Saturday, June 16, 2012

Saturday, June 16, 2012

Tonight's picture was taken in July of 2007 at Peter's parents home in Boston. This was Mattie's first experience with a slip and slide, and as you can see he took to it immediately. The faster he went down this slide, the better he liked it.

Quote of the day: And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye. ~ Antoine de Saint Exupery

On Friday night, Peter and I went out to dinner with Deborah. I met Deborah almost two years ago at another childhood cancer organization's fundraiser. Deborah and I took a liking to each other immediately, and from that brief encounter we have become friends. Deborah is a patient care advocate and skilled with pediatric palliative care issues. In November of 2011, Deborah invited Peter and I to serve on a parent panel at the annual DC Palliative Care conference. This was a very powerful and meaningful panel experience for us. It is a very atypical experience for Peter and I to be able to talk freely about Mattie's cancer, his death, and our reactions and feelings about this with others. Most people in our lives can't or do not want to hear about these issues, but in a palliative care educational setting, our insights are valuable and are needed. Deborah is giving us another opportunity on June 29, to present to physicians, nurses, and hospital personnel at the Georgetown University Hospital's Grand Rounds.

We meet with Deborah periodically for dinner. Deborah is very familiar with loss, since she lost two children, and more recently her husband. So we can relate to each other on a professional but also a personal level, and she gives Peter and I opportunities to be reflective and to share our feelings with each other. For the most part, though Peter and I do talk about Mattie often, we do not always reflect on the deeper pain of this loss. Not because we can't, but more likely we don't due to the fear of what issues this will bring up. However, last night, Deborah asked us various questions, that got us to open up, be reflective, and to dialogue about the future and what Mattie Miracle means to us. Why is she asking us these questions? She is asking because she is writing an article on the impact of a child's death on parents, and how parents make meaning of their lives after such a traumatic loss. Deborah gave us her questions ahead of time, but Peter and I did not converse with each other about our responses before the Friday dinner. I find our dinners more meaningful and stimulating when we can explore our own thoughts and feelings independently, rather than having dialogued about these things ahead of time and presenting a pat answer to Deborah. Ironically, though our answers are at times different, at the core, the reason why we established the Foundation is the same. Some people are lucky enough to give birth to a child and have that child with them for the remainder of their life. We weren't so fortunate, and in essence for us the Foundation has become our baby. It is the organizational equivalent of Mattie. It has Mattie's name on it, and his spirit is alive within it. So from my perspective I run the Foundation certainly to help other children and their families with cancer, but at the heart of my motivation is MATTIE. I nurture the Foundation because it is Mattie, it keeps his memory alive, and it highlights his battle, and we use that battle to gain insights into how to help others.

Over dinner we talked about many of the inappropriate comments we received from others once Mattie died. I believe people say these things because they are uncomfortable or at a loss for words. Nonetheless, offering platitudes, putting a religious spin on the loss, or even minimizing the loss are NOT helpful. Ironically, my friend Charlie sent me the article below this week, which is in line with our conversation last night. I copied the article below if you should want to read it.

Below the article you will find more pictures from this year's Foundation Walk!

===================================

What Not to Say to Someone Grieving....................By Annie Tucker Morgan

If you have had the experience of losing a loved one in your lifetime, you understand that the mourning process can be so agonizing and prolonged that it feels as if it will never end. Sometimes it’s so excruciating, in fact, that even when we aren’t grieving firsthand and are simply trying to help a person we know heal following the death of someone important to him or her, we panic, unsure of what words of reassurance can possibly suffice in the face of such monumental loss and emotional trauma.

According to bereavement expert Camille Wortman, PhD, blogging for the PBS series This Emotional Life, our personal discomfort surrounding death and tragedy, whether conscious or unconscious, often rears its head when we try to reach out to grieving people, even if we have the best of intentions. She notes, “We are not sure what to say and we do not want to make [the person] feel even worse. Conversing with a grieving person can evoke feelings of helplessness because objectively, there is little we can say or do to help. Such interactions may also enhance feelings of vulnerability, because they make us realize that bad things can happen at any time.”

In addition, Wortman points out, as we sense our own stress levels increasing while we try to soothe someone who is suffering, we freeze up and tend to default to a one-size-fits-all approach, making “remarks that are part of our cultural understanding of how to help others.” Yet such statements are risky at best and downright damaging at worst. When attempting to console a bereaved person, you’d be wise to avoid the following types of behaviors.

Offering Platitudes
“Time heals all wounds.”
“You have so much to be thankful for.”
“It wasn’t meant to be.”
“This is simply nature’s way of dealing with a problem.”
“Everything happens for a reason.”

Minimizing the Problem
“It was only a baby you didn’t know; you can always have other children.”
“She was seventy-five, so she lived a nice long life.”
“It’s over now. There’s nothing to do but move on.”
“Others are worse off than you.”

Giving Unsolicited Advice
“You should seriously consider getting a dog to keep you company now that your husband is gone.”
“It’s not healthy for you to be visiting your mother’s grave every day.”
“The best way for you to get over your wife’s death is to start dating new people as soon as possible.”

Grasping at Straws in an Attempt to Relate
“I know how you feel about your son’s passing. My husband and I got divorced last year, and I’ve had a very hard time with it.”
“I’m sorry to hear about your wife’s untimely death. I understand what you’re going through, because I had to put my dog to sleep recently.”
“I know how hard it must have been to lose your five-year-old. I experienced a similar tragedy when I had an abortion.”

Putting a Religious Spin on the Situation
“God has a plan.”
“God doesn’t give you any more than you can handle.”
“God needed your father more than you did.”
“She’s a flower in God’s garden now.”
“Heaven needed another angel.”

Expressing Intolerance for the Length of the Grieving Process
“Think positive.”
“You must be strong.”
“Keep a stiff upper lip.”
“Pull yourself together.”
“Get back on the horse.”

These verbal red flags might make you feel as if trying to console someone who’s lost a loved one is akin to stepping into a minefield, but bear in mind that saying nothing at all is still more harmful. Treat this as an opportunity to practice mindful compassion—instead of blurting out clichés, make sympathetic and selfless comments, such as:

“I’m so sorry to hear about your loss.”
“I can’t imagine what you are going through.”
“I don’t know exactly what to say, but I know I can listen.”
“Would you like to sit down and tell me how you’re really feeling?”

===========================================

We had six child/teen vendor tables this year at the Walk. The past two years, we invited local vendors to sell their wears at the Walk, but unfortunately many of their wonderful products did not sell at our events. However, last year, Lauren sold her duct tape Bows for Hope at the Walk, and I noticed they were a HUGE hit. So Lauren's success gave me the idea to have ONLY kid and teen vendors at the Walk this year. That decision was an excellent one, because the children actually generated over $500 in sales. Our photographer took a close up of Ellie's Bands For Hope. Ellie worked for weeks on her hand created headbands. As you can see they are bright, cheery, creative, and very professionally done. Keep in mind that Ellie is ONLY 10!

Here is a close up of Ellie, our creator of Bands for Hope. Ellie has plans for designing more bands and finding other ways to generate funds for Mattie Miracle.

Ellie's "Bands for Hope" table at the Walk!

This is Isabel! Isabel is the daughter of my friend, Heidi. I worked with Isabel and her Girl Scout Troop all year, and when I told the Troop about our Annual Walk, Isabel came up with the idea to create and sell her own hand designed magnetic bottle caps. You will be hearing more about Isabel, since the community service work she has done for Mattie Miracle helped enable her to receive one of the highest honors her school bestows on an 8th grader. Isabel will be highlighted in our Foundation's July Newsletter.

Here is a close up of the Magnetic Bottle Caps. Isabel chose things to highlight that were either Foundation related or that Mattie loved, such as Elmo, the moon, tennis, art, and of course the ROACH!

This is a picture of Isabel and Ella. Ella is one of Isabel's closest friends, and she helped sell bottle caps at the Walk. Ella completed several hours of community service learning with Mattie Miracle, and then put together a presentation and poster session for her school. Ella's presentation and poster were so well received that she was invited to participate in her school's service learning fair. I will be sharing more about Ella in an upcoming Foundation Newsletter.

This is Annie. Annie is the daughter of Coach Dave. Coach Dave is the former head football coach at Mattie's school, and a big Team Mattie supporter. Dave visited Mattie often in the Hospital and is instrumental to our Walk logistics. Annie created 20 amazing duct tape purses to sell at the Walk. These purses went like hot cakes! In fact, my mom bought one, and when I saw her walking around at the Walk, I asked her where she got the beautiful purse she was holding. She told me it was one of Annie's creations, and I was absolutely stunned. I never knew duct tape could form such an eye catching purse.

The girl on the right is my 12 year old friend Katharina. Katharina wanted to participate in the Walk and supplied the materials and taught children the technique of making friendship bracelets. Making a friendship bracelet is time consuming and labor intensive, and we appreciate Katharina's thoughtfulness for running this table. Katharina has given me a friendship bracelet with Mattie's colors, and I keep it attached to my purse always, regardless of the season.  

Our sixth vendor was Lauren's Bows for Hope. Lauren was unable to attend this year's Walk, but she sent me 100 bows to sell, and like last year, selling them was NO problem at all. Our photographer captured this young girl coming up to the table to examine the bows. Also notice that this girl is wearing an Ellie head band too!

This picture says it all, and it is a wonderful way to end the kid/teen vendor picture display. This little girl bought an Ellie head band, was wearing a childlife button she made, and also purchased a Mattie hair ribbon created by another teen vendor named Margaret. So basically this little one was a walking symbol of our Walk DAY products!!!