Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

January 18, 2021

Monday, January 18, 2021

Monday, January 18, 2021

Tonight's picture was taken in January of 2009. I will never forget this day! Mattie had a bone scan to see if new tumors had formed. What should have been a one hour test turned into three hours. Why? Because the tech and radiologist kept seeing things on the scan and therefore wanted more and more images. I finally confronted them and connected them to Mattie's surgeon, who explained they were seeing scar tissue from where prosthetics were placed in Mattie's arms. It is very hard to sit still for a bone scan and Mattie was starving, as he couldn't eat or drink anything to prep for the test! I promised Mattie that we would take him to the Japanese restaurant on the hospital's campus if he complied with the testing. Somehow Mattie managed to endure the testing and this photo was taken at the restaurant. As a treat, Mattie's art therapists and child life specialist also came with us. The man cooking the food at our table, was playing a game with us. He wanted to see if he threw a shrimp at us, who could catch it in our mouths! As you can see, Mattie was laughing watching shrimp flying in the air. 

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

  • number of people diagnosed with the virus: 24,045,025
  • number of people who died from the virus: 398,588

It was my second full day back in Washington, DC. I came back exhausted from Los Angeles, but it did not really hit me until today. If I stop moving, I fall asleep. I am unable to concentrate on anything, and have yet to return to doing my Mattie Miracle work, which has piled up since I left! I could feel bad or guilty about this, but it serves no purpose. So instead, I am trying to ease back into life without being a caregiver. Which means resting and regaining my physical and emotional strength. 

January 17, 2021

Sunday, January 17, 2020

Sunday, January 17, 2020

Tonight's picture was taken in January of 2009. Mattie was home between treatments and a teacher from Mattie's school came over to give him a piano lesson that day. This teacher was NOT a music teacher at the school, but did know how to play the piano and was eager to teach Mattie. It was her suggestion, which I appreciated. The keyboard in front of Mattie was given to him by Jerry and Nancy (the dynamic musical duo who volunteered at the hospital and became attached to Mattie). I will never forget the kindness, care, and compassion shown to us by Mattie's support community. 

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

  • number of people diagnosed with the virus: 23,871,070
  • number of people who died from the virus: 397,008

What a time to live in DC! The city is in complete lock down, over and above COVID. I swear I am in a developing nation, not in the USA. This is the sight we have in front of our building. National Guard and police completely blocking the street! Basically no way to get to the National Mall!
Beside that sight, we also have TENTS all around us in front of our building! Why our complex is doing nothing about this is infuriating, as they have a lot more clout within the city than ONE PRIVATE RESIDENT! I left DC in December and I came back to a major encampment!
This is the encampment I am referring to! In addition to the tents, these folks urinate, defecate, leave garbage, and smoke pot at our doorstep! Of course in the eyes of DC government, I AM THE ONE WITH THE PROBLEM! 
This is quite a welcome home! We are surrounded by military trucks, National Guard HOLDING automatic weapons, and bridges and street closed for at least a week. 

January 16, 2021

Saturday, January 16, 2021

Saturday, January 16, 2021

Tonight's picture was taken in December of 2006. Mattie was four years old and part of our family holiday tradition was to go to the US Botanical Gardens. They always had amazing festive flower displays and sculpted models of DC buildings out of plant materials. Mattie and I posed in front of the US Capitol! Peter and I haven't been back to the Gardens at Christmas time since Mattie died. 

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

  • Number of people diagnosed with the virus: 23,707,002
  • Number of people who died from the virus: 395,195

I got up at 4am this morning, in order to get showered, dressed, made my mom breakfast and then left for the airport at 5:30am. This as my take off photo out of LA! It was another glorious sunny day! 

Not only did I go through a metal detector at the airport, but I went through the 360 scan as well as a pat down! Then TSA also screened passengers a second time right before boarding the plane to DC. So I could feel the heightened security even before returning home. 
Beautiful from the air! I had the blessing of having NO ONE next to me. Which was nice because I really need 4.5 hours to unwind, rest, read, and be on my own time schedule. 
Classic DC! Grey and overcast. We get MORE grey days than anything else. 
Our home is surrounded by the National Guard, who each are carrying automatic weapons. Am I in the USA? 
Fencing everywhere!
Surrounded by military trucks and National Guard. 
Outside our bedroom window. Peter says its impossible to sleep at night with lights and noise!
A greeting from Miss Indie!
An anxious pooch! Wants to know what on earth happened to me!???

January 15, 2021

Friday, January 15, 2021

Friday, January 15, 2021

Tonight's picture was taken in December of 2006. Mattie was six year old and was posing in front of our Christmas tree. Each year that Mattie was alive, I featured a photo of him on the front of our family holiday cards. This was just one of the photos in a series I took that year. It wasn't the photo I selected for our card, but it is definitely one I love. It is hard to see, but our tree had many ornaments that Mattie handmade and I also had a holiday ornament for each family member who had died. 

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

  • Number of people diagnosed with the virus: 23,520,563
  • Number of people who died from the virus: 391,922

It was my last day in Los Angeles. I feel like California gave me a gift today of an 80 degree day. It was absolutely beautiful out. Though I did not spend much time outside, every afternoon around 4 or 4:30pm, my mom and I go out for a walk while my dad is resting. Typically it gets cooler at this hour, but not tonight. It felt like spring. Absolutely glorious. 

It was a very FULL day. I did about three loads of linens as I disassembled the spare bed my mom uses. She stays in the guest room when I am here because my goal is for her not to worry about my dad, but to sleep and wake up on her own time schedule. I did cognitive and physical therapy exercises with my dad, completed all paperwork my mom gave me, printed out and attached the alarm company emergency number to every telephone in the house, cooked a full meal, cleaned and did more cleaning, vacuumed, walked four miles with my mom, packed, and the list goes on! 

Today's linner.... Broiled Italian sausages, corn on the cob, string beans, sautéed mushrooms and peppers. My dad likes variety and he doesn't like left overs, so it means cooking..... and cooking all the time!

Perhaps I am just tired, but right now my outlook on just about everything is NOT positive. 

After dinner, my dad found this math quiz in a magazine he was looking at. He was getting frustrated and gave it to me. He wasn't just unable to complete it, but he did not even understand the concept of lining up numbers and adding them by column. This was truly shocking to me because my dad had an advanced accounting background. He understood numbers and how they related to each other. Given his cognitive decline, even what was once intuitive to him is now gone. 

January 14, 2021

Thursday, January 14, 2021

Thursday, January 14, 2021

Tonight's picture was taken in December of 2006. Mattie was four year old and I asked my boys to pose in front of our Christmas tree. They both had their Santa hats on and I loved the big hug Mattie was giving Peter!

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

  • Number of people diagnosed with the virus: 23,308,882
  • Number of people who died from the virus: 388,531

Today was a hellish day! It's NOT what I did, but what I didn't do! At one point, I was balancing the electrician, the alarm company rep, the owner of the house and his insurance agent, and a phone call with MetLife about long term care insurance ALL AT THE SAME TIME. Frankly at one point today I wanted to absolutely SCREAM! I am so so tired and the amount of work here is endless. I don't know why life here is SO frenetic, stressful, and debilitating. Not a minute's peace and though today was 80 degrees, I never sat outside to enjoy. There is just NO time. On top of everything else, I had to take my parents to the notary (which seems like our 4th or 5th visit to this person) and then took my dad's watch to the jeweler. He insisted the watch needed a battery! I kept telling him that nothing is wrong with his watch, he is just constantly adjusting it and therefore it never says the right date. I couldn't listen to the battery lament one more minute, so I had a professional look at the watch! The watch was fine and like I had said, he kept playing with the date so that when the watch was at the 12 position.... 12pm, became midnight and therefore the date moved to the next day. We corrected the issue! 

In the midst of this thoroughly chaotic day, I made lamb chops, asparagus, artichokes, baked potatoes, and a tomato salad for my dad. If I never see a kitchen again that will be too soon. But I couldn't even eat in peace as MetLife called the moment I sat down, and had to deal with them. Then when off the phone, my dad had to run to the bathroom. NO PEACE AT ALL! SIGNING OFF.....EXHAUSTED IN LA! 

January 13, 2021

Wednesday, January 13, 2021

Wednesday, January 13, 2021

Tonight's picture was taken in December of 2007. I remember snapping this photo because I absolutely loved Mattie's eclectic look! He had his Santa hat on, his duck boat  tour whistle in his mouth, Peter's baseball hat and one of his Peter's shoes on! Not to mention his sunglasses on, when he was inside with no sun around. The beauty and whimsy of Mattie. 

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

  • Number of people diagnosed with the virus: 23,053,424
  • Number of people who died from the virus: 384,343

Another busy day in 'paradise.' It is amazing what I accomplish in one day! It may seem like I can work these long days without consequences, but I have to admit I am tired. I started prepping linner at 7:30am. If I don't, it will be impossible for me to serve a full meal by 1pm. I say that because by 8am, I am juggling caregivers, health care visits, phone calls, and the list goes on. 

This morning a representative from the alarm company came over. I walked through the entire house and property with her, and then for two hours we went through options. I learned about "glass breaks" today! Which are very needed as my parent's house has floor to ceiling windows. 

Glass break detectors complement door and window sensors by monitoring sound or vibration. ... When they detect the frequency or shock waves associated with glass shattering, they sound an alarm.

The alarm person loved how pro-active I was being and especially loved the bicycle lock I recently installed on a gate near my parent's house! Together she and I went around the property placing alarm yard signs and other signage. I like their new service we signed up for because it involves access to armed patrol and response 24/7. 

In between all sorts of tasks, I wanted to share a photo of my upside down pineapple cake. It turns out to be delicious and it is super easy!
One of the things I made today was pasta with a caramelized onion sauce. This sauce takes about three hours to cook, as it takes a while for onions to cook property. But the recipe is delicious and it reminds me of my maternal grandmother, who used to make this dish for us all the time. 

While eating dinner, all three of us were chatting. My dad used to LOVE LOVE LOVE going grocery shopping. Now (putting COVID aside), he has NO interest in going into a store. Tonight I asked him why? His response was.... "I'm disabled!" This type of labeling drives me batty because in all reality my dad is physically strong and though he uses a walker and needs assistance at times, he can ambulate. I feel like I have to constantly remind him NOT to view himself in such a negative manner. With that said, he has this view on one hand, and on the other hand he was telling me and his caregiver that he worries about his current house when he goes overseas! Or when he comes to visit me in DC! All of this points to his cognitive impairment, as he has no insight at all that he is no longer able to travel independently much less function on a daily basis without his caregiver. 

So I have that dynamic to balance as well as the emotions my mom feels about my dad's decline and her discomfort with having strangers coming and going in her house all day! It is very difficult being a caregiver 24/7, with no relief or break in sight. I honestly do not know what the solution is given that I am 2,500 miles away. As it is, I am here every other month, and until this trip, I thought I was being helpful. However, as more time goes by, I notice that my mom is progressively more and more exhausted and therefore, even my visits every other month don't seem to be cutting it. 

January 12, 2021

Tuesday, January 12, 2021

Tuesday, January 12, 2021 -- Mattie died 589 weeks ago today.

Tonight's picture was taken in December of 2007. Mattie was five years old and that evening we took him to Brookside Gardens. Their light display was wonderful and it involved walking through the Gardens, which Mattie loved. Despite that it was freezing, it was a real adventure and one I will never forget. 

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

  • Number of people diagnosed with the virus: 22,832,420
  • Number of people who died from the virus: 380,540


Given all that I juggle each day, I find that setting up linner (lunch/dinner) at 7:30am is my best time. Mainly because by 8am, my dad's caregiver arrives and from that point on until noon, I am working to manage her as well as helping my dad with his cognitive and physical therapy exercise. 

This morning, I put together a mini-Thanksgiving dinner. I have to admit the last time I ate a turkey drumstick was when I was a child! Whenever I have cooked a turkey, I always reserve the legs for my guests. 

This morning was a thorough show! I am trying to process through all the paperwork my mom gave me. The problem is most of the phone calls I need to make regarding these documents involve having my dad on the phone. Which means that he has to be cognitively sharp to do this, so we are talking 8am to noon. After noon, my dad gets tired and by 3pm, he is fogged out. I truly do not like making these personal type calls with my dad's caregiver present, but I have no other choice. The first call was about insurance and literally I was in the que, waiting for 60 minutes until a representative got on the phone. By that time, I was ready to scream. Mind you after waiting for 60 minutes, the representative couldn't even answer any of my questions! That always instills confidence! 

After that call, I then called my parent's alarm company and spoke to them about enhancing their service with nightly patrols. A representative from the company is coming over tomorrow morning to talk with us about this service. Given my intruder experience on Saturday, I am working the problem the best I can. 

This afternoon, I installed a bicycle type lock on this city gate. As the intruder walked along the LA River, and opened this gate and helped himself in. 
This evening, after cleaning up linner, I baked an upside down cake, and then went for a walk with my mom. These walks are necessary for our mental sanity. While walking we noticed this big green ball of leaves in a sycamore tree. After doing some research, I learned this was a drey! I never heard of a drey before. A drey is the nest of a tree squirrel or a flying squirrel. Dreys are usually built of twigs, dry leaves, and grass, and typically assembled in the forks of a tall tree. 

January 11, 2021

Monday, January 11, 2021

Monday, January 11, 2021

Tonight's picture was taken in December of 2007. Mattie was five years old and it was the last "normal" Christmas we had together. It is hard to believe that a year later, Mattie was diagnosed with cancer. That evening we took Mattie down to the National Mall to see the Nation's Christmas tree. It was a family tradition, and I am so glad we made the time to do these things and to take plenty of photos. 

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

  • Number of people diagnosed with the virus: 22,612,384
  • Number of people who died from the virus: 376,051

It was another crazy day in "paradise." My mom and my dad had doctor appointments today. Two different doctors, at the same time. So I dropped my mom off at the doctor and then drove my dad and the caregiver to his doctor appointment. Fortunately my mom's doctor isn't far away from her home, so she could walk back to the house once she was done. 

While waiting for the doctor to come in to examine my dad, my dad's caregiver asked me in front of him whether he has a DNR ("Do Not Resuscitate"). HONESTLY!!! I can't think of a more insensitive and out of touch question and conversation! This is the same caregiver who had me cleaning the inside of trash cans and cleaning windows! I feel it it important to put her personality into context. Because at times you just want to throttle her. In any case, because she was persistent, I said NO my dad doesn't have a DNR! However, I am my dad's medical power of attorney and therefore know his wishes and can execute on them. She did not like this answer and kept at me about a DNR. It got worse, she then proceeded to tell me what a DNR is! 

That I did not crown her on the head right then and there was a feat. Peter and I absolutely know what a DNR is, as Peter had to complete one for Mattie. So YES I KNOW WHAT A DNR is!!! Clearly my dad was listening to all of this, and I sensed his anxiety. Therefore, I said my dad is in a much better place physically and the need for a DNR is NOT needed. 

But specifically my dad's medical power of attorney documents his "choice not to prolong life"............................

I do not want my life to be prolonged if (1) I have an incurable and irreversible condition that will result in my death within a relatively short time, (2) I become unconscious and, to a reasonable degree of medical certainty, I will not regain conscious (3) the likely risks and burdens of treatment would outweigh the expected benefits

After the doctor's appointment, I dropped my dad and his caregiver back home and I went to the grocery store. I always feel like I am playing beat the clock and the caregiver leaves at noon, and anything outside the house has to be done before that point. Not easy, as we are involved in cognitive brain games and PT exercises altogether. 

On top of everything else, I also balanced a visit from an electrician to address the installation of security motion sensor lights and the exterminator to address the rat issue outside. Cooked another big meal, served it, cleaned it up and  managed my dad's bathroom issues from irritable bowel syndrome. When I tell you I never sit still I am not kidding. There is no peace and day in and day out of this produces a very bad quality of life for me and my mom.

January 10, 2021

Sunday, January 10, 2021

Sunday, January 10, 2021

Tonight's picture was taken in December of 2007. That evening we took Mattie to Peter's office holiday party. The husband of one of the founder's of the company looked just like Santa. Mattie got a kick out of this fellow and as you can see I snapped a photo of them together. Mattie had a great time at the party and even got to pick a gift from the company's grab bag! I will never forget the gift as it was a light up ceramic gingerbread house. 

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

  • Number of people diagnosed with the virus: 22,300,696
  • Number of people who died from the virus: 373,669

Given yesterday evening's intruder on the property, I went to investigate the area this morning. I took this photo from my parent's front door. You will notice straight ahead a wooden gate door opened by the driveway. We installed a lock on that gate door.
When you open the wooden door, you will begin to see city of Los Angeles property and the LA River. It isn't like a typical river that we think of. Instead, the LA River looks like a catch basin for rain water. So most of the time it is dry, expect during rain storms, and then it can be raging. 
Once you walk through the gate, you can see big buildings across the way. This is NBC and Universal. So across from the LA River, there is a lot of security 24 by 7. 
After walking through the gate, if you make a left turn, you see this. This is where I found the intruder trying to scale the wall. 

The owner of my parent's house says no one ever comes back there! That this was an isolated incident. WRONG! This morning, I found graffiti on the wall to the right of the tree (see it in purple) and beer bottles and other garbage which I picked up and disposed of. 

If you walk through the gate and turn right, this is what you see. 
After turning right, I kept walking and found this tall metal gate open. So it would be easy to walk along the river and land up at my parent's house. Keep in mind that this is all parallel to my parent's driveway. 
Needless to say, I closed the gate and am working on getting a lock for this gate. There is barbed wire on top of the fence and gate, so I think if the gate is locked, that would be an extra layer of protection. 

The area where my parent's live is filled with giant sycamore trees.  These are very messy trees, constantly dropping leaves! But last night these leaves signaled to me that someone was there. As you walk on them, they make a loud crunching sound. 
I had a request today for beef stew. A very labor intensive recipe, and not a great match for my busy day. 
The same caregiver who told me to clean out the inside of trash cans last week, started on me about the windows. It is true the windows were a mess and the garden has many spiders who spin webs all over the place outside. So today, I took it upon myself to clean the windows. I know it is hard to tell from this photo, but the windows are now crystal clean. 
The windows in the kitchen are now clean too. It is truly laughable that I added this to my already very full list of things to do!

January 9, 2021

Saturday, January 9, 2021

Saturday, January 9, 2021

Tonight's picture was taken in December of 2007. Mattie was five years old and was at the US Botanical Gardens. A family tradition around the holidays. While walking around the warm and humid Gardens, which was wonderful in the cold days of winter, we came across this LONG plant. Mattie stood underneath it and we laughed because it looked like he had a big head of green hair. 

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

  • Number of people diagnosed with the virus: 22,129,231
  • Number of people who died from the virus: 372,384

It was another long day in "paradise." Frankly practically everything has happened to me here. So why not add an intruder and calling the police to the mix!

This afternoon, after I cleaned up linner and my dad was relaxing in his chair, my mom and I went out for a walk. We find this is the best way to manage the daily chaos and stress we are coping with. 

While walking up the driveway, I heard a noise coming from the side of the house. At first I thought it was our resident raccoon. But as I got closer, something did not seem right. 

So I had my mom get in the house and I went through the house to the backyard. Mind you it was around 5:45pm, so by this point it is dark out. I included this photo that I took two weeks ago. On one side of this wooden door is our driveway and the other side is land that runs along the LA River. The LA River is completely fenced off from the public. So to walk on this land by the River, one would have to scale and climb tall fences. 

In any case, the noise I was hearing was coming from behind the wall/gate. I was able to determine that what I was hearing was a person walking on very dry leaves. So there was a lot of crunching of leaves. So I shouted out...... is there someone there? WHO'S THERE?!! I CAN HEAR YOU. At which point, a male responded that he was there and was trying to climb through! I told him if he comes over our wall, he will be on private property and he has to leave NOW. He asked me how to do that! I told him to retrace his steps IMMEDIATELY and leave. 

I couldn't see this man, as it was dark and I had no way to climb up the wall where he was located (as he wasn't near this gate, which I could have easily climbed). I ran into the garage to grab a ladder but by the time I got back he was gone. I could hear him crunching on the leaves and walking away from our home. I did call the police and filed a report, but the police wouldn't come over because I never saw the person in question. 

I contacted the owner of the house and also contacted the neighbor who shares a driveway with us. She is getting a lock for her gate (surprisingly enough she doesn't have one now), as she has the same issue as we do....... with her driveway running along the area near the LA River. Once the owner of my parent's house got here, we walked the land by the LA River and saw no one there now. But we will be going to walk this area by the daylight so that I have a better understanding for how people maybe able to get to this enclosed area. 

Needless to say, I was shaken up and given how stressful days are here, this is the last thing I needed this evening. I am not sure what would have happened if  hadn't heard that noise tonight or if I hadn't gone out to investigate? My guess is he would have jumped into our backyard. 

January 8, 2021

Friday, January 8, 2021

Friday, January 8, 2021

Tonight's picture was taken in December of 2007. Mattie was five years old and that day we took him to the US Botanical Gardens. It was a family tradition, because the Gardens would decorate for the holidays and have multiple toy train displays which Mattie loved. In addition, it was usually cold and depressing outside, and yet walking into the Gardens was like visiting the tropics. It was warm and humid inside! As you can see, Mattie posed in front of the US Capitol model. All the Gardens' models were made out of plant material, like pinecones for example!

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

  • Number of people diagnosed with the virus: 21,846,815
  • Number of people who died from the virus: 368,367

I think the amount of intense work I am doing here in Los Angeles, has caused my right hand to develop both carpal tunnel syndrome and a trigger finger. My first experience with carpal tunnel was right after pregnancy. I was 50 pounds heavier from my pregnancy and the swelling in my wrist was causing pressure on a nerve. I literally would have a numb arm and hand which was a major problem as a new mom who had to use her hands to help her baby! If I overuse my right arm and hand, I do get flare ups of carpal tunnel. Which is what I am experiencing now. However, whenever this happens, it takes me right back to 2002. It is one of my physical reminders that YES I once had a child and was a mom. 

Carpal tunnel isn't a new problem for me, but a trigger finger is. I assume this is the issue. My middle finger aches and it is hard to bend and when I do bend it, it snaps back out. When I return home later next week, I will have to address this problem because I do not want it to get worse. 

Here is the highlight of my day! After I served and cleaned up "linner," my mom and I went for a walk. We try to do this daily. Along my journey, I came across this cute orange kitty. He came right over to greet me and was a very loving fellow. 

January 7, 2021

Thursday, January 7, 2021

Thursday, January 7, 2021

Tonight's picture was taken in December of 2008. That evening, Mattie joined his cousins and some preschool friends for Zoolights at the National Zoo. It was our first and last experience walking through the zoo at night. I am so glad we took Mattie and that we tried to make the most out of every day of his life. 

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

  • Number of people diagnosed with the virus: 21,543,310
  • Number of people who died from the virus: 364,735

Today was quite the day. Besides my typical day of getting up at 6am and dealing with cleaning, cooking, caregiving, brain exercises, and my dad's physical therapy routine, I also landed up sweeping my parent's entire street. You read this correctly! Why was I doing this? Not because I had nothing better to do, but because there was broken glass up and down the street! It was a total mess. Not only could this impact car tires and pets, but I was worried about my dad who takes his walker up and down the street for his twenty minute daily walk. So we must have looked like a show today. My dad with his caregiver and walker, my mom following with my dad's wheelchair, and me with a garbage bag, broom, and dust pan. I honestly don't understand why our neighbors did not sweep the glass in front of their own houses! Why did I have to do it? Naturally I know the answer.... its the free rider problem. Someone else will take care it!!! I was that someone.

While in my parents garage a week and a half ago, I was working in the garage closet and noticed rat droppings. Being a city dweller, I know RATS! So I called my parent's exterminator. Thankfully the problem in no where inside the house, but I want to get on top of this so the problem isn't outside either. So I met with the exterminator today and he is addressing the problem. But that led to a clean out of the garage and I removed all of the rat debris. Honestly just when I think it can't get any better, it does!

Things come in threes! While going out to get the mail tonight, what did I see?! Two eyes staring at me.... a big raccoon. He wasn't moving and neither was I. It was a meeting of the minds. I told him to move along, and thankfully he complied. 

January 6, 2021

Wednesday, January 6, 2021

Wednesday, January 6, 2021

Tonight's picture was taken in January of 2008. Next to Mattie is Charlotte. Mattie considered Charlotte his "girlfriend." These two met each other on the first day of kindergarten and bonded immediately. Charlotte always said that she and Mattie were going to be roommates in college, and Mattie even gave Charlotte a plastic ring, because he said he was going to marry her. Mattie was invited to Charlotte's birthday party and sat right next to the birthday girl. Charlotte was only 6 years old when Mattie was diagnosed with cancer. Yet her friendship never waved, she visited Mattie in the hospital throughout his treatment and her devotion to her friend continues even today, as Charlotte helps Mattie Miracle raise money!

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

  • Number of people diagnosed with the virus: 21,279,163
  • Number of people who died from the virus: 360,741

I think there is something to be said for chaos on both the micro and macro level. That is how I am feeling. My micro concerns are traveling every other month to Los Angeles, to help manage my dad's care and support my mom. That alone is a lot to cope with, but then we also have national chaos going on all around us. Not only COVID and lockdowns, but civil unrest in my home town of Washington, DC. I find all of this is wearing and makes me feel overwhelmed, at times helpless, and depressed. 

It was another full day here as always and besides the physical toll of providing non-stop caregiving, there is an emotional impact. It is very hard to see my dad transformed by dementia. He was once a man eager to take on challenges, thrived on doing new things and encouraged the rest of us to get on board. He is the complete opposite now. At times you look at him, especially while he is eating, and he looks FAR AWAY! Absolutely zoned out and focused on eating, however, he did admit to me that he can't remember whether he ate or not, and therefore can't determine or feel when he is hungry or full. In so many ways, I feel like I am running an assisted living facility and when I have a moment of time (which is rare), I reflect and I think to myself what a waste of time. All these years, I have lived on one coast and my parents on the other. This was the time when we should have lived closer to each other, and have grown together. So this leaves me balancing anger and disappointment for my parents decision to move back to California in 2005 (after they sold their house in California, they moved to Washington, DC to be closer to us and Mattie, but after three months of our weather, they returned to LA). 

Seeing all that I am doing for my parents makes me worry about Peter and me. Who will be doing caregiving for us as we age? The answer is no one. We will have to be self sufficient and plan for our own aging, which is scary, because I know first hand how vital it is to have an advocate who is able bodied and mind. Perhaps I am just tired, but all of this is bringing me down and making me feel like I don't have a future. Life hasn't gone at all like I would have hoped or wished. 

January 5, 2021

Tuesday, January 5, 2021

Tuesday, January 5, 2021 -- Mattie died 588 weeks ago today. 

Tonight's picture was taken in December of 2008. If you look closely, Mattie was in the center of his school's football team photo. We received this as a gift from the two head coaches of the team. They came over and hand delivered this framed photo it to Mattie. Mattie had the opportunity to meet the team several times and though these players were much older than Mattie, they were very kind and gentle with him. 

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

  • Number of people diagnosed with the virus: 21,042,929
  • Number of people who died from the virus: 357,132

This morning I received a text message from a friend of ours. We met Kristen, a pediatric social worker, when Peter and I served on a bereavement panel at a local conference in Washington, DC. Kristen was one of the panel's moderators. This panel took place shortly after Mattie died. So needless to say, our grief was raw and very transparent. Nonetheless, Kristen made an impression on me, because of her demeanor, insights, sensitivity, competence and compassion. Since that panel presentation, we have remained connected!

Today Kristen wrote to me because it came to her attention that her county's school board was creating an annual memorial day within the school system in order to remember and honor the life of a child who died. Given Kristen's experience as a social worker and working with many parents whose children have died, she is very in tune and sensitive to the life long grief child loss can produce. In other words, if a school system decided to acknowledge and celebrate let's say "Mattie Brown day," how would other bereaved parents within the school system feel about this? Was their child's life not worth celebrating, remembering, and basically not as important as "Mattie Brown?"

The loss of a child is very difficult and no two parents may feel the same way about the manner in which their child is memorialized. The manner may differ but what seems to be a given is that bereaved parents observe, listen, and absorb how our society reflects on the loss of their child. Unfortunately the lives of all children who have died do NOT receive the same attention, which can be very painful for those who remain behind. Which is exactly what Kristen is tuned into and is concerned about the reaction that bereaved parents within this school system will have to a special memorial day named after ONE child. What Kristen is expressing seems like a no brainer to me, yet she is getting push back from the school system. Honestly I have NO words, other than, the decision makers truly do not appreciate child loss and the impact of this devastation on family members. All I know is I would be deeply hurt for example if I heard that Mattie's school decided to create an annual memorial day for another student and yet NOT consider Mattie. 

Meanwhile it was another full day in "paradise." I am worn out and as Scarlet O'Hara used to say, "after all tomorrow is another day."