Saturday, August 21, 2021

Saturday, August 21, 2021

Tonight's picture was taken in August of 2008. As you can see, Mattie was busy creating within the small confines of his hospital room. You may not be able to determine what he was working on! But I know ALL TOO WELL! He was creating a tissue box holder, by adding decorative tiles to the sides of the box, and then he glued the box together for me. This tissue box remains on my nightstand after all these years. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 37,667,889
• Number of people who died from the virus: 628,276

My day started at 7am and now it is after 10pm, and I am still working. Peter rented a U-Haul this weekend to move some of our items on our own. We rented a U-Haul two weekends ago to move all our plants and everything out of storage. There are things I prefer to move myself (which can only happen if the move is local).... such as clothes, china, personal items, Foundation materials, and memorabilia. I learned after moving my parents twice that the more you can move on your own, the more control you have over the process. As it is, I will be digging out for some time at the house. 

Peter loaded the U-Haul twice and drove back and forth twice! I loaded our car with all my non-hanging clothes. Every one has a favorite item, mine are sweaters. I have a sweater in practically every color and style. I have collected them over the years and like other items I love, I don't part with them. So I have A LOT of sweaters. 

While cleaning out one of my kitchen shelves, I found Mattie's Penny Passport book. Mattie absolutely loved this book. Every place he visited, we would create a souvenir penny!

Mattie's collection!

In fact, when we took Mattie to NYC to begin his experimental treatment, we bought him a new penny passport book at the Empire State Building. 

Unfortunately, Mattie did not live long enough to fill this book. I think this empty book is quite symbolic for the many years and activities that were robbed from Mattie and us. 

Mattie kept his PEZ dispensers in the kitchen! Notice the three sharks teeth too! Mattie dug through the sand at Calvert Cliffs Park (in Maryland), and found them himself!

The way this photo came out, it almost looks like a whirlwind effect around the photo. I did not do that on purpose, yet it definitely felt like a whirlwind. 

You have to understand that moving anything out of our current complex is challenging. We have to open and hold multiple doors, go up and down steps, and down an elevator to get to our car or U-Haul. It isn't an easy carry and would be impossible without some sort of cart. 

In the afternoon, Sunny and I got to the house. Before I unloaded the car, I had a ton of sweeping and mopping to do because we have had non-stop contractors in the house. Including closet installers on Friday. 

On Monday we have 6, yes SIX electricians coming to work on the wiring of the house. That is how significant an issue we are talking about. 

Any case, I carried my clothes from the car to the kitchen and began organizing them before carrying them upstairs. I got a work out today. 

The Container Store installed my closet on Friday, and the put the shelves up very high. Too high for me. So I decided to try to lower them on my own! Big mistake. This Elfa system may look easy, but to me it was impossible to re-hook the shelves. I had to get Peter involved because if I did not, I most likely would have broken the shelves or made a hole in the wall. 

I am working on getting organized. Since Mattie's death, I do not do well when things around me are chaotic. It makes me very anxious and then I can't focus on anything else. It will be another full day of moving items with the U-Haul and car tomorrow!

Friday, August 20, 2021

Friday, August 20, 2021

Tonight's picture was taken in August of 2008. It was a weekend, and that day, we had many visitors. From Mattie's cousins from Boston, to Peter's colleagues from his former Arthur Andersen days. In the beginning Mattie liked visitors and it was a good distraction for him. For me, I was on overload and frankly did not want to have normal conversations when nothing was normal in my life. But because it was good for Mattie, I carried on. As Mattie's cancer journey went on, he did not want to see or hear from visitors. Which provided a host of challenges for me to balance his needs and the needs of his community.

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 37,610,223
• Number of people who died from the virus: 627,833

It was pouring today! I mean torrential. Peter left for the house early to meet the closet installers and while I was still in bed, I got a furry visitor. 

There is one thing I won't miss about our current living arrangement in DC.... laundry! The laundry room is three floors below me, on the same floor as the dumpsters for the building. I have managed this arrangement even carting a baby in tow for 26 years. But today, I was stressed out and had lots of laundry to do. For the passed year, FEW to no people have been down in the laundry room. Now that the university is opening up this fall, the students are back and apparently the memo was out... it was laundry day. The competition to get machines was intense and I frankly had no patience with people who did not remove their laundry from machines in a timely manner. I literally did laundry in two different building today, in order to get all the machines I needed. 

My back and legs are killing me because I am on feet over 12 hours each day. It was another day of cleaning, dusting, organizing and packing. All of Mattie's art work has now been removed from the walls. 

This is my Mattie wall! It has snap shots of him throughout the various phases of his life. I took my Mattie wall down today, and cleaned each frame. The wall looks so blank tonight. 

A close up of the photos!

The beauty of Mattie. 

By the way, that cute puppy dog jacket and hat you see Mattie in, I found them in my bureau drawer. I still remember buying him those items in Buy Buy Baby. Naturally they are coming with me to the house. 

Mattie's visit with Santa and the Easter Bunny. 

Baby Mattie. 

This wall has gifts we received on our wedding day. The top framed item is our wedding invitation. Friends of Peter's, artistically framed it and it still looks beautiful! Then the two architecture prints were also gifts from Peter's side of the family. They describe plans for two different Victorian homes. The little framed prints are wrought iron gates from Charleston, SC. 

Mattie's artwork! It took me a long time to get our current home looking the way it did. Now to try to visualize how our things will work in a new space, is hard for me. Because I liked the way they were. 

Today was closet day at the house. Peter assembled a mud room organizing cabinet that I ordered. Because the big and bulky items the previous owner had in there are all going. 

The closets in the house were awful! I mean awful. Not well thought out. Organizing systems are expensive, so we started with four spaces. This is now our coat closet on the first floor. 

Our linen closet on the second floor. 

Because we are giving my parents the master bedroom, Peter and I, will be in a room that is meant for a child. The closets are absurd and without reorganizing the space, I would have things everywhere. Within our bedroom is this nook area. Which to me is a wasted space. So I have turned it into a closet. On one wall is hanging space and on the other.....

Shelves and bins. 

There is a walk in closet in the room, but it had no shelves or ways to organize things until today's installation. 

Peter will now have his own office within our home. In this room is a wonderful walk in closet, and thanks to the Container Store, it too is organized. 

Thursday, August 19, 2021

Thursday, August 19, 2021

Tonight's picture was taken on August 11, 2008. It was Mattie's first week in the hospital. Next to him were his two art therapists. Two amazing women, who played a key role in Mattie's cancer journey. They figured out right away that Mattie loved to create, it took his mind off of how he was feeling, and as his journey went on, through art, we learned a lot about how Mattie was doing emotionally. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 37,281,516
• Number of people who died from the virus: 625,109

At the end of July in my email inbox, I saw an opportunity to Take The Plunge. A competition with monetary grants. That intrigued me. The first requirement was that Mattie Miracle had to be part of the Thrivent network, which we are, since several of their employees contribute, through their company, to the Foundation. I decided I had nothing to lose, so I completed the application. I thought hard about it as I have been trying to get initial funding to start a psychosocial referral and resource program, specifically to match families coping with childhood cancer to local therapists in the community, and pay for up to 6 therapeutic sessions. The reason this is so crucial is: 1) it is hard to find therapists with experience working with families managing a childhood cancer diagnosis, and 2) even if families find the right therapist (which is a royal challenge), then funding becomes an issue. As the cost of cancer care is astronomical, many families forgo getting the psychosocial support they need. I can't tell you how many people write to me from all over the country looking both for a connection to a qualified therapist and then funding for psychological treatment. Here is information I received in my email:

Take The Plunge : Can You Swim With The Sharks?

September 09 2021, 8:00 pm

Online Event

Join me and the Thrivent Member Network and Groundbreaking Entrepreneurial Expert, Shark and New York Times Bestselling Author, Daymond John as we host Take The Plunge : Can You Swim With The Sharks?

During this live interactive event, five local nonprofit organizations will take the plunge to earn your vote for funding for their nonprofit. You will have the opportunity to learn about how these organizations are impacting their communities and help the Thrivent Member Network award more than $25,000 in community grants!

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

I really figured we did not qualify to compete! But then out of the blue I received this email today.............

Congratulations! Your Non-Profit Organization Has Been Selected! All applications have been reviewed by our Regional Board Members and a vote has been conducted and five non-profit organizations have been selected to participate in the September 9 Live Event. Congratulations your Non-Profit has been selected as one of the five featured Non-Profit Organizations.

I learned that the 5 non-profits selected are: 2 in Ohio, 2 in Pennsylvania, and Mattie Miracle in Northern Virginia!

So now I will have to give some thought to our live web presentation! A presentation that the world wide web gets to vote on (September 9th at 8pm EDT). Apparently it is a popularity contest, with the non-profit getting the most audience votes wins. Therefore, starting in September, Mattie Miracle will have to start promoting this event on all our social media channels to try to get supporters and friends to tune in and vote! 

It was another day of cleaning out! By the end of each day, I am wiped out. This compilation is from our wedding. The bride and groom statue was actually our cake topper. We have nick named the bride, "lefty." She got that name because right before the wedding, her left hand fell off. We literally glued her back together again before she went on the cake! Now many years later, lefty still lives up to her name. 

The bell with a ribbon around it was the gift my in-laws gave to guests at our rehearsal dinner, and the lady with the cup over her head was given to me by Peter's parents. Apparently she is a traditional German wedding cup, in which you make a toast.

These clay hands were all made by Mattie in the oncology outpatient clinic. 

When Mattie was diagnosed with cancer, his kindergarten class united to buy him an iPod. It is engraved and it says "KW loves Mattie." KW was the abbreviation of Mattie's kindergarten classroom. 

In the kitchen, I had a Mattie closet. It was low to the ground and on his level. He loved having his own closet to put things in. I honestly forgot I stored his Scooby Doo lunchbox, silverware, and cups in that closet. Cleaning out has been quite a trip down memory lane. 

In the oncology clinic Mattie made many clay sculptures. This one he entitled, "an outdoor movie." Mind you he never went to one! When I grabbed a hold of it today, it shattered in multiple pieces. I glued it back together naturally. 

Some other sculptures and his special NYC yellow Lego taxi that he built with two Lego masters. 

This print of Mattie's right hand was taken the day before he died. 

What's with the steering wheel? It belonged to the famous Speedy Red. The ride on vehicle that we bought Mattie after we learned about his terminal diagnosis. Mattie loved every minute on Speedy Red, even if he road it with oxygen and a pain pump. 

In addition, you see Mattie's model magic roach and a little R2D2. R2D2 was given to Mattie by his lung surgeon, a lovely person, who continues to this day to contribute to Mattie Miracle. 

This was Mattie's very first camera! He loved taking photos and when we were in the hospital, he used my camera many times to snap photos of things. Some of the things he captured were a riot. 

In the 26 years we have lived here, we have never seen such a sight! Today in the oak tree outside our window was a sleeping raccoon. Ironically Sunny was hovering by the window and on guard all day. I had no idea why, until we later saw the raccoon. 

Wednesday, August 18, 2021

Wednesday, August 18, 2021

Tonight's picture was taken in August of 2008. It was our first month in the hospital and during that time we got to meet many of the wonderful artists who volunteered their time in the pediatric units. This was Jude, he was one of the musicians that Mattie enjoyed getting to know. Jude always brought interesting instruments with him and that evening Mattie learned about the rain stick and the ways it was used to create music. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 37,146,915
• Number of people who died from the virus: 624,199

Today was another day of organizing and cleaning out. Each day since the middle of June has been filled with this kind of taxing work. It isn't only taxing, it is emotional. I am posting about several notes I came across today. 

In March of 2016, Mattie received this letter in the mail. Students at the George Washington University were raising money for the American Cancer Society. I am not quite sure how the student got our address or knew Mattie had cancer, but there you have it seven years after Mattie died, we get this envelope. It wasn't just an invitation, but an invitation to a survivor's reception. 

You can only imagine how well this was received by us. Needless to say we wrote to the leadership of the American Cancer Society, as I did not want future bereaved families to experience this insensitivity. The American Cancer Society did respond to us and that year they got involved in the Foundation's lobbying efforts on Capitol Hill.   

Peter and I received this thank you note for presenting at a national social work conference. The note says:

Thank you so much for the wonderful presentation to APOSW. Your work is amazing and there were so many at the conference who commented on how much they appreciated your words and work on our behalf, and that of our patients. 

This note was sent to use by the head of the child life association. It says:

On behalf of the board of directors, CLC, I want to thank you for meeting with Jim and I last week. It was a true pleasure to meet you both in person and to learn about not only the Standards but also your vision to move your efforts forward. I am humbled by the magnitude of your work on behalf of families and staff when a cancer diagnosis brings them together. I've spent a few moments on Mattie Miracle Cancer Foundation's website and found that the moments turned quickly into 30 minutes! I'll carve out more time to finish reading. Mattie is a beautiful boy! You are very generous to share such lovely, meaningful photos with those who read the site. Peter, the post about your experience on Father's Day and Vicki, I imagine for Mother's Day is so honest and creates a space for parents to love, and cry, and grieve, and to celebrate their family. I predict Jim will be in contact with you shortly on behalf of CLC.

This note was written to us by Mattie's oncologist. Literally for the first year after Mattie died, she emailed me EVERY Tuesday! I literally mean EVERY Tuesday, as Tuesday was the day Mattie died. This note was sent on the 6th anniversary of Mattie's death. It says:

Although time has passed by and miles have distanced us, I want you to know that today especially and always you are in my thoughts. Despite the years, I vividly recall the many moments we shared in discussion, in laughter at Mattie's antics, in his dreams, in his creativity, in hope, and in complete and utter sadness. My heart still aches. I want you to know how much you mean to me. I want you to know how you and Mattie serve as an ongoing inspiration and example to me. I want you to know how thankful I am for you and your precious Mattie. Thinking of you, on this Tuesday and always. 

When Mattie was in preschool, one of his classrooms was called the Block Room. His teacher, Kathy, created a news sign each day of the week. Because the school was a co-op program, parents were required to volunteer in the classroom. So on Mattie's line leader days, I was the parent helper in the room. 

The fun part of the "news" is it announced who the line leader was, how many days the children were in school (so this was day one of school for the year), the plans entailed which rooms in the school were open for them to explore and play in, and Kathy always posted a cute good-bye saying. 

This good-bye was "blow a kiss jellyfish."

For the longest time (try 15 years!), these Block Room news have been on my kitchen wall. I am not sure why, perhaps because it was at this preschool that Mattie truly grew, developed, and formed his first friendships. Also while Mattie was forming friends, so was I, with fellow moms. Moms who continue to play a significant role in my life today. 

 

The good-bye saying on Day 13 was "see you soon baboon."

This was day 27 and the good-bye saying was "out the door dinosaur."

Day 30's good-bye saying was "toodle lo kangaroo."

Day 39's good-bye saying was "Don't eat too much turkey lurky!"

You maybe asking what is that symbol next to Mattie's name?! It was a MAGNET. That year, Mattie was "Mattie Magnet," as the school matched names with symbols that started with the first letter of a child's name. The previous year Mattie was "Mattie Moon." A name that stuck with him!

Day 57's good-bye was "don't forget your hat.... kitty cat."

Day 75's good-bye was "see ya soon raccoon."

Day 85's good-bye was "to the park shark."

Believe it or not the kids loved the good-bye sayings and they eagerly looked to the news that day to see which one Kathy selected!

The school did a big party on day 100. On day 107, the good-bye was "see you round.... hound."

Tucked in my kitchen's spice rack was a card I received in December of 2009 from one of Mattie's babysitters. She wrote,

I want you to know that you are always on my mind, constantly in my thoughts and forever hold a piece of my heart. I continue to think of my Mighty Mattie. Everything seems to remind me of him. I picked up the most perfect leaf off the ground because I thought, "Mattie would love this." I had to stop and watch the movie "Cars" on TV the other day because Mattie and I used to watch it together. He will never be forgotten. I hope you feel some comfort in knowing how deeply he has touched my life as well as many, many more. I still read the blog everyday and smile and cry with every story, picture and memory that you post. I love you, miss you, and wish you comfort and healing as we begin this new year. 

I had no idea how challenging disassembling the kitchen would be! It has been a nightmare. Today I tackled the rest of my tiles on the wall and the magnets on my refrigerator. Literally every place we visit, I get a tile and a magnet. Needless to say, I have a lot of travel reminders!

So many magnets that they extended to the side of my refrigerator!

However, in and amongst the magnets was this cartoon. It says, "There are plenty more hugs where this one came from Mommy." It was a cartoon both Mattie and I loved. 

These little drawings have been on my refrigerator since Mattie created them! I took them down but have saved them. 

To me the refrigerator looks barren. 

I miss the whimsy of what our refrigerator used to look like. 

I took this card off of the refrigerator today. Mattie got it in June of 2008, a month before he was diagnosed. That day he went on a canal boat ride with his friend Charlotte. The boat was pulled by two donkeys.... Molly and Ada. 

This was one of the decorations on Mattie's 6th birthday cake. That year he had a Scooby Doo party. 

Pictured with Mattie was Zachary. Mattie and Zachary were very close friends. Their friendship formed on day one of preschool. After school they would go on playdates together. On two separate occasions they went to Chuck E Cheese together and the boys got their photo taken each time.  

For Mattie's fourth birthday, he had a dinosaur themed party. At the party, each child got a dinosaur placemat. All these years, I kept several unused placemats. I am not sure why! But that's me. 

This was the front of the placemat!