Saturday, May 25, 2024

Saturday, May 25, 2024

Tonight's picture was taken in May of 2004. Peter's mom sent Mattie this adorable ride on fire truck. Mattie LOVED it. Mattie loved all vehicles and anything with wheels! Mattie would ride this truck, wash it, and walk it around with it. When I was a child, I gravitated to very different things than Mattie. So when Mattie came along, I followed his lead and wow did I learn a lot!

Quote of the day: You will never know true happiness until you have truly loved, and you will never understand what pain really is until you have lost it. ~ Unknown

I am alive and going through the motions each day. But some days it hits me more than others that I no longer have a husband. NOT by choice. Perhaps it is because it is a holiday weekend, or perhaps it is a holiday weekend that somewhat defines the beginning of summer. But my reality has hit me. Since Mattie died, summer has always been a challenging season for me because children are out of school, and therefore, if I am out and about, I am likely to see families all around me. There is less of that during the school year. So already I feel different, but now it is almost like I have received the final blow. 

Post Foundation Walk, Peter and I typically went away on vacation to a beach. I feel lost, I feel constant loss and grief, I feel abandoned, and most of all I feel confused and unable to process what is happening to me. How did this happen? 

The highlight of my day is my friend Carolyn and her daughter Ellie came over again this weekend. Carolyn has helped me with the Foundation's raffle since our first Walk in 2010. Now 15 years later, we are still at it together. Carolyn picked up raffle items to deliver them to winners, which I greatly appreciate. 

In addition to doing me a massive favor, she and Ellie also brought treats! Mattie themed treats... a ladybug and a butterfly! Mattie would have gotten a big kick out of the pastry in the shape and coloring of a lady bug! 

Do you see the butterfly? Mattie and Ellie went to preschool together and even when Ellie was three years old, we got along great. We just understood each other. She is very sensitive, intuitive, and reads her environment well. Which is why I always said she has the makings of a great psychologist. In any case, Carolyn and Ellie were the bright spot in my holiday weekend!

Three things I am grateful for:

1. Visits from friends who understand I am traumatized. Which means that I really don't act like myself anymore. 
2. CHOCOLATE treats!
3. Gardening. I spent two hours in our front yard today pulling weeds, shaping bushes, and cutting off dead roses. When I came inside, I looked like an extension of the garden. 

Friday, May 24, 2024

Friday, May 24, 2024

Tonight's picture was taken in May of 2005. That weekend we took Mattie to the DC Aquatic Gardens. One of my favorite places to visit. It is a hidden gem in the city and filled with beautiful lotus plants, water lilies, and bird traffic. As you maybe able to tell, Mattie wanted to move about and did not want to sit still for this photo! But he did as he knew my love for capturing all of our moments together. Not just special occasions, but most especially the daily routine. 

Quote of the day: You can’t buy love, but you can pay heavily for it. ~ Henny Youngman

Midday I took my mom to Starbucks. We have gotten to know a local author, who frequents the store and even writes there! She has been gone for ten days on a European trip. She decided to go on this trip by herself because her husband did not want to go. I have to tell you when she told me this three weeks ago, I paused. I could not fathom going on a trip by myself, much less across an ocean to a foreign country. I have too many hang ups and anxiety, as I don't think from a safety perspective it is a good thing to travel alone. Putting that aside, I used to be a people person and as such I prefer experiencing things with others. Others that I know. Any case, the author is back and we got a chance to catch up with her. I literally told that I give her a gold star for courage and bravery to travel alone. She laughed but she understood what I meant. 

One of the many wonderful things about being in a relationship is that you are never alone. You can bounce things off of each other, share life's ups and downs, and in the process grow, develop, and evolve together. In my life, for the last 35 years, Peter was always a significant part of my existence. It is hard to describe the loss I live with, and perhaps that this the complexity of an ambiguous loss. A loss when your loved one is still alive, but no longer part of your life. My mind and heart are in a constant cyclical pattern DAILY of trying to understand how I got to where I am today. Of course, I have no answer, or real insights. As we were not a couple with historical problems (other than the obvious of losing Mattie!). 

When I got home today, I opened up a big envelope and out popped these beautiful 3-D sunflowers. My friend and colleague, Nancy sent them to me, in support of the Foundation's Walk season. These cuties are now in my office, there to remind me of the solid friendships I have formed over the years. A reminder that those who know me, value, and appreciate the qualities I bring to our connections. 

It was 78 degrees today and though it is a hassle to serve dinner outside, I did it anyway. It is a hassle because no meal is complete without my dad jumping up and down to the bathroom. The logistics of getting in and out of the house are challenging for my dad. But as long as we can do it, I am doing it! 

Even Indie enjoyed time outside! She has taken over Sunny's spot on the couch. Though Sunny has been gone for four months, his presence and love are NEVER forgotten. 

This morning I changed the sugar water in the hummingbird feeders. These little birds are finicky. If the water turns cloudy in any way, they won't drink it. As soon as I put the fresh water out, they were all a flutter! Can you see this little bird on the right?

This blue birdhouse attracts blue birds. Do you see the blue bird with the orange breast sitting on the hook? Every spring the blue birds come back and nest in this house. They are like clock work! 

The three things I am grateful for today:

1. Sunflowers and the beautiful sunflower card I received in the mail. 
2. Indie and her antics. 
3. Eating outside and seeing the beauty of our backyard. A space I fell in love with in 2021. 

Thursday, May 23, 2024

Thursday, May 23, 2024

Tonight's picture was taken in May of 2006. Mattie jumped into bed mid-day, fully dressed. We recently had purchased these Bob the Builder sheets, and he absolutely loved them! To me this photo said it all! Big smile and true happiness. 

Quote of the day: Doctoring her seemed to her as absurd as putting together the pieces of a broken vase. Her heart was broken. Why would they try to cure her with pills and powders? ~ Leo Tolstoy

When I tell you today was OVER the top, I am NOT kidding. My day started with the usual chores. At 10am, our landscaper came over, as I wanted to talk with him about weeds in the grass and other issues. I have known Ritchie since we moved into the house. I knew him, but it was Peter who mostly interfaced with him. However, what I have learned is that both Ritchie and my irrigation specialist have also been abandoned by their spouses. I wasn't expecting to share these commonalities, but it is fascinating to see how people respond to me being alone. Honestly the responses are NOT what I expect to happen! I expect to hear, I am sorry, and we move on with conversation. That is NOT what happens! In each case, both men, were truly stunned, saddened, shared their own stories, gave me hugs, tried to instill hope, and then unsolicited, each one told me that I am an extraordinary and strong woman. I find this intriguing coming from people on the periphery of my life. This was the highlight of my day. It went downhill from there. 

When I got back into the house, I called both the Prolia Co-Pay assistance program and the specialty pharmacy that used to fill my Prolia prescription. Recap, for two weeks now, I have been trying to access my $1,500 co-pay to pay for the Prolia injection I received in March. Without insurance or co-pay assistance, the drug is $1,800 per dose. Which is why most patients sign up for Amgen's co-pay program to help off set the astronomical cost. Any case, my co-pay landed up in the wrong place and for the last two weeks I have been trying to get the co-pay refunded back to my card, so that I can actually apply them to the place that is billing me. When I tell you the process has been mind numbing, I am not kidding. As Amgen (who runs the co-pay program) says the specialty pharmacy has the co-pay and the pharmacy is telling me they refunded the amount back to my Amgen card. OH MY GOD! 

Today I was on the phone for THREE hours! This is not an exaggeration. After three hours, I learned that the money has been refunded and now I have to find it in the Amgen system. This will be next week's battle. Truly after this three hour call I was ready to blow. But it did not end there. My parents wanted to go out and eat something, yet I technically couldn't leave because I had to wait for the HVAC repair person and the exterminator to deal with a wasp hive. My mom was making things so difficult that I literally rescheduled the HVAC appointment to tomorrow and I called the exterminator, gave details about where the hives were and then took my parents out. 

Does my mom appreciate all I am balancing? NOT one bit. Instead, she was lamenting. Her laments can be hurtful.... such as she wishes she did not live here, she wishes she did not have a daughter, and she lived too long. If this was a one time occurrence, this venom would be bad enough, but it is a weekly and sometimes daily nightmare. But today, I couldn't put it into context. Today I couldn't walk away and regroup. Mainly because we were in the process of getting out the door and to the car. Literally I lost it on the driveway. I was screaming my head off! My life is in shambles, everything is crashing down around me, and my mom pours gasoline on my fire. I gave it to her today and the irony is she has no idea how her comments are received. I think she got the 411 today after my tirade. 

Three things I am grateful for:

1. Ritchie, the landscaper, said I am doing an excellent job keeping up the property. He can't get over how well I am weeding. It is a full time job at this house! But getting positive feedback on the job I am doing meant a lot. 
2. This evening, I spent two hours outside trimming bushes, weeding, and watering. 
3. Mattie Moon...... 

This is my Mattie Moon shining through my bedroom window. Mattie is watching over me and is VERY unhappy with what he is seeing. 

Wednesday, May 22, 2024

Wednesday, May 22, 2024

Tonight's picture was taken in May of 2006. I went out to lunch with a friend that day and when I got home, Peter and Mattie bought this bicycle together. Mattie was SO excited. Our commons area was the perfect place to learn how to ride as it was safe and secure from cars. Within a few months Mattie was riding without training wheels. However, once Mattie was diagnosed with cancer in 2008, he was afraid to ride without training wheels. However by that point, we had given away his wheels. So I reached out to Team Mattie and within an hour we had about four sets of training wheels! Amazing!

Quote of the day: The broken heart. You think you will die, but you keep living, day after day after terrible day. ~ Charles Dickens

This morning I got up extra early so I could get myself ready, breakfast made, chores done, wake my dad up, get him showered, dressed and downstairs so that I could get to the hospital by 10:30am. I had to be super organized because I needed to pack a bag for my mom with cocoa, cereal, napkins, her newspaper, and a blanket to take to the hospital. In addition, I transported a big wine bottle on ice with me. After my hospital appointment, I drove to Alexandria to hand deliver this big bottle of wine to the Foundation's raffle winner! Given that it was 88 degrees today, I made sure that wine stayed chilled! 

Yesterday the hospital called and told me that my neck MRI would be 45 minutes, and then I would have to wait an hour, before getting the next MRI of the head. Which I was told was another 45 minutes. So I prepped my mom that she would be waiting a while. To my surprise, by the time I got to the hospital, they arranged for me to have my neck and head MRI done at the same time. That was the first blessing of the day. 

When I was called back to the scanning area, I worked with Lisa and Cheryl. Lisa placed my IV in my arm. Here's the funny part! Lisa is a nurse and is deathly afraid of needles. She needs a sedative when this is done to her. When I told her that my veins are hard to find, she was nervous! She did not want to inflict pain on me. Turns out despite her own fears, she is excellent at what she does. She got the IV in 1, 2, 3! Then I worked with Cheryl. Cheryl explained the MRI process to me. I have had so many head MRIs in my life, that I am very familiar with the process. Many people feel confined in the tube or don't care for the noise. I am so exhausted and tired of listening to people all day, that being in the machine for 40 minutes was like a retreat. With all that noise, I could feel myself falling asleep. I had to catch myself, because I did not want to make any movements, that could affect the scan. Gives you some perspective on my level of exhaustion, if I could fall asleep in an MRI machine. 

Any case, the scanning process went very smoothly and literally within two hours, I got a message that there were results in my portal. I knew immediately that that meant everything was okay. I have normal scans, which is another blessing. Since I am symptomatic with lightheadedness, dizziness, ringing in my ears, and ear fluttering the doctor felt that I needed a scan to rule out other problems. Now we know for sure that this is stress and migraines. My doctor is very pro-active, and we have a similar Type A personality style. 

As the day went on, I received a message from my neighbor's contractor, providing me updates. Given that I wasn't home, I did not see what he or my neighbors were experiencing. About an hour later, one of my neighbors sent a group message to our entire block. I will spare you the details, but overall, I would say being a pro-active person, I believe in upfront, honest, and open communication. I have some neighbors who prefer to gossip, instead of being part of the solution. This irritates me to no end because at the end of the day, I have to live with myself. Trust me if you are looking for an advocate and someone to stand up for justice and to do the right thing.... then you want me on your side. I guide my life by integrity, fairness, and kindness. However, not everyone else does and this is where I can lose faith and hope in life and in humanity in general. 

If my day stopped there, that would be more than enough. But of course not. I got home and found our second floor air conditioning system isn't working and I have a swarm of bees in our front and backyards! Truthfully, at times I feel like the female version of Job (from the bible, tested at every corner). All I can say is, may God give me strength to face each and every day.  

Three things I am grateful for:

1. Wonderful MRI nurses and techs.
2. Good MRI results.
3. Those who care enough about me to ask how the testing went!

Tuesday, May 21, 2024

Tuesday, May 21, 2024 -- Mattie died 764 weeks ago today.

Tonight's picture was taken in May of 2007. It was Mattie's first day of summer camp at his preschool. Mattie was excited about the experience and wasn't thrilled that I was holding up the process to take a photo! But in usual Mattie fashion, he complied as he knew my love of capturing photos of our time together. All I can say is thank goodness I was obsessed with taking photos, because they are the only things I have left. Literally and figuratively. 

Quote of the day: Heaven doesn’t ignore cries of a broken heart. ~ Toba Beta

It was quite the day. I have a neighbor who, for the last ten months, has been doing a massive renovation project of her house. For the most part I have taken a deep breath because I understand the inconvenience of construction. But today was the last straw. I had to take my dad to his memory care program and I literally couldn't get out of my driveway. A huge dump truck was blocking the driveway and the entire cul de sac. It wasn't my finest moment. I sent a text message to the lead contractor of the issue. He came running over to assist, but by that time, I was fit to be tied. 

I got my dad to his memory care center and then came home to contact the county. I truly have no idea what rights residents have regarding these issues. Bottom line, after making several calls, residents have NO recourse. If the project is permitted and there isn't anything egregious going on, then the county isn't interested in hearing from you. I am learning a lot about all sorts of laws this year. 

I have a lot of post-Walk admin to do and got about two hours of it done this morning. But then my mom alerted me that she scheduled a call with someone at 1pm and I had to be on the call. This was news to me, as I thought this was a social call she scheduled. Needless to say, I am so stressed out that I truly do not appreciate more tasks added to my plate. But I complied. 

This evening, after prepping dinner, I went outside to trim back our rose garden. I was there for about 45 minutes. I still need to go at it, but it looks a lot better than it did! Peter created this garden for me soon after we moved in. I love roses and have committed myself to keeping our outside beautiful. I am out there practically daily weeding, watering, and nurturing the gardens. 

Tomorrow I am headed for MRIs. I got a call from the hospital this morning alerting me that they will not do all three MRIs tomorrow because they do not want to expose me to all that contrast at one time. So I will do two MRIs tomorrow and one in June. Given the fact that I have bouts of dizziness and fluttering in my ears, the doctor feels it is important to understand what's going on. My mom insists on coming with me, which makes things more stressful for me, because I can't focus on my own needs. I literally am prepping snacks and a bag for her tomorrow while she waits for me. Despite the fact that I asked her to stay home, she won't. 

Three things I am grateful for:

1. My garden filled with beautiful colors that only nature can produce. 

2. The new garden hoses (copper bullet hoses!)! I know silly, but they make watering things so much easier, than dragging around those heavy hoses that kink. 

3. A chocolate cupcake!

Monday, May 20, 2024

Monday, May 20, 2024

Tonight's picture was taken in May of 2008. That weekend we took Mattie to Calvert Cliffs in Maryland. This is an incredible and must see experience. I read about it and insisted we visit! So basically you have to walk a mile through the woods first. The trail is beautifully wooded, and filled with wonderful wildlife, that leads to this beach. This beach is known for its fossilized sharks teeth. Honestly I couldn't believe this was the case until I saw it! Mattie was on a mission and we did not leave until teeth were dug up and found! It is a great spot to take young kids and it makes for a memorable family day. Life was so different then and I did not realize how lucky I was!

Quote of the day: I’d rather have a broken arm than a broken heart. ~ Christie Brinkley

I literally was so exhausted from yesterday and my daily routine that I did not get up until 7:30am! This is unheard of for me since my parents have moved in with me. I knew I needed rest, which was why I canceled my mom's physical therapy session this morning. This afternoon, both of my parents had their annual eye doctor appointments. I love my eye doctor. He is witty, humorous, and an all around good guy. In any case, he is a keen observer of what I do for my parents and basically told me outright today that they are doing so well because of me. What an astute fellow! I never told him that they live with me or that I care for them around the clock. But somehow he put the pieces together. 

My dad can not answer a solitary question about himself. He has no idea what medication he takes, he has no idea how his eyes are, and truly he can't answer any medical questions posed to him. I am his memory! It is a very large responsibility and I do this for both parents daily, around the clock. 

What I came to the conclusion though is how a doctor's office treats us (both staff and doctor) can make a difference in my mood. Trust me it is hard enough getting my parents to the office on time, but when I have to go on the defensive, it makes life much more complicated. Today was a positive experience, so much so that my dad said.... "I like this doctor." My dad may have lost his memory, but he is still a keen observer and just when I think he isn't absorbing anything, he surprises me. 

I came home and spent some time outside weeding and watering flowers. I even served dinner outside on our porch. A first for the season! This is also another big undertaking as my parents need seat cushions, tissue boxes, blankets, and my mom even needs a heating pad! YES even in the summer. 

It was also Indie's first time out for the season! She LOVES being outside and bird watching. 

I had one of Carolyn's red velvet cupcakes that she brought me on Saturday! Old habits die hard. I still cut my cupcake in half and eat it with a fork. I have to try the Oreo cookie technique of cutting off the bottom and smooshing it into the frosting. 

Three things I am grateful for today:

1. The kind and humorous eye doctor. 

2. Email and text messages from friends who realized what a tough day yesterday was for me. 

3. I went to bed last night communicating with my cousin Cheryl. She wrote to congratulate me on another great Walk. I confided in her how upset I was and disappointment in my technology challenges with Facebook Live and also not meeting the Foundation's $100K goal. There are many ways to respond to my lament. But basically Cheryl helped me lighten up on myself and made me see given all that I am facing, the fact that I was able to pull all of this off, manage my parents, and cope with what is happening in my personal life, is amazing. I can get absorbed in a downward spiral easily, but Cheryl's message made me take a pause, which helped me reset and I eventually went to sleep. 

Sunday, May 19, 2024

Sunday, May 19, 2024

Tonight's picture was taken in May of 2009. I will never forget this exact moment in time. It was the end of the Mattie March, held at Mattie's school. It was a very energizing, meaningful, and engaging event. But by the end, Mattie was tired. Pictured by his side was his best preschool friend, Zachary. Zachary stayed with Mattie throughout the entire event. Prior to Mattie's diagnosis, both Mattie and Zachary did a lot of physical play... running, climbing, and jumping. However, once Mattie was diagnosed and had his surgeries, this type of play wasn't possible. This could have set off most kids, but not Zachary. I will always be amazed at how Zachary shifted and accommodated to Mattie's needs and abilities. It was so noteworthy, that I can recall it now like it were yesterday. They had a special friendship and connection. 

Quote of the day: Absence is a house so vast that inside you will pass through its walls and hang pictures on the air. ~ Pablo Neruda

Today was Mattie Miracle's 15th anniversary walk. I would have to say that I miss the energy of a live event, but I am so grateful that our Walk has been virtual since 2020. If I did not convert the event during COVID, I would have a HUGE problem now. There is NO POSSIBLE way I could manage a live event and caregive around the clock. It just isn't possible. As it is, I thought I was going to lose my mind this morning. For some reason, I did not calculate the timing of my morning routine correctly. I truly needed to get up earlier, so that I could do my usual chores, get my dad washed, dressed and downstairs. But that is not how it played out today. Maybe because I am EXHAUSTED.

When the Walk started at 10am, I was receiving photos from supporters and felt like I need to be glued to the computer. Yet I could hear my mom going at it with my dad upstairs and frankly she doesn't know his morning routine or even how to do it. So I had to stop what I was doing and address what was going on upstairs. Which meant I was away from the computer for 30 minutes. I could feel my stress level go up, but then I said to myself.... I am ONE PERSON. I can just do so much and I will get to photos and walk correspondence when I return to the computer. 

I am a bundle of stress and anxiety these days and in addition to that, I would say today was a day filled with heartache. It is a devastating feeling to know that I was hosting a Walk without Peter. No matter how I look at this situation, I don't understand it and because my brain has no previous data or experience like this to pull from, I literally feel like I am walking on fire most days. If I had to summarize how I felt today in one word, it was distraught!

I think given my current situation, I now have great fears about abandonment. I worried all day that perhaps our supporters would abandon me too. Perhaps they wouldn't walk, they wouldn't send me photos, and you get the picture! Thankfully our loyal and steadfast supporters from all over the USA, sent photos and reached out!

These are our top walkers this year. They are the walkers with the highest step counts. Can you believe that all six of the individuals listed below (our winners) together walked 53 miles for the cause! Amazing!

ADULT WINNERS: 

Gustavo Bonany: 36,614 steps

Geannie Darby: 15,690 steps 

Lori Wiener: 13,426 steps

KID WINNERS:

Erich Bonany: 28,747 steps

Daniel Bonany: 22,442 steps

Jake Pisano: 16,443 steps

Congratulations to our raffle winners! This year, was the first time I had our on-line raffle system randomly pick winning tickets. This was a blessing! It streamlined the raffle so that I wasn't dealing with raffle tickets and boxes. 

My three things I am grateful for today...

1. Our Sponsors
2. Our Supporters
3. Walk photos! It was wonderful to see and feel the energy our supporters have for Mattie Miracle!