Saturday, December 3, 2016

Saturday, December 3, 2016

Tonight's picture was taken in December of 2007. We took Mattie to the US Botanical Gardens. That was a great place to visit around Christmas time. For many reasons. First of which it is kept as warm as a hot house inside which is deeply appreciated on a frigid day and second because the gardens are decorated for Christmas. They are stunning and magical! That day after touring around Mattie paused under a hanging plant. We got a kick out of it because it looked like his hair exploded! 





Quote of the day: Whoever said dogs can't speak was never interested in learning another language. ~ Mark Winik

Tomorrow is the big day for Sunny! At 2pm, he will enter the dog training ring and get assessed! For the past month Sunny has been enrolled in a Canine Good Citizen Prep class. I am thrilled I took this class because I had a lot to learn!!! Though Sunny is the one being assessed, it is his handler (ME) that ultimately wins it or loses it for Sunny. As he is supposed to follow my lead. 

If I want Sunny to apply for pet therapy school/certification, he must first pass the Canine Good Citizen test. So in essence it is a pre-admission requirement to get into pet therapy school. 

Sunny gets assessed in ten catagories. For the past month in class we have been working on each one of these requirements. For the most part Sunny does great, except for #6. In #6, I have to instruct Sunny to sit. He is attached to a VERY LONG leash, like 15 to 20 feet. He is supposed to sit, while I walk away from him dropping the leash as I go. For the most part, each time I do this, Sunny follows me rather than complies with my command. Believe me I have been practicing this at home too, as Peter made me a make- shift long leash. 

The problem with all of this is Sunny is one of ten dogs being assessed tomorrow. They do not tell you what time is your test. So there is a lot of waiting around in a tight space, watching other dogs being assessed. Not something any of us excel at. 

The hopes is Sunny passes his test tomorrow, and is awarded a certificate that looks like the photo!

Friday, December 2, 2016

Friday, December 2, 2016

Tonight's picture was taken in December of 2007. That day, I visited Mattie's kindergarten class and read them the story of the "Gingerbread Baby." This was a story Mattie's preschool teacher and my friend, Margaret gave to me. She liked the story because it was written by one of her favorite children's authors, but also because the story featured a main character named "Matti!" In any case, that day I read the children the story and then after the story, I brought in homemade gingerbread cookies..... as I always believed in hands on activities! The cookies were huge and could be easily decorated. I made the royal icing from scratch and brought in all the candies. The children absolutely loved it. The actual cookies looked like the gingerbread baby in the book! It was a day I won't ever forget. 


Quote of the day: A little nonsense now and then is relished by the wisest men. ~ From Willy Wonka the movie (1971)

In recognition of the fact that 10,000 pounds of candy is officially delivered, I feel this cute video sums it all up perfectly. It is from one of my favorite movies.... Willy Wonka. I could get a new nickname... the candy lady! Enjoy!!!

The Candy Man:
https://www.youtube.com/watch?v=EPIl0IJjBrw

I drove to Mattie's school this morning and met up with the Dean of Students, Mattie's kindergarden teacher, and five student volunteers who help me deliver the remaining 4,000 pounds of candy!

This was our first stop.... MedStar Georgetown University Hospital. The candy provides a year's supply for our snack/item cart. 

Our second stop was at Covenant House. Because we collect SO MUCH candy, I am able to donate some to two homeless shelters. One is in Reston, VA and the other is in DC. This shelter is for homeless children. This is my third year working with Covenant House and the children absolutely love these treats especially around the holidays.

The student volunteers from Mattie's school were delightful..... hard workers and patient! They also listened to me as I told them a little bit about Mattie Miracle and why we host a candy drive. I wanted to give them context, so I explained that Mattie was a kindergartner at their school in 2008. After completing kindergarten Mattie developed cancer. The school became an important part of our care community. A community which delivered us lunch and dinner everyday for 14 months. In addition, to that, they also gave us gifts and chocolate treats, practically daily. I realized we were lucky on that front because most of the other families in the hospital did not have such incredible support. In any case, once Mattie died, we decided to continue the candy tradition on a larger scale, with the snack cart and candy drives! 

Since I was going to be out all day, Peter took Sunny to work. Believe it or not, Sunny is requested to come in. On days that he doesn't come in, people miss him. That should tell you about Sunny! Sunny has attached himself to Mark, at Peter's office. Apparently Sunny reminds Mark of his late dog. 

In between work and meetings, people play with Sunny! Peter tells me that his colleagues consider Sunny therapeutic to have in the office! 

Thursday, December 1, 2016

Thursday, December 1, 2016

Tonight's picture was taken in December of 2008. Mattie was visited by Scooby Doo in the hospital. But that wasn't the first time either!!! Mattie received many visits from Scooby while in the hospital for over 14 months. Which was fine with Mattie, since he was a SUPER Scooby Doo fan. He practically saw every movie and TV episode possible! In fact, the theme of Mattie's sixth birthday was Scooby Doo and he had a big Scooby Doo cake! I still have the toy Mystery Machine car and plastic figurine of Scooby and Shaggy from this cake. They sit on Mattie's bookshelf in his room. 





Quote of the day: That best portion of a good man’s life: His little, nameless, unremembered acts of kindness and of love. ~ William Wordsworth

This is a glorious sight to me!!! Why? Because this signifies the end of a very successful candy drive. As so many of my blog readers know..... I have been delivering Post-Halloween candy from the Mattie Miracle Candy Drive all over town since the week before Thanksgiving. It is a challenge to sort, bag and store 10,000 pounds of candy, but we did it. Half of it was stored in my friend's garage and the other half at Mattie's School. 

I had the good fortune to visit Mattie's school today and to work with the wrestling team. The team helped us load the delivery truck last year too! They moved over 40 large bins filled with candy today. What would have taken me HOURS or the whole day, took this team of strong fellows FIVE MINUTES! They weren't winded or bothered by the lifting task. Wonderful no? 

In any case, I will head back to Mattie's school tomorrow morning and will ride along in the truck with the Dean of Students, and in tow will be a small school bus with one of Mattie's kindergarten teachers and several high school student volunteers. We need all this man power to help transfer the bins from the truck to each of the locations. Delivering candy is no easy task, because it isn't as simple as driving up to the site and dropping candy off. First we need to take the bins out of the truck and then cart them inside to the location where the bins will be stored. But by noon tomorrow, all 10,000 pounds of candy will be delivered! It is a total thrill to have this behind us!!! But what yesterday proved to me..... people truly appreciate the candy. I was so happy to get this feedback, because it means all this effort is not for waste!

Wednesday, November 30, 2016

Wednesday, November 30, 2016

Tonight's picture was taken on Halloween of 2008. This was Mattie's last Halloween with us. Mattie picked out this mummy costume at the hospital because he felt that it hid the fact that his right arm was operated on and bandaged! Sitting next to Mattie was one of his closest friends from preschool, Zachary. Zachary invited Mattie to his house to trick or treat. However, Mattie moved very slowly and cautiously because he was afraid he would fall and hurt his arm. That night Mattie and Zachary went trick or treating with a group of kids. The other kids were running from door to door and they were encouraging Zachary to do the same and to dump Mattie. Zachary did not do this though. He chose to stay with Mattie, despite the group of kids that dumped Zachary instead. Very telling of what a good friend Zachary was to Mattie. In any case, after they trick or treated they came back in and Mattie was doing one of his favorite things.... NOT eating the candy but sorting it. Mattie wasn't into sweets and candy! This is NOT something he learned from me, it was simply Mattie. 


Quote of the day: I don't know what your destiny will be, but one thing I know: the only ones among you who will be really happy are those who have sought and found how to serve. ~ Albert Schweitzer



What a day today was!!! It started for me by leaving our home at 7:30am and heading to Alexandria, VA. I was invited to a class at Mattie's school, a class who has selected Mattie Miracle for an entreprenurial project. In any case, the class is a 3D modeling class, and they program computers and print models out in 3D. The class has agreed to design a model of an MRI machine for MedStar Georgetown University Hospital. So that child life professionals can use the model to help explain this frightening scanning process to children, before they take a scan. It has been shown that psychoeducation before a scan can reduce the need for sedation. Which can be beneficial since sedation comes with other medical risks. 

To help the class understand the context for the MRI model they are designing, I have created a three part speakers series. Today, I had a mother-daughter pair speak to the class. Bridget is now 24 years old and has been actively fighting Hodgin's Lymphoma for eight years. I met Bridget and her mom, Cathy, at Georgetown University Hospital, as Bridget was diagnosed a couple of months after Mattie. But in essence they were in treatment together. I purposefully selected Bridget and Cathy for the class because I knew they could make childhood cancer come alive for students totally unfamiliar with the disease. In addition, Bridget has an amazing sense of humor, which truly helps others engage with her story. It worked very well. 

Though I noticed the following.... the students developed a list of 20 questions for Bridget and Cathy. I saw the questions before class started and they were excellent. The teacher assured me that the students would be interviewing Bridget and Cathy. However, that isn't what happened. I am not sure if the subject matter was too difficult for them and they therefore felt uneasy, or what. Either case, I ran the interview. Though I am familiar with Bridget's journey, I was so proud of her. She was able to intelligently talk about her disease and the psychosocial impact it has had on her. None of us can truly know how challenging Bridget's life is. Basically she never was able to be a teenager. She was diagnosed at age 15 and has spent all these years in treatment and a hospital (though Hodgkin's Lymphoma has a higher "cure" rate than other cancers, the same isn't true if you relapse with Hodgkin's Lymphoma.... which Bridget has done several times). This isn't how she wanted her life to be, and of course she sees her friends around her going to college and getting jobs. Something she is unable to do. How she gets up each day and faces another day of cancer is truly a remarkable feat. I am not sure her classroom audience understood the depths and horrors of what Bridget and her mom contend with, but I was happy that Bridget shared this reality with us and also talked about her experiences with scans and procedures. I believe this will help students absorb what she was saying and potentially use this information when they create their MRI model. 



While I was in the classroom, this is what poor Peter was dealing with. He rented a Uhaul van and then went to retrieve the remaining candy and loaded it onto the truck for delivery.

That may sound easy, but it TRULY ISN'T! Candy weighs a ton in these bins. In addition, before Peter could load the bins, he had to make sure that all chocolate itemed ziplocs were placed in the appropriate bins, while non-chocolate itemed ziplocs were stored in non-chocolate bins. This is important because some facilities store the candy as we give it to them and mixing chocolate and non-chocolate items in the bins is not a good plan. For many reasons. The candy starts tasting the same, and also chocolate items don't last as long as non-chocolate ones. 

Peter and I drove 162 miles today in total! We covered a lot of territory and made FOUR deliveries. Three of which were in Baltimore, MD. The first delivery was to Children's Hospital at Sinai. In the photo is the child life staff at the Hospital. Mattie Miracle is happy to be launching a Mattie Miracle Snack/Item Cart there in the New Year. Needless to say we made a 2,000 pound candy delivery to Sinai today. 

Our second delivery was to the Hackerman Patz House (Baltimore, MD). This house serves as a home away from home for families caring for a child with a chronic or life threatening illness at Sinai Hospital. 

After our Sinai Hospital visit, half of our van was cleared out! But it was a harrowing delivery day, as it was raining ALL day, and in most locations it was only Peter and I moving these bins and boxes. 

Our third stop in Baltimore was to the Ronald McDonald House. I have been to two other Ronald McDonald Houses in our region, but this one truly stands out to me. Look how excited the staff was!!! They were blown away by the candy and our generosity. They are the ONLY site that has asked the significance of the candy and why I do what I do! So I told all these ladies about Mattie. When Mattie was battling cancer, our care community brought me treats DAILY! Daily for 14 months. I couldn't have made it without that support and I can't tell you how much seeing candy meant to me on a difficult day. So much so, that even today when I am stressed out I have learned to turn to candy! I suppose there could be worse problems. In any case, after Mattie died, I wanted to replicate what our care community did for us, but on a larger scale. So we started the Snack/Item carts and of course the candy drive which serves 4 hospitals, 8 childhood cancer organizations, and 2 homeless shelters. 

Our final stop was in Reston, VA! Not around the corner from Baltimore! We visited the Embry Rucker Community Shelter. I found out about this shelter from a friend of mine, who actually lived at the shelter for a period of time. I like to support this shelter in honor of my friend and I am so happy the shelter accepts candy. Because not all shelters will! 

This photo is misleading, but we left the shelter with a ton of candy! They were deeply appreciative, so much so that a 73 year old homeless man at the shelter came over to talk with me. He wanted me to know what a difference this candy makes in the life of a homeless person. He said it helps morale, it provides energy on cold days, and it also makes them feel special and worthy of such a sweet treat. Though Peter and I were doing candy delivery for over six hours today, it is this conversation with this man that has stayed with me. He has been living on the streets for thirty years and he told me how he sleeps on a bench at night. Yet despite the hardships and struggles he lives with, he has an incredibly upbeat and positive attitude. It just gives you pause. 

Tuesday, November 29, 2016

Tuesday, November 29, 2016 -- Mattie died 376 weeks ago today. 

Tonight's picture was taken in February of 2009. On that particular day in clinic Mattie's art therapists were designing a hand painted sign for the inpatient pediatric units. Both Jenny and Jessie asked if Mattie wanted to put his hand print on the sign! He said.... NO!!! Then I suggested his foot, and Mattie jumped at the chance. Mattie used "Curious George," the only limb not operated on or impacted by cancer. To this day the sign and Mattie's foot print remain on the fifth floor of the hospital.


Quote of the day: When you cease to make a contribution, you begin to die. ~ Eleanor Roosevelt

I visited MedStar Georgetown University Hospital today with my friend Ann (who is also a board member of Mattie Miracle). We had the opportunity to push the Mattie Miracle Snack & Item cart around the pediatric inpatient units with Jane, our philanthropy contact at the hospital.

I personally believe it is vital to push the cart myself! It helps me see the effectiveness of the cart, how it is being utilized, and to interact with the families we are trying to support. Naturally I want to stock the cart with items that will be helpful, and I can only know this by seeing it for myself. 

Do you see the Georgetown sign I wrote about in the background? Mattie's little red foot print is on the top right hand corner. 


I got to see the reactions of parents and children for myself today as the cart revolved around the units! It was a great experience. Though the cart is for family members, if parents and nurses allow pediatric patients to visit the cart, we naturally welcome that. One child was so excited today that she filled up an entire drawstring bag with candy! Her whole face was beaming. So many parents can't believe that someone is there to offer them items for FREE. I interacted with many grateful and gracious parents and couldn't help but remember when I was in their shoes.... deeply stressed out and sleep deprived. 

While at the hospital I also ran into Mattie's lung surgeon, Dr. Chahine, who I absolutely love! He is not only a very competent surgeon, but he has an incredible and compassionate bedside manner. He visits all his patients post-surgery.... he doesn't just send a resident to do follow up! Dr. Chahine is also a Mattie Miracle supporter! In addition, I ran into several of Mattie's nurses, our case manager, and the wonderful administrative lady who works the front desk of the PICU. It was like visiting my second home in a way, and given that Mattie died on a Tuesday, it seemed even more meaningful to visit today. 

Monday, November 28, 2016

Monday, November 28, 2016

Tonight's picture was taken in December of 2008. Mattie was home and recovering from his limb salvaging surgeries. Our whole living room looked like a hospital room. Our couch was moved in front of our windows, so we could place a hospital bed where the couch used to be. In addition, we had IVs, a commode and the list went on! 

Yet in the midst of all of this, we were desperate to try to get Mattie to eat something. That day what Mattie requested was chinese food. So rest assured whatever he felt like eating, we found it!




Quote of the day: We can only be said to be alive in those moments when our hearts are conscious of our treasures. ~ Thornton Wilder

When I tell you Los Angeles has a traffic problem I am NOT kidding! It took us 2.5 hours to drive to the airport today from my parent's house. Which is ridiculous since the distance between these two points is about 40 miles!!! 

Despite leaving the house at 9:20am, I did not get to the airport until 11:45am. Mind you the plane boarded at 12:10! I literally flew out of the car and ran from the arrival terminal to the departure terminal. It was impossible to drive the car into the departure part of the airport, that is how bad it was, so my parents dropped me off at arrivals. 

When I checked my luggage the American Airlines person told me that I just made it because a minute later, they wouldn't have been able to guarentee my luggage getting onto the plane! 

Needless to say, I was totally frazzled by the time I walked onto the plane. I never stopped moving and fortunately I can move quickly. This was my sight at take off!

Meanwhile about four hours later, I flew into DC. This is my view of Rosslyn, VA! I am now home and Sunny and Indie are getting used to my presence again!

Sunday, November 27, 2016

Sunday, November 27, 2016

Tonight's picture was taken in December of 2008. Mattie was home recovering from his second limb salvaging surgery. After that surgery Mattie was wheel chair bound. Despite the pain and medical traumatic stress Mattie was contending with, we tried as much as possible to give him opportunities to be a child, to experience the season, and though he couldn't run, we tried to be his legs for him. 










Quote of the day: This is the finest measure of thanksgiving: a thankfulness that springs from love. ~ William C. Skeath

This afternoon we went to see a play entitled, A Nice Family Christmas. The plot is as follows............

It's Christmas Eve in Minnesota. A young newspaper reporter, on the brink of being fired, has been assigned a last chance story about a typical family Christmas - his family. He goes home to his recently widowed mother, his crazy uncle, and eccentric grandmother as well as battling siblings and neurotic spouses with no shortage of juicy secrets and family squabbles. 

The play received an excellent review (see below), but have you ever watched something so profoundly dysfunctional and said to yourself.... that isn't funny!!!? This is where this play borders on, or at least it did for me. It is trying to address difficult issues in a funny way through family dynamics, but in the end it seemed more grating and trite than anything else. I did not laugh more than a couple of times during the play and found no redeeming moral life lesson, which I would hope for given that it is a Christmas play! 

REVIEW:
http://www.broadwayworld.com/los-angeles/article/BWW-Review-A-NICE-FAMILY-CHRISTMAS-at-GROUPOrep-20161107

Though I came for a visit during Thanksgiving, Christmas lights have gone up all over town. In a neighboring community to my parents is the “Starlight Hills.” The Starlight Hills group of homeowners has been meeting socially since 1960 and counts five past city officials as well as very “active” current members of the community among its members. 

They are best known for placing illuminated “Holiday Stars” in their front yards during the Holiday season, the group meets monthly to plan social gatherings and outings as well as to keep updated on what’s happening in their neighborhood and in the city in general. The group is not a formal homeowners association, but rather epitomizes the best what the term “neighborhood” is all about in Burbank.

It maybe hard to determine from these photos, but these stars are HUGE. Some are at least 6 feet tall, if not taller. The stars capture your attention immediately and it is very special to be driving through these twinkling hills in the holiday season. 

Just image driving up hills at night, and seeing one beautiful star after the other. It is unique and magical. 

Saturday, November 26, 2016

Saturday, November 26, 2016

Tonight's picture was taken in November of 2008. Mattie was recovering from his second limb salvaging surgery and truly was incapacitated! Instead of Mattie leaving his room for hospital activities, the activities came to Mattie. Which is why I love Linda, Mattie's child life specialist. She truly made the unbearable more human. I can tell you that it was a Friday in this photo! How do I know? Because every Friday the Chemistry Club from the University would come to the pediatric units and do a hands on activity with the kids. Mattie LOVED Chris, the president of the Club. Chris understood that Mattie was bright, inquistive, and loved all the experiments they performed before his eyes. On this particular day, the chemistry club came into Mattie's room and they made all sorts of Gak (a slimy playlike substance) together. 



Quote of the day: Thanksgiving Day comes, by statute, once a year; to the honest man it comes as frequently as the heart of gratitude will allow. ~  Edward Sandford Martin

Today is my mom's birthday. It is very special that I could spend this occasion with both of my parents. Which is why, I told them I was going to take them out to dinner. 

We went to a restaurant called Bistro Garden. The Garden is very special from my perspective for many reasons..... the garden like atmosphere, the holiday decor, the live piano music, the service, and the food!

A close up of my dad and me.

My parents! But check out all the live poinsettias, the evergreens, and the twinkling white lights. To me it is a magical setting. 

For dessert, we had a pumpkin souffle! What an absolutely fabulous treat, and any time I eat pumpkin I think of Mattie. Prior to having Mattie, I despised pumpkin. Mattie LOVED everything pumpkin and because I got used to making pumpkin bread, cookies, and muffins, I began to eat it and also appreciate it. So I credit my love for pumpkin to Mattie! So Mattie was with us in spirit tonight.