Saturday, April 28, 2018

Saturday, April 28, 2018

Tonight's picture was taken in April of 2008. Only three months before Mattie was diagnosed with cancer. That day, Mattie came home from school, and given that the weather was lovely, he wanted to fly his kite. Ironically in a certain part of our commons area, there is always a breeze, which makes kite flying very possible!

Quote of the day: Teamwork is the secret that makes common people achieve uncommon results. ~ Ifeanyi Onuoha

I have been fighting my own private battle in DC regarding graffiti and encampments. Both of which have become OUT OF CONTROL over the last decade. Can you see this big MTG sprayed on the wall in front of the State Department? No one seems bothered by any of this except me! To me both graffiti and encampments say volumes about the health of our city and society in general.

I have been looking at this nightmare all throughout winter. My photo doesn't do justice to how horribly ugly it is! Today, we walked passed this area with Sunny and I am happy to report it is GONE. We are back to having a clean wall, but I know it won't last long!

Meanwhile, right near us we have had a man camping out on a major street of the city. Again this photo does not do it justice, as he literally took up an entire block with his clothes, materials, newspapers, bedding and the list went on. I have been complaining about him and our tent city down the block since March. 

So this was the BEFORE photo.....

This is AFTER! Today was the FIRST day in which our side walk dweller was removed. Along with his belongings, camp material, clothing, and trash. Do you see how big this portion of the sidewalk is? Well picture it taken over by an encampment!

The Mayor's office mentioned to me the outreach they are doing to help the homeless. My response was it isn't helping and having people live in our public spaces is not effectively assisting them in having a better and more productive quality of life. 

Before starting Foundation Walk tasks for the day, we walked Sunny down to the Washington Mall. Sunny loves the Mall, mainly because the Mall is filled with trees and squirrels. It was a glorious day today, which required us to bring water in tow for Sunny. We snapped a photo of him during a water break. 

Sunny through the tulips!!!

Meanwhile back in our home..... it is beginning to have that warehouse look again that makes me edgy! Many of our bins for the Walk are out of storage and sitting in our living and dining rooms. Mattie's room is our staging area for the raffle. Peter and I worked on wrapping raffle items today. We have 9 out of the 10 done!

My floors are covered in something Walk related!

I am still awaiting one item in the mail, before I can wrap the tenth raffle basket. Once that is done, then we will do our staging of the baskets, in order to capture a quality photograph. 

Friday, April 27, 2018

Friday, April 27, 2018

Tonight's picture was taken in April of 2009. Mattie was home between treatments and he and Peter decided to build this BIG bridge in our living room. The bridge was constructed out of cardboard boxes. A Mattie favorite! Mattie decorated the materials too and it was a full day project. Thankfully Peter had these skills and was good at engaging Mattie in all sorts of projects. My willingness may have been there, but may focus, energy, and emotional state depleted my creativity. I am grateful Peter took on that challenge, because when he and Mattie were building, Mattie was happier. 


Quote of the day: Some people believe that the parents' views are paramount in every case, or that life should be prolonged at all costs, but British law does not accept either of these views. ~ Dr. Wilkinson


I had a my licensure board meeting today, but before leaving our home, I had the opportunity to watch a bit of the morning news. It was in a news story that I heard about Alfie Evans. When the name came up, I was perplexed, because the story sounded so familiar. It was familiar to me because about a year ago, another family was fighting for a child's life in Britain. Except back then it was Charlie Gard (an infant being treated for mitochondrial DNA depletion syndrome - MDDS). I knew Charlie died, so I was confused..... who is Alfie Evans?

So I naturally went to the internet and looked up Alfie. Alfie is now almost two years old and suffers from a similar diagnosis as Charlie Gard. The parents have had to fight the doctors and government especially with regards to life support. Like Charlie Gard, Alfie has been offered treatment outside the Country. In Alfie's case, a hospital in Rome is ready to help and claims to have options for Alfie. How can one hospital say one thing and another advise a family a completely different way? The answer is.... it happens! We saw it with Mattie's cancer battle. However, the beauty of the United States, is parents have the freedom to take this information and ultimately make the decision as to what course of action to follow. We do not feel we need a bureaucrat to take on this decision and responsibility for us!!!

Overall, I honestly can't believe yet another family is dealing with life and death decisions in Britain and the doctors and the government are fighting over this child. I am getting VERY frustrated with the media muddying the waters and making this about Christianity, pro-life, or you insert the POLITICAL jargon of choice. 

The issue with Charlie Gard and Alfie Evans in my opinion has NOTHING to do with religion and beliefs. But everything to do with freedom of choice, decision, and ultimately who we believe should be in control over our own destiny? I for one do NOT want the government dictating anything to do with my health care of the health care of those I love. In fact, the hospitals in Britain are lucky they aren't dealing with me. I empathize with the Gards and Evans! If you are on the fence about this, I suggest taking a step back. Put down the media interpretation of the situation, and think! What if this were my child? Would you really want doctors and your government telling you that YOU need to remove life support for your child or worse that YOU can't take your child to another country to receive treatment!? 

I SAY NO thank you and thank goodness, I live in the United States of America. Where what we debate on is whether someone should have the right to DIE, NOT live. In fact, Alfie, was taken off ventilation on April 23, but continued, surprising the doctors, to breathe. He has also been deprived of water and food. The parents want to take him to Italy, where a hospital is willing to treat him. In fact, Italy has made Alfie a citizen! Yet, the British government says no, and has police stationed to keep the boy from being rescued. 

This is not a soap opera or a movie, this travesty is happening in our world in 2018. I am left speechless. The parents are being made out to be unstable and incapable of making this tough decision. Really??? If knowing your child has a rare condition that is killing him, wouldn't that make you unstable too? Frankly if this didn't push a parent on the edge, then I would say something is wrong with the parent. However, doctors and governments are NOT always right! When they start pronouncing what we should and should not do regarding our right to access medical treatment, this crosses a line. 

Losing a child to any disease is heart breaking. But what is even worse, is a child dying, in which you as the parent feel like you haven't done everything MEDICALLY possible to save your child. My thoughts are with the Evans' family and others struggling to have the freedom of choice regarding their medical care. 


Fight over Alfie Evans, A brain damaged baby, Divides U.K.:
https://www.nytimes.com/2018/04/26/world/europe/alfie-evans-doctor-parents.html

Thursday, April 26, 2018

Thursday, April 26, 2018

Tonight's picture was taken in April of 2007. Mattie was five years old and he loved to build, using just about anything really. But most especially building with Legos! That day, Mattie decided to create a Lego city with a train track included. Mattie was always busy and moving. Rarely did you see him sitting down or glued to the TV. In fact, the tell tale sign Mattie was sick was his lack of movement. In the process, Mattie kept us very busy engaging his mind and his little body. 


Quote of the day: Don't stop when you are tired. Stop when you are done!! ~ Brayden Brad


I saw this quote and decided it had to be on tonight's blog. Mainly because I feel very tired. Planning and coordinating the Foundation's Walk is a job for ten people. However, it isn't only working the event, but I have to raise money too. So I would say between so many Walk things today, I am exhausted and yet as the quote points out.... you can't stop until you are done!

But what does done mean? Sure you could say after May 20th, the day of our event, I will be done! Unfortunately that isn't the case. Not only from a logistics stand point, since it takes me about a month to close the event and process all donations and gifts in kind, but as the Fall season rolls around, I need to start planning for the next Walk. I feel that I am NEVER done, and that has to be true if I want the Foundation to fund its services and keep Mattie's memory alive. However, stopping when I am done, is far more complicated than the Foundation Walk. 

Stopping when I am done seems to be tied into Mattie! As parents nurture their children on a daily basis, my surrogate is the Foundation. The Foundation symbolizes Mattie, his life, and what he taught us. So unlike the typical job that one hopes to advance in and eventually retire from, my work is MUCH different. There is never an advancement in terms of my position or role, and I can't even fathom what it would mean to retire from Mattie Miracle, because who would there be to ensure Mattie's legacy. All complicated questions that twirl around in my mind. 

I think about all of these things as I plan every Walk. Which is why planning the walk isn't just a task, it has a deep emotional component that can be wearing. My Foundation work isn't something that I turn on from 9am to 5pm! As Peter knows all too well, because there are some seasons during the year when I am pulling 12 hour days and Peter is working his job by day, and then in the evenings and weekends is working on the Foundation. We take few breaks, because this is what we feel is needed to develop a solid footing for the Foundation. 

Ironically I did not think I had MUCH to say tonight, but as is typical, I just sit down and reflect and then my fingers do the rest. I could have easily just said I am tired, in a bad mood, and I will write tomorrow, but I had to tease out why I am in a bad mood. Overall, my mood is influenced by how tired I am, but I am also aware of this time of year where I am bombarded with graduations, hearing about colleges, and family summer vacations, and yet my comparison is I am working on the Foundation. I am planning a walk, and keeping alive the memory of a child who no longer physically exists. It is quite the comparison and yet this is my life and the challenge I always face is remaining sane and stable along this journey. 

Wednesday, April 25, 2018

Wednesday, April 25, 2018

Tonight's picture was taken in April of 2007. Mattie was five years old! What I think was an absolute hoot about this photo was Mattie wanted to wear a Christmas sweater in April! Putting that aside, this was what our living room window used to look like. Mattie always decorated it in some way. After Mattie died, I left up all his things for years, until they started to disintegrate. Nonetheless, there are still a few of Mattie's things on our windows. 



Quote of the day: I hated that nobody mentioned her, it was as if she had never been. ~ Barbara Bush


Last week First Lady, Barbara Bush died. I naturally knew some things about Barbara Bush, but the most glaring thing I did not realize was that one of her daughters , Robin, died from leukemia at the age of 3. When Robin died, Mrs. Bush was only 30 years old and her son, George W. was 7 years old. For the most part I think this tragedy was so great for this family that it wasn't talked about openly. 

I guess I am still quite surprised that we shared such a loss in common. In one of the articles below (Remembering Barbara Bush) it talks about Barbara's white hair. To be perfectly honest I never knew the significance of the white hair, or understood that her hair turned white when she was only 28, as she was dealing with Robin's cancer diagnosis and then death. 

The article mentions that the white hair was Barbara Bush's public statement of grief, one she felt was needed since she thought that Robin was forgotten by others and the world. A sentimental most bereaved parents get all too well. 

The second article (Tragedy created Bush Mother-Son bond) equally fascinated me because it talked about the ramifications on an entire family and the relationships after a child dies. So much so that George W. observed his mom's depression and took it upon himself to spend time with her, tell jokes, and in a way be her caregiver, when he was only a child. A child who lost a sibling. Interestingly enough George W. is mentioned in this article, with respect to how this tragedy affected him and created a more fatalistic way of looking at life. 
Which makes sense because at the tender age of 7, he understood that the impossible (the death of his younger sister) is possible. 

Below is an excerpt from the Washington Post article that resonated with me. Especially the stress and confusion of sharing with others that a child is dying. Barbara Bush chose not to tell her son, George W., that Robin was dying. So he never said good-bye to her or even understood how seriously ill she was. It certainly is a judgment call, and a hard one, for a parent to make. When Barbara Bush was asked by George W. why she did not tell him about his sister,  her response was, "it wouldn't have made a difference." Frankly I think she was trying to spare her son hurt and anguish, but at the end of the day when dealing with child loss, there is no averting the truth and its consequences. 

From the Post:

Even after all these years, Barbara Bush still questions the decision not to tell her son that Robin was dying. "I don't know if that was right or wrong. I mean, I really don't, but I know he said to me several times, 'You know, why didn't you tell me?' " she said. "Well, it wouldn't have made a difference." She and her husband feared that the young boy might inadvertently let Robin know she was gravely ill, but mostly, she said, they didn't want to burden him. "We thought he was too young to cope with it," she said. After Robin's death, the pain that hung over the house was often unspoken, according to Randall Roden, a childhood friend of George W. Once, while Roden was spending the night, Bush had a bad dream and his mother rushed in to comfort him. "I knew what it was about – he had nightmares for some period of time," said Roden. "It was one of the most realistic experiences I have ever had about death and I am certain it had a profound effect on him because it had a profound effect on me." It bothered Barbara Bush that friends never mentioned Robin, no doubt because they wanted to spare her and her husband's feelings. But the silence rankled. Finally, as she tells the story, George W. helped break the ice, when one day at a football game he told his father that he wished he were Robin. Friends who were sitting with Bush and his father froze in embarrassment, and his father asked him why he said it. "I bet she can see the game better from up there than we can here," his son replied.


Remembering Barbara Bush, grieving mother, through my own mother’s eyes:

http://www.kansascity.com/opinion/opn-columns-blogs/mary-sanchez/article209478709.html

Tragedy Created Bush Mother-Son Bond:

https://www.washingtonpost.com/wp-srv/politics/campaigns/wh2000/stories/bush072699.htm

Tuesday, April 24, 2018

Tuesday, April 24, 2018 -- Mattie died 449 weeks ago today. 

Tonight's picture was taken on April 4, 2009, Mattie's 7th birthday. Which he celebrated in the hospital. Mattie's art therapists made him a special card.... featuring roaches of course! Mattie never saw a roach in his life, but he loved seeing me jump over the thought of them! 


Quote of the day: People are definitely a company’s greatest asset. It doesn’t make any difference whether the product is cars or cosmetics. ~ Mary Kay Ash


Here are my top facts to report today for Mattie Miracle's 9th Annual Walk (May 20th, 10am to 2pm):

1. We have 23 corporate sponsors this year!!!! Together they have helped us raise $33,000!
2. So far we have met 56% of our Walk goal! We have raised $50,000 and are on our way to $85,000.
3. 84 people have pre-registered for the Walk so far
4. Over $900 in on-line raffle ticket sales so far

To visit our Walk website, go to: www.mmcfwalk.com


For the past couple of days, I have been working on staging our Walk raffle baskets. Mind you, we have been working on getting donations for these baskets since December. Raffle tickets can be purchase on our Walk website and 100% of raffle proceeds go to our Walk goal, and all Walk fund support our psychosocial services. 

Wish Upon A Star

Basket includes:

4 complimentary One-Day Park Hopper tickets to Disney World, FL 
Mickey kids hat
Disney kids L t-shirt
Mickey Stuffed animal
Mini Minnie Mouse
Mini Donald Duck
two Disney Themed spatulas
Disney Pez Dispenser
2 Disney Gel Pens
Mickey Mouse Stylus
Disney Lip Balm
Disney Paper Mache Basket
Disney Activity Book with 40 Stickers

Minnie Mouse Mess Free Marker and Pad

Washington Capitals Fan Pack

Basket includes:

2 great aisle seats only 6 rows behind the glass! (Section 115, Row F) at a home game! 
Autographed photo of John Calson (#74) framed
Capitals Storage Cube
Capitals Throw Pillow
3 puck softee set
texting gloves
lunch box
drawstring bag

Washington Nationals

Basket includes:

Nats vs Braves - July 22nd @1:35pm. Game package includes 4 Diamond Level seats with parking and “all you can eat” in the Diamond Club and/or in-seat dining! Harris Teeter promotional give-away of kids’ batting helmets to the first 10,000 fans, ages 12 and under.
Harris Teeter promotional give-away of kids’ 
batting helmets to the first 10,000 fans, 
ages 12 and under
Carolyn Has:  Red Cube for Basketing, Pillow, throw blanket, texting gloves, 
Lunch box, 3 ball softee set, mini hoop set
4 grandstand tickets Potomac Nationals

Money Tree

Basket includes:

$40 Whole Foods 
$10 Great Harvest Bread Company 
$50 Amazon
$20 Barnes & Noble
$25 - Gap/Old Navy 
$20 Dairy Godmother 
$25 Macy's
$25 Shell Gas Card
$25 Target
$25 Nordstrom’s
$100 Rack Room Shoes

Dining Around Town

Basket includes:

$100 Hank's Oyster Bar
$75 Copperwood Tavern
$50 Elevation Burger, Arlington
Peking Gourmet Inn
$100 Dandy
$50 Tempo Brunch
$25 Hard Times Café, Alexandria
$225 Great American Restaurants (e.g., Caryle)
$150 Del Ray Café
Panera pick two (one per month for a year)

SCOUTing For the Perfect Bag

Basket includes:

SCOUT Spring Shopper
Plus 1 
Chillabuster
Daytripper
Little Tripper
Weekender
BJ Bag 
Pocket Rocket
Deano

Customer Shopper

Here's To Your Health

Basket includes:

Crest HD tooth whitening system
2 Oral B Electric Rechargeable Toothbrushes
2 tubes of Crest Pro-Health Jr. toothpaste
SKS Dental - Free Zoom in-office whitening (Arlington, VA)
5 Pilates Sessions at Georgetown Pilates (Washington, DC)
8 Zumba by Hilary classes (Alexandria, VA)
Blue Yoga Mat
10 Person wine tasting at Barrel Oak Winery (Delaplane, VA)
$25 Ulta Beauty Gift Card
$70 Bliss Spa Certificate 
Power Expanding - Toning & Stretching Muscles
"Keep Calm & Bake On" Spatula
Beach theme glass cutting board
Silver Toned Tool Box

"Live, Laugh & Love" towel

One of a Kind T-Shirt Quilt

Basket includes:

One Lucky Winner will be able to turn all of those favorite t-shirt memories into a warm and cozy keepsake quilt! You will have the opportunity to consult with a master quilter who will then transform your ideas and materials into a masterpiece.

+ 5 Mattie Miracle Walk t-shirts

Apple iPad Pro

Basket includes:

iPad Pro 16gb, Silver
Compass Wireless Headphones
2 - Ten Foot Premium Lightning Cable(works with iPhone 7, 7plus, 6S, 6S plus,
SE, 6, 6 Plus, 5S, 5C, & 5
2 USB Car Chargers
Power Bank - Portable Power for mobile device
Projection Time Color Changing Alarm Clock
2.4 amp Dual USB Wall Charger
Green wood crate

Collectible Lego Systems

Basket includes:

Mining Expert Site - 883 pieces
Coast Guard Headquarters - 792 pieces
Pizza Van - 249 pieces
Fire Ladder Truck - 214 pieces
High-Speed Chase - 294 pieces
Heavy-Duty Rescue Helicopter - 415 pieces
Pick Up & Caravan - 344 pieces
Air Show Jet - 87 pieces
Mountain Fugitives - 88 pieces
Off-Road Chase - 37 pieces

LED Key Light

Monday, April 23, 2018

Monday, April 23, 2018

Tonight's picture was taken in April of 2009. This was a typical occurrence in Mattie's hospital room.... water play. I can't tell you how many bins like this we accumulated over Mattie's extensive hospital visits. This may look like a cute bin. But its purpose is for vomit. A child on chemo doesn't expel a small amount, so such a bin is necessary. But we had bins for medical purposes and bins just for play. As you can see Mattie made a bug soup! Naturally, as Mattie was fascinated with bugs and loved seeing my disgusted reaction! In this photo Mattie was sharing the soup with his nurse that day. All of Mattie's nurses had his number and they did a great job playing along, showing interest, and at times hamming it up. 


Quote of the day: You have not lived a perfect day, unless you have done something for someone who will never be able to repay you. ~ Ruth Smeltzer

About two years ago, we began to fund a child life specialist at MedStar Georgetown University Hospital named Morganne. Morganne is bright, very approachable, and presents herself very professionally. 

As Mattie Miracle is part of a national childhood cancer alliance, we agreed to fund a child activity room today at the Alliance for Childhood Cancer's Action Day. What is Action Day? Action Day is hosted by the Alliance and it invites parents from around the Country to come to DC and receive advocacy training. After a full day of training, these families visit Capitol Hill tomorrow and talk with staffers about their experiences with childhood cancer and what we as an advocacy community need from our legislators. 


While the parents are receiving training, their children have the opportunity to attend a children's activity room. Such a room is necessary because many families travel to attend these Action Days and the children are invited to visit Capitol Hill. Children like going to the Hill but they do not feel the same about sitting still to listen to  lectures on advocacy. 

So Mattie Miracle funded the activities in this room as well as paid Morganne's salary for the day. Morganne got the kids outside on this beautiful spring day to play with sidewalk chalk. 

These two ladies are friends with Morganne. Morganne brought her pediatric nursing buddies from Baltimore to help volunteer at this Children's Activity Room. Wasn't that simply lovely? These are professional women who made the time to do this for free!

Another amazing volunteer! These volunteers worked super hard because there were four of them and twenty children for seven hours! But these women are skilled working with children. Morganne requested all sorts of materials and items from Mattie Miracle to purchase, in order for the children to be engaged and active today. Everything from paint to capes! It sounds like it went very well! 

Morganne captured some photos for me today. These photos are shared after receiving permission from their parents! 

Can you see the bubbles!? It is the simple things that kids always love!!! I remember all the many bubble wands Mattie had both before cancer and after his cancer diagnosis. 

Kids had the opportunity to pick out an item they wanted as well! The Walk keeps me busy, so there is no way I could be at this event, but I am so glad Morganne and her nursing friends represented Mattie Miracle today!

Sunday, April 22, 2018

Sunday, April 22, 2018

Tonight's picture was taken in April of 2009. You may be asking yourself.... what was going on here? Well, Mattie was in his hospital room with an entourage of people having a physical therapy session. Mattie's therapy sessions were always one for the books! My joke was Mattie expanded the repertoire of his physical therapist because in order to work with Mattie, she had to think outside the box. Not only was Anna willing to work with Mattie, she approached her interactions with creativity, enthusiasm, and was always flexible given Mattie's mood and how he was physically feeling. 



Quote of the day: You can't get there by bus, only by hard work and risk and by not quite knowing what you're doing. What you'll discover will be wonderful. What you'll discover will be yourself. ~ Alan Alda

I am not sure if I work harder during the week or on the weekend. It was a full weekend of chores. I spent part of the day on our April newsletter and the other part on staging our raffle baskets. I have five out of the 10 staged and ready to be wrapped. So I am making progress, but it is slow. 

Meanwhile, this afternoon, Peter encouraged me to get it together and go for a walk with him and Sunny. It was a great idea, as I needed a change in venue. On our way back home, we passed our local restaurant which makes their own gelato. I happened to notice a couple sitting outside eating gelato together, and I said to Peter.... wow how does that work? I told him we have to learn to sit outside and eat gelato. The weekends are usually occupied with Foundation work, so much so that there isn't time to smell the flowers/eat the gelato. I am hoping we can change that post-Walk.