pager and in turn Mattie would let her examine him. 

It was challenging talking to a group of people with a mask, but we did it. One of the NIH doctors who spoke mentioned that as a doctor he feels our cart provides junk, and not healthy foods. Mind you he expressed this to the crowd. When Peter and I spoke, we literally gave it to him. Clearly this is a doctor who has NO understanding for the stress of being in a hospital and caring for a child with cancer around the clock. As I said in my talk today, when stressed and dealing with non-stop traumas, one doesn't turn to an apple or a granola bar.... but to sugar. What a clueless wonder and I was having NONE of it. Mind you we donated the cart, so you think he would have been more politically sensitive, or at least be appreciative. 

My mom, me, Lori, and Peter. 

This little boy, Luciano, is from Peru. He is being treated for a blood disorder at NIH. He was on hand to unveil the Cart for us. He was an absolute cutie and once he saw the Cart, he opened every drawer and helped himself to its contents. Check out the video. 

Meanwhile back on the home front, we are inundated with frogs. Do you see him?

Our latest find is we have a turtle in our front flower bed!

Wednesday, May 4, 2022

Wednesday, May 4, 2022

Tonight's picture was taken in April of 2003. Specifically at Mattie's first birthday party! Mattie was having a hard day that day, because there was too much noise, people, and chaos. However, I felt he needed to be present for his birthday cake, so I lifted him up so he could see it. As you can see, he was transfixed on the image of Elmo on the cake!

Quote of the day: It is good to love many things, for therein lies the true strength, and whosoever loves much performs much, and can accomplish much, and what is done in love is well done. ~ Vincent Van Gogh

It is hard to believe that in the middle of the circus show that I coordinate everyday, that the Foundation is also in the midst of its annual fundraiser. Our Virtual Walk is struggling this year for two reasons.... 1) COVID has impacted the ability of our corporate sponsors to donate, and 2) I can't devote the time I typically do to fundraising. With that said, we are plugging away and our thermometer reads $57,712. Our goal is $100,000. I am grateful for our loyal donors and amazing friends who are helping me raise money. 

This morning, I went to my dad's memory care center with him to meet the therapist who was doing his physical therapy evaluation. The therapist is lovely and has been doing this for 45 years. His side kick is his son, who also is a physical therapist. So my dad will be working with both of them, an occupational therapist, and a speech therapist to work on memory strategies. 

When I returned to the center at 2pm to pick up my dad, I asked him how his day went. He had NO IDEA! He couldn't even recall what he was doing in his classroom before he came to the car. He had no recollection of eating or drinking anything while there either. The Center gives us a calendar for each day that tells us the activities, snacks, and lunch. I know my dad hates when we pepper him with questions about his day, as it highlights just how significant his memory loss is, however, I think the adjustment really has to come from me. I have to be okay with the fact that he doesn't remember, can't recall that he carries a notebook to record aspects of his day, and truly he is happy not doing any of this. He rather not use his brain or body and the only one NOT okay with this is me. Because I know if he doesn't move, he won't be able to move and live independently. Of course, I can't rationalize with him whatsoever.  

We have a family of blue birds living in one of the bird houses we have in the backyard. They are simply beautiful. 

Meanwhile last night, I swear I heard someone snoring while I was working in my office. It wasn't a human, but instead a frog. Peter went outside because the frog was hanging out by the pool. The frog was almost the size of Peter's foot. 

We had the worst rain, thunder, and lightning last night. At midnight, Sunny negotiated the stairs and came into our bedroom in a panic. Sunny has great trouble with stairs, so he must have been desperate. We literally put Sunny in the walk-in shower all night, it was the only place he felt safe. But in the morning, Peter had to carry him down the stairs (Sunny is 60 pounds). Thank goodness this storm did not happen while Peter was away because there is no way I can carry Sunny down the stairs. 

Tuesday, May 3, 2022

Tuesday, May 3, 2022 -- Mattie died 657 weeks ago today. 

Tonight's picture was taken in April of 2003, during Mattie's first birthday party! Mattie was IN LOVE with the Sesame Street character, Elmo. So naturally I chose to have an Elmo themed party. We only had family and a couple of close friends at the party. Mattie was thoroughly overwhelmed and we spent a lot of time upstairs that year. Nonetheless, I snapped this photo in the morning, before the party began, and Mattie was enjoying zooming around the first floor in his tot wheels. 

Quote of the day: Strength of mind is exercise, not rest. ~ Alexander Pope

Last week, when I went to the salon in Washington, DC to get my nails done, I saw my manicurist who I have known for over 13 years. I met her soon after Mattie died. After Mattie died, I went to get my nails done every two weeks. I never did that before, but it was a way to get out of my home and re-engaging with the world. I assure you it took great effort to leave my home after Mattie died, but I developed a routine and my nails became part of that routine. Needless to say, after seeing someone every two weeks for 13 years, we got to know each other well. 

Now that my parents live with me, I rarely get my nails done (last time was November) and I haven't cut my hair in about a year. In any case, my manicurist now works with my mom on a regular basis, as I try to regularly drop my mom off for her hair and nails. Last week, however, we both went to the salon and the manicurist commented to my mom that I am a very strong woman, but also a patient, calm, and understanding person. She asked why my mom was so different from me! I absolutely laughed, as I think it is fascinating what people observe. 

Today, after I walked Sunny (who is still urinating blood), I took my parents out to lunch. I can do that this week, because Peter is traveling and therefore, there is no reason to cook dinner. While out at lunch, the dialogue at our table was beyond interesting. It's interesting because neither of my parents are in touch with reality... I am talking about the reality of their decline. On Friday of this week, I am finally going to get my haircut. Because I will be at the salon for a while, I need to figure out a plan for my mom. I tried to book her a massage, but that did not work out. My mom doesn't want to stay at home while I am at the salon, so this complicates things. She can't really take her car out to the mall, because the last time she did that she got lost and never got to the mall. I can't put her in an uber or car service, because she never checks her phone. A driver would NEVER be able to coordinate with her. So really the only way is to take her places myself. 

In any case, at lunch, my mom and dad start talking and they concluded that they will go to the mall together on Friday while I am getting my hair cut and conditioned. Hysterical! My dad goes to his memory care program on Fridays, which I told him several times while talking, so he is definitely NOT going to the mall! But before I could express this reality, my mom said to my dad that he could go, sit and wait while she shops! Even read a book while he waits! Are you kidding??? My dad can't just sit and wait, nor can he read anymore! Those days may have worked in 2018, but NO WAY NOW. He needs constant supervision and would be a victim sitting unattended in a mall. He can't stay awake and God help us if he has to go to the bathroom and one of us isn't there. I let this conversation go for about two minutes, and then I lost it. I think I am losing my mind because this kind of confusion happens on an hourly basis. The first or second time of explaining this I can manage, but day in and day out of this is impossible. Some days I feel like I am losing it or will have a breakdown. I don't know if my mom refuses to see my dad's decline, can't accept his decline, or is declining along side him. 

Meanwhile, I am happy to report I have had no reaction to Prolia. Thankfully because I can't possibly manage one more thing! 

Monday, May 2, 2022

Monday, May 2, 2022

Tonight's picture was taken in April of 2003. Mattie was a year old and that day we went outside on our deck. Mattie loved fresh air. So much so that I spent more time outside than inside with him. Mattie is the reason that I became an outdoor girl. Before him, I spent little time out in nature and appreciating natural beauty. This is one of the many gifts Mattie left me. 

Quote of the day: I don’t stop when I’m tired, I only stop when I’m done. ~ Marilyn Monroe

I stayed up until 1:30am. If I didn't, I wouldn't be able to get any work done here. So after I put my dad to bed at 10pm, I came downstairs and worked. In the midst of thanking supporters for their donations, I saw I received an email from a neighbor. If you call it an email. Actually it was a nasty gram. He was complaining that I wrote a street wide letter and signed his name to it without his permission. I have been dealing with the HOA all weekend, as they wanted a letter from me documenting my concerns regarding the big construction project proposed for the adjacent house. I agreed to write the letter and the neighbor on the other side of this construction project was going to contact all the other neighbors on our street and alert them to the construction proposal. Basically we checked in with EVERYONE, and made sure they all knew about the content of my letter, before I added their names to it. However, at 11:30pm, this neighbor went on an attack! Frankly I was NOT having any of it and I pushed back. Lots of people were on copy for this exchange. Turns out that this morning I learned that he indeed knew exactly what I was talking about in my letter and my fellow neighbor shared the construction plans with the complainer. Needless to say the complainer is NOT on my happy list. 

It was another full day on the farm. I got my dad up, showered, dressed, he had breakfast, and we did brain games and his ten minute walking routine. I then started a load of laundry and jumped into the car to get my Prolia shot at the doctor's office. I wasn't sure what to expect. The shot was administered by a nurse. An officious one, and one who did not prepare me for how the shot would feel. When the medication was injected in, it almost felt like I was being stung by 100 bees. Thankfully it was a short lived feeling. I then waited in the office for ten minutes and had no severe reaction, so I went on my way. I am on around the clock Advil and Tylenol today, in hopes that I can ward off any side effects. I have no time to get ill here, and even if ill, given all I balance, I would have to work through my issues. Do you know that Prolia costs about $1,500 a shot? A shot which is needed twice a year. Needless to say, I refused to pay this amount for a drug. After months of arguing with CVS and my insurer, they introduced me to a Prolia co-pay card. Now I only pay $25 per shot. 

After the injection, I went to the grocery store. Then got home, put it all away, and walked Sunny for two hours. It takes two hours because Sunny is much slower. While out, I noticed that Sunny was urinating blood. I panicked! I called the vet ER and then reached out to Sunny's surgeon. I am telling you I was hysterical. She calmed me down, told me that Sunny's mass won't prevent him from urinating and because the mass in the bladder is huge, bleeding can happen. Unless it is uncontrollable blood and Sunny is disoriented, he is fine until we come up with a cancer plan next week. Sometimes I feel like I am going to have a MELTDOWN. 

Once I got Sunny home, I folded the laundry, and then got my dad into the car and we went out to lunch. As soon as I pulled up at the restaurant, my dad told me he was going to have a bowel movement. I literally left my mom in the car with my car hazard lights on. I whisked my dad into the restaurant and to the bathroom. But I was too late. Poop was all over him and of course he put his hand in it. It was a large clean up job. I am telling you there is NO rest for me. 

One would think that perhaps I could rest after lunch! Forget it. Once I got home, my dad had to run to the bathroom again. I got him settled, then my mom was in a panic about paying bills. So I dealt with that for another hour. Now it is almost 9pm, and I am still looking for my time! 

Sunday, May 1, 2022

Sunday, May 1, 2022

Tonight's picture was taken in April of 2005, at Mattie's third birthday party. That year the theme of the party was Blues Clues. Mattie absolutely loved that TV show and we had a Blues adventure at the party, along with a magic show, and the magician even brought his bunny, Hobbes. Hobbes  made a big impression on all of us. 

Quote of the day: Do not pray for an easy life, pray for the strength to endure a difficult one. ~ Bruce Lee

I got up earlier than I planned today because I had to get some things done before waking up my dad. I think the challenges of caregiving is having NO TIME whatsoever for one's self. On any given day, I am juggling just too much for one person. My latest to my plate was to craft a cogent letter to our Home Owners Association, regarding the extensive construction project proposed to occur at the house adjacent to ours. If this proposal goes through, life as we know it will be OVER for quite some time. The significant dirt, noise, and chaos will overtake our street. I wrote a three page letter between yesterday and today outlining the issues and how what is being proposed violates the community's bylaws. I also got every neighbor on my street to sign onto the letter. Do I expect this to change anything? Probably not, but I am not going down without a fight. 

On top of dealing with neighbors and this letter, I had my usual caregiving routine, laundry, walking Sunny, meals, and the list goes on. It is 8pm and I am worn out with no end in sight. Tomorrow morning, I head to see my doctor for the first injection of Prolia. A medication for bone loss. Given the extensive nature of my bone loss, I feel compelled to actively do something now, because unlike my parents, I will have NO child overseeing my care, or looking after me. I have to be as self sufficient as possible. I am worried about tomorrow's injection because I don't know the side effects it will have on me. 

In the Fall of 2021, I tried taking Fosamax, the oral medication for bone loss. It was a royal nightmare for me. It gave me 101 fevers, horrible bone pain, nausea, exhaustion and I was wiped out for three days. Since I had a rare reaction with an oral med, who knows what my reaction will be with an injection. Needless to say, what ever my reaction I will have to push through it because as a full time caregiver there are NO down days.