Saturday, November 22, 2014

Saturday, November 22, 2014

Tonight's picture was taken in November of 2008. Mattie was in his room recovering from his second limb salvaging surgery. As such it was a major feat just to relocate him from his bed to this hospital chair. I can tell given what was going on in the room.... it was a Friday!!! Because the volunteers in our room were from the University's chemistry club. They who would visit every Friday and share an experiment or two with the kids. Mattie LOVED these experiments. If Mattie was unable to come out of his room, the experiments came to him! Though the room was tiny, somehow we made it work. I have to say this was an adjustment for me, because the hospital room was like entering our home. Sometimes I really did not want people in our personal space, but because I knew it was for Mattie's best interest and his emotional health, I put up with all sorts of things and at all hours of the day. When I reflect on the chaos we lived through for months on end, it is truly hard to know how we are still standing. 


Quote of the day: Do not be afraid to color outside the lines. Take risks and do not be afraid to fail. Know that when the world knocks you down, the best revenge is to get up and continue forging ahead. Do not be afraid to be different or to stand up for what's right. Never quiet your voice to make someone else feel comfortable. No one remembers the person that fits in. It's the one who stands out that people will not be able to forget. ~ Nancy Arroyo Ruffin

Peter and I drove to Winchester, VA last evening and spent a night at the George Washington Hotel! This is a historic hotel that was originally constructed in 1924, and went through a complete renovation in 2011. 






I have never been to Winchester, VA, but it is about 90 minutes west of Washington, DC. The countryside is quite beautiful, but since we were driving at night, it was a bit of a dark sort of experience. Unlike today's trip home which was filled with beautiful landscapes and scenes of farms and cows! 

Stepping into the hotel lobby, though modernized, had an old world feel. Which was lovely! 

Last night, Peter and I worked together to get our power point presentation together. We dined at the Hotel's restaurant. I LOVED the name of the restaurant.... The Dancing Goat! Some how it just makes you happy to picture a goat frolicking and dancing to music! Or maybe that was my mental state. 

I originally thought we were going to present one thing today, but then one of the leaders of today's retreat asked whether we could also include information to parents about trauma. Though this wasn't in my plan, I trust her insights and I know she understands her audience. So I really took her guidance to heart. Thankfully I did! So for this past week, I have been revamping our entire slide deck! Up until last night as well! Since Peter was on travel too, I was unable to really sit in one location and talk this through with him. So last night at the Dancing Goat we worked through 70 some odd presentation slides since our presentation was over TWO HOURS today!!!

We presented to 70 parents in this beautiful ballroom! I have to admit presenting to fellow parents can be a daunting phenomenon. Maybe it is daunting to me because I am NOT sure what role I am playing. Am I a parent, am I a counselor, am I an educator, or what? What needs am I serving? Am I delivering content, reflecting feelings, will my story upset someone, trigger bad memories, will parents feel I am suggesting my situation is worse than theirs, and the list of what ifs stirs around in my head! Given all that we had to cover today, we had a very aggressive content agenda especially since it involved sharing information about what medical traumatic stress is (a set of psychological and physiological responses of children and their families to pain, injury, medical procedures, and invasive or frightening treatment experiences), what the symptoms are (arousal/agitation, re-experiencing, avoidance, and sometimes dissociation), and how it may look different in children depending upon their age. Peter and I shared aspects about medical trauma in Mattie's history as well as my own personal struggles with it now. Parents found this very valuable. Of course I am NOT at all surprised by this, but many parents came up to us after this presentation to thank us for giving them knowledge and information for the issues they have been experiencing. Several of them now felt better armed to go back to their physicians to have meaningful dialogues to get treatment for their children. Peter and I both felt very good about this, because if we can help even one child through a presentation, then we deem this as successful. 

In the process we also met and chatted with several incredible parents. One couple lost all three of their children. One child to cancer, the second to an accident, and the third had a heart attack. The mom described her child who had a heart attack, by saying that he died of a broken heart. How could he not? He lost two other siblings. The question is how does this mom go on? I of course know the answer to this.... there is NO answer! 

I met another mom who I chatted with for a while. She came up to me to tell me how much she enjoyed our presentation and how much she appreciated all the data and research we shared. She was candid with me and told me she did not like the fact that I showed the four minute remembrance video of Mattie. Peter and I gave an introduction and after our introduction we explained that Mattie guides our mission and our work, and since we are all parents, parents share their children with each other. So we felt it was important to share Mattie with all of them. We wanted them to understand that we knew what it was like to be in their shoes. I understood the feedback she was giving me. She wasn't telling me to cut this video out of future presentations, or that she did not see the relevance for why we shared it. She was just telling me it was hard for her to see it and she was thankful that our whole presentation wasn't comprised of this very raw emotional content. Most likely that would have been hard for everyone in the room to sit through. Talking about research and data and then applying it to one's life circumstance is much more relevant, especially in the context of a parent retreat. But what I also got from our dialogue together was this mom feels different from the mainstream cancer community. This is her story, so I am not going into detail about it here. Nonetheless, after talking with her, I concluded that we all handle our child's cancer journey differently. Because the research or those within the cancer community suggest we should do x, y, or z, doesn't necessarily mean that will work for everyone. Sometimes we have to be ourselves and figure out what will work for our own mental stability. Being different does make people like this mom and myself stand out. I usually keep my opinions to myself now, but she and I were talking the same language. As if we studied at the same school of hard knocks, and yet we just met each other. A rather surreal experience, which I wouldn't have had if I did not go to Winchester, VA!    

Friday, November 21, 2014

Friday, November 21, 2014

Tonight's picture was taken in November of 2008. Pictured with Mattie was Liza. Liza was a child life volunteer. Neither Peter nor I will forget Liza. Liza was a professional dancer at one time and also had a voice like Glinda the good witch from the Wizard of Oz. She was very memorable, sweet, and had a wonderful disposition and manner about her. Mattie gravitated to her, and I can't say he gravitated to most volunteers.  Most volunteers he threw right out of the room! Like me, Mattie assessed people quickly and was an excellent judge of character. This photo captures two friends, a Lego car, and if you notice closely something was driving the Lego car. It was a roach made out of model magic. We still have this roach today. 


Quote of the day: It's not what you look at that matters. It's what you see. ~ Henry David Thoreau

I feel as if my life has turned into one large piece of candy! I am either loading candy, transporting candy, or giving it away! Today I drove around parts of DC that I was unfamiliar with. I had my map and my GPS on my phone talking to me. I am very directionally challenged so I need all the help I can get. Meanwhile Peter was traveling to Atlanta for the day on business, so I knew I couldn't call him if I was lost. Which I do often! He is so used to my panic calls! The funny part is I expect him to know exactly where I am and help me find my way out of any wrong turns that I make. Somehow he always manages, he is better than a GPS. But today I was flying solo and I had to have maps and my phone talking to me.... guiding me along the way. 

My first stop was to the Ronald McDonald House. The house managers were good sports and posed for a cute photo! The house itself looks lovely from the outside, though unlike the one in Falls Church, I did not tour this facility today. 

My next stop was to the HSC Pediatric Center. Peter and I had actually visited this Center once before, a few years ago to do a presentation about Mattie Miracle to the hospital staff. It was nice to get connected with Courtney, who is the Hospital's child life specialist! This Center is formerly called the Hospital for Sick Children.  http://www.hscpediatriccenter.org/

I am posting the blog early because as soon as Peter's plane lands this afternoon we are driving two hours to Winchester, VA. We have been invited to give a two hour presentation tomorrow to an organization called Special Love. Special Love is a nonprofit that provides cancer families a network of support, made up of other patients and families who know and understand the trials and triumphs of the cancer experience. Special Love is hosting a parent retreat this weekend and we are doing the morning's educational session. The title of our presentation is "Childhood cancer and its psychosocial impact.... A parents' call to action to create a National Psychosocial Standard of Care." We are donating 30 Ziploc bags of candy to the organization for the December Holiday party they are hosting for children and families with childhood cancer. 

http://www.specialove.org/

Thursday, November 20, 2014

Thursday, November 20, 2014

Tonight's picture was taken on December 7, 2008. As you can see Mattie was already in the Christmas spirit with lights strung in his room. With each hospital admission, I always decorated Mattie's room. It was a true labor of love. Because I would decorate and then have to pack everything up when we were discharged. Just to start the process all over again, many times days later when he was readmitted. Moving in and out of the hospital was impossible. It meant moving all sorts of supplies, toys, and clothes. In essence it was basically like moving one's home! However, to me it was important to have some sort of normalcy for Mattie. Decorating provided that, otherwise without touches of home, the hospital environment was very sterile and cold looking. 


Quote of the day: Strength of character isn't always about how much you can handle before you break. It's also about how much you can handle after you've broken. ~ Robert Tew

Today we removed 1500 pounds of candy from our home! I was thrilled to see so much of it go!! Of course we still have much more to get rid of, but to see this large mountain of candy disappear was a positive sign. Yet the question is how was it moved from our home, through our corridors, and into a minivan???! I know if we had to do it alone it would have taken FOREVER!!! 

The answer is we had a lot of help!! Our complex staff mobilized forces today! They showed up at our doorstep with several rolling bins and literally in ONE fell swoop loaded all 1500 pounds of candy! I couldn't get over what I was seeing!!! It was operation candy loading!!! I am so happy I had my camera and could take photos of this outstanding work in motion!

This was our fantastic Columbia Plaza team. Standing up from left to right is Ollie and Bryon and kneeling down from left to right is Mr O., John, Michael, and Vicki. 

This minivan was filled all over with candy. It had a full trunk, the third row of seats was stacked with candy, as well as all the other seats! 

Peter snapped this photo and you can get a feeling for the filled bins!

When we arrived at Georgetown University Hospital, we were greeted by the team of child life staff. From left to right are Jess, Katie, Vicki, and Linda. Needless to say, there was a ton of candy to cart away and store, but these ladies handled it like champs! This is old hat for them, and with each successive year, they some how make it look easier! Which of course it isn't! Candy is heavy, it is hard to move, and these carts are not easy to steer and manipulate. But their 'can do' attitude is what makes them so successful at their challenging jobs. 

While visiting the Hospital, I also ran into Jey, Mattie's CT tech. Or as Jey used to call himself, Mattie's "big brother." Coming to Georgetown used to feel like visiting our second home, but now I am very aware of the fact that so many of Mattie's professional caregivers are no longer working at the institution. This is hard to swallow and accept. To me what makes a place special are the people, NOT the place itself! Once all the people we love are gone, then what is there??! That is a challenging question! My loyalty is to people, and as people disappear, with them they also take a piece of Mattie's memory. I once knew I could turn to people who knew my journey, shared my journey, and helped me remember my son as I walked through the doors of Georgetown. Now with the changes taking place, this is yet another loss Peter and I face, in a long line of losses that have taken place since the day Mattie died. 

Wednesday, November 19, 2014

Wednesday, November 19, 2014

Tonight's picture was taken in November of 2008. Mattie was home recovering from his second limb salvaging surgery and our living room was transformed into a hospital. It was hard to get Mattie comfortable both physically and emotionally at home and I will never forget our Thanksgiving Day and Christmas that year. Mattie was so incredibly depressed and the notion of watching the Thanksgiving Day parade even today brings back bad memories to me. Despite all the chaos, our cat Patches, took her position right by Mattie's side! I affectionately called Patches, NURSE PATCHES, because she seemed to instinctively know when her presence and attention were needed.


Quote of the day: Great opportunities to help others seldom come, but small ones surround us every day. ~ Sally Koch

I went to Falls Church, VA today to make our first candy delivery to the Ronald McDonald House. Some history of the network of Ronald McDonald Houses....... The first Ronald McDonald House opened in Philadelphia in 1974. It came about because of the experience of Fred Hill (Philadelphia Eagles tight end) and his wife, when their 3 year old daughter, Kim, was diagnosed and then treated for leukemia. The Hills camped out in hospital waiting rooms and corridors for three years and saw many other families who did the same. Many families had traveled far to get their children medical care and could not afford hotel rooms. The Hills started a small charity. Jim brought an advertising executive, with ties to the McDonald's corporation, in to help with fundraising. The effort escalated until the first Ronald McDonald House was established as a residence for families of children being treated at the Children's Hospital of Philadelphia. Today there is a growing network of more than 300 Houses around the world.

In order to qualify to stay in such a House, you first need to have a child who is sick and hospitalized and you need to live 25 miles away from the treating hospital! This particular Ronald McDonald House is located near Fairfax INOVA Hospital. To put this into context, from where I live in DC to Fairfax INOVA Hospital is technically 16 miles in distance, so if we were to add an additional 9 more miles I would qualify to stay at the Ronald McDonald House. My point is 25 miles away from the treating hospital isn't geographically far to qualify for such a stay! http://www.rmhc.org/ronald-mcdonald-house


When I went to drop off the candy, I was given a wonderfully warm greeting by Barbara, the manager of the House. Barbara gave me a tour of the facility and I got to meet the executive director as well. There are many aspects about this facility that make a great first impression: 1) the cleanliness, 2) the homey and warm feeling of the space, 3) the bright and airiness of the rooms, 4) the attention to details, and 5) the art work. This is the kitchen space. I downloaded this photo from Google images, I did not take it myself! When I saw the kitchen today it was being cleaned and was spotless! But what I liked about the kitchen was it did not look like an institution.... but colorful, like one's kitchen at home!

This room is entitled the "Oasis." It is meant to be just that, a quiet and reflective space for families to go and be by themselves. To be with their thoughts and feelings, without having noise and distractions. 

This is just one example of the creative art work on the walls.....Helping Hands! It is a decoupage of hands and on the hands are some meaningful messages!

This wonderful playroom was designed by Barbara herself! She takes great pride in it as she should. When she described what the room used to look like, this is most definitely a massive improvement. Of course when I looked at those foam puzzle tiles on the floor, I immediately thought of Mattie! Mattie loved these puzzle foam pieces. He could play with them for hours and as I said to Barbara today.... no one should have to need her house, but if they do, it is wonderful that it is available to them. It is also wonderful that they have access to someone as caring and dedicated as she is looking out for them! After all, she did not know me from Adam, yet after receiving my email and hearing my story, she greeted me at the door with a hug. That said a lot immediately to me about her!

Tuesday, November 18, 2014

Tuesday, November 18, 2014 -- Mattie died 271 weeks ago today. 

Tonight's picture was taken in November of 2008. You maybe asking yourself.... why was Mattie using his left foot to operate the laptop? Well the answer to that question is simple! The left leg was the only limb that did not undergo a surgical procedure. All the other limbs had tumors in them with large bones that were removed and replaced with prosthetics. Therefore, Mattie was determined to play and the only way he could do this was by using his foot. In fact his toes and foot became as dexterous as a hand. I wouldn't say Mattie was in love with computer games but given his confined status, he gravitated to the computer. 


Quote of the day: The most basic and powerful way to connect to another person is to listen. Just listen. Perhaps the most important thing we ever give each other is our attention..... a loving silence often has far more power to heal and to connect than the most well-intentioned words. ~ Rachel Naomi Remen

Today was the last day I picked up candy for the annual drive! I was stunned to find this much awaiting me. I honestly did not think there would be more than a bag or two!!! To my amazement there was another trunk full of candy to pick up. Thankfully it was all sorted... which is a labor of love!

Tomorrow the candy delivery begins!!! This week the candy will be making its way to the following places:

1) The Ronald McDonald House (Falls Church, VA; http://www.rmhcdc.org/)
2) Georgetown University Hospital
3) The Ronald McDonald House (Washington, DC)
4) HSC Pediatric Center (http://hscpediatriccenter.org/)
5) Special Love (http://www.specialove.org/)


This evening, I came across an article in the Wall Street Journal entitled, After the loss of a spouse, There is no right amount of time before moving on. What caught my attention in this title was the two words, MOVING ON. Those two words set me off. To me moving on means forgetting the person who died, whereas moving forward means just that, you must find a way to continue living but you carry that person's memory with you on this journey. So I have to admit the title of the article already clouded my impression of what was to come. Unfortunately the article never got any better. I do not plan on judging any of the widowers in the article because we all grieve differently, need different things, process loss differently, and therefore how we move forward will naturally differ. I am not quite sure how any one of us would manage a request from a dying spouse asking us not to remarry? I suppose our natural inclination is to honor the request as the person is on his/her deathbed, maybe??? But then what happens after the person actually dies? In this case, as the article indicates, the man remarried despite assuring his dying wife he would never remarry. It is easy to judge this man with disdain, but then when you read some of the findings from research about the differences between men and women after the death of a spouse it may help to explain his decision and personal commentary throughout the article.

An excerpt from the article:
Over the years, various studies have shown men are more likely to seek out a new relationship, and to do it sooner, than women, Dr. Wortman says. She offers findings from various studies: In the first year after a spouse’s death, 54% of men have a sexual relationship, compared with 7% of women. By 25 months after a spouse’s death, 61% of men had a new relationship, versus 19% of women, and 25% of men had remarried, versus 5% of women. Men have more opportunity. Because women live longer, widows outnumber widowers. Yet men who are most likely to look for a new mate were more emotionally reliant on their partner, Dr. Wortman says. For a woman, though, the more emotionally reliant she was on her husband, the less interest she has in finding a new mate, research shows.


After the loss of a spouse, There is no right amount of time before moving on:

http://online.wsj.com/articles/after-the-loss-of-a-spouse-there-is-no-right-amount-of-time-before-moving-on-1416251499#livefyre-comment

Monday, November 17, 2014

Monday, November 17, 2014

Tonight's picture was taken in November of 2008 after Mattie's second limb salvaging surgery. Despite Mattie being hooked up to IVs, drainage tubes, and pain pumps... look at his will to find a way to move and smile. This required great effort because he was in a lot of pain, confined to his bed and with a life greatly altered. Trying to give him a quality of life was challenging both on a physical and emotional level. Which is why there are certain people from our days in the hospital who will always hold a special place in our hearts! They went out of their way to make this sheer torture more bearable. 


Quote of the day: Great opportunities to help others seldom come, but small ones surround us every day. ~ Sally Koch

Yesterday we posted our 3650 pound candy total on Facebook and my friend and colleague, Denise, created this wonderful photo compilation for us! We actually started the candy drive in 2011, but back then we did not take a final photo like you see here. We only started this tradition in 2012! Check out this growth rate: in 2012 we collected 1000 pounds of candy, in 2013 we collected 2000 pounds of candy, and this year we collected 3650 pounds of candy!! We practically are living in a candy factory now!!! 

I ventured to Maryland today to visit Leslie, my college roommate. Leslie has been working hard at collecting candy in her community and then sorted it! She collected quite a trunk load!!! Leslie has been helping me with this drive for three years! Leslie and I have known each other a long time and in a way we have grown up together, so in a way it isn't surprising that we have similar view points on our educational system, parenting priorities, and the nature of service learning and volunteerism. 

Later today as I was checking my email, I noticed I received an article from The Washington Post from my friend, Debbie. The article is entitled, No, you don't have to "move on." It's okay to grieve forever. The death of children and siblings affects the quality of the rest of our lives. The title alone caught my attention! So I was compelled to read it. 

This was actually a very brave article to write as a PhD student! I give Zoe a gold star, but then again she lost a brother at an early age and saw a family transformed by such an unexpected and tragic death. I have no doubt that such a personal loss has influenced her lens and how she interacts with any client who walks through her door with a grief and loss issue. Do I think it is important to have gone through a loss of a child in order to help someone with such a loss, not necessarily, but it can help! 

Zoe's commentary that is most noticeable from the article is:

Like many therapists, I get a lot of people who come through the door thinking there’s something wrong with them because they’re feeling the loss of someone who has died, left or disappeared long ago. Often they ask me why they still sometimes cry. Sometimes I ask them to tell me why they think they shouldn’t still be sad. And most of the time we come to the conclusion they’re in my office so I can somehow put a cork in it for them so they can stop upsetting their families and the rest of the world.

What Zoe is writing about is unfortunately spot on. Many of the issues faced by those who are grieving is feeling different in the world around them. Friends and family want you to return to your former self, they want you "fixed," "happy," and adopting the philosophy that life "must go on." But what that attitude results in is only frustration for the griever. Frustration because it is constantly challenging to have to justify one's heart ache, one's sorrow, and one's feelings. Yet the more one wants to talk about these feelings and thoughts, the more the griever is deemed odd or as Zoe puts it "ghoulish." I think the term ghoulish is quite apropos. Living with the sights and sounds we have experienced during Mattie's battle and death will always be a part of us. They live within us and yet no one can see them. We do not talk about these things for the most part, but that is not to say that they do not exist and they do not influence our lives. They do, which is what makes childhood cancer ghoulish in a way. It is the part of our lives which we must hide and keep in their place so as to not scare those around us.   

Yet what would grief work really look like for a bereaved parent if we lived in a world where we did not feel the pressure to protect those around us from our true feelings, our hurts, our turmoils, and of course from being judged for having these thoughts and feelings?!

No, you don't have to "move on." It's okay to grieve forever. The death of children and siblings affects the quality of the rest of our lives:

http://www.washingtonpost.com/posteverything/wp/2014/11/17/no-you-dont-have-to-move-on-its-okay-to-grieve-forever/?hpid=z12

Sunday, November 16, 2014

Sunday, November 16, 2014

Tonight's picture was taken in November of 2008. Mattie was recovering from his second limb salvaging surgery and his doctors, nurses, and his respiratory therapists all wanted Mattie to be working his lungs post surgery! Fluid can accumulate in your lungs during surgery, since anesthesia can slow down your breathing. Therefore it is important to work the lungs and get this fluid moving up and out post surgery. However, with Mattie this had to be achieved in a fun and entertaining manner. So we tried it with straws and all sorts of games because the typical spirometer methods did not cut it with Mattie. The funny thing with Mattie, as was typical even during the days Mattie was doing occupational therapy for his sensory integration issues, is that I always had to do the therapy first! If I tried it, then he would do it! 


Quote of the day: Treat others with respect and you will always be wealthy, because your community is your real currency. ~ Bryant McGill

Peter came back from Boston today and we both worked at weighing candy and moving it to take this final photo! The grand total is 3650 pounds of candy! This exceeds our 2000 pounds collected last year! Having sat under most of it, I can attest that it weighs a ton!!! Mind you NOT all of it is even in this photo!!!!!!!!!! it is super heavy so we decided to move as much as we could from one part of our home to the couch to stage this picture. Can you believe there is even a couch somewhere underneath all this candy????

Peter took a close up photo of Mattie and me!!! We would like to especially thank the following individuals, schools, community groups, and businesses for helping to make our drive such a success:
Tina Lytle, Ann Henshaw, Heidi Anderson, Leslie Greenberg, Carolyn Coker, Jane Pisano, Catherine Canterbury, Ildiko Watkins, Alysa Johnson, Christy Stults, Mary Doane, Dawnee Giammittorio, Sonja Clark, Susan Hiddleston Oswald, Katie Magnuson, Elizabeth Pugh Atkinson,Maria Bellanti, Body Dynamics, Honest Soul Yoga, Fairlington Dental, Alexandria Country Day School, Blessed Sacrament School, St. Stephen's & St. Agnes School, Douglas MacArthur Elementary School, Episcopal High School, Lab School of Washington, Lyles - Crouch Traditional Academy, The River School, American Bankers Association, Arlington Aerials Gymnastics, B'nai Shalom of Olney, Moms Club of Bethesda-NW, and Presto Valet.

We literally are surrounded by stacks of candy everywhere. That may sound lovely but candy in such bulk has quite a profound and powerful fragrance. 

Our goal is to deliver our first significant load of candy to Georgetown University Hospital this week!!!