Saturday, March 4, 2017

Saturday, March 4, 2017

Tonight's picture was taken in April of 2006. This was at Mattie's fourth birthday party which we held at a nature preserve. The theme that year for the party was dinosaurs. As you can see we had a dinosaur pinata and Mattie was going to take the first swing at it as the birthday boy. Do you notice a blue toy train ("Thomas") in the background? Well that was Mattie's train. Mattie never went anywhere without a toy of some sort in his pocket or his hand. He tended to transport cars, trains, stones, and leaves for example and not unlike the sippy cup of milk, these items always landed up in our photos. 


Quote of the day: The past is never where you think you left it. ~ Katherine Anne Porter

It isn't a good sign when it took me thirty minutes to find a quote for tonight's blog! Part of the reason is I am tired and the other explanation is I was looking for the right quote that captured how I felt after returning to Mattie's school today to see a play. 

We saw the musical, The Little Mermaid. It was a high school production. In all reality that shouldn't be a complicated visit, after all Mattie never went to the high school. Entering the school's theater isn't attached to our past per se. That is until you factor in some of the kids who were performing, who are freshman in high school, or in other words...... class mates of Mattie's. If Mattie were alive today, he would be turning 15, and in high school. It is always disconcerting to see Mattie's classmates growing and thriving, and in my mind Mattie will always be 7. 

Their lives have moved on, and our lives have been stopped. We continue moving forward but that isn't equivalent to raising your child and doing all the typical things families do together. School being a part of that. When I visit Mattie's campus now, I am literally a stranger and not part of the school community. In fact, Peter and I saw several of Mattie's classmates and we recognized them but they did not recognize us. That is actually hurtful, but naturally I do not blame the children, as much as the situation. Yet regardless of my ability to rationalize and be mature about it, it still leaves me with the feeling...... of being an outsider. Of not fitting in, on top of the obvious reason for this being we aren't raising a child. Yet the consequences of losing Mattie produce long standing social isolation and differences that reverberate through all aspects, contexts, and interactions in our lives.  

Friday, March 3, 2017

Friday, March 3, 2017

Tonight's picture was taken in April of 2006, at Mattie's fourth birthday party. I held Mattie's party at Riverbend Nature Center in Great Falls, VA. The theme of the party was dinosaurs. However, the educator on site, did special activities with the children.... such as a nature walk, digging for plastic dinosaur bones in a sandbox, as well as getting to see and hold various animals (as you see here). Mattie absolutely loved the day and the kids felt like it was an adventure!


Quote of the day: The power of your story may not lie in its drama, but in its absolutely perfect relationship to your cause. ~  John Capecci and Timothy Cage


In July of 2008 (when Mattie was diagnosed), Peter created Mattie's blog. He was tired of repeating each day's occurrence in treatment to friends and family and decided we needed a centralized place for our community to turn to. Peter was ahead of his time, because when he created this blog through Google, sites like Caring Bridge didn't really exist yet. It was a few weeks into the blog's creation that I actually replaced Peter as the author and started to write. Needless to say, now almost 9 years later I am still writing. I write everyday. I know what I write on the blog maybe confused with Vicki the mental health professional or Vicki the Foundation Leader. Which of course makes sense, since all these Vicki's are wrapped up into Vicki, Mattie's mom. After Mattie died, the blog became my outlet for managing and processing grief. Grief for bereaved parents doesn't end after year one, but instead becomes integrated into one's daily life forever. Like a fifth appendage if that makes sense. 

There are times in which my professional work with the Foundation can trigger very real and deep feelings. These feelings come out subtly or perhaps NOT so subtly on the blog. The intention for me writing is to express myself, to have an outlet to reflect on what I am thinking or feeling, because I must admit there are few safe outlets in our society. Most people don't want to hear your innermost thoughts and pains from child loss. So we all need an outlet, a place to vent, and that outlet for me is Mattie's blog. However, it is not only my place to vent, but it is my hope that in sharing other parents who are faced with similar challenges and struggles can see that they are not alone. That in grief we all cope and try to manage with others who may not understand us, and at the same time we feel we can't understand them. Conflicts of all sorts can arise when these two groups (childhood cancer families versus individuals with no personal experience with childhood cancer) air their thoughts and feelings. At times feelings maybe hurt, but in all reality, I think this is necessary in order for discomfort to lead to enlightenment. Enlightenment about different perspectives and insights. 

It is child life appreciation month! These four women are the child life specialists at MedStar Georgetown University Hospital. In 2011, we brought Jess (in green) to Georgetown, and now this year, we have brought Morganne (in blue) to the hospital.





What is child life? I think this posting below sums it up beautifully..............

What I’m not:
A nurse. 
A doctor. 
A social worker.

A “Keeper of the Toys.” 
A magical “make-this-kid-not-cry” person. 
Only someone to play with the kids.

I’m not superfluous.

What I am:
I am a teacher, 
A helping hand, 
A support, 
An advocate, 
An active listener, 
A therapeutic touch, 
And a child development specialist 
Every. 
Single. 
Day.

I am an OR prep-er, 
An IV teacher, 
A de-coder of PICC, VCUG, MRI and NG, 
A distraction provider, 
An inpatient support, 
And a guide and voice for siblings 
All in the same day.

I am calm despite cancer, CAT scans, and catheters. 
I am strong in the face of syncope, sickle cell, and surgery. 
Kids can’t always do these things for themselves. 
That’s why I’m here.

I am deliberate in all of my actions and words 
Because I use the language of children 
And it has power. 
I am flexible and go where I’m needed 
Because children can’t always be flexible 
About when they’re going to freak.

I am not here to merely play with children, 
give them toys, and distract them 
With “SpongeBob.”

I’m a Child Life Specialist. 
When kids say they can’t, I tell them they can.

Thursday, March 2, 2017

Thursday, March 2, 2017

Tonight's picture was taken in April of 2005, during Mattie's third birthday party. Because I really do not have space to put up a kids table as well as have a magic show and entertainment going on, I served the kids on the floor. They all seemed to love it! It is hard to believe this was once going on in my living room. Seems like another lifetime. 



Quote of the day: I spend half my time comforting the afflicted, and the other half afflicting the comfortable. ~ Wess Stafford


I came across tonight's quote and literally laughed. I am not sure what context Stafford wrote this quote, but in the context of my life, it is perfect. Mattie Miracle works hard to change the services and care provided to children afflicted with cancer, but who do we raise our funds from to accomplish this? For the most part from individuals and families untouched by childhood cancer, and yet to help them understand the world of childhood cancer..... I have to afflict or paint a picture for them that is not always comfortable. After all there is nothing remotely comfortable about children having cancer, having to observe this, the treatments, the side effects, and the overwhelming emotional consequences that ensue from the disease. So I constantly feel pulled in different directions because working with those who are battling childhood cancer and those who do not, are really two separate worlds and yet both worlds need to co-exist to help each other. 

Georgetown University Hospital posted this article on Facebook from the Wall Street Journal today about Child Life Specialists. It was wonderful to read the coverage of this profession because Peter and I couldn't have survived Mattie's 14 month ordeal in the hospital without Linda (Mattie's amazing child life specialist). Which is why Mattie Miracle has been funding a child life position at Georgetown since 2011. 

The article does a nice job explaining what child life is and how these services add to the overall well being of a child. However, what the doctor interviewed goes on to state is that every patient needs access to child life services. I couldn't agree more. I joke with Linda all the time saying.... if I am in the hospital, I want you by my side. I am not kidding, I saw what Linda was able to do for Mattie and for Peter and me. She helped make a very abnormal situation more bearable, and I would say Mattie's happiest moments were when Linda was on the scene. But why are child life specialists only for child patients? Well after reading this article, I am thrilled to read that 200 institutions are using elder life specialists now. As these psychosocial services are indicated to help reduce hospital re-admission and perhaps for older adults admission into post acute stays at nursing/rehab centers. 

I remember when a family friend was admitted to Georgetown Hospital a few years ago, I had the child life staff visit him and bring him some Legos and other items. Mind you our friend was an adult. It turns out he LOVED the Legos and found them a good distraction. Distractions are the key to surviving crises and grief, and no other professional group knows how to provide such activities better than child life. 

Why Hospitals Should Treat Adults Like Children:

https://www.wsj.com/articles/why-hospitals-should-treat-adults-like-children-1487864240

This afternoon, I took my friend Tina out for lunch along the Potomac River. What I love about this photo is it looks like we were on a cruise ship! Despite the cold and wind outside, the food, service, and company were lovely. 

Wednesday, March 1, 2017

Wednesday, March 1, 2017

Tonight's picture was taken in April of 2005. This was actually at Mattie's third birthday party. I hired a George Washington University student to do a magic show for the kids as well as make balloon animals. Mattie had a great time, and so did everyone else. The magician brought a real life rabbit... which was a hit. 


Quote of the day: It was one of those March days when the sun shines hot and the wind blows cold: when it is summer in the light, and winter in the shade. 
~ Charles Dickens

Today was an absolutely ridiculous weather day! It was sunny and humid in the morning and by noon, things were turning! With torrential rain, dark skies and let's not forget about whipping wind. Sunny was BESIDES himself. He doesn't like the sound of rain or storms. Who could blame him. 

Later in the day, Sunny was getting stir crazy, so we took a walk. Right outside the Kennedy Center we could hear a racket! So loud that both Sunny and I stopped in our tracks to observe. What was it...... a ton of crows all in the trees squawking. I tried to get a photo of a few of them. But imagine every tree dotted with crows. I literally felt like I was in a Hitchcock movie with them watching us.  



It is my hope that you will consider signing this petition to the White House. Just click on the link below. It wouldn't take much time at all. This petition was created by a fellow cancer mom who lost her son to osteosarcoma. Each year the childhood cancer community asks the president to light the White House in Gold. Gold is the color of childhood cancer awareness, and September is childhood cancer awareness month. The month in which you may see people wearing gold items and buildings in your city may actually be lit up in gold lights in September. However, to date, the White House has yet to acknowledge how this disease impacts children. So now a new petition and requests are being made to President Trump. 

THE PETITION....
Turn the White House ‘Gold’ for kids with cancer

https://www.change.org/p/turn-the-white-house-gold-for-kids-with-cancer?source_location=petition_nav

(Pictured... the White House with a Red Ribbon for HIV awareness)

Another fellow cancer advocate, Ruth Hoffman of the American Childhood Cancer Organization, received this letter from the White House last year as a response to her request to light up the House in GOLD. It said.....

"We have asked about lighting the WH up on behalf of requests that have come in, and for pediatric cancer specifically. As I’m sure you know, many diseases and advocacy groups have a color they use for awareness and the number of requests have been very high since 2009. Unfortunately a policy was set that we would not be able to add additional annual light ups. Bill Clinton and George Bush each chose one during their Administrations; breast cancer and HIV. The White House kept those two on behalf of past Administrations. The LGBT lighting for the Supreme Court decision was a one time historic event so the policy was lifted for that one time, but won’t be annual.

(Pictured... the White House lit up in Pink for Breast Cancer awareness)

We have asked if the policy will change in the future and will continue to pursue it. Thus far it seems as though adding an annual lighting, or choosing only some of the many awareness colors out of the requests we’ve received is something we won’t be able to do, at least for now.

(Pictured.... the White House lit up in rainbow lights in acknowledgment of LGBT issues)

Thank you again, and please be in touch. We’ll absolutely keep you posted if anything changes.


The White House"



Now what will lighting the White House in Gold actually accomplish? Will it help with funding? Will it provide new treatments for children with cancer? Will it save lives? Support children and their families? The answer to all of these questions is NO! So why do it? The childhood cancer community wants to do this because seeing the White House in Gold would send an important message to our society.... childhood cancer exists, it impacts our children and their families, and more has to be done because children are the future of any great Country. If we do not bring awareness to these issues at the highest government level, then true change is hard to achieve. PLEASE SIGN THE PETITION!

Tuesday, February 28, 2017

Tuesday, February 28, 2017 -- Mattie died 389 weeks ago today. 

Tonight's picture was taken in April of 2003, during Mattie's third birthday party. Mattie loved the cartoon, Blues Clues. So I hosted a Blue's Clues party for Mattie, and had all the children go on a scavenger hunt to find Blue's Clues around our home. It was a fun birthday, and Mattie was truly in the birthday spirit. Mattie's first two birthdays were challenging for him as he did not like a lot of noise, commotion, or chaos.... all part of a child's birthday party. But we turned a corner at age 3, and Mattie was right in the mix. 



Quote of the day: Tired, but not the kind of tired that sleep fixes. ~ Maureen Johnson

Our largest corporate sponsor, Dominion Consulting, posted this article today on their website. We were thrilled to read it. Dominion has been supporting Mattie Miracle since 2011 and recently also contributed to our Roundtable on Capitol Hill (January 24th) by providing our moderators, Todd and Joe. Both of Todd and Joe are professional consultants, who generously shared their skills and expertise with us and made our event a success. We are deeply grateful to Dominion Consulting. 

WORKING WITH MATTIE MIRACLE CANCER FOUNDATION TO CREATE BETTER OUTCOMES FOR KIDS..........

http://dominionconsulting.com/working-mattie-miracle-cancer-foundation-create-better-outcomes-kids/

I am desperate to find the right setting to board Sunny. Leaving him with friends doesn't work, because he is an escape artist. So given that I heard so many wonderful things about Dogtopia in Alexandria, VA, we went for a visit today. Check out the welcome sign they had out for us. Sunny was evaluated and I was given a tour. Everyone I met was a love and VERY dog friendly. Sunny was cautious and shy, so I will be bringing him for a couple of daycare visits to help him get acclimated. Sunny is a very emotional and sensitive pooch, so finding the right place for him is crucial. Here Sunny would be interacting with dogs all day and at night crated for his own safety. So the jury is out! 

Monday, February 27, 2017

Monday, February 27, 2017

Tonight's picture was taken in April of 2005. Mattie was holding up three fingers. Why? Because we were celebrating his third birthday that day and I asked him.... how old are you? As you can see Mattie let me know!!! 




Quote of the day: It takes so much energy to keep things at bay. ~  Sue Monk Kidd


We are very honored to received our 11th endorsement of the Psychosocial Standards of Care from the B+ Foundation. What is particularly wonderful about this endorsement is it is from a fellow childhood cancer Foundation. It is vital to have the support of childhood cancer advocates because ultimately the Standards are designed to benefit children and their families. They are the reasons we are passionate about creating change and having true comprehensive cancer care implemented. Psychosocial care and support not just during diagnosis but throughout the cancer journey, which includes survivorship or end of life and bereavement. 

We had the opportunity to meet Joe McDonough, the Founder of B+, at our Psychosocial Symposium on Capitol Hill in March of 2012. He and his daughter attended that full day event and we have been connected to Joe ever since. We greatly admire all that Joe does to emotionally support children with cancer as well as the incredible funds he raises to offer this support and to fuel research. It means a lot to us that Joe stands behind our work and our mission. 

The Andrew McDonough B+ Foundation honors the life of Andrew McDonough. Andrew battled leukemia, septic shock and complications of childhood cancer for 167 days before passing away on July 14, 2007, at the age of 14. Andrew’s B+ blood type became his family’s and friends’ motto throughout his fight against childhood cancer — to “Be Positive.”

The B+ Foundation is about Kids Helping Kids Fight Cancer — raising money through dance marathons, 5Ks, T-shirt sales and more, to provide financial and emotional support to families of children with cancer nationwide. The B+ Foundation also funds critical, cutting-edge childhood cancer research.

To Read B+ Foundation's endorsement of the Standards, go to:
http://bepositive.org/b-foundation-endorses-psychosocial-standards-care/

This evening I designed these floral arrangements for our annual volunteer appreciation dinner tomorrow night. To me, no table arrangement is ever complete without flowers. There is something special about seeing flowers and also their fragrance.... especially during the winter months!

Sunday, February 26, 2017

Sunday, February 26, 2017

Tonight's picture was taken in April of 2004. Mattie was two years old and as you can see playing in his green frog sandbox. Mattie absolutely LOVED his sandbox and would play in it at all times during the year. I did not have the heart to part with this sandbox. So now it is outside our deck, in our common's space. All the children who live in our complex come to play in Mattie's sandbox. I have to admit that when I first started seeing this, it upset me greatly. I wanted to tell them this box wasn't for them, and to move along. But I didn't. Over time I have accepted their visits and feel that Mattie would want other children to enjoy his frog and all the toys he kept inside of it. 


Quote of the day: You feel fine, and then, when your body can't keep fighting, you don't. ~ Nicholas Sparks


Not writing much tonight as I haven't been feeling well all day. It is like I am having a total system shut down. I am absolutely exhausted and can't keep my head up. So as Sparks' quote aptly points out..... when your body gives out, you do have to listen to it and give in. Can't remember the last time I ever napped during the day. But I did today and plan to continue resting.