Saturday, April 15, 2017

 Saturday, April 15, 2017

Tonight's picture was taken on Easter of 2005. Mattie was almost three years old and this was his first Easter Egg hunt. It was a cold March day, but Mattie caught on quickly about the art of the hunt and finding eggs. Mattie was pictured with his cousins. 





Quote of the day: Easter spells out beauty, the rare beauty of new life.  ~ S.D. Gordon

Today was an incredibly long day! We decided to plant flowers on our deck. Fortunately before we went away for Mattie's birthday, I began the clean up process for our deck. Every fall and winter, our deck really gets beat up and debris accumulates on it. 

We shopped for plants, carried them up from our garage to our home, and then had to plant them. Planting alone took four hours and shopping and getting the plants to our doorstep was another three hours. So we were at this for seven hours today. 

While Peter was setting things up for us to plant, I took Sunny for a walk in our neighborhood. Don't these gardens tell you spring is here?!

Here is what our deck looked like before planting. 

While we were planting for hours, Indie was outside on the deck the entire time with us. She just LOVES her outdoor time. Sunny on the other hand, doesn't like going outside and sitting on the deck. We can only conclude that he spent many hours tied up outside with his former owner, and doesn't like it!

This is what our deck looks like now fully planted. 

Peter took some close ups of our flower planters. 

Another close up. We made sure the plants we selected would fill the deck with color. 

The upside down black barrel is one of Mattie's fountains that he made for my birthday. Peter cleans out Mattie's fountains for me every mother's day. 

Friday, April 14, 2017

Friday, April 14, 2017

Tonight's picture was taken in March of 2009. A friend of Mattie's gave him this bunny hat for Easter. Mattie wasn't in the best of moods, which you might be able to decipher. Yet he allowed me to take a photo. Frankly I totally forgot about this photo, until my Facebook friend, Tim, posted it to my page. At first I thought Tim created the photo for us, in acknowledgment of Easter. But he told me, it was a photo I took. So I went digging in my filed for it and here it is!

As you can see, Tim transformed the original photo above slightly. 

















Quote of the day: Some people think only intellect counts: knowing how to solve problems, knowing how to get by, knowing how to identify an advantage and seize it. But the functions of intellect are insufficient without courage, love, friendship, compassion, and empathy. ~ Dean Koontz

It was a whirlwind of a day today with a licensure board meeting and taking Sunny for his monthly grooming. Literally every second Friday of the month is nutty because I drive from DC to Alexandria (where the groomer is), then back to DC (for my meeting), then back to Alexandria (to pick up Sunny), and finally return to DC (home). Depending on traffic, I can spend hours in the car. But today is Good Friday and traffic in DC was a breeze. 

By the time I got home, Peter was back from work and snapped this hysterical photo! You may see Indie on the floor by the corner of the chair, but if you look up on Mattie's memory stand...... do you see a sparrow? A sparrow flew into our home, through our front door, and Indie was zooming around and transfixed on the bird. Indie is a total birder. See loves looking at them and if she was allowed, would probably catch a few. I am happy to report that this smart bird flew right back out of the front door. It has been so hot in our unit, that when we are downstairs this week, we keep the front door open for a bit. Clearly our bird friend thought that was an invitation! 

Thursday, April 13, 2017

Thursday, April 13, 2017


Tonight's picture was taken in May of 2009. Only four month before Mattie died. Mattie LOVED Legos. The year that Mattie battled cancer, he assembled every Lego kit on the market. One of which was this car carrier, which included cars to tow. Mattie loved car carriers from an early age. Whenever he would see one on the road, he perked up with enthusiasm. Now whenever I see a car carrier, it reminds me of Mattie.







Quote of the day: The world is not ready for some people when they show up, but that shouldn't stop anyone. ~ Ashly Lorenzana


I think tonight's quote is great. Sometimes I feel it applies to Mattie Miracle and our psychosocial mission. For the past year or so, the Foundation has been working on getting endorsements of the psychosocial standards from healthcare organizations. We are up to 14 major endorsements and in all reality, the standards sell themselves. They are rigorous, comprehensive, and truly historic. 

Most organizations are eager to sign on, and some have just contacted us directly without being asked for a endorsement. However, one organization that we solicited refuses to endorse the standards. I am not going into detail about this here, other than it is political and this particular profession has issues within itself. It is fractured and how care is provided to childhood cancer patients varies greatly depending upon whether this professional group works in a hospital versus works in the community. In any case, this group decided not to endorse the standards because they felt the standards did not incorporate their professionals who work in the community. Meaning what role does this community based practitioner play in the treatment of a child with cancer? The answer in reality is NO ROLE. There is no connection to that community based provider once the child starts treatment. But this is a reality this professional group doesn't want to hear. The issue in my opinion needs to be resolved within their profession, and I really felt if they endorsed the Standards that this would help bridge the gap between hospital and community providers. But instead of facing the reality of their professional disconnect, they chose to take the stance that the standards weren't inclusive and applicable to them. 

I am proud to report that the Psychosocial Standards were just endorsed by the American Society of Pediatric Hematology/Oncology (ASPHO). Founded in 1981, ASPHO currently has 2,000 members. ASPHO is the only professional organization dedicated solely to the professional development and interest of subspecialists in pediatric hematology/oncology.

Read the press release on this endorsement:

http://www.digitaljournal.com/pr/3305349#.WO9bS16rQMA

Wednesday, April 12, 2017

Wednesday, April 12, 2017

Tonight's picture was taken in May of 2009. It is a great photo because it captures the antics of Mattie. Peter blew up many hospital gloves and Mattie wanted them all around him on his bed. Peter didn't do this just to waste gloves, he did it because Mattie was down and in a mood. But all these turkey looking gloves brought a smile to all of our faces, including Mattie's nurses. 


Quote of the day: Step out today not seeking to be in the spotlight but seeking for a spot to light - be a blessing to someone. ~ Bernard Kelvin Clive

I went to MedStar Georgetown University Hospital and made a LARGE toiletry item donation today. After my drop off of items, I then went to push our snack/item cart around the pediatric units. There is one mom and her son who I have seen EVERY month that I go for at least the last four months. I so relate to her and I told her, though I don't know her I think of her often. So many families were thrilled to see the snack cart today, and some clearly stock piled on things. One mom even said, the hospital needs this cart to go around hourly. Boy do I get her sentiments!!! But there were aspects to my visit today that were deeply disappointment and upsetting as I continue to see an institution that I once was so fond of change before my eyes. I will leave it at that. 

I feel this has been the week of massive items coming in and out of our home. I did a big Goodwill run earlier in the week, so I had that massive pile. Then I had the toiletry pile which amounted to 12 garbage bags full of items, and now this!!! These boxes were just delivered to us today..... over 400 Walk t-shirts. At times I feel like I operate a warehouse in addition to a Foundation. With planning the Walk comes chaos in my life that won't dissipate until June. 

Tuesday, April 11, 2017

Tuesday, April 11, 2017 -- Mattie died 395 weeks ago today. 

Tonight's picture was taken in May of 2009. Do you love Mattie's huge fly swatter? He got this at his birthday bug party and took it to the hospital with him. As you can see one of his art therapist's was being clever. To get Mattie to use his arms she had him swatting at things they created together. Mind you we could have asked Mattie to do certain physical therapy exercises, but he responded better to creativity in real time. Fortunately Mattie had an amazing child life specialist, two art therapists, and a physical therapist who understood that Mattie was bright, creative and a free spirit. 


Quote of the day: The most important function of education at any level is to develop the personality of the individual and the significance of his life to himself and to others. ~ Grayson Kirk 

Today I visited Mattie's lower school. As you can see Mattie's memorial tree is beginning to bud leaves. Always a wonderful spring sight. The tulips we planted around the tree are in full bloom too.

Why was I at the school? To visit Donna, one of the kindergarten teachers. Every April/May, I visit Donna's classroom and teach the children about Picasso and Matisse. I have done this for six years in a row. After Mattie died, Donna invited me to her classroom for tea. Mind you Donna was not Mattie's kindergarten teacher, but she knew from Mattie's teacher that I was an involved parent. I did several visits to Mattie's kindergarten class and did a gingerbread project, a cruise ship project, and even a coconut project. 

When I met Donna six years ago, she invited me to get involved with her students but we had to brainstorm how. As she was talking she mentioned that she reads a book called "When Pigasso met Mootisse" to her class and she wished she had more time to expand on the concepts in the book so students could experience these artists. I took on that challenge and that first year, I literally went to the library and did a ton of research on Picasso and Matisse. I knew of their art, but not enough about their lives and how they developed their painting styles. So I learned! It was painful to develop curriculum for kindergarten students, as I was used to teaching adults! None the less, I always kept Mattie in mind when developing these three lesson plans, along with matching art activities to bring the concepts we talked about alive. For years, I would also bake treats to match the theme of what we were discussing during each session. It has been a real labor of love for years.

With each successive year I teach, I find that I am given less and less time with the students. NOT on purpose but because the schedule for these 5 and 6 year olds is so packed with classes. Free time is a commodity. When I first taught the classes, I would have close to three hours with the students. Now I have one hour for each of the three lessons. What surprised me this year, is that instead of showing my usual power point presentation and discussion with the children, I have been asked to pick a five minute youtube video that will introduce the content to the children and then the remainder of the hour be devoted to the hands on creative project. This is SO counter to my educational background, though I realize that education has changed drastically from when I went to school or taught at the college level. There is NO didactic learning anymore. Now students need hands on assignments and activities every 7 minutes. I am not making this up, taught to any teacher! It makes me pause and wonder WHY ON EARTH has education changed so dramatically? 

Personally it is a sign of the times. Children are plugged into devices at a young age and their use and familiarity with technology surpasses their parents. In addition, we are reinforcing in our children the need for immediate results, answers, and gratification. There is NO TIME to read, to think through problems, and to explore concepts! I will see how I feel about presenting to the children this year using this new format, but for the moment this CHANGE doesn't sit well with me. If you rely on a video, then what purpose does a teacher or in this case, ME, serve? 

I also was hearing about a new mindset being integrated into the elementary school, based on this book:  http://www.schoolleadership20.com/m/discussion?id=1990010%3ATopic%3A261359. In essence five words are being integrated in the curriculum, and they are "optimism, persistence, resilience, flexibility, and empathy." As a mental health professional, I certainly value each of these complex "traits of joyful independent growth." However, factors such as resilience and especially empathy are not easy to convey, much less understand. Even for adults. But moving away from that, I guess I left school today wondering why are teachers integrating this into the classroom? I certainly did not get these skills taught to me in elementary school and yet I have them! 

To me these are concepts that are nurtured within one's home and community. They are taught by parents. So what's happening? Are we saying these things are no longer taught at home so now they need to be included in the curriculum? I truly am pondering the state of education today. It is one thing to send your child to school to learn concepts, but at the end of the day, I always believed that it was MY RESPONSIBILITY as Mattie's parent to teach him life skills, to assist him as he learns how to assess himself, and the world around him. Not to mention be able to articulate his feelings and those of others, in order to be a productive, thoughtful, and contributing part of our society. I wanted to teach him values and to me it is noteworthy when such concepts become integrated into curriculum. Just like service learning has been mandated into curriculum, and guess what?! This HASN'T inspired service, but instead volunteerism is a box to check off rather than a passion that gets inspired to be an agent of change in one's community. Once complex issues become requirements they evolve, morph, and in my opinion lose their significance.   

Monday, April 10, 2017

Monday, April 10, 2017

Tonight's picture was taken in May of 2009. Despite the fact that Mattie couldn't walk independently, he was inspired to use tape. He literally taped Linda (his child life specialist) to the chair. It was actually a clever activity, because in the process of doing this, Mattie got his body moving, and in essence was doing physical therapy. Linda and Anna (Mattie's physical therapist) always thought outside of the box when helping Mattie. They knew they had to intrigue and motivate Mattie to participate in physical therapy, because gross motor movements were painful for him. All of this happened almost 8 years ago, but it is these psychosocial moments and human connections you remember forever. 


Quote of the day: There is no exercise better for the heart than reaching down and lifting people up. ~ John Holmes

I finally sorted all the items that were donated to us for Mattie Miracle's 6th Annual item drive. Here is what our home looks like... filled with goodies. All of which will be donated this Wednesday to the hospital. 

We started this item drive six years ago and time it with Mattie's birthday. I did this purposefully because it accomplishes two things: 1) it reminds people of Mattie's life and legacy, and 2) we collect gifts for Mattie's birthday that will benefit other families coping with childhood cancer. 

All these items will help stock the Mattie Miracle Snack/Item Cart at MedStar Georgetown University Hospital. Our new cart at Children's Hospital at Sinai, isn't ready to receive such items yet, but in time we will be contributing toiletries to two hospitals. But why did we establish the Mattie Miracle carts? 

When Mattie was battling cancer, our community support network provided all three of us with meals EVERY DAY for over a year. It did not matter whether we were in the hospital or at home, the items came to us. As time progressed with Mattie's battle, and it was indeed a battle, our community not only provided meals but brought us coffee, tea, and for me.... CHOCOLATE. I liked chocolate before Mattie's cancer diagnosis, but my chocolate addiction occurred during his treatment. Some people pop pills or drink, I pop chocolate. After Mattie died, I felt it would be a wonderful thing to be able to continue the tradition our support community established with us, but do it on a large scale. So the Snack/Item carts were born!!! Born out of tradition and the memory of a community who stood by us and supported us for more than 365 days! 

Sunday, April 9, 2017

Sunday, April 9, 2017

Tonight's picture was taken in June of 2009. June was a tough month for Mattie because we had to tell him that the cancer spread to his lungs and therefore needed another major surgery, a sternotomy. I think this photo is darling. Kissing Mattie's bald head are Sarah Marshall (the same hem/onc nurse on call the night Mattie died, we call her our angel of mercy) and Ellen (a hem/onc night nurse who took care of our whole family). I think the humorous part of this photo was Mattie. He was multi-tasking, yet enjoying the attention from his nurses at the same time. 


Quote of the day: There are lives I can imagine without children but none of them have the same laughter and noise. ~ Brian Andreas

We picked up Sunny and Indie today. All I can say is we have two VERY HAPPY animals. They are thrilled to be home. 

On our way to Dogtopia, Peter and I guessed how Sunny would greet us. When Peter has picked Sunny up from friends' homes in the past, Sunny typically gave him an incredible greeting. It sounded almost like something you would see in a Hallmark movie. However, I know full well that Sunny gets anxious when visiting/staying at a facility. So my guess was Sunny was going to be happy to see us, but his ultimate goal was to run for the door and seek freedom. 

When Sunny saw us in the lobby of Dogtopia, he was thrilled and barked with happiness. But he wanted to head for the car ASAP. When we arrived home, we let Sunny off his leash in our enclosed commons area. I have NEVER seen Sunny gallop before. But he was literally racing around our commons area at the speed of light. He loves his freedom and also enjoyed his walks in our glorious spring weather. Since he was inside for the last ten days, he truly appreciated the fresh air, the breezes and all the smells around him.

As for Indie, she spent some time hiding in the closet. But by mid-afternoon, she returned to her usual self. Demanding outside time, checking out every floor of our home, and seeking a lot of love and affection.