Saturday, December 1, 2018

Saturday, December 1, 2018

Tonight's picture was taken on December 5, 2002.  This was Mattie's first time seeing the snow. I literally opened the front door for him to see it. He quickly zoomed over in his tot wheels to check it out. Mattie actually loved the snow and as he got older, he loved playing in it. On snow days we were both outside in the cold for hours because Mattie loved to create and build in it. In fact it was on the very day captured in this picture that we dressed Mattie up in his little Santa suit, dragged tot wheels in the snow and then snapped photos. Of which one of those photos was on the cover of our Christmas card that year.


Quote of the day: Trees are as close to immortality as the rest of us ever come. ~ Karen Joy Fowler

It was another stellar weather day in Washington, DC. More rain of course, because we haven't had enough yet apparently! On top of the rain, it was frigid. However, if we wait for the perfect weekend to decorate Mattie's tree, it would never get dressed up for Christmas. 

I snapped this photo today of our 4th tree, a White Swamp Oak. This tree was most recently planted in September, around the anniversary of Mattie's death. 

We bought several ornaments for the tree while in Boston over Thanksgiving. Many of our previous ornaments got destroyed. Because it was pouring I did not stick around to take a lot of photos, but I placed an ornament on the tree that says, "Matthew."

This is a photo of memorial tree #3. It is a Yellowwood tree. This tree looked horrible over the spring and summer. Because it was hit by another tree in a storm. The School did not remove this tree, so it stands about twenty feet from Mattie's current tree. Needless to say, I put a bow around it today and Peter hung some ornaments on it. 

It is very meaningful to have these memorial trees planted in Mattie's honor. However, at the end of the day, this is definitely not how we envisioned our lives with Mattie. There is no amount of time that can go by which will enable us to understand or be at peace about this loss. 

Friday, November 30, 2018

Friday, November 30, 2018

Tonight's picture was taken in November of 2003. We took Mattie to Boston and while there, we met up with a friend of mine from graduate school. My friend lives in Boston and she has a daughter who is Mattie's age. So we got the children together to play. Mattie typically did not like ball pits, but that day he went inside. I think he tried it because the play space wasn't busy, there wasn't a lot of noise, or confusion. This has to be my one and ONLY photo of Mattie in a ball pit. Which was why I probably snapped the photo, it was a rarity!!!


Quote of the day: Don't worry when you are not recognized, but strive to be worthy of recognition. ~ Abraham Lincoln


My morning started with a phone call to a pediatric comprehensive cancer center (not in our Washington, DC region). This center actually asked to have a phone call with me. On the phone was one of the institution's researchers we are funding and the assistant director of development. The development director wanted to learn more about Mattie Miracle. Once she heard what we are doing at the local and national level, her comment remained with me. She explained that most private foundations tend to start local and then struggle to expand their services on a national level. But in our case, we are already there. Which was lovely to hear. I know that Mattie Miracle works on a national level, but some how this month in particular that recognition has been more transparent or clear in the minds of our supporters and those who interact with us. So as Lincoln aptly stated..... we strive to be worthy of recognition. 

Later in the day I went grocery shopping. The joke is I live in DC, but I never grocery shop there. I instead go to Alexandria, VA. When Mattie was alive and healthy, he went to preschool and elementary school in Alexandria. Therefore, while he was at school, I would do many chores there, and that habit hasn't changed. The funny part about Alexandria though is I can't seem to do anything without bumping into someone I know. Mind you, Alexandria is not so small really with over 160,000 people. While in the grocery store alone, I bumped into two friends. 

However, while shopping, a grocery store employee came up to me to offer assistance. I really did not need it, but I could see she really wanted to help. I also quickly deduced that she was an individual with a special need. It is lovely to see that Safeway provides opportunities for all members of our community. In any case, after this young lady helped me she said to me.... "if I was helpful, will you tell the store manager?" I wrote down her name and the store manager's name and kept shopping. At the check out location, the same young lady was bagging my groceries. Bagging groceries can be challenging especially when a lot is coming at you. But she did not get frustrated and her colleague working the register was super patient as was the customer behind me in line. I was really thrilled to see the humanity of people on this grocery line today. 

I say this because for the most part, people are SO BUSY. They are attached to their cell phone and juggling multiple things. We have LOST the art of human interaction..... talking, making eye contact, and listening to others. I remember when that was commonplace on the grocery line!! I truly was concerned that I would have a customer behind me today who was going to be impatient and basically angry because the line was moving slowly because of my friend with the special needs. But that did not happen! 

After I checked out, my new friend walked with me to the customer service counter so I could talk with the manager. The manager was lovely and frankly I shop at this store because the overall experience is GREAT. Compare it to any store in DC, and I would say it is worth the car trip. 

Thursday, November 29, 2018

Thursday, November 29, 2018 

Tonight's picture was taken in November of 2002. Mattie was 7 months old and riding around our first floor in his favorite toy... tot wheels. This walker was right up Mattie's alley, as it gave him the freedom and independence he so craved. Mattie wanted to walk and run, never to crawl. Though I would hold his hands and walk with him, he much preferred operating without assistance. 

Quote of the day: Love Me Enough to Let Me Go (the poem below, I posted on the blog on November 29, 2009)

Your hearts are breaking-
I know, I can tell. Because you're my parents
and I know you so well
As hard as this is, there's something I need to say
I don't want to linger,
don't beg me to stay
Keeping me here only gets in my way
Prevents me from being where I want to be
Out of this body and finally pain free
Living with God is my ultimate goal
By taking me home
He is making me whole
The only thing holding me back,
Mom and Dad, Is thinking of you and the good times we had.
You fought for me when no one else could,
Refused to give up when others told you you should
You packed a whole lifetime of love in (seven short) years
Gave me strength to handle all of my fears
Showered me with courage-you said;
"It's a loan"While secretly hiding tears of your own.
You've done everything I needed.
I couldn't ask for much more
Please love me enough to help me pass through that door.
I know you are sad and it doesn't seem fair
But the time has come to put me in God's care
Since I started the job I was sent here to do
And planted a seed now residing in you.
I'm sure I can trust you to carry my load.
Please love me enough-enough to let me go.


I occasionally go back in time to re-read old blog postings. Today for example, I went back 9 years. Keep in mind that I have been writing this daily blog for TEN YEARS now and counting. What struck me about this posting from years ago were two things: 1) I had a lot of anger back then and at times retreated from the world and 2) I did not have the physical or mental energy to run the Foundation (as the below blog posting was written 27 days after we incorporated the Foundation in Virginia).

Reflecting on these two items, I would say I am still dealing with #1, but now #2 consumes most of my life. Daily I am dealing with Foundation administrative work, conceptualizing ideas, running our programs and the list goes on. I probably am aware of all of this on some level, but nothing compares my thought processes better over time than reading the blog. The blog is basically Mattie Miracle's institutional knowledge, as well as my own personal knowledge from 2008 onward. Or as I always joke, the blog is my therapy. Because I write daily, it is much easier for me to express my emotions using the written word, than the spoken one. Thankfully I have the blog because some of my feelings, highs and lows, anger, and sadness need an outlet. An outlet that others can't serve for me. 


-----------------------------------------------------------

Blog posting from November 29, 2009:

This poem evokes two feelings in me. The first of which is part of me hopes that Mattie feels as if we packed a lifetime of love in his seven short years, that we gave him courage and strength, and tried to meet his every need even in the end. However, the other feeling is I can't accept what this poem is asking me to do, which is to love Mattie enough to let him go. To go with God, I assume. It is my hope that Mattie is in God's care. Growing up Catholic, I was taught to believe that challenging God's plan and mission was neither my place or perhaps it was beyond my understanding. Maybe that is correct, because even on a good day, I still can't fathom having to let my son "go." For what reason?! What could God's plan be? If his plan was for us to witness 13+ months of torture upon Mattie, and now to have to live with the aftermath of such a life threatening illness, Mattie's death, then I must pause and wonder. That seems like a horrific, painful, and devastating plan. I am not saying I am not grateful that God provided us with Team Mattie and Mattie's amazing doctors and nurses. I am forever grateful for this and despite living with grief each day, I try not to forget the many acts of kindness and love I experienced and still experience. But somehow, I realize nothing can bring Mattie back. Nothing can bring my former life and world back, and the scary part is now I am left to live with the broken shell of a self that remains.

I woke up feeling very tired today, and I had my usual headache. It was the kind of day where I wondered if it was worth even attempting to do something "normal." Peter mentioned to me today that while he was flipping through the channels on TV, he came across a cooking show that caught his attention. He went on to tell me that the woman was cooking an Italian dish and as he described it, it sounded good, and I knew immediately who he was talking about. For those of you interested in cooking, you most likely have heard of Giada DeLaurentis. Any case, I told Peter she has a cookbook out that I have wanted to get before Mattie got sick. So we decided to try to get the book today and make a recipe from it. However, even a trip to a bookstore can be a difficult place, because the first thing you see in the front of most stores now is children's holiday books. One of Mattie's favorite authors was Jan Brett. Mainly because he was introduced to her writings in his preschool, and we both admired her illustrations. Naturally, the featured book today was Jan Brett's book, The Mitten, staring me right in the face. But being in the bookstore and then buying the ingredients today to make this recipe somehow did not make me happy. In fact, being surrounded by people only irritated me. There are some days that I can deal with the outside world better than others, and today wasn't such a day. I have been edgy and agitated all day, and unfortunately in such a state, Peter lands up being the recipient of my mood.

I had wanted to go with Peter today to Roosevelt Island, a place Mattie loved to be. However, because it was 60 degrees in Washington, DC today, and it felt like spring, every one and his cousin was at the Island and there was no where to park the car. Some how something so simple, was deeply upsetting to me. I was upset for more complex reasons than not being able to find a parking space. I was upset because I wasn't going to be able to walk on the Island and somehow connect with Mattie. Connect with his memories there, and to be able to walk in a peaceful place and reflect on those memories. Peter could sense I was upset, but I wasn't able to verbalize why.

Later in the day, we attempted to go back to Roosevelt Island, but we still were unable to park. At which point we came home, and we instead took a two mile walk on the Washington Mall. Thankfully it was later in the day, when there wasn't as much traffic or sidewalks streaming with people. While walking we talked about Mattie's Foundation. I will always love Mattie, and I want his Foundation to be successful, but I also know my limitations now. I expressed my feelings to Peter, because at the moment I have to take one day at a time. Though I am not a person who typically looks out for myself, at this point, I realize I must. So my role on the Foundation, will need to grow with me, or evolve as I can handle it.

Wednesday, November 28, 2018

Wednesday, November 28, 2018

Tonight's picture was taken in November of 2002. Mattie was 7 months old here. As Peter always said, Mattie was born "ON." Mattie was not a napper but instead was always on the go and had to be mentally challenged and stimulated. Mattie loved looking at books and though he did not sit still for much else, he always was interested in a good story. 


Quote of the day: I am thankful for all of those who said NO to me. It is because of them I’m doing it myself. ~ Albert Einstein


Einstein's quote made me laugh as soon as I saw it tonight. I laughed because there is great truth in what he was saying. I think Peter and I get a lot of "no's" in the work we do. After all, when people think of childhood cancer, they think of the medicine. Funding drug development, other biologics, and medical research. Definitely important and vital, but only a part of the cancer treatment equation. Looking solely at the medicine would be fine if we are talking about something at the cellular level. But with a human being, we are far more complicated than the cells that comprise us. 

Today out of the blue, I got an invitation to speak at Mattie's school on January 22. The school is inviting guest speakers from the community to address common good and social responsibility. In essence this entails developing a 45 minute presentation, and delivering it three times that day. Each student will have the opportunity to attend 3 different sessions. Sessions that they choose based on an 100 word description I provide. Almost like getting a conference booklet, and then you as the attendee choose what you wish to hear more about. 

In theory developing this session sounds like a piece of cake, but for me it is not. It's not because this is an age group I am not familiar with teaching or rearing. Though I no longer have a toddler, preschooler, or elementary aged child, I am definitely more versed in them because of Mattie. Of course, my professional experience is teaching undergraduate and graduate students. Even on that level, I remember the differences between undergrad and grad students, despite the fact that they are both young adults. 

I am honored Mattie's school has invited me and that they realize that Mattie Miracle is much bigger than just Alexandria, VA (where the school is located). In the invitation I was requested to present on the Foundation but also how we were able to grow an idea into a national organization. Given that I will be presenting to teenagers, I am cognizant that whatever I present has to be very tangible, illustrates that it is making a difference and most importantly provides some sort of nugget of knowledge that will stay with them. In the hopes that it will get them to think about what role they can serve in helping children with cancer. Or perhaps also inspire them to think about what they are passionate about and to use this passion to develop their own non-profit some day. 

Tuesday, November 27, 2018

Tuesday, November 27, 2018 -- Mattie died 480 weeks ago today.

Tonight's picture was taken in November of 2002. Mattie was 7 months old and wanted to be up on his feet and walking. Mattie never crawled and he did not like being contained or sitting in one place. His two favorite things to do were either to be riding in a back pack or to be toddling around with support. Ironically Mattie was a late walker. As his mom, I realized that he had his own time line for doing things, and only did physical milestones when he deemed he was ready.  


Quote of the day: Death ends a life, not a relationship. ~ Mitch Albom


We have friends in Oklahoma who sent me a message on Facebook last night. They wanted me to know that Okie Kids Playground (based in Oklahoma, and the company sounds a bit like Gymboree to me) is doing something special this year to help bereaved parents. They are hosting memory trees at their locations. Here is the message being posted:

All children are special and loved. We have a memory tree here at Okie Kids to celebrate those children who are not able to be here with us. During the holidays loss is so hard. Please bring and ornament for our tree in memory of a child forever loved and missed. We want to celebrate them this holiday season by remembering how special they will always be. #memorytree #lossofachild #youareloved #alwaysinourhearts @ Okie Kids Playground

I was very touched by our friend's message and by Okie Kids Playground's initiative. After all their services are geared toward children who are alive and active. Yet in the process of honoring their community, they are bringing awareness to the fact that holidays are not joyous, happy, or normal for some of us. It comes to no surprise to me that the founder of this company is a bereaved parent and has the personal insight to know that child loss impacts one's life forever. 

I would like to say that this Christmas, which marks the tenth holiday without Mattie, will be easier for us. But that just isn't how it goes. That is how others may perceive our situation, but unfortunately with child loss time doesn't make things better. It just makes it more familiar. 

Monday, November 26, 2018

Monday, November 26, 2018

Tonight's picture was taken in November of 2002. Mattie was seven months old. I remember buying that puppy hat for Mattie, and though he did not like wearing hats, I think this was a great hat for him. Mattie did not like his stroller, in fact, his favorite way to traffic was in a back pack. He tolerated this front carrier, but he wasn't a fan of it either. In many ways Mattie wanted to move right into walking and running! He skipped crawling altogether! 


Quote of the day: Either you run the day, or the day runs you. ~ Jim Rohn


To me this quote is brilliant, because that is how I feel my day went today. The day ran me and I never caught up with everything I needed to do. It is wonderful to get away from my daily grind, but I find when I do, there is a price to pay for coming back. So Monday hit me with a bang and my list of to dos still seems almost endless. Not to mention tedious. 

I am working on multiple Foundation things in parallel.... our mass mailing to 400 supporters, the writing of a November and December newsletter, updating our website with content, answering emails and inquiries, and the list goes on. 

I remember when I was in grad school, people would joke with me about whether I ever slept. They felt I got too much done for sleep to be possible. That always brought me a chuckle, but fortunately I have this stamina, because running a Foundation with NO admin staff is complicated. Recently I had a mental health provider in California reach out to me because she wanted to meet me at Mattie Miracle headquarters to discuss the Foundation and our work. This professional is read our psychosocial standards of care and she had told me on multiple occasions that the standards have helped to secure and validate her job at her medical institution. 

Though the standards weren't necessarily developed for this purpose, I am happy that the psychosocial community feels supported by our work. In any case, when she told me she wanted to visit headquarters and to see how we operated, I truly laughed. I laughed because we run Mattie Miracle out of our home. In fact, my office was once Mattie's room. My desk sits where Mattie's bed once stood, and I am surrounded by Mattie's photos and creations. My co-workers are Sunny (the Border Collie) and Indie (the tortoise shell cat). Yet, this mental health provider isn't the first to ask to visit us. Which implies to me that people view us much larger than we actually are. 

Sunday, November 25, 2018

Sunday, November 25, 2018

Tonight's picture was taken in November of 2002. Mattie was 7 months old. This is a favorite fall photo of mine. Behind us is an oak tree. This tree has great significance to me because when Mattie entered preschool, he started to collect tent moth caterpillars in the spring. He would bring them home from school, we would put them in jars, and feed them until they spun a cocoon and transformed into moths. We then released them on our deck. But what we quickly learned was that these caterpillars only ate oak leaves. This is the only oak around our home. So this tree became very special part of our spring caterpillar tradition. 


Quote of the day: To make profound changes in your life you need either inspiration or desperation. ~ Tony Robbins

Peter and I went out shopping today. When we got back into our car, Peter told me to look next to us. When I did, I wasn't prepared to see this! Two dogs in the front seat. Honestly they looked like they were ready to drive!!! Each dog looking out the window, with the driving dog sitting up straight and the passenger dog just sitting back and relaxing. To me this was the photo of the day! It made me laugh. 

Since we got Sunny two years ago, I am very tuned into other dogs around me and their behavior. Not sure why I wasn't prior to Sunny coming into our lives, but I think dogs are very special creatures. They are emotional, bright, appreciative, and loving. 

At the moment, I am cooking our own Thanksgiving dinner at home. Since we were away for Thanksgiving, we missed having our own turkey and left overs. As soon as Sunny came back home from his walk, he was very interested in the smells coming from the kitchen. Sunny is an important part of our family and of course he will be getting some turkey tonight.