Sunday, September 17, 2017

Sunday, September 17, 2017

Tonight's photo was taken in September of 2006. This was classic Mattie! Mattie was four years old and the whole potty training experience was just that with Mattie.... an experience. By age 4, Mattie had mastered potty training, but I realized one thing with Mattie. He had to learn when he was ready, not on some other time line. Once he was ready, he learned quickly! But don't you love it..... sunglasses in the bathroom!?!









Quote of the day: No matter what you have done for yourself or for humanity, if you can't look back on having given love and attention to your own family, what have you really accomplished? ~ Lee Iococca

This morning Peter, myself, and Sunny walked two miles to the National Mall to participate in the annual childhood cancer awareness event. In tow was of course our shopping cart filled with 80 t-shirts, brochures, toys and gifts, our banner and collapsible slide. 

Last year we made a "selfie" cutout. I debated taking it this year, as it is one more thing to carry. But glad Peter said.... take it! It was a hit. 

Now this fellow was the highlight of our tent. He totally drew people in! People of all ages wanted to be introduced to Sunny and to pet him! He is truly the Mattie Miracle ambassador!

Our friend and board member, Ann came to help us today from 9am to 2pm. It was very important to have her presence, as it can be overwhelming at times to balance all the people who come by and visit. 

Mattie was honored on the remembrance wall at the event. I wish I could say this was a small wall, but it went on and on for many feet!

We reconnected with our fellow parent advocates at the event. Pictured with Peter is Joe McDonough. He is the founder of the B+ Foundation, in memory of his son Andrew. Andrew's blood type was B+, which is one of the reasons the Foundation got its name!

This is me with Karla Flook. Karla's daughter is a cancer survivor, and is a very active member and leader in the Coalition Against Childhood Cancer (CAC2). CAC 2 is an organization comprised of over 80 childhood cancer organizations, like Mattie Miracle, that works to coalesce around issues. 

Peter and I are pictured with Ellen Blair. Ellen lost her daughter to cancer, and is the Founder of the Catherine Elizabeth Blair Foundation. 

I am pictured with Jenny Mulks Wieneke, the Founder of Along Comes Hope. Jenny is a cancer survivor, and decided after her own experiences that she wanted to do something to help the community. Her focus is on bringing HOPE is all forms to children with cancer. 

This is the "Along Comes Hope" mascot. A cute teddy bear, who took a selfie with me.

We had many, many people who came into our tent to chat with us today. I would have to say the most memorable and poignant for me are from parents who lost a child to cancer. You can just tell that we speak the same language, as we are in a very different club from parents whose children survived. As soon as we mention to parents that it doesn't get easier after the first year of loss, you can see their eyes light up! Mainly because we are putting into words what they are already feeling and sensing. It is just that no one talks about it! I gave out many hugs today but one parent totally surprised me. Which is why I am posting a photo of this teddy bear. I am telling you this in case this happens to you!

This woman came up to me holding a teddy bear like the one in the photo. In addition to the bear, she had a bag of markers with her and a white t-shirt for the bear. She introduced the bear to me as "this is my son." I can imagine my facial expression was as perplexed as my mind was at that moment. I honestly did not get her. I asked her if the bear belonged to her son. She said NO, and repeated, "this is my son." I then asked her if she had a recording of her son's voice inside the bear (as Jenny, from the photo above, provides families with her HOPE bear which records voices). Again she said no! Finally she explained that the bear is an urn which contains her son's ashes. I honestly wish she told me this from the beginning, as I couldn't get over that she thought the bear was her son. I had to quickly assess.... was she stable and what context was she talking about. Once I got it, she asked me to sign the bear's t-shirt and then she showed me photos of her son, who's baby body was ravaged by cancer. With tumors literally protruding everywhere on his body. 

I have been thinking about this interaction for hours now. At first, I was totally taken aback that she brought her son's ashes to the Mall, then I was perplexed how she introduced the bear as her son, but now after thinking about it, I realize she is absolutely traumatized. She lost her son in April, and carrying this bear clearly helps to give her life meaning and purpose. She wants messages written on the bear's t-shirt, as I imagine these messages affirm for her that her son existed, his life mattered, and she wants others to know that this disease is very real and kills children. Needless to say, I shall never forget about the bear urn ever.