Saturday, June 2, 2018

Saturday, June 2, 2018

Tonight's picture was taken on April 4, 2009. This was Mattie's 7th and last birthday. He celebrated the official day in the hospital. Specifically in the child life playroom. A room Mattie frequented. Mattie spent that whole morning decorating the playroom for his party, as he awaited his friends to come to the party after school. The reason I am showing you this photo tonight is because of the boxes of cupcakes in front of Mattie. They came from Georgetown Cupcake, a company that is very generous with Mattie's hospital, as they provide cupcakes free of charge to all children having special occasions within the hospital.  I can't think of Georgetown Cupcake without reflecting on this moment in time. 


Quote of the day: You are the illness I will never cure. You are the poem I will never write. You are the thought I will never finish. You are the text I will never read. ~ Maria Elena

This is what the interior of Georgetown Cupcake looks like. It is a hopping and happening place. I would love to know how many cupcakes a day they sell, but from the pre-order line that I was on, I would say there were at least 70 bags of cupcakes awaiting pickup today alone. That doesn't account for the people behind me standing in line to order cupcakes. The cupcake business is alive and thriving apparently!!!

My friend's son is graduating today from high school. I have been to a few graduations since Mattie died, and I don't enjoy them AT ALL! I think Peter dislikes them even more than me. So when presented with today's invitation, I opted that Peter and I would not go to the ceremony but instead stay behind to run errands and set up the party. So first stop was Georgetown Cupcake. 

My friend and a her friends live in Alexandria, VA. So unlike me, they aren't as familiar with Georgetown Cupcake. But when my friend was looking for something special to go on the dessert table, I suggested these cupcakes, because they can design ANY logo to top the cupcakes. The fondant features Northeastern University's logo and mascot (the husky).

Then there are also mini cups with a cap and tassel. They smell delicious!!! Mind you, years ago I went around DC and Alexandria, VA on a cupcake tour with my friend Tina. Tina and I tried practically every bakery that makes cupcakes! My verdict still is that Georgetown Cupcake is number 1!

For occasions like this, I am better off working, rather than absorbing the significance of the day. That is what I say, but I already have a migraine, so my head is very aware of the day. I don't even need a Georgetown Cupcake, to think of Mattie. I just need cupcakes in general. Do you see the cupcake Anna (Mattie's physical therapist) was holding in this photo? I made MANY cupcakes for Mattie, any time I was home. Then I would take two dozen to the hospital with each admission. I used them as incentives to get Mattie to do his physical therapy. They were very effective. That day, Mattie shared a cupcake with Anna, as it was her birthday. But here's the thing.... Cupcakes were one of Mattie's foods of choice on chemo, and given how emaciated he was, I gave him anything he could tolerate eating! So the cupcake has SO MUCH significance to me!!!!

Friday, June 1, 2018

Friday, June 1, 2018

I made this composition today and sent it to Margaret's daughter. As today marks the fourth anniversary of her death. Margaret was Mattie's preschool teacher, and became a close friend of mine. Mattie really matured and thrived in Margaret's class and frankly most of the moms in that class (back in 2005), I am still close to today. There are many photos posted here, some when Mattie was alive and two after he died. You can see Mattie's preschool photo (lower right) as they toured a garden, Mattie sitting on the playground with Margaret and my friend Jane's daughter (upper right). The photo where we were all dressed up, was because Mattie Miracle was invited to the Four Seasons to receive a recognition award from Georgetown University Hospital (lower left). Then of course the photo in the center was Margaret, her husband, daughter, son in law, and first grandchild at a Mattie Miracle Walk. Margaret helped me behind the scenes and always fundraised for us. In fact, it is thanks to Margaret that we received our first corporate sponsor for the Walk back in 2011. Why the roses? Because Margaret had an extensive rose collection in her backyard and loved them. 


Quote of the day: Was it always to be like this, she wondered. A moment of joy followed by a new sorrow? ~ Soheir Khashoggi

Today was a bittersweet day because on one hand it's the anniversary of my good friend dying and on the other hand I celebrated my friend, Peggy's birthday. It is surreal how this can even be possible. But it seems to be that life is filled with happiness and sadness at the same time. They aren't mutually exclusive anymore.

To celebrate Peggy's birthday, we had a lovely lunch in Old Town, VA, and believe it or not, I started lunch with chilled cantaloupe soup! It was absolutely amazing. 

Pictured with me is Jane (in pink) and Peggy (in blue). Jane and Peggy work VERY closely with me during Walk season. They help me make the Mattie Miracles possible by helping me raise funds and inviting people to the Walk. Prior to having these two ladies, I really did not have a daily sounding board, help, and input about the Walk. Especially help within the last three months prior to Walk day. I am very lucky they are so committed.

To put things into context, look at the photo above of Mattie in the playground with Margaret and a little girl with red hair. The little girl is Nancy, and Nancy is Jane's daughter. We have known each other for 13 years and as for Peggy.... well I met her at a jewelry party a friend hosted shortly after Mattie died. Though Peggy did not know me back in 2009, she gave a portion of her jewelry party sales that night to Mattie Miracle. So if I step back and wonder where my friends come from, there is only one answer.... Mattie. We are all connected to him in some way. 

Thursday, May 31, 2018

Thursday, May 31, 2018

Tonight's picture was taken in May of 2006. Mattie was four years old and was in preschool. That day, the children were making gak. A kind of clay like substance, except it is green and more slimy. Mattie LOVED it! The person handing him the gak was Margaret. Margaret made Mattie's first year of preschool very memorable and as such, we became close friends. On the anniversary eve of her death (four years ago), I remember her and the wonderful teacher she was. She set a tone that carried over to how the parents of these children related to each other. In fact, many of the parents of the children you see in this photo are Mattie Miracle supporters. 


Quote of the day: You don’t have to say everything to be a light. Sometimes a fire built on a hill will bring interested people to your campfire. ~ Shannon L. Alder

This cutie is Margaret's grandson. He and his family were at the Walk. In fact, they attend our Walk annually and help us fundraise. They have picked up where Margaret left off with Mattie Miracle. 

The reason why I am showing you this cutie, is because I wanted you to see our Walk t-shirt this year. It will help put my story that I am about to tell you into context.

This afternoon, I met up with a friend of mine at a local pastry shop in Alexandria, VA. While there, she handed me an exact Walk t-shirt that she was given. Apparently when I went to grab the shirt and fold it, the woman sitting behind us said loudly.... "nice shirt, can I see it." So I went over to her and her friend and explained the nature of the shirt and how it was used at our awareness walk. 

It turns out that this woman was once a pediatric nurse and she recalled with me caring for a little boy, named Sylvester, who was dying from cancer. I thought it was fascinating that this death was years ago and yet the boy and his memory remained very fresh in her mind. Frankly this doesn't surprise me as nurses and their patients/families develop a close bond, as I see it with Mattie and many of his nurses. They are our memory keepers. But it was very meaningful to hear this woman's story, her experiences, and to hear her commentary about our shirt.  

But our interaction did not end there. She immediately took out her check book and made a nice contribution to Mattie Miracle (do know that I never mentioned that I lost a child to cancer, I merely explained what the Foundation does). I was so touched by her kindness and generosity that I handed her the Walk t-shirt. A shirt that she plans on sending to her daughter in Culver City, CA. I also happened to learn that this woman is originally from Massachusetts. Why doesn't this surprise me? I find people in Massachusetts are actually very friendly and personable and it always amazes me how I can have more conversations with people in one day when visiting Boston, than I can have for an entire week in Washington, DC. 

Wednesday, May 30, 2018

Wednesday, May 30, 2018

Tonight's picture was taken in May of 2006. Mattie was four years old and that day he went with Peter to buy his first bicycle. It was a big day!!! They assembled it together and when I returned home, I found Mattie riding his bike with training wheels. 




Quote of the day: Was it always to be like this? she wondered. A moment of joy followed by a new sorrow? ~ Soheir Khashoggi


I found tonight's quote while searching for words that would capture bittersweet moments. In so many ways, as I watch my friends acknowledge and celebrate milestones with their children, for me these moments are all bittersweet. I can be happy for my friends and sad for myself at the same time. Which is why there really are no purely happy moments in my life anymore.  Yet how do you try to describe this conflict to someone, without making them feel badly or guilty?! The answer I have found, is.... no way exists. Someone in the end is going to get hurt hearing about this reality. 

I will return to Walk photos tomorrow, but tonight, I am highlighting the flower arrangements I created today. They aren't for me, but for my friend, whose son is graduating from high school this weekend. She has family and friends coming into town starting tomorrow, so today was the perfect day to do arrangements, without people under toe. 

First stop was to buy flowers! That for me takes time. I must have spent close to an hour in the store figuring out what flowers went with each other. 

Get the drift....I knew I had several arrangements to make, so it requires a lot of flowers. But here is the funny part about all of this. What one flower arrangement would cost from a florist, I can make about five for the same cost. 

So here is the first cutie! Lilies and daisies. Remember it is for a boy.... so I constrained myself from buying roses and anything pink. 

The angle of this photo didn't come out great, but the lilies and daisies look lovely together! They will serve as a centerpiece on a buffet table. 

My favorites.... sunflowers. I chose them to greet guests as they enter the party!

This is the centerpiece I made for the dining room buffet table. This one came out great. It has a country feel to it with hydrangeas and alstroemeria. 

Yes in my opinion even the powder room needs flowers. To me Gerber daisies scream..... HAPPY!

Tuesday, May 29, 2018

Tuesday, May 29, 2018 -- Mattie died 454 weeks ago today.

Tonight's picture was taken on June 15, 2009. We were in the pre-op area of the hospital, as Mattie waited to be taken back to an operating room for his sternotomy. A procedure that was to remove multiple tumors from his lungs. Peter was dressed up like this because he was going to escort Mattie and the team to the OR. This enabled Mattie to be one of us until he was unconscious. Only one of us could go with Mattie, and it was Peter who always went. However, post-op both of us always went to the PACU (post anesthesia care unit) because literally it took both of us to manage Mattie's screaming and the pain. You may notice a sign taped to Mattie's hospital gown. On it, it said, "Dr. Chahine, Give us a Mattie Miracle." It was our cute message to Mattie's thoracic surgeon, who was a LOVELY, competent and compassionate doctor.  


Quote of the day: Walking is the best possible exercise. Habituate yourself to walk very far. ~ Thomas Jefferson

Tonight's posting features the raffle at our Mattie Miracle Walk! In many ways the raffle is an event within an event. It takes months of planning and coordination, on top of all the other Walk activities. Thankfully I have worked with my friend, Carolyn, for nine years on the raffle. So I am not doing this alone. But the raffle entails soliciting businesses for raffle merchandise, staging all these items and wrapping them, and of course selling tickets on-line and in person. This year we had 40 businesses donate to our raffle, and currently I am working on gift in kind letters to each of these contributors. We raffled off 10 baskets this year and in total, the raffle generated $8,000 toward our $95,000 outcome!

This was a first for us. We had items this year that were donated to us and NONE of them were a good  fit for our themed baskets. So Carolyn suggested we do a silent auction of these three items at the Walk. It turned out to work wonderfully, as we got $75 or more for each of the footballs. 

The Raffle is always a popular tent at the Walk. My goal is to make the items look as enticing as possible to draw people into the tent! 

The lady in orange is Dr. Shad. She was one of Mattie's doctors and is now the chief of pediatrics at Children's Hospital at Sinai, Baltimore, MD. In a few weeks we will be meeting with Dr. Shad, the Hospital president, and other administrators for a $40,000 check signing presentation. As we plan to pay the salary of a child life specialist at Sinai. 

Peter always helps Carolyn announce the raffle winners. This picture is a good one, because it features Peter, Ellie (Carolyn's daughter, a classmate of Mattie's, and a loyal volunteer), and Joe (from TeraThink -- our largest corporate sponsor since 2011). 

One of the winners of our silent auction item.... a laser signed Redskins Football from 2017. 

This is Peter and me with my cousin, Maria. Maria and her husband came all the way from Michigan to attend this year's Walk. Maria won the iPad raffle basket! 

The winner of the Lego raffle basket was Michaela, Eric, and James. Michaela is the daughter of Debbi. Who is Debbi? Debbi was Mattie's sedation nurse and now our friend. For the past two years, Debbi and her family have come to our Walk. Eric (Debbi's younger grandson) couldn't do enough to help me at the Walk this year. He is extremely efficient and helpful, that I told Debbi we are making him an official volunteer next year!

Monday, May 28, 2018

Monday, May 28, 2018

Tonight's picture was taken in June of 2009. Friends of ours went to Hershey Pennsylvania, to visit Hershey Park. They were thinking of Mattie and brought him back a Hershey Kiss pillow. I think it was absolutely ironic that Mattie posed for a photo with this pillow and was smiling! Why? Because Mattie hated chocolate. He hated its smell and look and always had a fit if he saw me eating it. Even when I was pregnant with Mattie, if I tried to eat chocolate, it would make me sick. Which was why for 9 months, I couldn't eat chocolate. So this was the closest chocolate Mattie ever got close to..... a chocolate pillow. 



Quote of the day: It’s so much darker when a light goes out than it would have been if it had never shone. ~ John Steinbeck

Today, I am returning to highlighting our Walk through photos! It is hard to believe that the Walk was only a week ago yesterday. 

These photos illustrate our corn hole tournament. 
We had 30 people register to play corn hole. Given that we have 6 boards, six sets of two can play at one time. However, there are multiple sets played in order to result in a first, second, and third prize winner. This photo is of the great volunteers we had who ran the tournament and helped judge and keep score. 

Three years ago, Peter worked with a group of Girl Scouts to build and design our corn hole boards. To me they are a work of art. 

There were two MUSTS I had..... 1) the Girl Scouts had to follow our color palate (orange, red, and yellow) and 2) the Mattie sun had to have ONLY 7 rays. As each ray in our logo represents one of the years Mattie was alive. 

This is Ellie. Ellie and Mattie went to preschool together. Ellie has been volunteering with the Foundation since middle school. She has done everything from designing headbands, to flower pots, and now works hard on fundraising and setting up the Walk event. Ellie and her parents get to the event at 6am each year, and are instrumental at helping Peter do the heavy lifting to set up tents, tables, chairs, and posters. We couldn't do the Walk without them. People may also notice that I wear a butterfly headband at each Walk. This headband was designed for me by Ellie. The headband is a tribute to Mattie's life and his friendship with Ellie. 

This is a photo of Mike and Matt. Mike is Tricia's (Mattie's favorite HEM/ONC nurse) husband and Matt is Nicole's (Tricia's daughter) boyfriend. Tricia's whole family participates in our Walk every year as well as the corn hole tournament.

Our corn hole winners (Ethan, Ellie, and Mike), along with Ann (the coordinator of the corn hole tournament).

Ann and me with Ethan (our first prize winner..... 4 diamond level tickets to a Nat's baseball game, which includes food and parking).

Ann and me with Ellie (our second prize winner... Amazon Echo Dot and 2 infield tickets to a Nat's baseball game).

Ann and me with Mike (our third prize winner...... $50 gift card to the Great American Restaurant group). 

Sunday, May 27, 2018

Sunday, May 27, 2018

Tonight's picture was taken in June of 2009. Mattie was home recovering from his third major surgery. I can't tell you how many pink bins like this we had from the hospital, as you get one practically with each admission. What was it for? To catch vomit! As on chemotherapy the volume of fluid that can be expelled is not small. In any case, these bins made wonderful toys when they were in use. Mattie loved to fill them with water, and use them for water play. Since I despised Sponge Bob, the TV character, this inspired Mattie to LOVE him even more. So he would create little replica Sponge Bob's and in this particular case, Sponge Bob (who was literally made out of a sponge), was going to go swimming in Mattie's pool!


Quote of the day: Have nothing in your house that you do not know to be useful, or believe to be beautiful. ~ William Morris

Peter and I bought vegetable plants for our neighbor yesterday and today, we went to plant her garden for her. Given that she is older and still recovering from a fall, we decided to help. 

This is a view of our deck from Mattie's bedroom window. Which is now my view from my desk! To clean up this space after winter, is always hard. As it involves planting and painting. But when it is done, things always look better. Well that is until you open our shed (the closet behind the BBQ)!

After planting our neighbor's garden, Peter decided to tackle our shed. This is what our shed looked like. It was the catch all for supplies and things. 

This is actually a big space to store things! But I haven't seen it cleaned out in a while. 

We purged a lot of things and this is the final product. Can you see Mattie's yellow truck? There are some things that Mattie played with outside that I still can't part with. Needless to say, it will be wonderful to open the shed now without things falling out on us. 

Peter said this was his best friend today! Our dumpster. We are lucky to have access to dumpsters in our complex. It makes throwing out junk very easy, and basically everything we tossed which was not salvageable went into the recycling dumpster.