Friday, September 8, 2017

Friday, September 8, 2017 -- Mattie died 8 years ago today. 

Tonight's picture was taken in February of 2009. I remember taking this photo as if it were yesterday. My friend Susan visited us in the hospital that day. With her she brought a block of clay, goggles, and tools. Within the clay were buried plastic dinosaur bones. The key was to dig all of the bones out and then build the dinosaur. Literally Mattie's hospital room was transformed into an archaeological dig. We had a sheet down on the floor that Mattie sat on and he dug through clay for hours. He was truly motivated. It was the perfect sedentary activity for him. Mattie then assembled the dinosaur bones and he was exhausted from all the fine motor work. So I snapped a photo of his tired state with his finished prize. 



Quote of the day: Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. ~ Edna St. Vincent Millay



On this 8th Anniversary of Mattie's death, I can safely say that it doesn't get easier and NO...... TIME DOESN'T HEAL ALL WOUNDS. As I always say, "the psychosocial issues DO NOT end when the treatment does!" This is not just a cute statement but instead a powerful message that cuts through the heart of the matter. Things do not return to normal once treatment is over and if you lost a child to cancer, you live with profound psychosocial issues that you may not talk about nor may others see or notice, but they are there and they forever affect how you see, interact, and feel about life and the future.

It is hard to wrap my head around the fact that Mattie has been gone more years now than he was alive. I will never forgot the day we learned that Mattie's cancer metastasized. He literally jumped into my lap and wanted to hear the story about the day he was born. He LOVED hearing that story, since Mattie literally kicked his way right into the world. To know Mattie was to love him. His teacher once described him to me as "an old soul!" She was absolutely right! Somehow Mattie knew he had to live life to the fullest, because he wasn't going to be with us long.

We miss him today, and EVERYDAY. I am still not certain what gets me out of bed each day, but one thing I am certain of, my mission is to share Mattie with others, to keep his memory alive, and to make sure the world knows CHILDHOOD CANCER IS NOT JUST ABOUT THE MEDICINE!

TEN MATTIE FACTS:

1. Mattie was born after 24 hours of labor, by c-section.
2. Mattie was a baby who did not like to nap or sleep.
3. Mattie was a late talker and walker.
4. Mattie never crawled but actually wanted to skip steps and move to running.
5. Mattie had a sense of humor! Right from day one. When he was about six months old, I called his doctor in a panic because I thought he wasn't breathing. The doctor and I deduced Mattie was laughing so hard that it looked like he was struggling for air. 
6. At age two, Mattie could disassemble his hot wheel cars with a screwdriver and PUT THEM BACK TOGETHER AGAIN.
7. Mattie LOVED anything that moved.... cars, trains, planes, trucks, etc.
8. He was the KING OF THE LEGOs, in fact during his 14 month cancer battle, he built every LEGO set on the market.
9. Mattie LOVED the phrases "apparently" and "let's talk about it." He used them all the time. 
10. I wasn't called mom, but instead was known as "UNA MOON." Very telling, as Mattie was called "Mattie Moon" in preschool!

I posted the message above on Facebook today, and people have been commenting. Whose commenting? Those who are friends of ours who knew Mattie, those who don't know us at all, and of course fellow cancer parents. One friend said to me today something to the extent that no matter how many people write and say they are sorry for our loss, at the end of the day it's our loss and no one is really sitting with us through it. That is a brilliant comment, because that is indeed the reality. Sometimes words do not help. In fact, some words can be down right upsetting. Case in point, we heard from Mattie's hospital today regarding a communication I sent to them in July. However, sending me an email today without acknowledging Mattie's death and our loss is a BIG NO NO with me. One thing I learned early on in my professional career as a mental health provider is.... when you work with people it is important that you get to know them, what matters to them and things that are important to them. When you don't do this, this lack of regard speaks volumes to me. What today's email communication showed me is that Mattie's memory NO LONGER exists at the place we once considered our second home. To me this is like dealing with a major loss on top of another loss ON AN ALREADY VERY BAD DAY. Clearly if these hospital employees were students in my class, I would be having a field day with this, because it is a teachable moment of NOT WHAT TO DO!!!! But at the end of the day, the institution I once loved, is no longer, and frankly I am not sure they are open to learning and getting feedback. Which provides great sadness to me.

Compare this feeling above to the one I will describe below. This is Tim's third photo of an orange tie he sent me this week. Orange tie week continues next week in Mattie's memory. Tim was our philanthropy contact at Mattie's hospital and guess what???? He did not know Mattie either, but he knows what days matter and are important to us. Why? Well two reasons, Tim is a smart professional and understands how important it is to know such facts when working with bereaved parents. But second, this is just Tim, and it speaks to his character. His job may have been philanthropy, but he went beyond his job description. 

That may not be important for some people or for some donors, but it is vital to me, as I work hard to raise money in Mattie's honor. 

Speaking of Tim, before he retired from Mattie's hospital, he donated a memorial stone in Mattie's memory. As is my tradition, today we visited this stone. I am not sure Tim realizes this, but having this stone gives me some direction on September 8. 

This is the first anniversary of Mattie's death that Peter was with me, and I find it is better to be together on this day. The memorial stone reads, "In Loving Memory of Our Son Mattie Brown."

After seeing the stone above, we then walked a few blocks from the Hospital to Holy Trinity Church in Georgetown. In the Church's memorial garden is a brick that says, "In Loving Memory, Mattie Brown, King of the Legos, Classmate and Friend."

This stone was created for us by Ann Glennon. Ann was a grandmother of a preschool classmate of Mattie's. I got to know Ann quite well as Mattie and her grandson liked to hang out after preschool to play on the playground. Throughout Mattie's battle, Ann would write me beautiful, supportive letters. Not to mention that Ann was a significant contributor of the Foundation. Unfortunately Ann died from her own cancer battle, but I can't visit this brick without thinking of her. Somehow Ann understood the importance of having such a brick on difficult days. 

From Georgetown, we drove to Roosevelt Island. A place we spent many weekends with Mattie. This is the bridge over to the Island. 

This was a photo taken in November of 2007. It was by one of Mattie's favorite stones on Roosevelt Island. Around the stone was a tree that dropped these great big fruits, like you see in Mattie's hands. It is a crinkly hedgeapple tree believe it or not. If you cut open the fruit, it smells like lemons..... I speak from experience as I tried this with Mattie. 

Today we tied a white ribbon around a tree near the stone!

A close up of the white ribbon. 

Meanwhile, friends have been sending us all sorts of visual messages. Check this out from a fellow bereaved parent. 

My friend Carolyn, who runs our Foundation's raffle, sent me this photo today. She saw Mattie Moon following her while she was walking her dog this morning. She took that as a sign.

 A message sent to me by my friend in cancer, who also lost her only child to cancer.  

Our friend Marisa, sent this photo to us today. Do you see the monarch butterfly that landed on her beach chair in Bethany today? Marisa runs our Foundation's bake sales and has been connected with us since she was in high school. She reached out to me when she was a teenager and offered to play with Mattie and assist me while we were home between hospital stays. She came into our lives at a tender age, and now as a young adult remains committed and passionate about our cause.  

A fellow non-profit leader and friend sent this to me today. Carrie wanted me to know she was thinking of Mattie and painted her toes orange! That meant a great deal to me since I admire Carrie's work. 








Last by certainly not least is this wonderful Mattie video that was created for us by Tim Beck. Tim is my Facebook friend. We never met, but what I do know is he uses his photographic talents to help hundreds of parents who lost a child to cancer. His Facebook postings are always beautiful, meaningful, and as I told him.... well timed to anniversaries and special milestones. Seems I should have Tim talk to Mattie's hospital, as they could learn something from him! 

Video of Mattie Photos:

https://www.facebook.com/timothy.beck.50/videos/10155650918286081/?id=668118467