Saturday, November 5, 2022

Saturday, November 5, 2022

Tonight's picture was taken in November of 2008. Mattie was 4 months into treatment and by that time all of his psychosocial team knew he loved roaches. They helped Mattie print out giant roaches from the clinic's computers. As you can see Mattie was impish here and was thrilled to hold up this print out to show it to me. Mattie knew I strongly dislike bugs. I can't tell you what a life saver this art area was in the clinic. There was always something happening there which was why Mattie ironically never refused to go to the hospital. His art therapists and child life specialist made a horrible situation seem much more manageable. 

Quote of the day: Grief can destroy you — or focus you. You can decide a relationship was all for nothing if it had to end in death, and you alone. OR you can realize that every moment of it had more meaning than you dared to recognize at the time, so much meaning it scared you, so you just lived, just took for granted the love and laughter of each day, and didn't allow yourself to consider the sacredness of it. ~ Dean Koontz

I was listening to the radio yesterday and heard disturbing news. A person died right where we used to live in Washington, DC. It is unclear if the victim was shot there or that he walked there and died. All I know is this particular area was my stomping ground. I walked Sunny in this patch of grass daily! I just am so saddened to see what is happening to Washington, DC and the neighborhood I was so fond of. If interested, click here to see the article on this shooting. 

When I get up in the morning, I literally move from one task to the next, to the next, and so on. Because I have so much to accomplish, I can get rigid in my schedule and I don't like it interrupted. While making breakfast this morning (before running back upstairs to wake my dad and get him washed and dressed), Peter came inside from the backyard and told me to stop for two minutes and come outside. 

I admit, I was flustered, but I went. First of which the weather, even in the morning, felt just like spring. It made me feel good to be outside. But hanging on our fence was this green guy, a praying mantis. It was definitely worth the trip outside and if Peter did not pull me outside, I would have missed this moment. 

Later today we drove my parents to Rockville, Maryland to dine at a restaurant that we go to weekly. We make the drive because my dad gets along very well with one of the servers. But this is the kind of traffic we deal with every Friday and Saturday. It is very stressful, on top of our already stressful existence. 

When we got home, more boxes awaited us. The Fall Item Drive has been a solid success this year. Next week, I will start culling through boxes and organize them for deliveries to hospitals. 

Friday, November 4, 2022

Friday, November 4, 2022

Tonight's picture was taken in November of 2008. Mattie was home, recovering from his second limb salvaging surgery. This was a huge surgery that involved Mattie's right left, left arm, and left wrist. Therefore, we needed a hospital bed on our first floor as Mattie couldn't do stairs. Our living room looked like a hospital, but we were determined to do whatever it took to stabilize Mattie. As you can see, Patches was thrilled we were home and she spent a lot of time right next to Mattie. It was no wonder why I nicknamed Patches, "nurse Patches." I found whenever I was sick, she stayed by my side and she did the exact same thing with Mattie. 

Quote of the day: You don’t go around grieving all the time, but the grief is still there and always will be. ~ Nigella Lawson

Yesterday evening Peter lit a fire outside. It has been a glorious weather week and I know when we are stressed out having access to greenery and the outdoors is crucial. It helps to restore our sanity. 

An amazing sunset. I truly never paid attention to how special the light is in the Fall. It is a certain level of crispness in the air and in the lighting. I have no idea why I never noticed this before. But I do think with age, different things become important to us and more noteworthy. 

We are surrounded by trees. Which is very important to us. Seeing the sun shining on the autumn leaves captures Peter's and my attention. 

What is so funny about this photo is can you guess where Peter is? Ironically I never have to look too hard, I just have to find Indie, the cat. She is always glued to Peter, almost as loyal as a dog. She is always by his side. 

I got up at 6am in order to get my dad ready and get my mom out the door at 9am. I took her to my hand doctor, which was about a 30 minute commute each way. Thankfully we were going with the traffic this morning, making the commute to Maryland much smoother. My mom's hand has been bothering her since March. Now 8 months later, I finally was able to get her a doctor's appointment. Because her situation wasn't an emergency, we had to wait all these months. But she wasn't happy about it and has been in pain, with limited ability to use her hands. I prepped my mom that this doctor isn't touchy feely per se, but he is kind enough and HIGHLY competent. I know this because I saw him a few years ago when I dealt with a trigger finger. He diagnosed it and treated it on the spot, and the problem is much better now. The doctor is a New Yorker, and he went to Albany Medical School, a school close to where I went to college and several of my friends graduated from Albany Med. 

My mom LOVED the doctor and he was actually very chatty with us. I do find that doctors for the most part understand that I am there with my parents, and many make an effort to connect. When they do this, this captures my attention, because it tells me about their humanistic priorities. Long story short, my mom has tendonitis, and he gave her a cortisone short in the wrist area. Currently she is wearing a brace for the next ten days, but she is already feeling relief. Whenever I go with my mom to the doctor, there is a high level of anxiety. So I know in turn, I need to take over, manage all the logistics, and help to keep her calm. I do think on some level that I store this stress somewhere, and unfortunately the place is my head. I have had an intense migraine since Wednesday and it shows no sign of lightening up. 

Meanwhile, my dad started a higher dosage of Ritalin today, and I am hoping to see some sort of change in his energy level this weekend. Yesterday I was in a horrible mood, but today, I feel like I can manage. I get bouts of feeling overwhelmed and when in that state, it is hard to think things will get better. As I learned from Mattie's cancer diagnosis, I can only take it one day at a time. 

Thursday, November 3, 2022

Thursday, November 3, 2022

Tonight's picture was taken in November of 2003. Mattie was a year and half old and that weekend we took him to a local park in Virginia that had farm animals. As you can see, Mattie gravitated to animals. I absolutely love this photo of Mattie with this sheep. Almost like they were looking eye to eye and having a meeting of the minds. 

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

This morning my dad had a doctor's appointment. This doctor is following him every two weeks, now that he started Ritalin. I explained to the doctor that I see no visible changes in my dad's energy level since starting Ritalin (two weeks ago). So as of today the dosage level has been increased and I am hoping it makes a difference, as I know it doesn't work for every older adult. While in the appointment, I know the doctor doesn't like me answering questions for my dad. I try to keep myself under control, but I know whatever comes out of my dad's mouth will NOT be accurate. 

In fact, when the doctor asked my dad if he has more energy now, his response was YES! Honestly! He has no idea. Then the doctor asked him the usual stuff...... what year is it, what month is it, and whose the president? My dad answered these questions without a problem. But if you ask him what you just said to him or what he had for breakfast this morning, he will have no idea. I mean NONE! Frankly in my opinion, my dad can't function independently and his lack of energy makes it truly difficult for the rest of us to function outside the home. 

To the appointment I bought my dad's daily journal and some cognitive brain game books that I use with him. The doctor requested to see them during our last visit. The doctor looked at all the books and then requested that I add a "word of the day" to my dad's daily routine, as he feels learning new words and using one's brain in this way is vital. So the doctor started the routine by giving my dad a word for today. It was gobsmacker. He then explained that the word means, stunning, astonishing. A few minutes later he asked my dad what the word of the day was and what it meant. My dad did not remember the word or what it meant. None of this surprises me as I deal with this daily. It is very stressful working with someone who can't absorb or retain anything you say or what's happening around you. 

I appreciate the need to learn new words, but frankly I feel my dad gets very little out of the countless brain games I do with him daily. Peter jokes that the only one working hard on these games is me. As my dad can't do any of these puzzles and books by himself. So I guess what is the point of doing any of this? I am under no delusion that my dad will develop learning and memory strategies from our daily cognitive exercises. I would like it if he did, and that certainly would provide positive feedback for the energy I expend. But I do these things to keep a routine and structure to my dad's day. If I did not do what I do, he would be a vegetable in a chair all day long. 

The doctor assumed that my dad never went to college, because I have him doing a 5th grade reading comprehension book. My dad corrected him and said he has two master's degrees. That surprised the doctor! I have no idea why! If this doctor is used to working with people with Alzheimer's then he should understand why I chose a 5th grade reading comprehension book. Not because my dad can't read, but because he has trouble retaining content and processing it together. The lower the reading level, the less content that is thrown at the reader. If I know this, why doesn't the doctor? 

It was a glorious weather day today. When I got home later in the day, I could have done more work, but I decided to stop and take Sunny for a walk. I needed the fresh air, time to myself, and to walk at a normal pace. 

Yesterday I got another shot of Prolia, for bone loss. All I know is the shot triggered a terrible migraine and exhaustion. So much so, that yesterday I took a two hour nap during the day. Which is totally unheard of for me. If I stop moving during the day, you know I have a problem. 

On another note, it is wonderful to see flowers blooming in our backyard in November!

How do you like our Christmas cactus? It is very happy in its new home and it enjoyed outdoor time this summer. It is now inside for the winter but we have had this plant for over ten years and a few years old it broke in half. I thought it was going to die, but it has since filled in and looks healthier than ever. 

Wednesday, November 2, 2022

Wednesday, November 2, 2022

Tonight's picture was taken in November of 2004. Mattie was two and half years old and that day Peter's mom sent us a gift for Patches, our calico cat. However, guess who found the gift intriguing? Mattie of course! Eventually Patches did get the gift and Mattie even played with Patches using this gadget. As you squeezed the hand pump a fake mouse would pop out. It was a gift that provided enjoyment for two!

Quote of the day: Loss is like a wind, it either carries you to a new destination or it traps you in an ocean of stagnation. You must quickly learn how to navigate the sail, for stagnation is death. ~ Val Uchendu

Thirteen years ago today, Mattie Miracle became incorporated in the state of Virginia and became an official non-profit. So on this day, we celebrate Mattie Miracle's birthday! Happy 13th! It is amazing how far we have gotten and what we have accomplished over the years on a limited budget. As I always say, money doesn't solve problems, issues, or address needs. Committed people do! It is thanks to the incredible commitment of our supporters, we are able to make the Mattie Miracles possible. 

I was listening to the radio the other day, while getting dressed. Ironically even listening to the radio is something I took for granted when I wasn't a caregiver. Now I have little time for much. The radio host was talking about how people are attracted to certain songs. Have you ever wondered why a piece of music is your favorite? Have you ever given it any thought? Sure you may like the melody, you make like the lyrics, or you may even like who is singing the song. But research seems to indicate that we are attracted to certain songs because they evoke memories or capture a moment in time. When I heard this, I immediately said... of course, that makes sense. In fact, your favorite song may change depending upon what you are experiencing in that moment in time. 

When Mattie was in the hospital and we were dealing with another challenging day of treatment, a friend of mine sent me a song by Emerson Drive called Moments. I included the video of the song below. At the time, this was the perfect song for me and whenever I hear it, it reminds me of Mattie's cancer journey and though I felt helpless and stressed out, I knew I wasn't alone. We had a whole team of supporters out there rooting for us. Honestly if I wasn't going through this journey with Mattie, I am not quite sure I would get the true impact of this song. I can't tell you how many times I listened to that song that year and there after, and I turned to it during many overwhelming times. Therefore, I believe that the brain definitely encodes music as a component of our multifaceted memory of a moment or experience.

Why is that your favorite song?:

https://www.psychologytoday.com/us/blog/the-neurobiology-wellness/201901/why-is-your-favorite-song

Mr. Pumpkin has come down from our front yard now that Halloween is behind us, and today Peter put out Mr. Turkey! I saw neighbors walking by the house today and they were pointing and smiling. As the weather gets colder and grayer, I think anything that can bring a smile to someone's face is a good thing. 

Tuesday, November 1, 2022

Tuesday, November 1, 2022 -- Mattie died 683 weeks ago today. 

Tonight's picture was taken on Halloween of 2008. This was Mattie's second trick or treating adventure for the day. The first one was at the hospital. That evening we went to Zachary's home. Zachary and Mattie were inseparable friends and they bonded on the first day of preschool in 2005. Have you heard that in a  crisis you can really tell who your friends are? Well Zachary was that kind of friend. The boys went trick or treating with a group of Zachary's neighbors. The neighbors had little use for Mattie because he was walking gingerly as his arm was in a sling post-surgery. The neighbors told Zachary to ditch Mattie. Certainly I would have understood if he did. But instead, Zachary abandoned the neighbors and walked slowly with Mattie. An incredible decision for a six year old! After they collected all the treats, they went back to Zachary's house and they began sorting their collection and making trades. Mattie did not like chocolate and Zachary did not like the non-candy treats. So they were a match made in heaven. 

Quote of the day: There are three needs of the griever: To find the words for the loss, to say the words aloud, and to know that the words have been heard. ~ Victoria Alexander

Tonight's quote is spot on! I would say that Mattie's blog serves all three functions for me! It helps me put words to my forever loss, and through my writing, I feel as if I am expressing myself out loud, and of course thanks to my loyal readers, I know I am being heard. That is a big gift, because it is understandable why you read the blog when Mattie was alive and coping with cancer, but what inspires you to continue reading now? I am sure the answer differs for each of you. Whatever the answer is......  I THANK YOU for reading the blog over all these years. 

I have been writing  the blog nightly for 14 years! Fourteen years! Not 14 days, 14 weeks, or 14 months! Fourteen years is a major commitment and you might think that by the end of my day, I wouldn't have the energy or motivation to write. But writing can easily become part of your daily routine, not unlike brushing your teeth. I have done it for so long, I can't imagine a day without the blog. It is a way to keep me closer to Mattie, to keep his memory alive, to share his life with others, and of course to process my experiences and journey. As my life's lens is always influenced by Mattie's death. 

Since Mattie died, we haven't distributed candy to trick or treaters, until last night. Last year, though living at the house, we left candy at a box at the end of the driveway. Last night, was a very rainy Halloween. Therefore I made the decision to put candy on a table right outside our front door. I can't tell you how many children we saw last night. Probably 30-40 hit our doorstep and we saw the cutest costumes. My favorite was a little girl dressed as a sunflower. 

It maybe November, but the temperatures are in the 70s this week. We woke up to a heavy fog! It was quite a sight, one that I remember vividly when living in Foggy Bottom, in the District of Columbia. Foggy Bottom lived up to its name, as so many mornings were just that... foggy. 

My joke is we are running a warehouse! The boxes keep coming in and we are very grateful!

This afternoon, I had to go to our Foundation's post office. As I wanted to get stamps and mailing trays to help process our end of the year mass mailing. I did this with my parents in tow. After which, I took them out to eat. Going out with my parents is challenging on a good day, but this is something they love to do! In fact the first question out of my dad's mouth every morning when I wake him up is..... are we going out to eat?! I am quite sure most adult children wouldn't entertain this on a weekly basis, but add into it my dad's bathroom issues, and it would be a real deal breaker. My dad had to go to the bathroom, which he does like clock work right after he eats. I helped him to the bathroom, but the family bathroom was taken. He was howling about having to go, so instead I took him into the women's room. The stalls in the women's room are like a postage stamp, so stuffing both of us in there was a magic act. I did not get him in there soon enough and he pooped over himself, the floor, and me. It was not a good day to put it simply. 

Monday, October 31, 2022

Monday, October 31, 2022

Tonight's picture was taken on October 31 of 2008, this was our last Halloween with Mattie. Given Mattie was recovering from limb salvaging surgery on his right arm (which was in a sling), we had to find the right costume for him. Mattie's art therapists and child life specialist invited him to the clinic to pick a costume without other children around. It was very kind of them and when Mattie saw the mummy costume, he loved it. He liked how it covered his head and also you couldn't tell that his right arm was wrapped and not usable. In other words, he did not look like a kid with cancer. Mattie celebrated Halloween at the hospital by day and in the evening, we went to his friend Zachary's house and they went trick or treating together. Peter snapped this photo of Mattie and I as we were headed to the hospital to go trick or treating in all the admin offices. 

Quote of the day: We understand death only after it has placed its hands on someone we love. ~ Anne L. de Stael

This is Dawn! She is one of the servers we absolutely love. She used to work in Reston, VA, and now is in Rockville, MD. We travel one hour back and forth to visit with her weekly. I do this because she is great stimulation for my dad. Though we did not go out to eat today, Dawn sent me a photo of her at work in her Halloween costume. Dawn is a live wire, which is the irony of her choice of a nun's habit. 

I am very grateful to all the incredible servers in our lives. They understand what I am balancing and look out for all of us. Given my juggling act, going out isn't easy. In fact, I am sure most adult children wouldn't entertain this with their parents. Which is why knowing I have people like Dawn and Cheryl to rely on, makes a huge difference to my existence. It restores my hope in human nature.

More boxes came in today for the item drive. I am beyond grateful, as now we have to stock four Carts that serve families caring for children with cancer. I do not like disappointing any of the hospitals we serve and our supporters enable us to make these Mattie Miracles possible. 

My mother-in-law sent me a recipe for pumpkin pudding. My mom and I love pumpkin, as did Mattie. So I made the pudding tonight while prepping dinner. When I was a child, my grandma served me pudding in the three front glasses (the ones with gold colored leaves). 

It is raining this evening so our neighborhood gathering was cancelled. Which is just as well because after last year's experience, we vowed never to go to it again. We are working on putting a big bin of candy on the driveway and trying to keep it dry. Below you will find an excerpt from last year's Halloween blog. Some things stay with me so vividly, mostly because they evoke an emotion. I can still remember how dejected, depressed, and angry I felt after last year's gathering. Literally it made me feel like I did not belong in this community and shouldn't have moved. In Washington, DC people knew our story and several people even knew Mattie. Here in this new community, no one knows Mattie or our forever journey with loss. It was and is hard to leave behind Mattie memory keepers.

From October 31, 2021 Blog:

The HOA of the neighborhood sent out an email saying there would be a Halloween parade at 5pm and that neighbors should line the street and give out candy to kids in the parade. So sure enough Peter, Sunny, and I were outside with candy. But there was NO parade. I am not flexible about this kind of stuff. If you tell me to be somewhere and to participate, I expect there to be something to participate in! At 5:15pm, we then walked to a cul de sac in the neighborhood where a pizza party was going to take place before trick or treating. Again, we went because we wanted to be social. What a mistake that was, and I won't be going again. 

The number one question asked of us is.... do you have children. In fact, if one more person asked me that, I thought I was going to explode. Then we got stuck talking to quite a couple. This couple recently sold their house and they are relocating south to be near their daughter who just had a baby. Their other daughter is training to be a pediatrician. The couple was giving me a lecture on how tired they are (as they are moving, one daughter got married, and the other is having a baby) and also how special their daughter (studying to be a physician) is because she is COMPETENT. He said that is the best quality a doctor can have. Now perhaps if you are talking to someone inexperienced with the medical field, I would have just smiled and said.... OH YES or absolutely! But you are talking to ME! I couldn't take it and therefore let him have it. I said most physicians are competent. It is the physician who can listen, include the patient and family as part of the treatment team, and also have the compassion to understand that illness is much more than just about solutions... that's what makes a physician stand out from others.

Sunday, October 30, 2022

Sunday, October 30, 2022

Tonight's picture was taken in October of 2007. Mattie wanted to be an air force pilot that year. It was the first year where we went to a costume store to pick out one together. Previous years we either improvised or made one. Ironically this costume was of a navy pilot. So my friend in the air force mailed us some air force patches to sew onto the outfit. In addition, our neighbors embellished on the costume by adding the hat and sunglasses. It took several of us that year to get this costume just right. Mattie was so happy and got to wear this costume to his kindergarten parade. I thought we would have so many more Halloween parades in the future. Thankfully I did not miss out on anything with Mattie and captured whatever I could on camera.

Quote of the day: Grief is in two parts. The first is loss. The second is the remaking of life. ~ Anne Roiphe

The pile is growing for the Foundation's Fall Item Drive. When we bought this house, I knew it had to be a certain size to fit my things and my mom's. Ironically the previous owner built an addition to the house for his wife. She wanted it as her own private space, however, when I saw it, I knew it would be a space dedicated to Foundation items and things! I remember accumulating all these Foundation items in our town house in previous years and I have to admit it was overwhelming. 

If it weren't for me, my dad would be a couch potato and most likely unable to move. Since 2020, in some capacity he has been doing physical therapy or exercises with his caregivers in Los Angeles. This morning I did his brain games, had him walk 15 minutes inside the house, and then did his physical therapy exercises with him. He's not happy about it, but it is necessary to maintain his strength and abilities. 

Yesterday and today we went out for an early dinner. The restaurant was having a costume contest last night, and Cheryl, one of our favorite servers, was all dressed up! I can't believe she did not win a prize for her outfit and make up. 

We went back to see Cheryl today and we brought her a pumpkin gift. This cutie lights up. I know Cheryl loves pumpkins and celebrating fall. She immediately opened the gift, we installed the batteries and I snapped the photo. The customers dining behind us loved the pumpkin so much that Cheryl put it on their table while they ate. Apparently the pumpkin was a hit. 

I value the people who serve us each week. Since I live a very isolated life, these individuals have become an important part of my week. I appreciate them, the outstanding care they give us, and I want them to know this!

When we arrived home, more boxes greeted us on our front and back doors! I always worry.... will we get things for our item drives? But each year our supporters never disappoint. They are committed to us and the cause. For that I am grateful.