Saturday, September 22, 2018

Saturday, September 22, 2018

Tonight's picture was taken in October of 2002. Mattie was six months old and though he could hold his head up, I found at times he would lean to one side and totally topple over. He liked to sit on our couch, but I always propped him up with pillows to prevent the leaning. In front of Mattie were his cups. He absolutely LOVED playing with these plastic cups. Seeing them always reminds me of Mattie. Believe it or not, even today, these cups sit on the rim of our tub. 


Quote of the day: Gray day. Everything is gray. I watch. But nothing moves today. ~ Dr. Seuss


Dr. Seuss' quote sums it up! DC is constantly gray. In fact, I feel like I have been transported to Seattle. One or two gray days one can handle. But I am losing track of when, if ever, we see the sun. We have had two consistent weeks of grayness and rain. Then we had one sunny day this week, which was a tease. Now we are back to gray and tomorrow the rain starts up again for a week. Honestly!!!! I find this weather very dreary and depressing and it certainly doesn't help one's mood. 

This afternoon we went out to buy new raincoats and rain boots. When walking Sunny in this nonsense, I have come home day after day soaked. It takes time for my sneakers to dry out and literally our old raincoats weren't cutting it. So now we are fully armed for a deluge. 

We went shopping in Bethesda today. I can't recall the last time I went to Bethesda. But it is cute, vibrant, and every dog imaginable was out and about. After shopping, we stopped to have lunch and even ate outside. Grayness and all. Lots of others were also eating outside, despite the fact that we are officially into Fall now. We all know that we have to get as much outdoor time before the cold weather hits us. 

It was a change in our usual weekend routine..... going out and to Bethesda. We spend many weekends working on Foundation things or walking Sunny. So something different helps on a gray day. While having lunch outside, I watched people walking by and for a brief moment it made me feel like I was like them.... normal and not inundated with childhood cancer. Naturally this feeling doesn't last long, but it is a good reprieve.

This feeling takes me back to a client I used to counsel. This young fellow was one of my very first clients in my career. He was very bright, but did not like therapists. Yet he tolerated me. He dealt with depression. But it is one of his comments that remains with me always. He once told me that he went to Starbuck's just to feel normal. I asked him to clarify what on earth he was talking about because in my twenties I did not get it! He explained that when he was out and about surrounded by people in Starbuck's, he felt like he was part of the living world. That in that brief moment in time, he wasn't depressed, but just felt like everyone else. I empathized with what he was telling me but I couldn't relate and truly understand until now. 

Now on my gray days, I think back to this client, and I have to say, that for being in his twenties he was very astute. His observation about feeling normal for a short period of time is so spot on and accurate. When we are caught up in the energy of those around us, we can get transported for a bit of time. 

Friday, September 21, 2018

Friday, September 21, 2018

Tonight's picture was taken in September of 2002. Mattie was five months old and eating in his favorite place.... the car seat. The irony however, was that Mattie hated sitting in his car seat when in the car! But that car seat served as a high chair and crib for many months. As Mattie despised lying down flat in his crib! In this photo, Mattie was eating his favorite.... oatmeal. Unlike me, Mattie did not like anything very sweet.  He lived on oatmeal for breakfast for years. 


Quote of the day: Almost everything will work again if you unplug it for a few minutes..... including  you. ~ Anne Lamott


It was one chore after the other today. It started with getting Sunny to his groomer's at 8:30am. Dealing with morning traffic in DC, is never pleasant and poor Sunny hates going to the groomer's. You can literally hear him sighing and getting anxious in the car. Once he gets inside the building where the groomer works, Sunny will visibly start shaking. He is really good at making me feel awful. He has been going to the same woman for two years now and she assures me that once I leave, he is calm and there is no shaking. You got to love it, but with Sunny's big wholly coat, he needs monthly grooming. Also keep in mind that Sunny doesn't like water, so bathing him at home is NOT an option.

Later on in the day, I devoted time to updating our Foundation's website and writing September's newsletter. I am not sure why writing this newsletter was so challenging, but it was. It was like pulling teeth. I can't understand why, but maybe it has to do with the fact that I take August off from writing a newsletter. So that one month break from writing contributed to my lack of productivity! I have no idea. 

The next several months will be quite busy and with the change in weather today, it reminded me that Halloween is just around the corner. I can't get over the amount of candy we have collected from year to year, and what a massive undertaking the candy drive has become. Each year I learn ways to streamline the candy drive and it is my hope that one centralized drop off location will make this more manageable. 

I love tonight's quote. It makes me laugh and given that I have spent a good chunk of the week in front of a computer.... it is time to unplug. 

Thursday, September 20, 2018

Thursday, September 20, 2018

Tonight's picture was taken in September of 2002. This was quintessential Mattie! A boy on the go!!! Mattie was never the kind of kid who was glued to a TV or an electronic device. Which made it very easy to parent him in that sense. However, on the other hand, Mattie had two modes.... ON and OFF. When he was on, he held you accountable to keep him engaged, stimulated, and challenged. Mattie made Peter and me rise to the occasion everyday for 7 years.  


Quote of the day: Teamwork is the ability to work together toward a common vision. The ability to direct individual accomplishments toward organizational objectives. It is the fuel that allows common people to attain uncommon results.
~ Andrew Carnegie

I received my birthday gift today from Peter. We used to have a MMCF license plate on our old car. However, when we tried to put that tag on our current car, the DC DMV said that the MMCF plate was already taken!!! No kidding, it was taken by us. 

However, in typical DC fashion there was no way out of that quagmire. 

So instead, Peter made me a completely new plate and it highlights Mattie! There is no ambiguity about this plate, unlike with MMCF, where someone may not know what it stands for. 

In any case, Mattie is always with us, even when on the road! We nicknamed our car the Rubster, but in all reality it is the Mattie Mobile now!




The license plate and walking Sunny were the highlight of my day! I spent the rest of the day glued to the computer, managing multiple Foundation events and working on our September newsletter. Our candy drive has gotten so large, that we have now moved the operation to a storage unit (the size of a garage) in Arlington, VA. I put together an electronic sign up request for candy sorters today and I will begin to advertise it on our newsletter and social media. Check it out..... especially if you love and want to sort candy. Keep in mind that the candy goes to:

1. Children's Hospital at Sinai, Baltimore, MD
2. Children's Inn at NIH, Bethesda, MD
3. Children's National Medical Center, Washington, DC
4. DC Candlelighters Childhood Cancer Foundation, Merrifield, VA
5. Hackerman-Patz House, Baltimore, MD
6. HSC Pediatric Center, Washington, DC
7. MedStar Georgetown University Hospital, Washington, DC
8. Pediatric Specialists of Virginia (PSV), Falls Church, VA
9. Ronald McDonald House, Washington, DC
10. Ronald McDonald House, Falls Church, VA
11. Ronald McDonald House, Baltimore, MD
12. Special Love, Winchester, VA
13. Cornerstones, Reston, VA
14. Covenant House, Washington, DC
15. Embry Rucker Community Shelter, Reston, VA
16. Nourish Now, Rockville, MD
17. United Community Ministries, Alexandria, VA

​Sign up to sort candy: https://www.signupgenius.com/go/20f0a48aca82aa7fc1-mattie

Wednesday, September 19, 2018

Wednesday, September 19, 2018

Tonight's picture was taken in September of 2003. At a year and a half old, Mattie migrated to his high chair. It wasn't his favorite place to be. Which was why he literally ate in his car seat for the first several months of his life. However, we worked on making high chair time fun. As long as we engaged Mattie's mind, then he would comply with eating. Otherwise, forget it!!! One of Mattie's favorite foods believe it or not was oatmeal. He not only liked it as a baby, but he ate it every day of life until he was diagnosed with cancer. 


Quote of the day: In union there is strength. ~ Aesop


Mattie Miracle is planning its first evening event on Thursday, November 8th. Many of our supporters have been encouraging us to host such an event for years. But to bring such a party into fruition requires time, energy, and resources. I have been hesitant to do such an event because I felt there needed to be a draw to attract potential supporters to this event. The event is not being held for our current supporters, but instead, we have a host committee assembled of current supporters who are working through their networks to invite friends to this event. 

I had a second meeting with our host committee today and I have to say I am very fortunate to have friends devoted and motivated to support our Foundation. Many things have aligned this year with a board member's family opening his home to host this event, and another board member offering us free tastings from his DC bourbon distillery. Instead of us going to the distillery, the distillery is coming to Alexandria, VA. I also think that Mattie Miracle is developing a solid reputation in the community, in that now we have reached the point that such an event makes sense. We have a true national platform and initiative and it is our hope that others will want to hear about it and support us.

With the guidance of host committee, we have now officially turned this event into a fundraiser, with an $150 donation fee per person to attend. I was hesitant to do this at first, but given the insights from the committee, I changed my mind. Especially since this will be a costly event to host, I would hate to spend our own personal money, and then not generate anything for the Foundation. So I was convinced. 

However, I am working through the details and today I sent out a request for live musicians to perform at our event. I love Gigmasters and typically have found wonderful vendors who are willing to work with us, many pro bono. However, I can't tell you the prices I am being quoted per hour by these musicians! They range from $900 to over $1,200! Mind you this is asking them to be flexible with us on their fees considering we are a public charity and are trying to raise money to support children with cancer. That apparently did not matter. All I can say is wow! 

Tuesday, September 18, 2018

Tuesday, September 18, 2018 -- Mattie died 470 weeks ago today. 


Tonight's picture was taken in September of 2003. Mattie was a year and a half old and was walking up a storm and exploring everything. He loved our wrought iron piece in the living room. He played around it, put his toys on it, and did everything but climb it! Ironically, we use this metal piece now to display many of Mattie's creations.... from legos to pottery. 







Quote of the day: If I am to meet with a disappointment, the sooner I know it, the more of life I shall have to wear it off. ~ Thomas Jefferson


I went to the hospital today to push the Mattie Miracle Snack Cart around the pediatric units. I try to do this once a month at the hospital where Mattie was treated and once a quarter at Children's Hospital at Sinai in Baltimore. I know that many parents who have lost a child to cancer do not want to return to the hospital ever. I can appreciate this feeling since this space holds profound and long lasting pain and memories. 

However, for me returning to the hospital was always like coming back to a second home. Peter and I spent so many days, nights, and months there, that we practically knew everyone who worked at the hospital. But now that we are 9 years passed Mattie's death, I see the hospital in a new way. As is typical with time, the people we once knew are no longer at the hospital. So now interacting with nurses, doctors, and psychosocial providers in the units, I realize they have NO idea who I am, and they certainly do not know Mattie. 

In a way, Mattie's memory has been forgotten. It boggles my mind especially since this was our medical home for 14 months, it was the place where so many medical traumas unfolded, and the place where we had to leave Mattie behind (in the hospital's morgue) on the day he died. For us, every aspect of those 14 months remains with us, but unfortunately hospital walls do not talk nor do they have memories. It is the people within them that help parents carry on the legacy of our children. What happens though when most of those people are gone? 

I will tell you! What happens is what struck me today. I left the hospital after pushing the cart very saddened, depressed, and also angry. Not a good combination for me. All I could think about was this was Mattie's first room he had chemo in, or this was the room Mattie recovered in after his first limb salvaging surgery, or worse, there was the room Mattie died. Yet for the most part, I am NOW the only one around in these units who remembers this. To those around me, I look like your average person without a care in the world. They have no idea! 

The feeling that I am left with today is sheer disappointment and like Jefferson said in tonight's quote, I now have the rest of my life to wear it off. So well stated, because there are some feelings one doesn't ever get over. 

Monday, September 17, 2018

Monday, September 17, 2018

Tonight's picture was taken in September of 2003. Mattie was about a year and a half old and what I learned quickly about Mattie was he always wanted me as his play companion. Self entertainment wasn't his forte. Instead, he always felt better doing things together. We occasionally did computer time and went to educational sites to play games, sing songs, and learn letters and numbers. Mattie had a good old time sitting on my lap and taking it all in. 



Quote of the day: Many ideas grow better when transplanted into another mind than the one where they sprang up. ~ Oliver Wendell Holmes


I think anytime you start up something new, there is a major learning curve. Or at least that is what I have found for practically every Foundation thing I have tried to tackle..... annual Walks, hosting round tables, talking at conferences and planning presentations, annual fundraising drives, our free snack cart, working with hospital development offices and the list goes on! Now to add to this never ending list... is how to host an evening event. 

Things aligned this year, so hosting our Bourbon and Bites Bash will be possible. We have the beautiful space and we have the bourbon distillery providing samples. Of course now we need all the other logistics.... food, music, invitations, and the worst yet is WHO TO INVITE!!!!??

I had plans to get certain things accomplished today, but instead I was involved in calls about this evening event in November. How I could spend an entire day brainstorming this, I don't know. But I have and tonight I am exhausted. I feel like I am juggling a ton with the candy drive, this evening event, and beginning annual Walk preparations. Mind you we have also been invited to two national conferences and I have no idea where this will fit in! 

In the midst of this, I am reminded that I still have a major hip problem that requires surgery! A surgery that will take a month of rehab and crutches. To me this is a nightmare and there is no good time to do this. What also don't help is this non-stop rain. Rain for almost two weeks now!!! I feel like we live in Seattle and I have become so used to seeing gray skies now. Not a good commentary for a Monday. 

Sunday, September 16, 2018

Sunday, September 16, 2018

Tonight's picture was taken in September of 2003. Mattie was intrigued by fire trucks, or I should say trucks in general. Peter's parents gave Mattie this ride-on vehicle and Peter was out in our commons area showing Mattie how it worked. Mattie was cautious at first, but quickly got the hang of it. 

Quote of the day: Man’s greatest actions are performed in minor struggles. Life, misfortune, isolation, abandonment and poverty are battlefields which have their heroes - obscure heroes who are at times greater than illustrious heroes. ~ Victor Hugo

Peter and I went to Curefest on the National Mall in Washington, DC today. This is our fourth year setting up a booth for Mattie Miracle at this annual awareness event. 

What is upsetting about this event is that it doesn't reach the public.... people not exposed to the issues of childhood cancer. 

Nonetheless, the event attracts cancer advocates, childhood cancer patients, survivors, and bereaved parents from around the country and Canada. There are many advocates we love seeing every year and another highlight is meeting new families, hearing their stories, and discussing the importance of psychosocial support with them.

There were 80 foundations (each with their own tent) represented on the mall!

I snapped this memory wall! Rows and rows of children taken from us by cancer. Look at these beautiful faces. It reminds us that childhood cancer is not just about the medicine and it isn't so rare. Families are forever affected!

A close up of Mattie's tribute on the wall. 

At around 12:30, people began walking around the Mall. I tried to snap a few photos of the activity coming passed our tent. 

Walkers! You will find several families holding up signs, walkers holding photos of their children, people dressed with colorful outfits or catchy sayings on their clothing. 

Peter, me and Sunny at our Mattie Miracle booth. We got to the Mall at 8am, to start setting up, and left at around 2pm. 

Sunny was a huge hit. I can't tell you how many people came up to us and asked if they could meet and pet Sunny!

Peter and I were grateful to have Helen and Abbie helping us today. By having their help, it enabled us to truly talk to people coming into our tent. 

We gave away 80 t-shirts today, brochures, business cards and a ton of toys and gifts. 

Peter and Sunny with Vickie, the president of the Coalition of Childhood Cancer (CAC2, or which Mattie Miracle is a member of this organization). 

We were delighted to have our friends Margy and Ken with us under our tent. Margy ran a successful childhood cancer organization for 20 years, and I am honored that she values what we do and wants to bring attention to Mattie Miracle's mission. 

Margy worked with childhood cancer patients for many years and I can't tell you how many patients came into our tent to reconnect with her today. 

We are pictured with our friends Wendy and Gavin. They lost their only child too, so we understand each other well and we respect each other's foundations!

Peter with our Canadian friend and amazing advocate, Neal. Neal lost his son, Brendan, to cancer as well. 

Pictured with us is Joe. Joe runs a very successful childhood cancer foundation out of Delaware and is a wonderful and charming man. We bonded several years ago at Curefest, over the emotions of the day, and we have been friends every since. 

Our friend Margy, with Valerie. Valerie lost her brother to cancer and she comes to Curefest every year in his memory. She is a ray of sunshine. 

Peter with Annmarie, a fellow cancer advocate. 

This is Michaela. She is from Israel. In Israel she works with children who come from troubled homes. So she doesn't have experience with childhood cancer, but truly wanted to learn more. She really caught me off guard, because we need more Michaela's in attendance. She wanted to hear my story and about Mattie Miracle. After I told her, she hugged me, wanted to take a photo, and took my business card because she wants to stay connected. She has four children and couldn't imagine losing one of them. She felt I am amazing, a strong woman, and wanted me to know I am the mother to every family I help. 

I am pictured with Pam Wolters. Pam is a psychologist who works at NIH. She is the Co-Director, Behavioral Health Core, like our friend Lori (who works closely with Mattie Miracle). 










Though I did not take a photo of Linda (a mom) and her poster she was holding of her son, Charlie, I will never forget today's interaction. Linda lost Charlie to cancer only a few weeks ago, and yet found the strength to come to Curefest from Syracuse, NY. Linda purposefully came into our tent today to let me know she met me two years ago at Curefest. Two years ago, I met her and Charlie and I apparently told them about our Psychosocial Standards of Care. Charlie was so inspired by what he learned from me, that he took our brochures on the Standards back to his medical institution where he was seeking treatment and demanded that they provide psychosocial support to teenagers. Charlie worked on his providers for a year. At which point, psychosocial care was started. He's was amazing! Charlie is no longer alive, but Linda wanted me to know that Mattie Miracle's work matters. It affects change. As our Standards provide scientific evidence for the benefits of psychosocial care and it was the ammunition they needed to get Syracuse to do something to support its patients more effectively. This story will stay with me forever, because sometimes it is hard to see the tangible differences the Standards are beginning to make. The story of Charlie proves that we are on the right track. I feel that Charlie and Mattie Miracle produced a change in treatment for children in Syracuse. It doesn't get better than that.