Friday, December 31, 2021

Friday, December 31, 2021

Tonight's picture was taken in December of 2007. Mattie was five years old and looked like the picture of health. He was in his cute Christmas sweater and posing for a photo that was featured on the front of our holiday card that year. I just loved Mattie's antlers, Christmas train, and smile. He was the spitting image of the joy of the Christmas season. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 54,547,092
• Number of people who died from the virus: 825,394

Outside by our garage this morning, I found a gift box. Inside of it was this beautiful azalea. It is a gift from the realtor who helped us find our house. She wanted to give us a gift for our first holiday within the house. I love love love plants, so my hope is I can keep it alive to plant outside in the spring. 

I am happy to report that the doxycycline is making a big difference for me. I lost the horrible cough and the sinus pressure. So I feel like I am on the road to recovery, which is important because there is honestly no rest in our home. 

It is hard to describe what each day looks like, but there are times I feel confined, with a complete loss of freedom. I have about 70 acknowledgment letters to write for the Foundation's annual drive, and to date, I have done 11. I am trying to find time to carve out to devote to things I need to do, but it just doesn't happen. Which can leave me frustrated to feeling hopeless. On a positive note, the Foundation brought in over $45,000 this fall (which includes the annual drive). It has been our best fundraising fall season to date. 

I was happy my mom made some phone calls this morning, but what Peter and I have quickly learned in this house is that sound carries. There is NO privacy and no place one can find that is uninterrupted by sound and noise. Prior to Mattie getting cancer, sound did not bother me at all. I could work and operate under any condition. After Mattie died, my ability to concentrate has permanently changed. If I do not have silence, I can't think straight. So my current living conditions do agitate me and it is my hope that I find a way to compensate for this over time, but as Peter knows at the moment I just walk around the house saying..... I am going to blow!

Thursday, December 30, 2021

Thursday, December 30, 2021 

Tonight's picture was taken in December of 2006. Mattie was four years old and by that time he totally understood the notion of Christmas, the importance of sitting still for a photo, and the sheer joy of decorating and celebrating the holidays. As you can see, Mattie was wearing a Christmas sweater for our family holiday card and he wanted to feature his Santa train in the photo. This train was brought out of storage this year, and just like Mattie used to do, we set it up around our tree. 

Today's Coronavirus update from Johns Hopkins:

• Number of people diagnosed with the virus: 54,285,594
• Number of people who died from the virus: 824,276

We received a lovely donation yesterday from a family I do not know! So I wrote to them asking them how they learned and decided to donate to Mattie Miracle. Her answer was her family wanted their children to give a portion of their allowance to a local charity. They went on "great nonprofits" together and did a search. From there, they found Mattie Miracle, they liked what they read, and contributed. Nonetheless, hearing that made my day. 

My parents had a visit from an in-home physical therapist and occupational therapist today. Both professionals did an evaluation on my dad and the PT did an evaluation on my mom. I learned from these ladies that there are TWO ways to bill Medicare for these professional services. One is through Medicare Part A (in-patient care), and there is a 60 day limit of service provided (therapy once a week for four weeks and then therapy every other week for the second month). The other is through Medicare Part B (out-patient care). Apparently one can get more long term therapy through this option. So once we exhaust the 60 days, I will be looking into Fox Rehab. 

Here is info on Fox Rehab, because I think every caregiver should know about this option......................

From the start of his career Dr. Tim Fox connected with older adult patients. Early on in his work, he noted flaws in the programs serving this group and set out to change them. After tirelessly reading through Medicare’s regulations he realized he could provide a new and innovative model of care. One using Medicare Part B to cover geriatric therapy at home. With a laptop and this bold idea, Dr. Fox set up shop in his basement and went knocking on physicians’ doors. Physicians easily saw the benefit to their patients. It was 1998, and FOX Rehabilitation was off and running. However, the treatment model wasn’t all that was extraordinary. Dr. Fox orchestrated a culture where the staff defines the standards. FOX is founded on a belief that great clinicians will do great work if you remove the handcuffs of bureaucracy. This tenet has been proven true beyond all imagination. Call FOX today for an in-home evaluation 1.866.227.8766.

These two women spent about two hours with us and they put my dad through his paces. They could clearly see that my mom and dad have VERY different issues. My mom just needs therapy to help with posture, as her stance and gait have been dramatically impacted from years of my dad holding onto her arm for balance. I have noticed a significant decline in my dad, from when I saw him in April of 2021. He tires very easily and without our stimulation would sleep the day away. He needs significant help with washing, dressing, and toileting and I think the therapists were impressed with how well I have it together. Specifically I was showing his occupational therapist the workbooks I use with my dad every morning for cognitive exercise. She was so impressed that she took photos of the books. 

The occupational therapist gave my dad a cognitive evaluation today by using MoCA. Here's the irony in this, if you just looked at how he answered the questions, you would think he has NO memory impairment at all. As he was able to count backwards from 100 by 7s (100, 93, 86, 79...) he knew it was winter, the month of December, the year, that we are in the USA, our house is in Oakton, he was also able to draw a clock face, and memorize two out of three words (apple, penny, table). Now he maybe able to answer these questions, but if you ask him what he did five minutes ago, what movie we watched, what we just ate, he has NO IDEA. To me this is what is important and if you can't remember what just happened, it impacts your ability to communicate, to be involved in conversation, to read a book or newspaper, and to watch a TV show. Unfortunately I have learned that my dad is not only struggling with short term memory, he also has issues with long term memory too!

Meanwhile, today I started Doxycycline Hyclate, thanks to my former physician. I have decided to return to her practice because though she doesn't offer concierge medical care, we have a 20 year history together that is worth its weight in gold! Even with one dosage on board, I can begin to ear again out of my ears, to feel the pressure in my sinuses subside, and I am not coughing any more! Amazing what happens when a physician LISTENS to a patient!

Wednesday, December 29, 2021

Wednesday, December 29, 2021

Tonight's picture was taken in December of 2005. Mattie was three years old and that day Peter and I took him to the Clyde's in Rockville. We had Mattie sit right by his favorite place, the pond. You may not be able to tell, but the pond was behind him, and Mattie loved all the fish and frogs that hung out there. In any case, this is a priceless picture to me, because Mattie was happy, healthy, and enjoying his outing with us. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 53,617,030
• Number of people who died from the virus: 822,676

I have been ill since Christmas. I have dealt with everything from a fever of 100.7, a terrible post nasal drip, coughing, aches, chills, and terrible head pain. Of course in the era of COVID, one may jump to the conclusion that I have the virus. The only thing is I KNOW my OWN body! I get these symptoms twice a year and when I do I need antibiotics, because it is a sinus infection. My symptoms now are no different than they usually are. The only difference now is I have a new doctor. 

Given that I am managing my parents care, I felt that I needed to transfer to concierge medical care for myself, because I wanted access to a doctor all the time. To have medical care on my schedule not a doctor's! It truly sounded good in theory, but it did not play out well. 

On Monday, I called my new doctor. Instead of triaging me over the phone, he had me come into the office. Instead of listening to me and my history, he proceeded to tell me I most likely had COVID. I truly did not think so, but given that I want to be responsible, I complied with the test. Of course he was little to no help and could care less that I was balancing the care of two 86 year olds! If that wasn't bad enough, he told me I was doing everything wrong and told me to stop taking Sudafed and other drying agents. As he said that was making my sinus issues worse. Honestly!!! I guess instead it is better to just drown in fluid!

Today I called the doctor's office for the COVID results. His assistant told me that I most likely wouldn't get results until Monday, January 3! Ridiculous beyond belief. Needless to say, I got a call tonight that my results are NEGATIVE. Which is what I told him on Monday. I did not need the swab test to tell me what I already knew. 

I STRONGLY dislike medical professionals who feel they know me better than I know myself. When you don't listen to me, that is a BIG RED FLAG. Now as a patient, I have the power to walk away and tonight, I wrote to my doctor of 20+ years and told her I am returning to her practice and asked for her advice now about my current health issue. 

I also have to laugh, when I saw this new doctor on Monday, he reacted to me like this was the VERY first time he has seen me. Mind you I went to his office to meet him in the beginning of November, then I took my parents to meet him last week, and therefore this was my third visit in a month's time. Apparently I AM NOT memorable! Interesting. In any case, the doctor asked if I am under stress! REALLY????? I literally answered him.... you mean other than packing up my parent's house, moving them cross country and in with me, and caregiving? It was a stupid question and it showed me that he neither listens nor observes the patients and families that come before him in his office. 

Tuesday, December 28, 2021

Tuesday, December 28, 2021 -- Mattie died 639 weeks ago today. 

Tonight's picture was taken in December of 2004. It was featured on the cover of our family holiday card. Mattie was two and half years old and by that point could understand the request to sit still to capture a photo. It was a holiday tradition that Mattie would get dressed up in a Christmas sweater and we would take photos of him. I haven't decorated since 2007, but when I look at our current Christmas tree and compare it to the one in this photo, I see all the same ornaments. It is amazing how I have preserved them over all these years in boxes. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 53,093,904
• Number of people who died from the virus: 820,419

I can't say I accomplished much today, as I am still feeling under the weather. I feel like I am drowning in sinus fluid! I got my dad washed, dressed, and did all his exercises. I even walked Sunny. But after that I felt like I ran a marathon and have been taking it low key. That will be my new mantra until I am feeling more energetic and like myself. Typically I am like the energizer bunny, so when I am not feeling well, my lack of activity is noticeable by everyone. 

What feels like overnight, I have become a full-time family caregiver. It isn't a role that is actually new to me, but I haven't served this role for years. Yet I know that caregiving for someone with dementia is associated with higher levels of distress and depression than caring for someone who doesn’t have dementia. 

When I wonder why I feel so depleted, I have to give myself a reality check. I moved myself in August (from Washington DC, where we lived for 27 years to Oakton, VA), then dealt with home renovations, packed my parents up in December and moved them in with us. No breaks in between and during all of this, I am caregiving for my dad. 

Research indicates that assuming a caregiving role can be stressful and burdensome. Caregiving has all the features of a chronic stress experience: It creates physical and psychological strain over extended periods of time, is accompanied by high levels of unpredictability and uncontrollability, has the capacity to create secondary stress in multiple life domains such as work and family relationships, and frequently requires high levels of vigilance. Caregiving fits the formula for chronic stress so well that it is used as a model for studying the health effects of chronic stress.

Monday, December 27, 2021

Monday, December 27, 2021

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and to get a photo for the front of our family Christmas card, we dressed Mattie up in a Christmas sweater and took him to Home Depot. Mattie liked and tolerated only two stores.... Target and Home Depot. I figured if we put him in a shopping cart and had him look at the holiday lights and plants in the store that this would distract him long enough so we could capture him in a photo. This was the photo on the front of our 2003 holiday card. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 52,593,614
• Number of people who died from the virus: 817,726

This year I decided to change my primary care physician. Not because I did not like my physician I had been seeing for 20+ years, but because I wanted access to a concierge physician. Someone who I could contact 7 days a week, 24 hours a day. I figured this would be helpful given that my parents are now living with us. I wanted the freedom and flexibility to contact a doctor on my terms rather than on theirs. Honestly it sounds good in theory, and probably some offices operate a concierge service in a more appealing and user friendly manner than the one we selected. 

The concierge practice I selected is with a physician who is a known quantity to me. In fact, he is the physician who started the primary care practice I have been going to for decades in Arlington, VA. So I know this physician and his reputation. However, for me having a relationship with a physician is crucial. We have to be able to understand each other and have similar communication styles. My former physician is very type A, not unlike me. She dots all her i's and crosses all her t's! I feel that when we are talking about my health, she is thorough and pro-active. My new physician is an engineer by training before becoming a medical doctor. His ability to converse and process information are slower and he has the need to give lectures and educate about esoteric information. I suppose that is fine on a good day, definitely NOT good on a bad day. Since November, this doctor has seen me three times. Yet each time I see him, it feels like this is his first time interacting with me. THIS DOESN'T EARN HIM ANY VICKI POINTS! I make a mental note of this because medicine has to have a human connection with me to be affective. 

Any case, this morning I called the doctor's cell number to report my sinus symptoms and to get advice. Instead of working with me by phone, he had me come in. Thankfully I had just finished helping my dad shower and dress. I wasn't happy that he demanded I come in to be seen. After all I picked this service so that I would have more attention and flexibility in how my care is delivered. 

I did go to the office and his recommendations were borderline nuts..... he wants me to take multiple showers and breathe in the steam, to try not to cough (like one can control this?!), and then what sent me over the edge was he took out paper and a pen and started to draw for me a picture of my sinuses! Again, I am all for education, but not when my head is filled with fluid and feeling like it could burst. I am signing off to rest and realize I have to take better care of myself in order to be able to continue serving my important caregiving role. 

Sunday, December 26, 2021

Sunday, December 26, 2021

Tonight's picture was taken in the beginning of December (2002), during our first snowfall. That year I wanted our holiday card to be special..... as this was our first Christmas with Mattie. I literally dressed him in a Santa suit and brought him out onto our deck with snow in the background. We took a whole series of photos that day, but this was the one which made it onto our card!

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 52,176,102
• Number of people who died from the virus: 816,554

On Christmas, Charlotte's (our five year old god daughter) parents snapped a photo of us by the Christmas tree. How do I feel about the fact that Charlotte is close to the age when Mattie was diagnosed with cancer? I am certainly aware of it. Perhaps because of the gender difference I do not get emotionally upset around Charlotte. She instead brought life to our holiday table and it is fun to see the world through the eyes of a five year old.  

I forgot to post this yesterday, but this was our Christmas buffet...

organic turkey

homemade stuffing 

sweet potato souffle

cranberry sauce

carrots

string beans

and a coconut layer cake for dessert

My friend, Ilona, made me a Mattie Miracle ornament to hang on my tree. Ironically I distributed these ornaments to my volunteers during the Foundation's tenth anniversary (2019), but did not keep an ornament for myself. Most likely because back then I did not decorate for Christmas. So I am honored to have this orange ornament near Mattie's photo on our tree. 

Before I left California one of my dad's caregivers gave me a house warming gift. A furry type rug. I placed that rug near a window and sure enough Indie found it!

While grocery shopping this week, I came across red and white tulips. Typically I only decorate with these flowers in the spring, but something about them reminded me of a candy cane! So they became my floral display in our front hallway for Christmas. 

Despite struggling with a sinus infection (like an anniversary I get one every December or January, so I know the symptoms well), I am still working, helping my mom unpack and doing tasks and chores. But I admit I am dragging and I also understand that if I stop functioning the whole process in my house would come to a screeching halt. So I do get my reality and I am focused on slowing down in order to recover. 

Saturday, December 25, 2021

Saturday, December 25, 2021

Tonight's picture was taken in December of 2008. Mattie was in the hospital and a friend brought him a glazed Dunkin Donut. Mattie went through a donut phase during treatment and thankfully we had such an amazing support network that they practically brought Mattie a donut daily. My joke back then was "one donut a day and everything will be okay!" Also friends brought Mattie a couple of Christmas stockings. Mattie decided to wear them instead as well as decorated his wheelchair with Santas! 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 52,092,894
• Number of people who died from the virus: 816,463

Today was a total blur! I got up at 7am and was working the entire day. My morning routine is consistent, I take a shower, get myself dressed and together, I make breakfast for everyone, and then go upstairs to get my dad out of bed, washed, and dressed. 

In addition to my usual routine, I was overseeing a dinner for ten people today. Thankfully I had Peter's help, but I am tired and can feel a sinus infection coming on. I typically get one every late December, early January and then one again in the summer. I am like clock work. So I am dragging. 

Before our company came at 1pm, I walked Sunny for an hour. Though this is another task, it is something I like doing. It gets me outside, bonding with Sunny, and not caregiving for an hour. So to me it is respite. I have working so hard on this house since June and I am still at it. It is a full time job!

Pictured in the photo above are (going counter clockwise): 

• Charlotte (age 5) - our God daughter
• Cesar (Charlotte's dad)
• Gladys (Charlotte's maternal grandma)
• My mom
• Koseth (Charlotte's mom)
• Me
• My dad
• Ilona (my friend who also lost her only child to cancer)
• Attila (Ilona's husband and our friend)
• and Peter is missing

Friday, December 24, 2021

Friday, December 24, 2021

Tonight's picture was taken on December 24, 2008. That day our friend Ed came over dressed as Santa Claus. He delivered gifts to Mattie and since Mattie did not know Ed, he truly thought this was truly a visit from Santa. I remember this moment in time like it were yesterday and Ed gave us memories from that day that will last forever. Unfortunately both Mattie and Ed died from cancer. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 51,927,088
• Number of people who died from the virus: 816,330

We had a visit from my friend Ann and her aunt Helen today. They brought us a whole box full of homemade cookies and breads, and gifts. Their visit perked us up and lightened the morning. After their visit, our doorbell rang. It was our neighbor Judi. She came to deliver us a box of See's candy. Which is a California based company, and one of my favorites. Judi came in and sat with us for about 90 minutes and it truly added some holiday cheer and broke up the usual routine for me. 

To my surprise, we received two gifts from FH Furr. You maybe asking who is that? FH Furr is the company who provides us with electrical, plumbing, and HVAC service. Given the immense issues we have had with the house, FH Furr has practically lived at our house for MONTHS. Their CEO, Jesse Furr sent us two gifts today. One could say..... well you spent enough money with them, so these gifts shouldn't be a surprise. But I don't take that attitude. Instead, I look at these gifts as an indication of the type of company that it is, which is one that values its customers and cares about the services they deliver. I am thrilled we are connected with FH Furr and I am grateful for their in-kind contributions to Mattie Miracle as well!

Inside the box are forever roses, meaning made of silk.

They also sent us a tower of chocolate truffles! Being a big chocolate fan, this tower makes me smile. I plan on serving it to our Christmas guests tomorrow. 

In addition to my usual routine and tasks, I have been cooking all week for Christmas. I had to take it day by day, otherwise, there would be NO WAY I could do this all in one day. Peter and I made a coconut layer cake together today for Christmas. Of course in addition to Christmas dinner, there is Christmas Eve dinner to make. I feel like I haven't left the kitchen all day. I need an elf or two to be shipped directly to my doorstep. 

Thursday, December 23, 2021

Thursday, December 23, 2021

Tonight's picture was taken in December of 2008. Friends brought Mattie these cute hats, headbands, and Rudolph noses! Mattie was going through a very difficult time and it was heartbreaking for Peter and I to see Mattie dealing with intense pain, depression and anxiety. Peter tried to lighten the mood by acting goofy with Mattie. This did help break the cycle and improve Mattie's mood. But unfortunately no matter what we did the reprieve was always short lived. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 51,808,987
• Number of people who died from the virus: 815,368

We woke up at 12:30am to no power. Or I should say, Peter woke up and then alerted me. Thankfully we installed a generator over the summer and just today alone it paid off. Otherwise my parents would have been two popsicles without heat. 

It was a long day. I took my parents to meet their new medical doctor. We were at the office for literally almost two hours. Everyone was very helpful and we put an order in for in home physical therapy for both my parents and occupational therapy for my dad. 

Peter and I spent part of tonight getting our Christmas table together. We turned the table because between the china cabinet and the tree, there wasn't much room for the table. 

I haven't taken out my Christmas decorations since 2007! It is a long time, but clearly when I packed them up years ago, I did a good job. As not one thing has broken over all these years. 

Wednesday, December 22, 2021

Wednesday, December 22, 2021

Tonight's picture was taken in December of 2008. As you can see Scooby Doo came to Mattie's room to visit and bring Christmas gifts. Mattie was a HUGE Scooby fan, so despite how Mattie was feeling, he was very happy to have a Scooby visit. In turns out years after Mattie died, we met the father of the teen who played Scooby Doo for the hospital. I let the father know how much his son's visits meant to us and I thanked him for his son's service. Back then, the little things made such a difference to us and the slightest act of kindness could change the whole tone and mood in our room. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 51,513,208
• Number of people who died from the virus: 811,783

Today was one for the books! I got up early because I wanted to get my dad up, washed, dressed, completed with breakfast, and some of his daily exercises. I did this early because my mom wanted to go to the salon for her hair and nails. Given that it is a holiday week, I booked these appointments last week. I took my mom to my salon in Georgetown. Yes despite moving, I still commute over thirty minutes into the city for services. In any case, I have been seeing the same nail person since Mattie died in 2008. We go back a long time and her sister used to do my hair, before she retired. In any case, I figured my mom would enjoy the salon experience in Georgetown, especially since the nail area is spa like. 

I figured while my mom was getting her hair done, I would get a pedicure and manicure. I was looking forward to time NOT doing anything. Given all the moving and packing I did in Los Angeles, my nails are a mess and my fingers are all cracked. To my surprise, my mom finished her hair service early and they brought her upstairs to me, where I was right in the middle of a pedicure. Somehow there was a miscommunication and my mom thought she was getting her nails done at the same time as me. Of course this couldn't happen, as my nail person was going to to finish me, go on a thirty minute break, and then take care of my mom. Though I had mentioned this timing to my mom last week, it did not help me today. When my mom heard about the time delay, she wasn't happy. She did not want to wait and it all went downhill from there. 

Needless to say, my mom did not get her nails done and I did not have a peaceful moment. I was upset, frustrated, and once again feeling trapped. I am trapped as I can't get anything done other than tasks, cooking, and cleaning. Perhaps I will figure this out over time, but for now, it is one daunting day after the other. 

Tuesday, December 21, 2021

Tuesday, December 21, 2021 -- Mattie died 638 weeks ago today. 

Tonight's picture was taken on Christmas in 2008. We got home from the hospital on Christmas Eve, and frankly I do not know how on earth we even got Christmas presents for Mattie. Clearly we did, and you can see Peter helping Mattie to open one of his gifts. It was a very depressing holiday for us, Mattie was in intense pain, dealing with significant depression, anxiety, and traumatic stress. I remember we were walking on eggshells at home and despite how overwhelmed we were, we always worked hard on making Mattie feel safe, secure, and busy with activities and play. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 51,250,698
• Number of people who died from the virus: 809,714

Here I am again, sitting in front of the computer to write Mattie's blog. I can't say my day today was any different than yesterday. From the moment I wake up, I am busy doing tasks and chores. In fact, other than meals and writing this blog, I am never sitting down. By the end of the day, I am worn out. Just to start the same routine the next day. Even when Mattie was sick, my days varied more than they do now. As we were in the hospital, there were constant interruptions in our room, visitors coming in, volunteers, and guest artists working with the kids and families. Though I was caregiving then, my caregiving role now looks much different. 

When I was in graduate school, I devoted my research and dissertation to the stresses of family caregivers of older adults. After Mattie got sick, I deduced that the stresses I experienced were similar to those caregivers of older adults. Now I can safely say..... yes and no. Caregiving for a child is much different from caring for a parent, starting with the fact that a child is a child. The caregiver is the adult on duty, who sets schedule, limits, and rules. It is quite different for caring for a parent. That is only one of the difference but it is a big difference. Similarities of course are the non-stop chores, medical care management, cooking, cleaning, entertaining, and so forth. 

At the end of each day, I am worn out, and like any caregiver, I have little to no time to do anything for myself. I can't even get to Foundation work, much less return a phone call or email from a friend. It is a sad commentary and my hope is things fall into place and I learn how to juggle all of this, but for now I am overwhelmed and not having any down time I find very difficult. 

Monday, December 20, 2021

Monday, December 20, 2021

Tonight's picture was taken in December of 2008. We drove down to the National Mall so we could show Mattie the Christmas tree and state trees. It was a holiday tradition we did as a three some. Of course in years prior, we all walked to the National Mall, as it was only blocks from our home. But in 2008, walking was not an option, but we were determined to continue to do normal things. Despite the fact that our life was anything but normal. As you can see Mattie really did not want to take a family photo and hid his face, nonetheless, I am glad we captured all our moments in time. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 51,049,886
• Number of people who died from the virus: 807,732

I honestly do not know how I could possibly describe my day to you. All I know is I am doing non-stop chores from the moment I wake up until I go to bed. It is no wonder why I can't get to the computer much to get any of my own work accomplished. What I need to accept is this is what my life is going to look like and stop feeling guilty and strung out that I am not getting to Foundation work. In fact, I feel so frazzled, I even thought about folding up the Foundation today. However, this is something that I have built and nurtured for 12 years in Mattie's memory, and we have accomplished so much, that I can't see letting go of my 501c3 baby. 

In the midst of everything going on I have also started prepping food for Christmas because I neither have the time nor energy to cook a big meal in one day. Instead, I manage a dish a day and refrigerate it, so it can be cooked it on Christmas day. This is a whole lot easier than trying to do the impossible on the 25th! 

As for the 10 large (and I mean large and HEAVY) wardrobe boxes that we had, I advertised them on Next Door. My friend told me about this app, and it has been a God sent since we moved to this house. I can't tell you all the things I gave away to local residents for free. There were so many items in this house that I did not like or wouldn't use, but knew someone could benefit from it. On Saturday, I advertised the 10 wardrobe boxes, and as of tonight, all 10 will be gone. I have decided that I will do the same thing with our packing boxes, when I eventually get to them. Packing boxes add up in cost, and people are always moving, so I figure someone should benefit from these boxes, rather than putting them in the recycling bin. All I know is when someone takes things off my hands, it saves me MORE work and time, which I deeply appreciate!

Sunday, December 19, 2021

Sunday, December 19, 2021

Tonight's picture was taken on December 24, 2008. Mattie was going to be released that day from the hospital to go home, so he could celebrate Christmas at home. I get why hospitals push people out during the holidays, but in all reality this wasn't the best decision for us. Going home was challenging, isolating, and impossible to manage without the support of our medical team. Right before being released, Mattie's best preschool friend, Zachary, came to visit. While they were playing, two marines walked into the room to bring holiday cheer and presents. They graciously allowed us to take photos together which Mattie enjoyed because even at a young age he had great respect for people in the military.

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 50,832,991
• Number of people who died from the virus: 806,438

This morning wasn't my finest moment. I need to constantly remind myself that my dad isn't who he once was and even though I have inordinate patience, I need to tap into an even deeper reserve. As I got him up this morning to get into the shower, he said he wanted to use the bathroom first. I got him to the toilet, but what I did not realize is that walking along with us was a trail of urine (of course my mistake was I took him depends off first because I thought we were walking directly to the shower). While on the toilet, he mentioned that he saw water on the floor, but I said that couldn't be, until I looked closer. Sure enough it wasn't water but urine. Which I was stepping in and walking through. Needless to say when juggling a lot, I at times crack. I started yelling. Not at my dad, but he took it like I was yelling at him. He doesn't like any loud voices or noise now and therefore the internal message I have to remind myself is that he can't control what he does and accidents like this will happen. Just deal with it and move on. I can't prevent them and I certainly don't want him to feel bad about what happens. Though the one beautiful thing about dementia is that in a few minutes my dad forgets what just transpired. So it is like working with a clean slate, which is the only blessing, and I really mean the ONLY one, as I think dementia is another horrible disease. 

We focused on placing furniture on the first floor today. I was determined to get rid of the warehouse look! I have to take photos during the daylight hours, but this is my mom's furniture in the living room. Fortunately my mom and I have a very similar color palate and similar taste. So our furniture talks to each other. But I had to be strategic when purchasing a house, as it had to have space for my things as well as hers. 

Our piano room. Or I should say the room that features Mattie's piano, which was given to Mattie for free by a former neighbor. I will never forget Susan, she felt Mattie needed to learn an instrument. Next to the piano is a Victrola. On top of this Victrola is a marquetry box which houses Mattie's ashes. The piano room and the room pictured below are new additions to our house. The former owners built them because the wife literally wanted her own private space in the house away from her husband and children during certain parts of the day. This new addition enables us to house all our furniture. 

We did not name this room, instead when the house was sold to us it was called the Oakton Room. So the name has stuck with us. I have now removed enough furniture in it so that I am not going to have an anxiety attack. Ironically Indie and Sunny absolutely love this space. Of course you have NO IDEA what our basement looks like. It is packed to the gills with boxes and furniture we removed from the first floor. I will slowly begin working on the basement post-Christmas. 

Saturday, December 18, 2021

Saturday, December 18, 2021

Tonight's picture was taken in December of 2008. Mattie was recovering from his surgeries but was back in the hospital for his next round of treatment. As you can see Mattie had trouble putting on clothes, so I literally draped his pajamas around him. That day, Whitney and Lesley, Child Life Interns, came into Mattie's room to help brighten his mood. These are extraordinary women, who are compassionate, have positive energy, and Mattie really related to them. They brought with them a tray and a bunch of creative materials for Mattie to play with, and no matter how badly Mattie felt, we usually could engage him in some sort of activity. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 50,754,052
• Number of people who died from the virus: 806,211

After I got my dad up, washed, and dressed, we all had breakfast together. Then I proceeded to help my dad with his cognitive, physical and occupational exercises. Once all these things were completed, my dad was wiped out! I mean truly done for the morning. He goes to his recliner and typically rests or sleeps for several hours. This is how our mornings are MOST days.

While he is resting, we are working! There were ten big wardrobe boxes in my parent's room. We unpacked each of these boxes today! It felt like a feat. To my surprise the movers packed lamps within the clothes. It is incredible that the lamps did not break! 

The unpacked closet!

Later in the day, we drove to Alexandria to visit Mattie's memorial trees. We decorated them for Christmas. This is Mattie's official memorial tree. Those of you following the story, this is the fourth tree that was planted at Mattie's school, as the other three had issues! This is a white swamp oak that produces the most charming acorns in the fall. 

A close up of some of the ornaments. 

This is memorial tree number 3. We decorate it too. This is a yellow wood tree that was struck during a terrible storm and the tree literally split down the middle. It has made a good recovery. Any case, our joke is that Mattie has a memorial grove at his school. 

These trees are important to us and give us a venue to acknowledge and celebrate Mattie's life. After all, Mattie's ashes are not in a cemetery. They are home with us. This was our choosing, and the beauty of a tree is it provides joy, shade, and protection to countless children on the playground...... a place Mattie used to love to play in. 

We went out for an early dinner to Mattie's favorite restaurant. This is a restaurant my family has been going to together since 2005! So a long time. In fact, after each Foundation Walk, my family has dinner at this restaurant. I am telling you this because it is a known quantity. In any case, my dad HAS NO MEMORY of this restaurant at all! His decline has been rapid since I saw him in April 2021. Typically with dementia one holds onto long term memories better than short term ones. In my dad's case, this isn't true at all. He is so forgetful that he can't remember where he is in the house, how to get to the bathroom, and the line that truly brings me a chuckle is....... where did all this furniture and stuff come from? Where did the movers get it from?! We remind him the answer is..... YOUR HOUSE IN LOS ANGELES!

Friday, December 17, 2021

Friday, December 17, 2021

Tonight's picture was taken in December of 2008. Pictured with Mattie is Tricia. Tricia was Mattie's favorite nurse. So much so, that one day while in the middle of the hospital hallways, Mattie started screaming for Tricia. When she came running over, she was sure something was wrong with him. To all of our surprise, he called her over because he had to let her know then and there that he "loved her." It was a priceless moment in time. This is the beauty of Tricia, she has no trouble getting down on her hands and knees and working with her patients. She meets them where they are and I am so glad Mattie had such a special person taking care of him (and us!). 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 50,616,347
• Number of people who died from the virus: 805,254

Perhaps I am tired, perhaps I just need a break, either case, I am feeling overwhelmed. Somehow I can't get anything accomplished, other than one task after the other. In my email inbox today one of my mom's friends sent an email about the fact that he is a grandfather four times over this week. Naturally I should be happy for him, as this is a blessed event and addition to his family. But frankly, I am not in the kind and charitable mood at the moment. All I could think about is..... wow, do you really think I need to hear this right now? There are so many reasons why I don't want to hear about this, and if you have been reading my blog long enough, you probably can surmise my list. 

It is a mixed blessing hearing information like this. Naturally friends have highs and lows and therefore to be a friend you really need to embrace these moments and walk their journey with them, yet the journey I walk isn't a common place experience that the majority of people survive. Thankfully so, because I have a feeling if every parent in our world lost a child to cancer or other terminal disease, it would be an even sadder place than it currently is. While this friend is celebrating his new addition, this weekend, I am planning on how to decorate the trees that memorialize the memory of my dead son. Quite the comparison. My loss isn't a one time occurrence, NO! It is a yearly, monthly, and daily issue that walks with me each day of my life. Mattie's loss signifies the end of being a mom, and the hopes ever of being a grandparent. So no right now is probably NOT a good time to be sending me emails about marriages, pregnancies, and so forth. 

Thursday, December 16, 2021

Thursday, December 16, 2021

Tonight's picture was taken on December 20, 2008. Mattie was home recovering from his surgeries and that day his art teacher surprised him with this wonderful wreath. A wreath made out of paper, and on each leaf was a message or creation from each kindergarten student at Mattie's school. It truly was a work of art and very thoughtful. For years after Mattie died, Peter and I had this wreath. We hung it on the inside of our front door. When this photo was taken, Mattie needed a hospital bed and our living room became a make shift clinic complete with IV pole, commode, wheelchair, and so forth. It is a time in my life I will never forget. It is etched forever in my memory as was the chaos all around me at home. Chaos that continued on in our home for about three more years after Mattie died. It took a lot of energy, strength and courage to work through all the piles of things that Mattie collected and were given to him during his cancer treatment. Literally Mattie got boat loads of stuff daily for over a year. You would be amazed how quickly things pile up when you don't have the time to evaluate, organize, and purge things. I am now a product of this experience, and I no longer can relate to clutter and lots of things. When I am surrounded by chaos, I feel internally anxious, angry, and unstable. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 50,475,878
• Number of people who died from the virus: 803,271

I got up at 5am today in order to get myself ready, my dad ready, strip the beds my parents were temporarily sleeping in, did about five loads of laundry, made breakfast and then greeted the four movers at 7:30am. As you can see the moving truck was very big and very full. It took 7 hours for the truck to be unloaded and things assembled into the house. 

My basement is about 1,800 square feet. In other words it is bigger than my town house that I moved from in Washington, DC. I have NO idea what I would have done without this space. As you can see my parents items have filled 200 boxes in the basement and the stacks are floor to ceiling. 

Boxes everywhere! I honestly have NO idea how I will manage this, keep in mind that I just completed my own move of my own. Which meant evaluating Mattie's things and dealing with those difficult decisions. If that wasn't enough, I have been moving my parents since 2018. 2018, 2020, and now 2021! I could run a packing and moving company by now. 

I would like to say that the chaos is just contained to the basement, but it is not. The BIG addition in our house, which was built by the previous owner, no longer seems big. It is packed with furniture and the lack of wall and free space has made me so edgy, I can't process this room for the next few days. I have to walk away until I am ready to deal with it. 

In addition to clutter, the movers dinged our paint on the walls. I completely understand as things are heavy, but it is another thing that set me off, given the ordeal I have been through with getting this house painted. 

Here is the highlight of my day, my dear friend sent me baked mini cupcakes. It is these surprises that perk me up and truly make me smile. As I always say, I have the best friends and Mattie Miracle supporters. 

This is what these treats look like. I can't wait to try them after dinner. I have been on my feet all day and my day isn't over yet. My dad keeps telling us he is thrilled the move is over. He has NO concept for the amount of work ahead. When we show him photos of the packed basement, his response is that the basement is big. The purpose of the photo wasn't taken to show the space, but rather what is FILLING the space. Unfortunately my dad's brain no longer works like it did and this is an adjustment for all of us. 

Wednesday, December 15, 2021

Wednesday, December 15, 2021

Tonight's picture was taken on December 10, 2008. As you can see Mattie could hardly keep his head up, but really tried as Santa and Mrs. Claus were in the room delivering presents. Of course Santa got some coaching from Mattie's art therapists and child life specialist.... so he knew all of Mattie's favorite toys. Mattie picked his head up from the pillow, thanked Santa, and then returned his head back to the pillow. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 50,341,524
• Number of people who died from the virus: 802,014

I had a fascinating experience at the grocery store. Since I have moved to Virginia, I find the closest store to me is The Giant. Ever since I moved to the National Capital region in 1994, I have shopped at Safeway. If I had my choice, I would still be a Safeway shopper. But now I have to shop where it is geographically convenient for me. I have gotten used to The Giant and what I particularly love about this store are the people who work within it. Everyone is so kind, friendly, and they all try to help. Unlike my stores in the Washington, DC area, where most people seemed annoyed to be working. 

In any case, there is a check out person at The Giant named Maria. She is one of the people there that I love because she is from New York and is spirited. This week she asked how I was.... so I told her about my trip to Los Angeles and mentioned that I moved my parents in with me. From that piece of information she told me how she cared for her mom and husband, both of whom have died. Maria immediately felt she related to me and I would have to say that this once again reminded me that caregiving and grief and loss do bond people together. It is like we talk the same language. Maria mentioned that when she was caregiving her siblings did not help at all and she felt alone and isolated. Which is not an unusual occurrence, as I know full well from my own caregiving research. She said the only person that gave her a break was her neighbor, of all people. 

With that, she took my store receipt and literally gave me her home phone number and cell phone number. She said to me that she wants to help and that I should call on her any time. Who does this now a days? I am not saying I am going to do this, but her incredible compassion was noteworthy. 

Like Maria, I too learned when Mattie was sick who I could rely on and who really could rise to the occasion to be supportive. Ironically it isn't always the people you think it will be! Which can be very startling and upsetting. Yet it is the reality and in some cases relationships never return to normal after a caregiving crisis. To this day I will never forget losing friends I had for 15+ years due to Mattie's illness. I honestly do not know why these friends abandoned our friendship, other than one told me that her family felt my situation was making HER sick. WOW, if it was making her sick, who knows what it (Mattie's cancer diagnosis) was doing to me!!!