Saturday, May 20, 2017

Saturday, May 20, 2017

Tonight's picture was taken in May of 2009. Mattie was pictured with Charlotte. Mattie deemed Charlotte "his girlfriend." In fact, I would say he was in love with her and one day in the car coming home from a playdate he proposed to her in the back seat of my car. He even took out a ring he got as a prize from the dentist office. I had no idea he had this mind, but it was absolutely adorable to watch this interchange. In so many ways I think Mattie understood he had to make the most out of life while he could. A rather sixth sense. I feel this photo is very appropriate to post, because Charlotte raises money for the Foundation every year. My hunch is she does this in memory of the close friendship and bond she shared with Mattie. Don't they look happy just being together? 


Quote of the day: We live in a world in which we need to share responsibility. It's easy to say, 'It's not my child, not my community, not my world, not my problem.' Then there are those who see the need and respond. I consider those people my heroes. ~ Mr. Rogers

We are in full Walk mode at our home today. My parents, Peter's parents, and my lifetime friend, Karen are all visiting. They help with the last minute logistics and the loading and unloading of materials for the event. We always rent a suburban to manage all the items, but this year I would say that we may need to migrate next year to a UHaul van!

Even Sunny got in the mix! Poor fellow.... as there is a lot of stress around him and walk materials in every which direction, yet he is managing and of course herding me around.  

Now isn't this a funny sight? Indie jumped aboard the large luggage cart we use to move around materials. She claimed this new item in our home tonight and clearly wanted to explore it!

Sign off for tonight! May tomorrow be a great day. 

Happy to report that we reached 96% of our Walk goal!!!!

Friday, May 19, 2017

Friday, May 19, 2017

Tonight's picture features a poster that will be on display at Sunday's Mattie Miracle Walk. We are featuring the faces of 66 children who lost their battle to cancer. We call them our Forever Heroes. We did a campaign request on Facebook a few weeks ago and the response was amazing. Which is sad, but what I had suspected. When you lose a child to cancer, you relish any opportunity to display photos and memories. It is quite possible that our attendees will find these posters sad, but the posters are the reality of childhood cancer. Five children die each day in the US from this disease and with that come psychosocial issues that impact and affect the families forever. Our Faces of Hope posters (which reflect on cancer survivorship) along with our Forever Heroes posters provide a visual reminder that psychosocial issues do not end when the treatment does. Children are faced with late effects (e.g., secondary cancers, heart disease, high blood pressure, heart disease, hearing loss, eating disorders, substance abuse, depression and anxiety) and bereaved families contend with a lifetime of grief. Which is why Mattie Miracle is committed to psychosocial issues across the entire cancer journey not just during diagnosis and treatment. 


Quote of the day: Do not go where the path may lead, go instead where there is no path and leave a trail. ~ Ralph Waldo Emerson


Walk Facts....................................

1. We are achieved 90% of our fundraising goal as of today: $72,311
2. We have 279 participants pre-registered
3. The on-line raffle has raised $2,365
4. Our Walk teams have raised in total: $30,000

Thursday, May 19, 2017

Thursday, May 19, 2017

Tonight's picture was taken in June of 2009. I must say we were naive at that point in time because we had NO idea Mattie's cancer had metastasized. In this picture with Mattie, is Maya. Maya is Mattie's age and the only same aged friend Mattie made in the hospital. His other two hospital friends were significantly older than him. But Maya is smart and witty. In fact, they became friends at the same table you see in this photo. Maya, Mattie and a bunch of other children were sitting around the art table creating. Maya began to talk about how she hates needles and IVs. With that Mattie turned to her and said he understood. It truly caught my eye because Mattie wasn't always good at verbalizing his fears and anxieties in the hospital. But Maya gave his feelings words. In this photo, Mattie and Maya designed their own scenery and were in the midst of acting out a play about aliens from outer space. 


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


It is after 1am, and I am still up working. So tonight's posting is brief. The walk facts for the day are:

1. We have reached 88% of our goal ($70,195). Now $80,000 seems like a more reasonable target. 
2. There are 255 people pre-registered for the Walk.
3. We have sold $1950 in on-line raffle tickets. 

Wednesday, May 17, 2017

Wednesday, May 17, 2017

Tonight's picture was taken in June of 2009. It was the morning of Mattie's sternotomy. As you can see Mattie was surrounded by Tricia (Mattie's favorite HEM/ONC nurse), Linda (Mattie's child life specialist), and a young college student who was a juggler. Linda brought in the juggler to entertain Mattie and to take his mind off his surgery. Some people think the doctors and surgeons are the miracle workers. Yes they are skilled, but it is the psychosocial people who are the ones who sit with you through the TOUGH stuff and make the horrific slightly more bearable. That to me is priceless!!!


Quote of the day: Whoever loves much, performs much, and can accomplish much, and what is done in love is done well. ~ Vincent Van Gogh


Walk Facts For Today

1. We have reached 86% of our financial goal, and are now at $68,500. 
2. There are 250 pre-registered for the Walk
3. We have sold 367 on-line raffle tickets
4. We have 18 walk teams, of which here are our top 7 teams

Congratulations to our top 7 teams: 

1. Book Club & Friends
2. RCC and Friends
3. Mattie Moon
4. Ryan's Rowdies
5. Blessed Sacrament Bullfrogs
6. Team KIMBER
7. SAINTS

Congratulations to the Blessed Sacrament Bullfrogs Team who will be winning an award for the team with the most number of registered participants by May 15th. Their team has 41 members!

Tuesday, May 16, 2017

Tuesday, May 16, 2017 -- Mattie died 400 week ago today.

Tonight's picture was taken in May of 2009, at the Mattie March. Mattie was working at the craft table with two of my students, Ariel and Tess. Ironically they later decided to become nurses. They say that Mattie's experience influenced them. But I love this photo, as Mattie seemed very happy at the event and enjoyed the attention. If you look closely at the t-shirt, you can see a design in orange in the center. The design was made up of cartoon like children holding a sign about walking for a Mattie Miracle (a term we used before Mattie died, while he was battling cancer). However, my one personal addition to this design was I had the graphic artist actually insert Mattie's face into the crowd of cartoon faces. It was an adorable logo!

Quote of the day: Time is too slow for those who wait, too swift for those who fear, too long for those who grieve, too short for those who rejoice, but for those who love, time is eternity. ~ Henry Van Dyke


Another full day of Walk work! So thrilled that the event is this weekend, because I have reached my limit. Here are the updated facts as to where we are with the Walk:

1. We are at 84% of our goal. Our goal is $80,000 and we reached $67,000 today.
2. 19 people have registered for the Corn Hole Tournament. Which always surprises me since the 1st, 2nd, and 3rd place prizes are remarkable thanks to generous donors.... First: is diamond club tickets for a Nats game, including parking and food -- worth over $800; Second: an iPad Air; Third: $50 gift card to The Cheesecake Factory and 10 Mattie Miracle Raffle Tickets
3. 243 people pre-registered so far
4. 354 raffle tickets sold on-line

It is the final push this week to get to $80,000! The administrative work on this is pretty remarkable, but it is fatiguing and I am looking forward to the intensity ending soon. Naturally I am very grateful to all our donors, volunteers, and friends working to make this day a success. 

Monday, May 15, 2017

Monday, May 15, 2017

Tonight's picture was taken in May of 2009 at the Mattie March. Pictured next to Mattie is Zachary. Mattie and Zachary were absolutely inseparable during preschool. They were the best of friends. They could spend a whole school day together, just to want to have a play date after school. There was instant chemistry between them. That did not change even when Mattie was undergoing cancer treatment. Zachary visited Mattie in the hospital as well as when he was home between chemos. I love this photo because to me this is what true friends look like. 


Quote of the day: The highest reward for man’s toil is not what he gets for it, but what he becomes by it. ~ John Ruskin

I am telling you today was an absolute BLUR!!! NON-STOP work. It is 9:30pm, and I am still at it. But if I wasn't seeing progress on the Walk front, I would be truly dejected. As of now, we have raised 81% of our goal, $65,000 and we have 220 people pre-registered! An all time high. I am hoping even more people show up on the day of the walk!

Peter and I had dinner on our deck tonight, which was very needed. As we both sat down, I stopped in my tracks because I saw our gardenia's first bloom! I love gardenias, so this was very exciting and I took it as a sign. 

Sunny was NOT happy with my work schedule today. He truly looked depressed. Sunny also refuses to come outside on the deck. So we have concluded he was tied up outside by his former owners and he didn't like it. While Sunny hates deck time, Indie LOVES it. While Indie was out and rolling around on the deck, we found this. A leaf in the shape of a heart! Amazing no? A true Mattie sign, and I am taking all of them that I can find this week. 

Sunday, May 14, 2017

Sunday, May 14, 2017

Tonight's picture was taken around Mother's Day of 2009. Our last Mother's Day together. Mattie worked hard on making me this clay vase with tissue paper flowers for my day. I love this vase and its flowers, both of which remain in our living room.





Quote of the day: Blessed is a mother that would give up part of her soul for her children's happiness. ~ Shannon L. Alder


I always post this letter from Erma Bombeck each Mother's Day. Thank you Denise for giving it to me------------------------------------------------

Mothers Who Have Lost a Child - May 14, 1995 by Erma Bombeck

If you're looking for an answer this Mother's day on why God reclaimed your child, I don't know. I only know that thousands of mothers out there today desperately need an answer as to why they were permitted to go through the elation of carrying a child and then lose it to miscarriage, accident, violence, disease or drugs. 

Motherhood isn't just a series of contractions, it's a state of mind. From the moment we know life is inside us, we feel a responsibility to protect and defend that human being. It's a promise we can't keep. We beat ourselves to death over that pledge. "If I hadn't worked through the eighth month." "If I had taken him to the doctor when he had a fever." "If I hadn't let him use the car that night." "If I hadn't been so naive. I'd have noticed he was on drugs." 

The longer I live, the more convinced I become that surviving changes us. After the bitterness, the anger, the guilt, and the despair are tempered by time, we look at life differently.

While I was writing my book, I want to Grow Hair, I Want to Grow Up, I Want to Go to Boise, I talked with mothers who had lost a child to cancer. Every single one said death gave their lives new meaning and purpose. And who do you think prepared them for the rough, lonely road they had to travel? Their dying child. They pointed their mothers toward the future and told them to keep going. The children had already accepted what their mothers were fighting to reflect.

The children in the bombed-out nursery in Oklahoma City have touched more lives than they will ever know. Workers who had probably given their kids a mechanical pat on the head without thinking that morning are making calls home during the day to their children to say, "I love you."

This may seem like a strange Mother's Day column on a day when joy and life abound for the millions of mothers throughout the country. But it's also a day of appreciation and respect. I can think of no mothers who deserve it more than those who had to give a child back.

In the face of adversity, we are not permitted to ask, "why me?" You can ask, but you won't get an answer. Maybe you are the instrument who is left behind to perpetuate the life that was lost and appreciate the time you had with it. 

The late Gilda Radner summed it up well: "I wanted a perfect ending. Now I've learned the hard way that some poems don't rhyme and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what is going to happen next. Delicious ambiguity."
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Peter surprised me with this beautiful fleece blanket. Notice the crescent moon filled with photos. In honor of my Mattie Moon. Mattie always called me Una Moon, which is why Peter included it in the saying. 

This was a flower given to me from Peter and in essence Mattie. I see Mattie in all butterflies!

 Beautiful flowers from Peter!

Yesterday we went to drop off the last of our raffle baskets to our Raffle Chair, Carolyn. Carolyn surprised me with these beautiful flowers and a box of chocolate. 

This morning, my friend Tina dropped off a rose and a box of amazing cookies. She does this EVERY YEAR!

This was what was in the box! Clearly I did not have Mattie with me, which would have been the ultimate Mother's Day gift, but I am very grateful that my friends don't forget and go out of their way to remember me.