Saturday, April 6, 2024

Saturday, April 6, 2024

Tonight's picture was taken in April of 2007. That day we were headed to celebrate Mattie's 5th birthday at the National Zoo. When I am telling you the weather was horrible, I am not kidding. It was pouring ALL day. I thought the party was going to be a total disaster. The Zoo's policy was events were rain or shine. They had an indoor space for cake and gatherings, but then we all went for a walk around the Zoo with a guide. I advised parents to dress their children for rain with boots and umbrellas. I thought all the animals would be hiding and that the tour was going to be a total flop!! Turns out the kids thought it was a fun adventure, the Zoo wasn't crowded because of the rain, and the animals were out frolicking in the water. It was a success and Mattie had a wonderful time. That day taught me that something negative, can turn out to be a positive. 

Quote of the day: There’s such beauty in the hard honesty of that, in accepting and giving love while always aware that it comes with an unbearable price. ~ Dean Koontz

My mom showed me this message she saw on Facebook today. Naturally it resonated with me. Though I am not writing in this public forum about my daily life, I assure you it is absolutely hellish since Peter left. The pain that I endure each day, perhaps can be someone else's guide one day, but right now, I am too devastated and can only manage on a day by day basis. 

For some reason, something compelled me to go outside into the backyard today. Thankfully I did. I quickly noticed this pile of mud and what you may not see was water was bubbling out of the ground. With no end in sight! 

Truthfully I panicked. I did not know what to do or who to call. I text messaged our plumber. YES, he and I get along that well! He helped me determine whether it was a house or sprinkler problem. He directed me to shut off the water to the house. He taught me how to do that the last time he was over. So I did that, then he said go upstairs and turn the sink on and then turn the sink on in the basement. This helps to drain out the water from the system. While the sinks were running, he had me go outside. The water was still coming out of the ground at a clip! So we determined that it wasn't a house issue, but a sprinkler issue. Our landscaper came on Tuesday and turned on the sprinklers for the season. Yet he did not spot this issue on Tuesday. Which means that while the lawn was mowed on Friday, the machine must have hit a sprinkler head. My plumber advised me to shut off the sprinkler valve, because I would have a high water bill if I continued to let this go on throughout the weekend. LOVELY... I had to first find the shut off valve. 

When the landscaper was here on Tuesday, he pointed to where the shut off valve was for the sprinklers. So I went to the front lawn, opened this hatch door and low and behold I saw this yellow lever. I shut it! Viola the water in the backyard stopped bubbling from the ground. It is definitely a sprinkler problem and I will be on this landscaper's case on Monday. Another thing I can add to my resume. 

I couldn't find a soul to help me. Many companies are closed on Saturday and don't answer their phones! So necessity is indeed the mother of invention. 

Later today my mom wanted to go out for a snack. I wanted frozen yogurt and she wanted to go back to Starbuck's because she wanted hot tea. Truthfully I had a mini meltdown. As everything is always about her! Then she threatened me that she would stay home. I said that was her decision, but Daddy and I were going out. My mom has a huge fear of missing out, so I knew she wouldn't stay home alone. Sure enough she got her coat on and came with us. My mom admitted in the car that she truly can't handle the stress of our daily life. I absolutely understand, as I am living a soap opera (which isn't clear to my readers, because I am not writing the details of my existence here), and this is hard to take for an 88 year old. It is also hard for a parent to see their child suffering so traumatically. Therefore, I try to be compassionate, because I know her acting out and constant laments are her way of trying to manage stress, anxiety, and fear over what is happening to my life. 

Friday, April 5, 2024

Friday, April 5, 2024

Tonight's picture was taken in April of 2006. This was Mattie's first birthday party outside of our home. We had it at Riverbend Nature Center, with a couple of Mattie's friends from preschool. It was a dinosaur themed party and there was a fabulous naturalist who gave the children a wonderful walk through the woods, a chance to do an archeological dig in the large sand box, and the children also got to meet and greet several native animals such as turtles and snakes. It was a very memorable fourth birthday party!

Quote of the day: .....love knows not its own depth until the hour of separation. ~ Kablil Gibran

This is Indie! Since Sunny has died, she sticks to me like glue. She has become super vocal and she has developed her own routines with me. In fact, at night time, when we gather as a family to watch TV, Indie sits on the armrest of my side of the couch. She wants attention and to receive lots of pets. If I leave the house and come back hours later, she zooms to the door to greet me. Just like Sunny used to do! I find her new found self fascinating and I am not sure if she is trying to fill a void in my life, or the fact that she sees a void, and wants to fill it with her own kitty demands. I have no answers but I am glad she is in my life. 

This evening, my dad was ON! I mean all cylinders firing! I haven't seen him this together in a long time. He was engaged at dinner. He was an active part of the conversation, we did a cross word puzzle together while eating, and he actually remembered what he ate around ten minutes after dinner was over. I joked with him.... I wanted to know whether he ate his spinach or wheaties today? 

It is amazing how his presence made a huge difference in the tone of our household. Typically things can be very depressing, where my dad is lost in space and my mom is repeating the same thing over and over. Tonight was different and I have no idea what caused this change, but it was a welcomed change because the intense stress I am under each day is getting to me physically and mentally. 

I think my parents are worried about me, and given that their typical focus is inward, this should give you some indication of how badly I must be doing. I am, as my therapist calls me, 'a warrior woman.' I will manage through any given day if I deem someone I love needs me. But I am fatigued and if I spend any amount of time focused on my life, I would collapse. Which is why, I don't focus on emotions right now. I don't have time for this, when my attention, time, and presence are needed elsewhere. 

The two highlights of my day were eating two chocolate covered strawberries and learning that my dad's physical therapist isn't coming tomorrow morning. Which means I can sleep past 6am!  

Thursday, April 4, 2024

Thursday, April 4, 2024

Tonight's picture was taken in April of 2005. We were celebrating Mattie's third birthday. Mattie loved Blues Clues, the TV show. Therefore, that was the theme of his party. We did a Blues Clues game and the kids were looking all over the place for clues to solve the mystery. It was a memorable day, as I had a student from the University come over and host a magic show. He even brought his pet bunny, Hobbs. Mattie loved the bunny and his party. Special moments and memories, that I will always cherish. 

Quote of the day: What we have once enjoyed we can never lose; all that we have loved deeply, becomes a part of us. ~ Helen Keller

Mattie would have been 22 years old today! 

This morning, after doing my usual chores, I got into the car and drove to Mattie's school. There was no way I was going to let this day pass without honoring my son. I am sure Mattie would have understood if I did not go to his tree, but I wouldn't have felt good about this decision. I left my parents at home for two hours, and one of those hours, my dad was occupied with his physical therapist. 

When I arrived at Mattie's school, I was surprised to be greeted by a security guard. That was a new addition, but in the world we live in, it is understandable. But it saddens me. I had to explain to the guard why I was on campus and what I was going to do. We got to talking about Mattie's tree and naturally he let me go about my business. 

When I arrived on campus, there were first graders all over the playground and by the tree. This encounter could have gone very well or very badly. Typically I prefer to be by myself when I am at the tree. So I can think, reflect, and spend time with Mattie's trees. I did mind my own business as kids were playing all around me. However, there were two girls who approached me and wanted to talk. They wanted to know what I was doing. So I explained that this was a tree in honor of my son, who was a student at their school. I did not elaborate. The girls loved the 12 cupcake ornaments I brought with me and they said they were the perfect decorations to put on Mattie's tree, given that today was his birthday. In fact, they said the cupcakes looked so real, that they wanted to eat them! The girls were very cute and they reminded me what a tender and special age they were.... the same age when Mattie died from cancer. 

A close up of one of the cupcakes!

Mattie's tree. The white swamp oak doesn't have leaves yet, but the tree definitely looks strong and healthy. I tied a lovely orange bow around the tree and straightened out other ornaments on the tree. Many of the children came up to me to tell me how much they love looking at the ornaments when they are playing! It is hard to capture in a photo, but the tree truly looks magical, as it has all sorts of lovely ornaments on it. 

I bought this ornament in 2022. It says "love you to the moon and back." This is a saying I used to frequently say to Mattie. 

So the White Swamp Oak above is the official Mattie memorial tree. But it is actually tree number 4 that was planted! 

This photo is of tree number 3! It is a Yellowwood Tree. Shortly after it was planted, it was struck by lightening and its trunk split in two. I did not like how it looked or the symbolism of it. Which is why the school agreed to plant the tree above (tree #4). 

However, before this Yellowwood (tree #3) was planted, there were two other memorial trees planted. The very first tree DIED completely. Then a second one was planted in its place, and it struggled and got diseased. Which led to tree #3, the yellowwood which was struck by lightening. Seeing a trend here??? Hopefully tree number 4 is a winner. 

When I arrived home from visiting the tree, the door bell rang. I went to the door and was greeted with this wonderful Edible Arrangement. It was sent to me by our Cousin Cheryl. Cheryl is from Peter's side of the family, but over the years we have gotten to know each other and we value our connection. Cheryl has been a long time blog reader and she feels she has gotten to know and love Mattie through my writings. I am very lucky to have her in my life. 

A close up. I assure you these treats were needed tonight. It has been a very hard couple of days. My parents are very depressed and upset about my life and tonight both of them said they wish they were dead. I have been hearing this lament for a number of days. Tonight I just let them both have it. I literally said, ENOUGH of this kind of talk. Having them die will not solve my problems or make things better. Their life is of value and I told them to cut it out. I then gave everyone a goodie from here and this stopped the negativity for a bit. As I have told them, I can't live 24/7 focused on how my life has imploded. Yet I know, it is hard, as it is all consuming. 

Wednesday, April 3, 2024

Wednesday, April 3, 2024

Tonight's picture was taken in April of 2004. This was the photo my mom took of us just before Mattie's second birthday party got underway. The theme that year was trains.... as Mattie had a fascination with all sorts of locomotion. By that year, Mattie actually understood what was going to happen at a birthday party, and truly enjoyed the attention and all the company and games. 

Quote of the day: I loved you your whole life. I’ll miss you for the rest of mine. ~ Unknown

On birthdays, holidays, and other milestones, we visited Mattie's memorial paver at the hospital. Once Sunny came into my life, he joined me on these visits. Sunny had a sixth sense. He seemed to understand that he had to be patient and sit. That day, Sunny sat with his paws on Mattie's paver. It is hard to believe that Mattie is gone, Sunny is gone, and the beautiful man (Tim Mooney) who arranged for this paver to be created and placed by the hospital entrance are now all gone from me life! Gone too soon. 

Today marks the 12th week of Sunny's death. 

This evening, I went to my weekly therapy session. I come into the session each week wound tighter than a top. I am sure I am a bundle for the therapist as I am facing another great tragedy in my life and I am heart broken, filled with anxiety, and at times deeply saddened. As our session went on, I mentioned to her that tomorrow, Mattie would be 22 years old. It is hard to believe Mattie would have been graduating from college this spring. But unfortunately I missed so many opportunities and years with him. For me, we never got past kindergarten. In my mind Mattie is forever 7. In any case, the therapist asked how I acknowledged Mattie's birthdays once he died. 

I explained that pretty soon after Mattie died, I couldn't stand remaining in Washington, DC for Mattie's birthdays. I am not sure what I was expecting from friends and his support community. After all, you can't have cake, balloons, and fun. In any case, I always felt that no one could appreciate the heartache of such a birthday, so the best way to handle it was to get out of town. Peter and I would go to Florida or other destinations and try to honor Mattie's life in our own way. Getting away enabled us to separate from those who knew us, we got away from the potential of being saddened by others in our life, and the possibility of being disappointed from unmet expectations. Once COVID hit, going away wasn't possible. So instead, we would walk and visit Mattie's tree, the hospital memorial paver, and a memorial brick at the church where Mattie's funeral was held. 

However, I told the therapist tonight that with my current situation and managing my parents' care, I did not plan to do anything on Mattie's birthday. In all reality if that was my ultimate decision, I am sure Mattie would have forgiven me. But while talking about Mattie in the session, I began to cry. Understand that I am not a crier. So if I am crying, watch out. That means I am on overload. As the therapist knows, I do not have time to have a pity party, to cry, or to feel anything right now. There is JUST NO TIME. I am too busy putting out one crisis after the other at home. Yet as I reflected on Mattie's birthday, I decided, I am going to do what is right and every one else is going to take a number. 

So I came home, made dinner, and pulled out the cupcake ornaments I bought for Mattie's tree last year. I strung them with ribbon and tomorrow I will be tying ribbons around Mattie's memorial trees and decorating the official tree with ornaments. Regardless of the weather, I will be out there, because the one thing I did right in life was I had Mattie. Mattie was my life's greatest teacher and through his amazing life and death, I have used these lessons to help thousands of children through his Foundation. His life deserves acknowledgment and his memory deserves to be honored and preserved. 

Tuesday, April 2, 2024

Tuesday, April 2, 2024 -- Mattie died 757 weeks ago today.

Tonight's picture was taken in April of 2003. We hosted Mattie's first birthday party at our home in the city. Only family was invited. At that point in Mattie's development, he did not like to be around a lot of people nor did he like  noise. I distinctly remember having to take Mattie upstairs to his bedroom at some point during the party because there was just too much chaos for him. I remember that moment in time. Back then, I would never have guessed how my life would have unfolded. Or completely disintegrated. 

Quote of the day: Dogs…do not ruin their sleep worrying about how to keep the objects they have, and to obtain the objects they have not. There is nothing of value they have to bequeath except their love and their faith. ~ Eugene O'Neill

I got up at 5:30am in order to get myself ready, make breakfast, get my dad up, showered, and dressed and downstairs before the water irrigation professional arrived at 8am. Honestly by 8am, I was ready to go lie down. 

Since I have NO IDEA how the sprinkler system works, I asked Steve if he would give me a tutorial. After he started up the system, he knocked on the door and I met him in the garage. He was truly helpful. He did not treat me like a dummy, but instead we got into talking about the cells of grass and how they respond to water ONLY at dawn. I learned you should not water grass during the day or evening, as the plants cells are closed. Therefore the cells wouldn't be absorbing water during those hours. Also the heat of the day, can burn grass. In any case, I now get it and have reminders on my phone as to when to turn the system on, I get how it is programmed and will get Steve back when summer starts to re-evaluate if we need to make some changes to the system, in order to either water more frequently or for longer intervals. If I could only find a Steve for all my other issues that I don't know how to solve. 

However, nothing about the morning was easy. My day started with my dad pooping in the shower. Then while I was outside talking to Steve, I left my dad unattended for about ten minutes. In that time, he got up to go to the bathroom and pooped all over the floor. While trying to clean this mess up, the door bell rang, and it was my parent's physical therapist! Truthfully how I haven't lost it completely is a total wonder. 

Once the therapist left, I opened up my email to find that I have a $1,800 Prolia bill. I literally almost fell off my chair given that I checked this and double checked the price before getting this last shot. The infusion center assured me I wouldn't pay more than $275 for the shot. In fact, I opted to go to the infusion center over my doctor's office because of the price reduction. Needless to say, I contacted the infusion center and they will be contacting my insurer to work this out. The person who gave me the shot, gave me her cell phone number. I reached out to her today. I consider this nurse my Prolia angel. As she says, no one should have to pay $1,800 out of pocket for medication that is needed. AMEN!

I also decided to fill out an application for Thrivent's Live Generously recognition. If selected Mattie Miracle could win $1,000. There are many individuals who have been nominated. But I figure we have as much of a chance to win as anyone else. 

To read the nomination and others, go to: https://thrivent.cotribute.co/stories/136052

Monday, April 1, 2024

Monday, April 1, 2024

Tonight's picture was taken on April 4, 2002, Mattie's birth date! I will NEVER forget this moment in time. Mattie's due date was April 6th. I was told that first babies tend to come after their due date. NOT MATTIE! He wanted out and literally kicked so hard that my water broke. I went into labor on April 2, and did not deliver Mattie until April 4. By that time, I had to have an emergency C-section, I was running a high fever, and it was during labor that I developed my first migraine. A migraine which remains with me daily since that moment in time. When I was in the operating room, with my arms taped down to a table and a cord over my head keeping my abdomen open (I am not kidding), I could hear the obstetrician saying... what's this?! Not what you want to hear. Turns out I had a soft ball size tumor on my bladder. She had to move it aside to get to Mattie. When she saw Mattie and pulled him out, everyone said... what a beautiful boy! Indeed, he was born ON and very alert. After Mattie was born, I got to touch his foot with my hand (as my arms were strapped down) and see him first, but then Mattie was quickly whisked away to the nursery for testing. I remained on the operating table, for the tumor to be removed and analyzed. 

Quote of the day: A dog wags his tail with his heart. ~ Martin Buxbaum

Boo! While Sunny was in physical therapy, Halloween was approaching. His therapist dressed him up as a firefighter and snapped this photo! In my opinion, Sunny had the best smile. Just seeing his sweet face, brought me happiness. As he exuded pure and honest love and innocence. 

I spent the day, when not caregiving, digging out of my dad's health insurance claims and other accounts. I went through three years worth of statements as I am trying to figure out exactly what his health insurance covers. My mom had three files for this one insurer, and I had to organize all of them into one file and put things in chronological order. I couldn't even calculate how much they contribute per year because the state of things was in such a disarray. 

This afternoon, I picked my dad up early from his memory care center, to take him to his annual pacemaker check. This check is fascinating and super easy. It is always performed by a tech from the pacemaker manufacturer. The device that reads the pacemaker, looks like a computer mouse, that is placed on top of the pacemaker. Within seconds all sorts of data can be downloaded from the pacemaker to a computer and if needed the tech can tweak the pacemaker to make it more efficient for the patient. 

The tech was telling me today that prior to COVID, patients literally came into the office every three months for a pacemaker check. Then when COVID took over our lives, all pacemaker monitoring occurred remotely. Believe it or not, my dad's pacemaker is monitored through an app on my phone. This app pushes data to the pacemaker company and if there any anomaly, the company contacts me. In addition, every three months, a physician reports the remote reports and then sends them to me by email. Truly remarkable technology. 

My dad has a pacemaker (that looks like this), which helps to keep his heart beating at 60 to 100 beats per minute. Prior to having the pacemaker, my dad's heart rate would drop below 60, even when doing exercise. The pacemaker sends electrical pulses to his heart to keep it at a normal rate and rhythm. It also helps his heart chambers beat in sync so his heart can pump blood more efficiently to his body. I learned that either you have a defibrillator (with a pacemaker) or just a pacemaker. The defibrillator is for people with elevated heart rates, which is not my dad. 

We learned about the history of pacemakers today and how they were once external devices. In addition, they did not have a long life span initially. So patients had to get a new device every three months. Now the devices are small, implanted under the skin, and have a battery life of at least ten years. Though my dad asked the same question over and over, he was intrigued by the process today and the tech was great with him. 

Earlier in the day, my mom's physical therapist came to the house. This therapist works with both of my parents. The therapist commented on how he has seen a decline in my dad over the last four months. Again, this does not surprise me, but I do feel it validates my own feelings and observations. My dad is out of it more, would sleep the entire day away if allowed, is eating less, he is having more bathroom accidents and truthfully it is a very humbling experience to live in my house. Caregiving is not for the meek, and that is only a portion of the heartache I face and manage day in and day out. 

Sunday, March 31, 2024

Sunday, March 31, 2024

Tonight's picture was taken on Easter of 2009. We were in the hospital and friends from Mattie's school came that day and hosted an Easter egg hunt for Mattie in the pediatric unit hallways. They knew Mattie did not like candy, so they filled the eggs with all sort of toys. One friend pushed Mattie in his wheelchair and the other encouraged and cheered as he pointed and found the hidden eggs! This may not sound like a big deal, but when stuck in a hospital, friends coming to do such an activity felt like we won the lottery. I will never forget all the many acts of kindness we received throughout Mattie's journey. 

Quote of the day: What’s one thing that we have in our lives that we can depend on? A dog or a cat loving us unconditionally, every day, very faithfully. ~ Jon Katz

This afternoon, I took my parents out for Easter lunch. Each Sunday we dine at the same restaurant and have gotten to know our server and the managers very well. This restaurant has a tradition of having an Easter Bunny greet guests and take photos. This is something I tried to do with Mattie over the years. My mom snapped this photo of me today. 

Typically I would cook holiday meals at home and invite over friends if I was in town. This year, I am literally going through the motions of living day to day. Celebrating Easter, was not on my mind or in my heart. 

Easter 2006! Different restaurant, but part of the same restaurant group! Mattie did not know what to make out of that big bunny. At first he was a bit scared. But once I explained that this was a friendly bunny, who was there to wish him a Happy Easter..... Mattie then agreed to take a photo. 

Since I love food, this is my one highlight in my life, that still hasn't changed. I started with this lovely spring salad that had a lemon basil vinaigrette. 

Then we all had ham, with string beans and au gratin potatoes. This ham was fantastic. Clearly a farm raised ham, so tender and juicy. A spring treat for sure. 

My mom and I split a Tres Leches. Basically a sponge cake soaked in three different types of milk. It was light and delicious. 

Eating with my parents is an experience. Gone are the days where we could sit and chat. Given my dad's dementia, he can no long track or engage in conversation. So literally he just sits there, looking hollow, or he eats, or you will find his head down and sleeping at the table. Truly if I really let all of this absorb into my head, I would be so depressed, I couldn't function. 

Meanwhile, my mom is glued to her phone. Not unlike a teenager. She can get lost in emails and Facebook. I do not like such distractions at the table or while trying to eat and have family time. But I have given up on this issue. If my mom is bored or disinterested in the conversation around her, out comes the phone. 

Since today was a nicer weather day, temperature wise, I decided to tackle reattaching the garden hoses to the water spigots and then going inside the house and open up the shut off valves. I watched the plumber winterize our hose bibs in the Fall, so I tried to reverse the process today. Remember I have NEVER done this before. Not here or anywhere else. So dealing with anything for the first time is always difficult because I never know if what I am doing is correct. 

The hard part was reattaching the houses to the water spigots. I thought it would be easy to do. Just simply insert the hose and turn it appropriately until was secure. Forget it! I had to locate wrenches and worked on it for an hour until I finally got all three hoses reattached. Truthfully I was ready to give up. But I took some deep breaths and figured that they were once attached, so there should be no reason why I couldn't get this to work. I was correct! One thing I am, and that is persistent. 

Turning on the shut off valves inside the house was easy, I just got scared as I heard water running through the walls. Needless to say, I have checked and rechecked to make sure nothing is leaking. So I would say, I think I accomplished another task I never thought I would be able to do. 

Out of the blue today, I heard from someone I used to work with on the Washington, DC licensure board. Remember I held that position for 15 years. This staff member wrote to wish me a happy Easter. In her message (mind you she has no idea what I am dealing with), she wanted me to know that I am one of the strongest women she knows, with great integrity, who helped her during one of her darkest times. She has never forgotten this and wanted to reach out today to remind me. Honestly this message meant the world to me, because what she reminded me is that indeed, I carry myself with the utmost of honesty, integrity, and freely share my love and support to those I care about. Her message was my unexpected Easter gift.