Friday, November 11, 2016

Friday, November 11, 2016

Tonight's picture was taken in November of 2007. Mattie was five years old and I took him to visit Peter at his office. Mattie enjoyed drawing on Peter's dry erase board. Notice the tell tale Mattie symbol.... the sun! Mattie typically had the sun incorporated into all his drawings and paintings. I never mentioned this to him, he just naturally included it! Which is why the sun is the symbol of Mattie Miracle. 


Quote of the day: Far be it from me to stand between a girl and her Skittles. ~ Sarah Weeks

Thankfully Peter had the day off from work today in honor of Veteran's Day. This is a first for Peter's company, because over the past decade everyone worked on this day. 

With Peter home, we were able to accomplish a lot together. We picked up more candy and delivered it to my friend, Ann's, home. What I am standing in front of is UNSORTED candy. Candy that our volunteers will comb through and sort. I assure you this is no easy task. On the left of the photo (in the shadows) are grey bins. This is candy that has already been sorted. 

Meanwhile at Mattie's school today the Robotics Club helped with candy sorting! The teacher is Richard Rho, and is he on the far right in the photo. Richard is a donor and a true supporter of Mattie Miracle. In fact, he is having his class work with Mattie Miracle on a 3-D printing project that will benefit children in the hospital. 

The students busy sorting! You can see they are absorbed in this task. I have found that people of all ages love candy sorting. It is a task that truly requires NO technology, but instead bonding and talking. A rarity these days. 

More sorting!

Tomorrow Peter and I are having friends over, including our God Daughter, Charlotte. In honor of this visit, I am making a three course lunch. I made a chocolate cake from scratch! This cake recipe is truly a winner. 

Peter and I made curried butternut squash/apple soup together, along with other goodies. It was a long day in the kitchen and Sunny was truly wondering about us. At several points, he was just sitting in the kitchen watching the whole process and wondering...... when are we going for a walk!???!

Thursday, November 10, 2016

Thursday, November 10, 2016

Tonight's picture was taken in November of 2007. Mattie was five years old and we were visiting Roosevelt Island. Which was a regular occurrence on the weekends. Mattie loved everything about the Island. It is close to home, almost in the heart of the city, and yet peaceful. We would walk, check out the water and all the birds, and basically explore nature on Mattie's terms. I remember after Mattie died Peter and I did not visit Roosevelt Island for quite some time. It just symbolized what our life used to look like.... a family of three. 




Quote of the day: To conquer frustration, one must remain intensely focused on the outcome, not the obstacles. ~  T.F. Hodge

I spent four hours today at the DC Court of Appeals. Why? For my role as the chair of the Board of Professional Counseling in DC. One of the tasks as the chair of the board is presiding over ethical violation hearings for applicants and licensees. In any case, an applicant did not like the board's decision at his hearing and therefore escalated his complaint to the court. However, the court did not want to hear his case and instead recommended that he go to mediation with me. Mediation was a new experience for me, but guess what, it was a new service offered with the DC Court of Appeals. The mediator had her first case today, and it was with us. 

For reasons I can't discuss, it was a very challenging, frustrating, and stressful four hours. Fortunately with mediation you start with all parties in the room, and then the mediator can separate each side and she can caucus with each party. In this particular case, this was the ONLY way we could get things done and come up with an equally agreed upon resolution. 

In any case, it is almost 10pm, and I finally stopped moving for the day. It has been an absolutely exhausting day and on top of that I have candy coming from ALL over the place! I will have to capture some photos on this overall chaos!

Meanwhile, I received this beautiful composition on Facebook today. Tim Beck, my Facebook friend, found these wonderful paintings Mattie created and he combined them all to form what you see here. I should let you know that ALL these paintings were created while Mattie had cancer and was in the hospital. 

I am SO happy Mattie loved art, because while Mattie was creating, I thought..... how wonderful and beautiful, and so happy he has this outlet. Now that Mattie is gone, I look at his art work, and feel that it contributes to Mattie's legacy. Something I would NEVER have thought of or even guessed was a possibility while undergoing treatment. Mattie's art also reminds me that he was at one time very real and a part of our lives. The mind can get very confused with time, and I stand by my feelings that time doesn't heal but instead hurts. Hurts in a more emotional manner, rather than the raw and gut wrenching pain that you experience with a fresh loss. 

Wednesday, November 9, 2016

Wednesday, November 9, 2016


Tonight's picture was taken in November of 2006. It is one of my favorite photos that I snapped of Peter and Mattie. They both had their Thanksgiving day colors on and if you knew Mattie then you understood that Peter had his arm wrapped around Mattie to get him to sit still for a photograph. Mattie was the ultimate multi-tasker and sitting still wasn't his forte. Yet despite moving around, he always was very clued in on happenings around him! Nothing got passed Mattie's ears or eye sight!!!




Quote of the day: Freedom is what we do with what is done to us. ~  Jean-Paul Sartre

I was invited to attend a Pediatric Palliative Care conference in Washington, DC today. I think palliative care is a very misunderstood form of care because most people associate it with end of life care. Meaning that the patient is dying. But actually this is NOT the case. Palliative care is specialized medical care for people with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. In an ideal world, every patient would be assigned a palliative care team that works besides one's doctors and nurses to try provide holistic and coordinated care. Without such a team, families are definitely left to heavily advocate for patient needs, and in many cases to also serve as the case manager of treatment. Why? Because in a hospital setting physicians and teams tend not to effectively communicate with the other. Yet they are all treating the same patient! Which is a major problem in medicine.

I got to hear about 90 minutes of case studies presented by nurses. These are nurses who are trying to innovatively and effectively integrate palliative care into pediatric medical practice. However, I was the only parent advocate in the room. I have to admit every conference I go to that involves childhood cancer, I am left pausing! Pausing because it is very different hearing this content as a parent who lost a child to cancer, versus hearing it as a clinician or researcher. I say this time and time again..... you can work in this field daily, but it is quite different than living it personally and watching your own child affected along with your family. As I heard many of the case/research studies today, I had all sorts of internal commentary mainly because what they think will be helpful, in my perspective is questionnable.  

While I was at the conference, this was what was happening at my friend Ann's house.... More candy sorting. 

From left to right are:
Cecile, Debbie, Mary, and Ali.

Cecile and Debbie, I met when Mattie was in kindergarten with their children. Mary and Ali, I met through Mattie's preschool. Ali is my friend Margaret's daughter. Margaret was Mattie's first preschool teacher and became a very close friend of mine. Margaret died an untimely death two years ago, as she had a very aggressive battle with ALS. As I say to Ali all the time... she picked up with Mattie Miracle where her mom left off. 

This cutie is Parker, Ali's son. Margaret would be beyond thrilled that her grandson carries on the tradition. I was told Parker did a great job sorting candy today. I am sorry I missed seeing him in action. 

You can see how Parker was analyzing the candy before bagging it! Priceless no?

Tuesday, November 8, 2016

Tuesday, November 8, 2016 --- Mattie died 373 weeks ago today. 

Tonight's picture was taken in November of 2005. Mattie was three years old. That weekend we took him to the National Geographic museum. Ironically that was our first and last visit to that museum. But we had a good time. Outside the museum entrance is this bronze ape. We thought this photo was priceless, so naturally I snapped it! So glad I did, because it is precious to me!


Quote of the day: All I really need is love, but a little candy now and then doesn't hurt! ~ Charles Schulz

It has been a non-stop day for me and it is still going on! Candy is coming from just about everywhere..... through the mail, drop offs, and pick ups. This is the candy left for me at our complex's front desk!

Meanwhile, I went to the Lab School today in Washington, DC and they made a 500 pound candy donation. YES 500 pounds and I assure you it weighs a lot and is a pip to transport. It took up my entire trunk and half of my back seat. 

But literally I drove ALL over town today. My day first started in Northeast DC, where I dropped Sunny off for his third and final treatment. THANKFULLY! I am not sure who it is harder on.... Sunny or me. Mainly because each way is about two hours of commuting time. 

After dropping off Sunny, I went to Georgetown to the Lab School. The Lab School has been a big candy supporter of ours for years and we are happy they select Mattie Miracle each year. 

After the Lab School, I then drove to Bethesda, MD. After that second pick up, my entire back seat was full of bags and candy. I literally had no choice at this point, but to drive to my friend's house, and drop off all this candy. Otherwise, I had NO room in the car to pick up Sunny from his heart worm procedure. In the past I stored the candy in our home. But the logistics are just too difficult for me, and I am not supposed to lift too many heavy things. Therefore, I am grateful that Ann allows us to transform her home into a candy factory. Literally half of Ann's gargage has stacks of bins full of candy. It is rather overwhelming and don't get me started on the smell. 

Literally I have been all over DC, Maryland and Virginia today. At 4pm (rush hour), I had to head back to Northeast DC to pick up Sunny at the vet. It was a nightmare commute, in which I was in the car for two hours ONE way, and then another hour coming home. This is what I saw for hours. On one street alone, it took me 40 minutes to move three blocks. I saw road rage all around me, in which people behind me were so frustrated they started driving on the other side of the road.... almost causing a head on collision right in front of me. 

I am thrilled Sunny's procedures are done because if I never go back to this vet, that would be fine with me!

Here is another candy donation we received today thanks to Fairlington Dental. Like most dentist offices, they have a candy buy back program after Halloween. Patients get paid a $1 for every pound of candy brought in, up to 30 pounds. We are honored that Fairlington Dental chooses to donate their candy to Mattie Miracle! 

Fairlington Dental is also a very loyal corporate sponsor of ours and we truly appreciate the support in all ways. 

My friend, Jane, goes to pick up Fairlington Dental's candy and then organizes candy sorting parties to sort all of this! This is deeply appreciated because it takes HOURS upon HOURS to sort through candy. Sorting is crucial to the process because it removes half eaten and inappropriate candies, and sorting candy preserves it longer in ziploc bags for hospital storage. Otherwise things start tasting like one another, and given this candy is a year's supply for each hospital, the importance of preservation is vital. 

Monday, November 7, 2016

Monday, November 7, 2016

Tonight's picture was taken in November of 2005. Mattie was three years old and why I snapped this photo was because Mattie was pretending to be a bridge. He wanted his lego truck that he built to go underneath him. Mattie was patiently waiting for me to push the truck under him, but before I did this, I captured the moment in time. Also notice the stairs. Mattie used to line his shoes on the stairs. Some people have a mud room, a closet, or a cubbie for shoes. Mattie preferred having them lined up so he could select the shoes he wanted before leaving home. 


Quote of the day: If you don't own a dog, at least one, there is not necessarily anything wrong with you, but there may be something wrong with your life. ~  Roger A. Caras

Sunny had his second round of immiticide today. Immiticide is an arsenic-containing compound used to kill immature (4+ month old) and adult heartworms in dogs. Given intramuscularly deep in the lumbar (back) muscle. 

When we adopted Sunny we knew he was a heart worm positive dog. This alone would be a deal breaker for some adopting parents, but given I was told it was treatable, I was willing to manage it. But the treatments are extensive and painful.

I dropped Sunny off at the vet at 8am and then picked him up at 5:30. It is a full day production, because after the shot, Sunny needs to be monitored all day. He is also on anti-inflammatories and pain meds. However, Sunny is not easy to give oral meds to. He is very clever, and spits out the pill, regardless of what treat you put it in. At the vet's office, they shoved the pill down his throat.... I on the other hand am neither that skilled or comfortable to do this! 

Sunny literally took to bed and was watching TV when I brought him home!

The trip to the shelter's vet is one for the books. This morning, it was a 90 minute round trip adventure, but this afternoon, it took me 90 minutes to get to the vet and an hour to get home! If the shelter wasn't paying for this costly treatment, I would be going to our local vet. 

We received our first mailed candy donation from NEW YORK.... thank you Cara. Cara is a leader in the Association of Pediatric Hematology/Oncology Educational Specialists, and we are honored to have her as a friend and supporter. 

Cara knows how much I love cardinals, and that when I see one, I view it as a visit from Mattie. So now Cara has given me my own glass cardinal, which is attached to my living room window. Mattie loved our living room window, and in fact, I still have several of Mattie's ornaments and items that he created attached to the window. So the cardinal is in good company. 

Sunday, November 6, 2016

Sunday, November 6, 2016

Tonight's picture was created by Tim Beck, my Facebook friend. I have never met Tim. He lives in New Mexico, but he graciously spends his time helping countless number of parents who lost their children to cancer by creating photo memories. These are all the different compositions Tim has made for us over the years, and he put them together in this wonderful patchwork type quilt. When you look at all 25 of these photos, you are probably saying.... how lovely or how sweet these look. I say the same thing, except for me these are snapshots in time. A time that was once very real, and I can recall each of the moments and contexts behind each of these photos. For me they aren't only a lovely display, they are a visual and bittersweet reminder of what my life used to look like. 


Quote of the day: The mediocre teacher tells. The good teacher explains. The superior teacher demonstrates. The great teacher inspires. ~  William Arthur Ward

About a month ago, I researched pet therapy certification programs, because I truly believe Sunny has the disposition to work with children who are hospitalized. I would love to bring him to Georgetown University Hospital. So I asked the child life staff there, which therapy program they work with. They told me.... National Capital Therapy Dogs (NCTD; 

http://www.nctdinc.org/volunteers.php). There are many different programs in the DC area that allow you and your dog to do pet therapy. However, there are different requirements and also different levels of rigor for each program. NCTD seems to be the most stringent, because step 1 requires that Sunny pass the American Kennel Club's Canine Good Citizen test. Then step two requires a six week training class, evaluation, and a test followed by hands on skills training. The training involves 50-100 visits to a hospital with a volunteer mentor. 

As for step 1, the Canine Good Citizen test is offered by a different organization (NATURALLY!!!), the Capitol Dog Training Center. Sunny is scheduled for his test on December 4, but the training center offers a prep class to pass the test. So I enrolled Sunny and I into this four week prep class. Considering I have never taken an obedience class with a dog, nor do I know if Sunny has had official training, I figured such a class was necessary. 

The American Kennel Club's Canine Good Citizen (CGC) program is recognized as the gold standard for dog behavior. In CGC, dogs who pass the 10 step CGC test can earn a certificate and/or the official AKC CGC title. Dogs with the CGC title have the suffix, "CGC" after their names.The CGC Program is designed to reward dogs who have good manners at home and in the community. The Canine Good Citizen Program is a two-part program that stresses responsible pet ownership for owners and basic good manners for dogs. All dogs who pass the 10-step CGC test may receive a certificate from the American Kennel Club.

We took Sunny to his first prep class today. Have you ever experienced meeting a teacher for the first time, and saying to yourself...... this isn't going to work?! This was the reaction both Peter and I had with the dog trainer today. Within minutes of her speaking, what jumped out at you was  that she is judgmental, rigid, and stressful! There are seven other dogs in the class, besides Sunny, and I would say the teacher set each of these dogs off at any point within the 50 minute session. Fortunately this is just a four week course. But honestly her teaching skills are poor and if Sunny passes the test in December, it will be strictly due to him and not her teaching abilities. 

Meanwhile this is what has been happening at my friend, Ann's house. This is her dining room table, which has been converted to a candy sorting station for the next few weeks. In fact, I would say Ann probably has over 600 pounds of candy right now at her house. She is kind enough to allow me to use her home as our main candy drive drop off site!

We are grateful to supporters for donating 2 gallon sized ziploc bags and plastic storage bins. Since we need bags and bins when we make our site donations. 

Ann's empty bowls are NOT empty anymore. The picture above was the before photo, and this is what it will look like for quite some time, until we process thousands and thousands of pounds of candy. 

All of this candy may sound nice, but in such bulk it is down right nauseating! You can even smell it through ziplocs and plastic bins!