Saturday, August 3, 2024

Saturday, August 3, 2024

Tonight's picture was taken in August of 2002. Mattie was four months old and my parents were visiting. Mattie was a challenging baby, in the sense that he was always on, rarely napped, and sleeping through the night was close to impossible. Though I was recovering from a c-section and a new mom, I feel like I got up to speed understanding the beauty and needs of Mattie. 

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

This morning, I just couldn't get out of bed. I stayed there until 8am. I could do this because my dad's physical therapist, who comes on Saturday, is away on vacation. I truly believe three years of daily caregiving for two people and the heartache associated with Peter's abandonment have wiped me out physically and emotionally. 

After I got myself together, I went downstairs to prep breakfast, and then to vacuum, clean the counters, and clean our downstairs bathroom (which my dad uses daily). When I was just about to go back upstairs to get my dad up and start his morning routine, I got a text message from my neighbor. She wanted to bring something over to me as a post birthday present. Is this chocolate raspberry cake beautiful?

Literally my anxiety rose, as I already slept later and anything that further derails my schedule getting my dad moving, isn't good. Then I thought to myself..... NO, just stop it! I deserve a moment to have a conversation with a neighbor. It did not last long because my mom came down shortly after and her presence changed the demeanor of the conversation. 

My mom was lamenting that I won't let her drive and so forth. I was in no mood to entertain this what so ever, and told her she can hardly balance and walk, there is not way she is going behind the wheel of a car. It isn't safe for her or other drivers, and I moved along with our chat. NO with me means NO, and you aren't going to change my mind EVER, when I finally get to that point. 

In our morning chat together, my mom and neighbor started talking about how things happen and sometimes life isn't fair. Again, I am in no mood for trite conversations and reminded both of them, I know full well that life isn't fair. Mattie got cancer, Mattie died, I have to live a life without my child, I am the full time caregiver to both of my parents (who have significant needs), I manage a house that needs a team of ten people to run it, and my husband of 36 years up and abandoned me without so much as a care about my wellbeing. So YES I know darn well that LIFE ISN'T FAIR. 

My plumber is coming over at 6pm today, to help me learn how to flush out the sump pump, which apparently I need to do every three months. Since he is coming right around dinner time, I took my parents out for a late lunch. Because I started the day later, I did not give my dad much to eat because if I do, he can't eat for many hours later. In any case, he went to the restaurant, with a fairly empty stomach. Once we got to the table, he was making faces! He had to go to the bathroom. Of course he did not make it in time. So it required a full change of him and thankfully I travel with garbage bags, gloves, wipes, depends, and clothes. There was no explanation for this accident. We finally got back to the table and less than 15 minutes later, he had to go right back to the bathroom. This time, it was even worse. Explosive, and landed over me, my feet, shoes, his legs, his hands, OVERWHELMING. The more I tell him not to move, the more he moves, which means everything needs to get cleaned. Truthfully, all I can say is life is way too much and most unkind.

Friday, August 2, 2024

Friday, August 2, 2024

Tonight's picture was taken in August of 2003. Mattie was a year old. This was Mattie's second trip to Los Angeles. That day we took him to the LA Zoo. Mattie loved adventure and for the most part was a great traveler. He took in his environment and was fascinated by animals. I loved seeing the world through Mattie's eyes. 

Quote of the day: The cure for a broken heart is simple, my lady. A hot bath and a good night’s sleep. ~ Margaret George

Tonight, I feel absolutely overwhelmed. So on the edge that I landed up screaming my head off. It is just non-stop issues, problems, and things that I need to be fixed and addressed. There is one of me that is fully functioning in my house and in addition to managing everything, I care for two people who need constant attention. Later this afternoon, I was on the phone with our alarm company for almost two hours. Was the issue resolved? NO! So to add to my weekend, I need to have another remote call with these folks. Apparently they aren't charging me for this tech call, because the problem is on their end. Here's the funny part! The tech thanked me by saying, "you were very cooperative while I was explaining and setting up the things for you and I truly appreciate it. I have FEW customers over chat who stay cool and calm, and you were one of them." 

So I have the alarm company on Sunday and our plumber tomorrow. He is coming over to show me how to flush out the sump pump. Apparently it needs this every three months, and hopefully he will teach me, so I don't need his services every few months. Truthfully who ever thought home ownership was a great idea, needs to talk with me. It is over rated and stressful, especially when you are managing it alone. By the time I am finished, I will know how to operate everything in this house by myself. 

Overall however, I am very angry. I am angry at my life, I am angry at Peter's poor and cruel treatment of me, I am angry that I am picking up urine and poop all day long, and my list goes on and on. When I get like this, what I have to do is go outside. I watered plants, weeded, and tried to reset. It was in the dark, but it was what I had to do. I have yet to understand how I manage to exist, and some day when you hear my story, you will most likely understand the depths of the craziness I face. 

Thursday, August 1, 2024

Thursday, August 1, 2024

Tonight's picture was taken in May of 2003. Mattie was a year old. Next to me was my dissertation chair. We posed for this photo at my graduation party, which was held at a hotel near Capitol Hill. I assure you trying to collect data and write a dissertation, while being a NEW mom was a show. The stress was overwhelming and there were times I just did not think I had the energy to survive and graduate. Back then I thought that was the toughest thing I ever had to deal with, now I look back and say...... that was NOTHING! But perhaps it gave me the discipline to endure, to research, and to leave no stone unturned. 

Quote of the day: When we miss someone often, what we really miss is the part of us that with this someone awakens. ~ Luigina Sgarro

Sometimes I wonder, do people read this blog just to see if I am alive? That may sound like a funny question, but truthfully if I were you and tuning in, I would have to ask myself.... why do I keep on reading? Certainly the answer could be that you care about me. But what if you don't know me very well, what keeps you reading? After all, my postings are not necessarily upbeat. But perhaps that is the point. Social media is a joke, and what gets 'likes' is typically happy topics, the best photos, and the most outrageous moments. Not necessarily pain, sadness, and the most challenging part of life. Yet life is filled with challenges, life is filled with depressing times, and life is filled with moments where you just don't know how you are going to get through the day. I have NOT cornered the market in this department, nor do I claim to, but one thing you will typically get from me is the reality. I suppose through my reality, you also learn how one can survive the impossible. My impossible has been Mattie being diagnosed with cancer, Mattie dying, life without Mattie, caregiving for both of my parents three years straight without a break, and now abandonment from my husband after 36 years together. My plate is FULL and I have had just about enough of surprises and forced milestones where I have to re-invent myself. 

Any one of the issues I am dealing with could be developed into a book, but my latest nightmare, is so overwhelming that one day when my story is told, many will say.... this is just so crazy, it sounds more like a plot for a movie. Indeed, and I wish this wasn't the case. I will leave it at that tonight, because I am tired and can only hope tomorrow is a better day. 

Wednesday, July 31, 2024

Wednesday, July 31, 2024

Tonight's picture was taken in July of 2006. Mattie was four years old. That weekend, we took Mattie for a walk at Scott's Run in Northern Virginia. Mattie loved going to this park, and because of its heavily wooded nature, it stayed cool even in the summer months. I learned to love being outdoors thanks to Mattie. I can't tell you how many nature trails we traversed. Of course, I have no sense of direction, so my trail days are over, as I heavily relied on Peter to navigate, so that I could enjoy the beauty all around us. I just love this photo and seeing Mattie's enjoyment of nature. 

Quote of the day: I will never love another. Not like I loved you. I just don’t have the love for it again. ~ Atticus

It was another busy day. I got up at 5:15am, because I had a chimney professional coming over at 8am. In order to get myself ready, chores done, breakfast made, and my dad showered, it takes a lot of advanced planning in order to manage a visitor into our home. I am so glad I changed our chimney service provider, as the last company wasn't as knowledgeable, did not take the time to explain issues or give me a tutorial on how to turn on our gas fireplaces. Why on earth can't it be as easy as flipping a switch? One of our fireplaces requires multiple steps and lighting a pilot light in order to get it to work. I would never have figured it out without Kenny's help. For my local readers, if you are looking for a wonderful and competent chimney and fireplace specialist, I highly recommend Genesis Chimney Services. In addition, I learned that Kenny is very philanthropic, wanted to learn about Mattie Miracle and is interested in a sponsorship. He is our chimney angel for sure.

Later this morning I got a call from Amgen. After a three month nightmare of trying to locate my $1,500 co-pay assistance for Prolia, I think I finally may have resolved the problem. It wouldn't have been without my Amgen Angel, who is based out of Pittsburgh. I got connected to John at the end of June, after practically losing it on the telephone. I was tired of the run around and demanded a supervisor. In came John! John has been championing my case for a month now. I believe a check will be coming to me in a week. I would like to note that I just don't complain, I also write letters when people go above and upon to assist me. Today, I wrote just such a letter to John's boss! So TWO ANGELS IN ONE DAY! I view this as a blessing and I take them when I get them. 

 

This evening, I came home to a package on my doorstep. My friend Colleen, who I went to graduate school with and she was also a bridesmaid in my wedding party sent me this beautiful box of chocolates for my birthday. I am deeply grateful to all my friends who are trying hard to remind me that I matter within their lives. I am thankful to all of you. 

Tuesday, July 30, 2024

Tuesday, July 30, 2024 -Mattie died 774 weeks ago today. 

Tonight's picture was taken in July of 2007. Mattie was five years old and that week we took him to Boston to visit my in-laws. Mattie's cousins came over to visit and they decided to take out this sunfish boat that was kept in the shed. The kids decided to wash it and play in and around it. Of course this was right up Mattie's alley because he was enamored with boats. Mattie's wish was to one day own a real boat of his own, which was why I always called him Captain Mattie. 

Quote of the day: The shattering of a heart when being broken is the loudest quiet ever. ~ Carroll Bryant

Every morning, the first thing I do is make the bed, then open the door to find Indie greeting me. Naturally she wants food immediately. After managing Indie, I make tea. This morning's tea came from Cheryl (who is a major support to me), and what I love about the tea is it's name... Mrs. Hughes. Any Downton Abbey fan will know the significance of this name! Having been a Downton Abbey fan for years, this tea brought me a moment of happiness while getting myself ready for the day. 

I have my tea each day in this large mug. The mug came from Curacao and Peter bought it for me during one of our cruises. Dushi is a Papiamento word that means "sweetheart."

This photo popped up in my in-box today! Rather ironic given the tea I was drinking this morning. On this day in 2019, while in Boston, we went with Peter's parents to the Downton Abbey exhibit. It was a special event for me given my connection to this show. 

It is hard to believe that this photo wasn't taken that long ago, and yet my life looked thoroughly different. If anyone would have told me that four years later Peter was going to leave me, I would have laughed. Laughed because it is STILL too ridiculous to believe.

No day is ever calm for me. On Sunday, we went out to brunch and sat outside. Something I rarely do, mainly because my parents don't like it and my dad gets easily bitten by bugs. On Sunday, while finishing up dessert, my dad was touching his left upper lip. It appeared like there was a red mark on it. Immediately his lip started to swell. While at the restaurant, I put ice on his lip. That seemed to help. But today, a huge hive formed and the whole left side of his face was beginning to swell. A typical but scary reaction.

My dad's doctor is away on vacation, so I called the on-call doctor. I spoke to her office staff and it took her over four hours to respond. I was LESS than thrilled with her. While waiting for her, I did text message my dad's doctor and even though he is out of the country, he called in a steroid. So I started my dad on this medication, and I am hoping that things improve quickly as he is scratching the area and seems even more out of it than usual. 

Monday, July 29, 2024

Monday, July 29, 2024

Tonight's picture was taken in July of 2007. Mattie was attending his preschool classmate's birthday party! It was a gymnastic party and Mattie was one of the few boys. That did not bother Mattie whatsoever. He had a great time with friends, running around, and was happy to be included in the festivities!

Quote of the day: Come back! Even as a shadow, even as a dream. ~ Euripides

I did several chores today and then mid-day took my mom to Starbuck's. It was crowded today and at one point an older lady came to sit down near us. She was lonely and started talking. She was telling me about the veins in her legs, her knee pains, and then told me about the loss of her grandson (at the age of 20). I shared nothing about myself. Instead I just listened to her and commented on what she was saying. What was running through my mind was.... there but for the grace of God go I! With age, not being married and not having Mattie, I can see my life looking a lot like this woman's. In fact, I have befriended other older ladies at Starbuck's and have helped them on various occasions. One of them is adorable and she always tells me I am so nice. If they only knew the chaos inside my head. How I haven't snapped is an amazement!

While at Starbuck's I continued reading the book I started a while ago about ambiguous grief. The grief we experience when the person we love hasn't died, but is still alive and estranged from us. The author mentioned the comment..... You are as sick as your secrets. This is an adage used in Alcoholics Anonymous. Basically it means that a secret kept in the dark grows and becomes more harmful, but once it is exposed to light or released, its power is lost. I think this is a brilliant statement and it applies to ANY secret, not just to addiction.   

When I came home today, I was surprised by cards and wonderful loose leaf tea. I am a big tea drinker, and it is the one nice perk (in addition to chocolate) that I look forward to each day. 

I am so grateful to have the best of friends who look out for me through cards, gifts, food, and gift cards! Not sure where I would be without all of you.

My friend Christine is visiting Seattle. She sent me this glorious photo today! Sunflowers are the quintessential symbol of Team Mattie. They will always remind me of the strong community that supported me through the impossible.... Mattie's diagnosis and death. This community is once again activated to help me manage through each day I face now without Peter. 

Sunday, July 28, 2024

Sunday, July 28, 2024

Tonight's picture was taken in July of 2009. Mattie was home between hospital stays and wanted to be outside on our deck. Mattie could not walk independently, so we would pick him up and transport him around our home. Mattie absolutely LOVED his sandbox. He kept all sorts of things in his box and would generate creative stories while playing. 

Quote of the day: I wanted love to conquer all. But love can't conquer anything. ~ David Levithan

Last night, I stayed up until 1am to proof read a research paper. Mattie Miracle is participating in a study and I promised the team I would give feedback by the end of the week. But the week came and went, and I did not have a minute to myself to think. So I knew in order to get this done, I had to get my parents to bed and then read and work. It was the only way, but it is hard because by 10pm, I am ready to go to bed. I am chronically exhausted, both physically, mentally and emotionally. 

This was a selfie taken at yesterday's gathering. 

Today we ate brunch outside. Cheryl, our favorite server at this restaurant was sick. So we elected to dine with another great server, who was stationed outside. Typically my parents refuse to eat outside, but I have learned it is important to have the RIGHT server for all our needs. For about five minutes, ONLY five, I was able to take in the greenery and feel calm enough, so that I did not want to jump out of my skin. That calm feeling did not last long. Of course, no meal is ever complete without taking my dad to the bathroom and doing a complete change and clean up job. Each day, I wonder to myself...... what on earth did I do to get routinely punished, always dealing with a crisis, trauma, and loss.