Saturday, September 27, 2014

Saturday, September 27, 2014

Tonight's picture was taken in November of 2005. We brought Mattie to one of his favorite restaurants and dressed him in red with the hopes of posing him for our cover photo for our Christmas card that year! This was the actual photo that went to all our friends and family in 2005. The reason why Mattie loved this restaurant so much was the man made pond right behind him. In the pond are fish and turtles. When Mattie would get bored eating or when he had enough of sitting still inside the restaurant, he would ask to come outside to look at the fish and turtles. These outside diversion were a saving grace for all of us!


Quote of the day: The greatest degree of inner tranquility comes from the development of love and compassion. The more we care for the happiness of others, the greater is our own sense of well-bring. ~ Tenzin Gyatso

Yesterday I found out I have two more small kidney stones and that did not put me in the best of moods. I am not sure what bothers me more, the actual stones or the total insensitivity of the medical system in which I have to deal with! Frankly just migrating through the system could make you ill. It is one gatekeeper after the other. Forget about talking to a doctor, and I am quite sure that many doctors have to go right back to medical school, because so many of them do not know anything beyond their own specialty area. Simple questions about the kidney send them right out of their comfort zone. So naturally my basic questions need to be referred to a nephrologist! Seems to me since Mattie's death, I have developed a rapport with more specialists than I care to list here! I would say this is truly the aftermath of having a child die traumatically. While Mattie was battling cancer, I was in overdrive and pushed through things without sleep, with a total disregard to my health. Now, I am paying the price for that and also grief has a way of eating one from the inside out. 

In any case, last night I posted a list of 20 things about grief. For the most part the list resonated with me but there are bits and pieces of this list that UPSET me greatly. I was too tired to get into it last night. Of course as Peter read my blog from last night, he started to talk to me about it and I guess he was perplexed by the list and my lack of commentary on it! Since I did not comment on some of the items, I think he thought I agreed with all of them, which worried him! However, he knows me better than that, which is why he verbalized his concerns! I have more energy tonight, so here are my reflections on the list with regards to numbers 1, 9, and 20 (from last night's list). These items need an absolute overhaul! Not only an overhaul, they need to be tossed right off the list to be specific. 

Here are the items:

1. We don't actually get over losses. We absorb them, and they redirect us into a more grounded way of living.

9. Losing a loved one might make you question your purpose and your own goals. That can be a beautiful thing.

20. What feels like the end is often a new beginning.

My commentary about the items:

With regard to number 1, Mattie's loss did not redirect us into a better or more grounded way of living! I can assure you! It instead caused havoc on our lives and has torn us to pieces. We are left shattered and fragmented, and forced to invent ourselves and understand the world around us. So I am not quite sure I share this philosophy. Similarly, with item 9, I do think there are other things in life that we can go through that help us question our purpose and re-evaluate our goals in a less traumatic manner than grief. I agree that taking stock in one's self and purpose are beautiful things, but I greatly question the manner in which one has to experience this! The death of a child seems to be a harsh and extreme reality check, and to me there is no beauty that can come from this. Lastly (item 20), what feels like the end is the end! There is no beginning when your child dies. That is the end of my life as Mattie's parent. It is that plain and simple. We could sugar coat it, paint a pretty picture, but that doesn't help! There isn't a new beginning. I can assure you! I am reminded of this every Christmas, during every celebration, and so forth. Again, I am forced to create a new life for myself, one I did not ask for, but a "new beginning" are two words that don't sit well with me. I lump them in the same basket as "new normal." 

I think overall the list is very helpful, and when I read it most of it did resonate with me, but some words even five years later rub me the wrong way. They can upset me greatly. They can make me feel misunderstood, and worse they can make grief seem simple or make grief seem like a great part of life in which we need it in order to grow, develop, and become better people. Grief happens and we have to deal and cope with it, but I wouldn't wish any one reading this to lose their child. I think you can grow and become beautiful in other ways. 

My friend Ann sent me this photo today of her daughter Abbie and her friends taking part in the Whipping Cream Challenge for childhood cancer. 

There is a new challenge (different from the ALS Ice Bucket Challenge) that is circulating around Facebook. It is the Childhood Cancer Challenge, in recognition of September being Childhood Cancer Awareness month. The challenge is asking friends and family to take the "Whipping Childhood Cancer Challenge." 

Basically the challenge asks you to have someone throw a whipped cream pie in your face and make a video of it and post it on Facebook!!! Then challenge 7 people to do the Challenge and consider donating $7 to the childhood cancer charity of your choice. Your friends and family have 46 hours to complete the Challenge or they can donate $46 instead. The reason for the numbers 46 and 7 is because 46 children are diagnosed with cancer every day and 7 children lose their battle to cancer every single day. 

The Challenge was actually started by a mom whose child survived cancer and she wanted to raise awareness for the disease:

http://www.myfoxorlando.com/story/26454029/whipping-childhood-cancer-challenge-taking-social-media-by-storm

http://www.whippingchildhoodcancer.com/

I was very touched to see this photo today! Though as Mattie Miracle's president, I shy away from promotional and viral events on Facebook such as this that promote childhood cancer in this light. Nonetheless, I do support the fundraising efforts and thoughtfulness of Mattie's friends.

This afternoon, Peter and I went to the fourth annual EVANfest sponsored by the EVAN Foundation. Evan lost his battle to Neuroblastoma in 2010, at the age of 7. His parents, Gavin and Wendy created their Foundation in Evan's memory. The Foundation is dedicated to supporting research that will foster new therapeutic options for kids currently in treatment. Thanks to their efforts they have supported several new clinical trials for Neuroblastoma, they have advocated for new drug development, and also volunteer at Children's Hospital in DC and supply a Treats and Treasures cart at the hospital. In fact this October, Mattie Miracle will be supplying some of our Post-Halloween candy to their Treats and Treasures cart at Children's Hospital. 
http://www.theevanfoundation.org/

After EVANfest, Peter and I visited one of Mattie's favorite restaurants. The one from the photo up above! As you can see I snapped a photo of one of the turtles out on the rocks. It was a glorious weather day!

Peter took this photo of me. This was the exact rock Mattie was sitting on above. I just took the photo of Mattie from a different angle, so you couldn't see the building! But in my mind this will always be "Mattie's rock!"