Saturday, June 22, 2024

Saturday, June 22, 2024

Tonight's picture was taken in June of 2009. Mattie was recovering from his lung surgery and we learned to do creative things to get Mattie to use his lungs. A friend gave him these straw goggles and as you can see he tried them on and started drinking. Now if we gave Mattie a spirometer, I can assure you he would not have been eager to do his exercises. But with a little bit of creativity, Mattie signed on. That is one of the many things Mattie taught me... to think outside the box. There is always more than one way to accomplish something, as long as you have tenacity and patience. 

Quote of the day: Love gave someone the power to break you. I'd been broken beyond repair. ~ Stephanie Meyer

I have come to the conclusion in my house that ordering gadgets recommended to help my parents, just don't work. For example, my mom's rehab doctor recommended she try a TENS machine (A transcutaneous electrical nerve stimulator (TENS) sends electrical pulses through the skin to start your body's own pain killers. The electrical pulses can release endorphins and other substances to stop pain signals in the brain) to help with nerve/muscle pain in her neck and back. Forget it! Today my dad's physical therapist worked with my mom to try to get this machine positioned correctly to bring her relief. After an hour working on this, I had just about enough. My mom was fixated on how the electrodes felt, kept saying she did not feel anything and that it wasn't working for her. Truthfully the set up and listening to her complain was enough for both me and the therapist. So I packaged the machine up and it is going right back. Same with the WaterPik, which the hygienist recommended for my dad. She has to be kidding! The jet spray is way too strong for my dad's teeth and gums and in the process, I felt like I received a second shower. I am done with suggestions! My gut feeling said it wasn't going to work, given the personalities I am dealing with. I need to remember to follow my instincts, because I know my parents better than the doctors. 

I don't know how I did it, but today I woke up with terrible back and hip pain. The hip pain started right after the breast MRI. Somehow I twisted myself in a funny way getting off the scanner, after being faced down for 40 minutes. The pain is so intense, it is almost impossible to move. Of course there is no rest or down time, so I have to move through this pain. I wouldn't be able to function without Advil. I do think that the incredible stress over my marriage has taken a debilitating toll on me. I do not write about what is going on regarding my marriage, but trust me it isn't your ordinary story. Which is why I am emotionally devastated. 

The three things I am grateful for:

1. Advil! I couldn't function without it.
2. Air conditioning. It is so incredibly hot that I do not know how one can function without being in a cool place with these temperatures. 
3. The cardinals in my backyard. They were all around me tonight as I was watering plants. Another sign that Mattie is with me and watching everything that is happening in my life. I wish he were alive, we would be allies until the end.

Friday, June 21, 2024

Friday, June 21, 2024

Tonight's picture was taken in June of 2009. Mattie was in the outpatient clinic, and next to him was his buddy, Maya. Maya and Mattie were the same age. They met early on in Mattie's treatment journey, at this same art therapy table. During that first encounter a bunch of kids were all working on projects and Maya began to talk about how she didn't like needles and being poked. Typically Mattie would remain quiet in group settings, but not with Maya. He immediately piped up and agreed and shared his feelings. I was stunned. That was how their beautiful friendship began! In this particular photo, Mattie and Maya created a little theatre out of a box and art materials. Not only did they create the stage, but then provided a performance for everyone in clinic. Maya brought out the best in Mattie and she was his only (by choice!) same aged friend at the hospital. 

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

Last night after I got my parents to bed, I walked into my bedroom and it almost seemed like a light was on! But there was NO light on. It was a big Mattie Moon, shining in on me. I can't tell you what a miraculous sighting this was for me. I had a tough day, felt very distraught and with great despair, and then I saw this! A reminder that Mattie is with me, is watching over the nightmare I am living, and is shining directly into my room to let me know I am loved. 

My days are incredibly long here. I get up anywhere between 6 and 6:30am every day for the most part. There are no breaks during the day and then I do not get into my bedroom until after 10pm. A terribly long day. Once I am in my room, I try to block out the world, I turn on the TV, watch comedy shows, and try to regroup. In my bedroom, I am surrounded by photographs Peter took over the years. Photos of places we shared together. Now of course I look at all these photos and wonder, what on earth was I missing about Peter!? I consider myself astute regarding my ability to read people and sensitive to the needs of others around me, which is why so much of what is going on right now is a total shock. 

I received a text message from one of my dad's caregivers in Los Angeles. I absolutely LOVED Zhaine. She and I are the same age, she is in constant motion like me, and I am quite sure between her and I, there isn't anything we couldn't do together caregiving wise. She took excellent care of my dad. Honestly I wish this caregiving company was here in Virginia. Finding quality, reliable, and trustworthy caregivers is not easy, but I never worried leaving my parents in Zhaine's care. In any case, Zhaine wrote to me today and shared this photo memory. Zhaine came into our lives in 2020, after my dad's two rounds of hospitalization for sepsis and an impacted colon. My dad had lost 50 pounds back then and was very weak. It is amazing that with good care, a better diet, and an exercise routine, my dad looks better now than he did four years ago! 


Three things I am grateful for:

1. Friends that stay connected and reach out to me. 
2. The MOON! A constant reminder of my Mattie. 
3. My copper bullet hoses! They are a lifesaver, as I am watering my garden daily. If I had to manage those bulky, heavy hoses that kink, I am sure I would be less motivated to water and be in my garden. I have DAILY garden time. It is my therapy of choice. 

Thursday, June 20, 2024

Thursday, June 20, 2024

Tonight's picture was taken in June of 2009. Mattie was in the outpatient clinic and was having a wheelchair race with one of his art therapists, Jessie. I remember these moments like they were yesterday. I will always be grateful to the amazing women at the hospital who helped us make the impossible more bearable! 

Quote of the day: The heart is heaviest when it’s empty and lightest when it’s full. ~ Helen Scott Taylor

Today was NOT a good day. I have felt overwhelmed on every level. In my home, I have to be the jack of all trades, meet everyone's needs, and be able to have solutions for everything! It is beyond exhausting. Some days I can take it better than others, today wasn't such a day. I can't possibly describe my level of despair.

When I got home, after taking my dad to the podiatrist and then both of them out to lunch, I let Indie outside on our porch. She demands porch time now, and howls until I open the door. Normally she stays on the porch, but I got distracted with my dad's bathroom routine, my mom's request about a phone call, and sure enough, when I went to look for Indie, she was gone! I literally called her, checked under every tree and bush for 45 minutes. I even went in the crawl space under the house. It is hot outside and the stress of all of this, made me lose my voice and get a horrible sore throat. I text messaged my neighbors too, in case she migrated onto their properties. But what I have learned is I am alone and I have to manage every crisis alone. It is quite a bitter pill to swallow. 

An hour of searching and then my mom spotted Indie! But Indie started running away as we tried to approach her. Truly she wore me out to no end. This evening I purchased a cat harness and a retractable leash. If she wants to go out, that will be her only option as there is NO bloody way I am going to endure this fright again! All I say is God give me strength because there are days I do not think I am going to make it. 

Everyone in my house is miserable. My mom questions why I ever married Peter? Now 35 years later, it is a hard question to answer. I never imagined I would have to answer such a question or that I would be so dispensable. But what I do know is the whole thing is hurtful. One of my neighbor's wrote to me today and said that..... my situation (as she has watched it unfold) is so horrific that NO ONE knows how to help. All people can try to do is be there, provide support, and to let me know I am loved. A beautiful statement!

The highlight of my day was receiving a letter and package in the mail from my friend, Phyllis in Los Angeles. Phyllis sent me this angel to watch over me and give me strength. I really need such an angel, because I am at my wit's end and feeling overwhelmed, very unhappy, and stressed out. 

As I told Phyllis, I wish she lived closer. We spent many holidays together when we were in Los Angeles and we were a great team in the kitchen, as clean up is never easy after a big meal, but having a trusty friend, makes everything easier. 

Three things I am grateful for:

1. Finding Indie!
2. Having an angel to watch over me. 
3. Surviving today. 

Wednesday, June 19, 2024

Wednesday, June 19, 2024

Tonight's picture was taken in June of 2009. I will never forget this moment in time. My good friend Christine hosted a second birthday party for Mattie in her backyard. Mattie's official birthday was celebrated in the hospital, but this second party was a special event in which Mattie's close friends and many creepy crawlers from Reptiles Alive were present. As you can see, Mattie was fascinated by a snake being introduced to him by the naturalist. I assure you, if this were me, I would have been screaming my head off! I am deathly afraid of snakes. When looking at this snapshot in time, we were excited that Mattie's treatment was coming to an end, and we had great hopes that it held back the cancer enough for him to rehabilitate. Unfortunately two months after this photo was taken we realized Mattie's prognosis was terminal. I am very grateful that Christine hosted this party and provided these moments of happiness and better memories. 

Quote of the day: You don’t die from a broken heart. You only wish you did. ~ Unknown

Given that today was a National holiday, I had my dad home with us. I was determined to get some things done, and honestly if I made a list of all the things I accomplish in a given day, it would be ridiculous. I managed bills, worked with my mom's CPA regarding her taxes, and started putting together Foundation files for our CPA who always works on our annual financial review at this time of year. Of course the thing is all my adult life, I haven't been the one managing bills, budgets, and taxes. Therefore, when I tell you that my learning curve has been steep, I am not kidding. 

This evening I went to my weekly therapy session. Most days I really question why I go! But today I got there early. I sat in the parking lot, in the shade, with the windows down. I started corresponding to the woman I met in the on-line support group months ago. Remember she and I communicate daily. She lives in England and therefore we operate on very different time schedules. What I noticed was the ten minutes of sitting still in the car, listening to birds and breezes through the trees was very therapeutic. No one was talking at me or making demands. It was a moment of peace, which grounded me by the time I got into the session. I have to remember this, because without taking this ten minute pause, I am wound up like a top when I enter the therapy room. 

Any case, typically I do not acknowledge my achievements in these sessions, but given all that I have done this week which was way beyond my comfort zone, I was able to face the reality that I have the ability to figure things out for myself and get a lot done in the process. This may not sound earth shattering to many of you reading this, but to me, I couldn't deny the facts.

Three things I am grateful for:

1. The wonders of wild life all around me! 
2. Sitting still for a moment and taking deep breaths. 
3. The antics of Indie, the cat. Indie's new insistence is to have patio time. She wants to go outside, sit on Sunny's portion of the couch and will howl until I let her out. Trust me she is persistent!!! Sometimes she makes me laugh!

Tuesday, June 18, 2024

Tuesday, June 18, 2024 -- Mattie died 768 weeks ago today. 

Tonight's picture was taken in June of 2008. Mattie was six years old. On the weekends it wasn't unusual for him and Peter to canoe on the Potomac River. Occasionally, like the time in this photo, I would come along. Don't you just love that big smile!? Mattie loved being on the water, exploring, checking out nature, and if you asked him, he would tell you he was saving up his money to buy a REAL boat. Which was why I nicknamed him, Captain Mattie. 

Quote of the day: The whole world can become the enemy when you lose what you love. ~ Kristina McMorris

Amen to tonight's quote! It resonates with me. Life as I have known it for the last 35 years has ended. It has dissolved without my knowledge or permission. It is extremely disorienting and produces a range of emotions. Some days I can handle the isolation, the abandonment, and pain better than others. 

This morning, I drove my parents to the city to go to the dentist. I have been going to this dentist since I was in my twenties. Though my dental practice is in the city and parking is a show, it is worth the trip. As soon as you enter the dental practice floor, there is a feeling of peace and everyone who works there is super professional. 

Today, there was an issue with the hygienist scheduled to work with my dad. They switched the person normally assigned to work with us. I pitched a fit because to me not all hygienists are created equal. It has to be the right personality fit. My hygienist, Annie, was going to work with my dad today, and they wanted to assign my mom to a new person. I said no! It is important for my mom to connect with the same person. So I gave her Annie and my dad and I worked with Rachel. Turned out Rachel is extremely thorough and competent and she got stains off my dad's teeth, making his teeth whiter than I have seen them in years! So sometimes change is good. But overall, despite using an electric toothbrush on his teeth daily, I still have more work to do. His gums were bleeding and several of his teeth have "mobility." Literally remember when you had a loose tooth as a kid, well my dad has about three teeth like this! Naturally treating this problem in an aggressive fashion won't work for my dad. So we are taking a wait and see approach for now. 

They now want me to WaterPik his teeth, in addition to using the electric toothbrush! This adds another task to my already full morning routine! But I will do it. The staff apologized for the hygienist snafu, and they presented me with Starbuck's gift cards. Certainly I wasn't expecting this, but I absolutely appreciated the thoughtfulness. My dad's hygienist could not get over that I have devoted the last three years to caring for my parents full time. If she only knew my full story, I am sure she would be shocked. After all there is just so much I can tell someone at once. Child loss, full time caregiving for parents, and abandonment by one's husband. It is a heavy burden to carry.

Three things I am grateful for:

1. My dental practice and their kindness and professionalism. 
2. Frozen yogurt! After their dental visits, I took my parents for frozen yogurt. Something we all love. 
3. Imodium! I find that I now have to integrate this into my dad's weekly schedule. This morning, he had a major bathroom accident right after he ate breakfast (mind you I give him apples and bananas every morning to try to prevent these accidents.... it doesn't help). Thank goodness I wasn't driving to the city when this happened. Because I couldn't take a chance that this could happen again in the car or sitting in the dental chair, I elected to give him Imodium. 

Monday, June 17, 2024

Monday, June 17, 2024

Tonight's picture was taken in June of 2008. I snapped this photo because it was Mattie's last day of kindergarten. I thought that deserved to be captured and memorialized at the time. Little did I know how vital all of my picture taking was going to be. We never got another first or last day of school again. At that moment in time, the sky was the limit. Mattie had a good first year of school, made special friendships, and loved his school. It is still hard to believe that a month later, Mattie was diagnosed with cancer. Especially when he seemed like the picture of health! What this taught me quickly was NOTHING is guaranteed. 

Quote of the day: There is an ocean of silence between us… and I am drowning in it. ~ Ranata Suzuki

After dropping my dad off this morning at his memory care center, I came home to get my mom and take her to the city for her hair appointment. However, what I quickly deduced was that my dad snatched his cell phone and brought it to his day program! BIG problem. It is a problem because he is always playing with it and unless I keep track of it, he will lose it. At the memory center, if my dad took out the phone, I have no doubt another participant would inadvertently pick it up. Because I had to take my mom to the city, I couldn't go back to the center to retrieve the phone. So I emailed the staff and put them on alert. They immediately got him phone for me and locked it in the office. I learned a lesson today, that I have to double check what's on my dad before he leaves the house. For two years now, I had a routine and never had this issue. But I am juggling a lot and having to herd both of my parents this morning, meant that my attention was split. 

When we got to the salon, I sat while my mom had her hair done. I have no problem sitting and waiting. Unlike my mom. The salon staff know that I really can't get my own needs met because my mom doesn't like waiting for me. She has lost the art of self entertainment. In any case, I have know our stylist since I was in my twenties. She is aware of my current situation and challenges. When I watch what I manage with my parents, most people pause and ask me..... how do you do this day in and day out? I have no answers, other than I do, and I have done it for almost three years now without one day's break. Despite the difficulty of caregiving, it pales in comparison to what has happened with my marriage. That devastation has been all consuming and if I wasn't a strong person, I could see how this could destroy a person. 

My stylist said to me today, that I need to look in the mirror and see the awesome, strong, and incredible woman that I am. A woman she said who could hate life and world around her, but instead, I am loving, supportive, and constantly giving to others. I told her she sounded like my therapist. I hear what both of these women are saying, but that isn't my MO! I get no satisfaction, joy, or happiness from such self reflection. I know, this may not make sense to my readers. 

As I mentioned previously on the blog, I have been reading a book called Soul Broken. It is about people like myself who suffer from ambiguous grief. Grieving for a person who is still alive. Given the nature of the circus show that I manage each day, I can only read anything sporadically. However, while at the salon, I got in about thirty minutes of reading, between talking and helping my mom. One of today's passages was:

Just as sobriety can not be claimed from a place of denial, so, too, joy can not be claimed if you're still suffering in loss. So it is not enough to hope or wish to find joy again; instead, you'll need a commitment to your reality and to the action of creating it for yourself.

Finding joy! Now there is a word I just can't relate to. There are several words that have been removed from my lexicon since Mattie died. One is joy and the other that rubs me the wrong way is happiness. Therefore reading this passage today, though I get her sentiments and what she is trying to say, I do not think committing to find something I haven't had for decades makes sense now. I am not on a quest to find joy and happiness, and I think asking someone who is suffering, is in pain, is having trouble seeing a way forward, to commit to these amorphous and elusive concepts is not helpful. In fact, I think it sets one up for constant failure.  

What did resonant with me however, is her dialogue about cycling between external and internal hope. External hope defines who I was, who I have been for 35 years. A woman connected to her college sweetheart. This connection is a large part of my identity. It's hard to disengage with this identity, and what the author was writing about is that sometimes stepping back into the past and allowing ourselves to recognize that this was real and true does provide comfort. I 100% agree! It provides a pause from the constant chaos of having to face my current reality. It is impossible to sit in this new reality at times, a reality I did not choose to have, so I take snippets of insights along my daily journey in order to try to find a way forward. 

Three things I am grateful for:

1. People who know me, and remind me how special they feel I am. When in a down and dark place emotionally, some times these kind words are a life line. 
2. My garden. I spend time outside daily. When I am out there, I pause from the chaos in my life. I try to snuff out the pain, the constant worries about my future, and managing the many roles and responsibilities I juggle in any given day. 
3. My dad's memory care program. I honestly do not know what I would do without having these three days. It is hard enough managing my mom 24/7, but managing both of them at the same time isn't easy. 

Sunday, June 16, 2024

Sunday, June 16, 2024

Tonight's picture was taken in June of 2008. I will never forget that moment in time! It was Mattie's kindergarten end of year party. It was held at a local park. I volunteered to work the event. Any time the teacher wanted a volunteer, I was there! I wanted to spend as much time interacting with Mattie and sharing in his experiences. Thank goodness I did this, because there were NO second chances. This photo was of Mattie with his best buddies, Charlotte and Campbell. Here is the funny part about this! These three had plans to always be friends and to go to the same college together. Then a month later, Mattie was diagnosed with cancer.  

Quote of the day: One day you'll finally see, your biggest mistake was not loving me. ~ Nishan Panwar

When we moved to Washington, DC in 1993, I remember going to Home Depot and purchasing yellow lilies for our deck garden. We cultivated these lilies for decades. When Mattie was born, we noticed that these lilies opened up in their glory around Father's Day. Which is why I always call these lilies 'our Father's Day lilies.' I just can't wrap my head around the fact that I have now lost both Mattie and Peter. I look at these lilies and they are painful reminders of my devastation. This is my first Father's Day without Peter, and his loss signifies so much to me. One of which is a piece of Mattie has now been taken from me, because I viewed our marital bond as a union united to preserve Mattie's memory and legacy. Now I manage all of this alone and it's crushing. CRUSHING I TELL YOU. 

Last night I was watering the garden. Look who came to say hi! This was quite a big painted turtle and showed NO FEAR!

This morning, I had a card for my dad, a gift from Shutterfly, and two special cookies set up for my dad. One cookie said... #1 Dad and the other was a chocolate dipped chocolate chip cookie!

The happy camper! After he ate his breakfast, he opened up his gifts. He couldn't wait to eat one of the cookies! Cookies are the breakfast of champions!

My dad has never been into art. However, in his memory care program, there is a lot of arts and crafts. My dad does painting, drawing, coloring, and even clay. I snapped many photos of his artistic creations and made two placemats! One for him and the pink one for my mom. 

My dad was so touched by these gifts, as he is proud of his art work. He said to me today, that maybe he should have been an artist! 

More of my dad's creations! I used them to make a placemat for my mom. 

This is my father-in-law. I received this photo today of him opening up my card! I surprised him with two tomato plants and one basil plant on Friday. I knew these would be gifts he would love. I recall many summers visiting Boston, touring their gardens and as I went along, Don (my father-in-law) would be plucking tomatoes right off the vine and popping them in his mouth. He loves tomatoes that much. So I thought that would be the perfect gift. 

Three things to be thankful for:

1. Having parents who are alive and love me.
2. Having in-law who are alive and love me.
3. Advil! The tooth that was worked on this week is now bothering me. I am hoping the pain subsides because I truly do not need another root canal right now.