Friday, February 18, 2011

Friday, February 18, 2011

Tonight's picture was taken in October of 2003. This was another photo from the farm series I have been displaying all week. What I love about this picture, is I am not sure who was more intrigued by this encounter, Mattie or the goat?! It seemed to be a mutual interest!

Quote of the day: In youth one has tears without grief; in age, griefs without tears. ~ Joseph Roux

Tonight's quote caught my attention when I read it. I suppose the beauty of youth to some extent is that grief may be felt differently. I am hesitant to say that one needs to reach a certain age to truly grieve, because I think that is judgmental and most likely inaccurate. But I do agree that perhaps in youth tears come easier for various reasons. First and foremost is the simple fact that as we age more and more barriers and facades develop that enable us to protect ourselves or even conceal our true feelings. Therefore, I think as we age we learn NOT to cry and we learn to internalize a great deal of our inner most thoughts and feelings. Yet even though grief may exist without visible tears, the tears do exist in a different format. The physical pains, the exhaustion, the feelings of depression and hopelessness all replace the tears.

I began my day walking another 3.5 miles with Ann. It was an incredible weather day in Washington, DC, with 70 degree temperatures. It truly felt like spring and I could visibly see a change in attitude in those around me. People were friendlier, chatted with each other, held doors open, and seemed more courteous. I noticed this while I was shopping and it immediately caught my attention. I have read studies about the impact of good weather on people but I guess I never really paid much attention to this until today. I know that heat and sun make me feel better, but witnessing this in others was a confirming feeling.

I spent a good portion of the day running around doing chores. Peter and I are preparing for two things next week. The first is The Mattie Miracle Cancer Foundation is visiting Capitol Hill on Tuesday and we will be meeting with legislative assistants from four different congressional offices. We are very grateful to Brett Thompson and Mercury, LLC (a high stake public strategy firm), who have graciously offered their services to us for a year to develop a legislative platform. I will share more about these visits on Tuesday. In addition, the Foundation has its first face to face walk planning meeting for this year on Wednesday. Up until this point, all correspondence for the May 22nd event have been electronic. This is a talented, dedicated, and efficient group of individuals and we have accomplished a great deal so far, but our face to face meeting is so important.  It isn't easy to find a planning date that works for everyone, but at least 20 people are coming to Wednesday's meeting, which is a phenomenal turnout.

Thursday, February 17, 2011

Thursday, February 17, 2011

Tonight's picture was taken in October of 2003. I have been displaying a series of pictures over the last week of Mattie visiting a farm in Leesburg, VA. As you can see, I was trying to introduce Mattie to a very large pig, and I was trying to describe to him the coarse texture of the animal's fur. In typical fashion Mattie's antennae were out (his hands), but he wasn't quite sure if he wanted to venture closer and touch the pig. He eventually did!


Quote of the day: There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love. ~ Washington Irving

Today was an incredibly beautiful day in Washington, DC. The temperatures were in the 60s and I decided to get up early and walk. I met up with Ann and together we walked almost four miles outside in the sunshine. It felt like spring and it was delightful to be outside in the fresh air. I haven't walked like this in a long time but I do find it helps me feel better physically and mentally.

I spent a good portion this afternoon at Ann's house. Mary, Ann's mom, was over visiting and together we chatted, had lunch, and went through many family photos albums. Naturally I am not related to Ann and therefore I do not know her extended family. However the irony is since we spend a good portion of our days together, I have become acquainted with her family through stories or photos. So this makes it much easier to go through albums with Mary, because we can converse about what we are seeing.

This evening, Peter and I had the opportunity to have dinner with a Hospital administrator we have become friends with. We met Tim through Dr. Shad (the director of the Hem/Onc program at Georgetown University Hospital), and basically we instantly connected. Tim is also a cancer survivor and this gives him personal insights into the battle we faced with Mattie. We are able to understand and share how our life priorities have changed, how we maybe more honest and forthright with others, and how we protect ourselves from opening up our social circle because others may not understand us and our feelings. While chatting with Tim tonight, he referred to Peter and I as FEARLESS. I have been described as many things, but fearless is a new one for me. This came up when Tim asked us how on earth we get out of bed in the morning? He basically wanted to know how grief hasn't encompassed us completely and become all consuming. Peter and I answered this question in different ways. Peter explained what gets him out of bed each day is the notion of keeping Mattie's memory alive. Peter was quite eloquent with his response. I on the other hand was NOT eloquent and my simple answer was.... I have no idea why I get up each morning. Mattie's Foundation is important to me and it does give me purpose. But it is not what gets me up in the morning. Despite our different responses, I do see Tim's point. It takes a great deal of courage, faith, and perhaps love to get up each morning. Because despite Mattie's cancer battle being over, this battle will always remain in our hearts, mind, and body. So I agree, we are indeed fearless, because we have to battle our own internal war in order to find the peace necessary to greet a new day.

We were talking to Tim this evening about the long term effects of cancer on a patient. But honestly I think there are long term physical effects on the caregivers of cancer patients as well. I know that I am constantly tired, fatigued, and achy. I fight those feelings on any given day, because it would be very tempting to give in some days and just rest. In so many ways, Mattie cancer and death have aged me and I do not have the same energy or mindset as I once did. I am pretty sure being heartbroken can have physical consequences that are HARD to quantity and measure.

Wednesday, February 16, 2011

Wednesday, February 16, 2011

Tonight's picture was taken in October of 2003. We took Mattie to a local farm and as you can see in this picture, Peter had one hand on Mattie and the other on this cute cow. Though this picture was taken at a strange angle, I still love it. To me, the cow and Mattie were facing the same direction and yet neither one of them wanted to really stand still for this picture.



Quote of the day: And you would accept the seasons of your heart just as you have always accepted that seasons pass over your fields and you would watch with serenity through the winters of your grief. ~ Kahlil Gibran


I began my day by exercising. When we cleaned out Mattie's room this weekend, I found this aerobic stair stepper exercise machine that a former student sent to me while Mattie was battling cancer. So Peter assembled it for me this weekend and I decided to try it. How such a small machine could be so challenging is beyond me. After 10 minutes, I gave up for the day, but realize I have a goal to work toward.

I stayed home the entire day and was glued to my computer. I was working on Foundation paperwork and remained quite focused on the upcoming Walk. In the midst of working, I received an email pertaining to my work with the DC Counselor Licensure Board. As some of my readers who are mental health counseling professionals know, I have been advocating for licensed professional counselors in the District of Columbia to be considered independent providers. An independent provider is technically someone who can diagnose, treat, and create a client's treatment plan (which basically allows client's access to certain services, services which are reimbursable by health insurance). For years, counselors working for the DC government have been told that they can't write treatment plans and therefore must be supervised and have a licensed social worker sign off on their work. I will spare you the details because for this venue, it isn't important. But what is important is the simple fact that all may vocal battles and letter writing paid off. I learned today that legislation in DC is being amended to so that licensed professional counselors can sign off on treatment plans and be independent providers. When I learned of this news, I practically jumped out of my chair. I walked around our home in thorough excitement, because you need to understand this is a battle I have been fighting for ten years.

As I was walking around the house, I went into Mattie's room, and I basically said to his picture.... "we did it!" Mattie would have been proud of me, because he would always get a kick out of watching me fight for a cause. In fact one of my board members told me today in a congratulatory email that I fought like "hell," and I should be proud of what I accomplished. For several hours today, I felt good. I felt that I enabled a change, a change that only benefits my profession and the people we serve.
This evening, Peter and I attended an event hosted by Hope Street Kids. We were invited as founders of the Mattie Miracle Cancer Foundation. In attendance with us were Ann and Dr. Shad, both Foundation board members.

The mission of Hope Street Kids is to eliminate childhood cancer through pioneering research, advocacy and education (http://www.hopestreetkids.org/). We had the wonderful opportunity to network with many people who have made helping children and their families with cancer their life mission. I met several people who, like us, started their own foundation because they lost a child to the disease. It was interesting to hear about their activities and goals, and certainly it is important to learn from others and collaborate on our common missions. Peter and I had the opportunity to reconnect with Dr. Peter Adamson, the chair of the Children's Oncology Group and an oncologist at the Children's Hospital of Philadelphia. We also reconnected with Ray Thorn, the Health Legislative Assistant in Rep. Chris Van Hollen's office. We met Ray in March 2010, while advocating on Capitol Hill. The ironic thing is he still remembered my name and our story. That impressed me and caught my attention.

In addition to the event being a good networking opportunity, the actual location was over the top. Peter and I had visited the Mansion on O Street in Washington, DC once before. Peter's brother actually had his wedding reception there. The Mansion is home to over 100 rooms and 32 secret doors. It is considered an intimate private club, luxury hotel, conference center, and museum. Even though the wedding I attended there was over a decade ago, this place leaves a lasting impression. I encourage you to google it and come to your own conclusions. The place is artistic and eclectic, and yet seems like something out of a movie.

This evening in one of the rooms was an amazing chocolate table (pictured). Frankly it was hard to leave that room. It had a chocolate fountain and everything possible to dip into the fountain. Pictured with Peter and I is Randy Walker. Randy is the co-founder of Hope Street Kids. He lost his daughter, Caroline, when she was 9 years old to Neuroblastoma. Randy flew in from Ohio to attend tonight's event, and though Peter has met Randy before, tonight was my first encounter. I thoroughly enjoyed chatting with Randy. He is down to earth, very approachable, and is passionate about children's cancer.

Do notice the background of things that surrounded us in this picture. This gives you some idea for the rest of the house. It is a four story structure, and every room is jammed packed with art and other things. Needless to say, we all had a great old time touring the rooms. I insisted that Ann and Dr. Shad see the rest of the house, and though I tried to do it justice, they really had to see it for themselves. I haven't laughed so hard in a long time!!!

Tuesday, February 15, 2011

Tuesday, February 15, 2011 -- Mattie died 75 weeks ago today.

Tonight's picture was taken in October of 2003. As you can see Mattie was watching a Baby Einstein video. I am not sure who loved these videos more, Mattie, Peter, or I. The ironic part about these videos were they were simple, visually pleasing, and always contained wonderful music to accentuate the theme and content. I will never forget the first time Mattie saw a Baby Einstein video (since this is a series, we practically owned each and every one of them!) he was transfixed on the TV screen. Which amazed us, because for the most part Mattie wasn't a TV, video, or electronic kid. My joke was that there was some sort of subliminal messages on the screen that Mattie was focusing on. Naturally there weren't, but if you could see his level of absorption, even you would wonder. What I particularly love about this picture is that it showed Mattie being Mattie. Mattie was a multitasker. He never sat still and was always engaged. Even while watching the video, he was going through a cabinet, pulling out things, and sorting through them.

Quote of the day: No one feels another's grief, no one understands another's joy. People imagine they can reach one another. In reality they only pass each other by. ~ Franz Schubert


Shubert's quote intrigues me, mainly because I am in that kind of mood tonight. A mood in which I feel as if it is me versus the rest of the world. This feeling of isolation or being different from everyone else unfortunately happens when grieving. How could it not? Because in all reality, though others try to understand and be supportive, at the end of the day it is only ME who is living with my thoughts and feelings. It is only me, and Peter of course, who have to live with the fact that we are childless, that our future is different than we expected, that the memories of pediatric cancer will remain with us forever, and that others around us can't possibly understand this true level of devastation. Which is certainly a good thing, because otherwise the world would be a very depressed place.

I have discovered that the whole topic of conversation regarding summer, summer plans and vacations, and camps can send me reeling. I am pretty sure I felt this way last year around this time too, but this year it seems even more pronounced. The interesting part about this is while I am listening to this dialogue, I can sense I am uneasy. But honestly it isn't until I remove myself from the conversation, do I understand my feelings behind this uneasiness. There are many feelings I associate with summer. Summer reminds me of the time Mattie was diagnosed with cancer (July of 2008), summer also reminds me of Mattie dying (since I basically learned Mattie's situation was terminal in August of 2009). So these two things alone make summer a down right horrific time of year. Then factor into this that summer is about family time, and as Peter eloquently said to me tonight, summer is a "painful reminder of what we no longer have." All of this is particularly horrible, but there is a third feeling associated with this topic. This topic of summer is a constant reminder that I AM DIFFERENT. I no longer relate to mom-type conversations and I no longer look forward to summer trips. In fact every trip just seems like something is missing.
 
Today is a Tuesday, and as such it marks the 75th week Mattie has been gone from our lives. As always, Mattie's oncologist and our friend, Kristen, writes to us every Tuesday. There was more to her message this week, but this is the only portion that is appropriate to share on the blog. Kristen wrote, "I am thinking of you both this Tuesday and everyday!"

Valentine's Day

Monday, February 14, 2011

Tonight's picture was taken in October of 2003. By this point Mattie was independently walking and as you can see was fascinated by our cat, Patches. In fact, what you can't see from this picture was the scene that took place right before Patches jumped up on our plant stand. Mattie had been chasing Patches around our home and Patches wanted relief. Which was why she jumped up on the plant stand to escape Mattie's reach. However, as Mattie grew taller, she learned that there really was no escaping his little hands. It took many, many months to teach Mattie how to treat Patches kindly. However, despite having her fur pulled, her tail pulled, and being chased, Patches NEVER scratched or took out her fear on Mattie. They eventually became good buddies. Though Patches is older now and a handful physically, I have a great deal of patience with her because she understood from the moment Mattie was born his level of importance in our home. 

Quote of the day: To rejoice in another's prosperity is to give content to your lot; to mitigate another's grief is to alleviate or dispel your own. ~ Tryon Edwards


The first thing I do every morning, before I even get out of bed, is check my blackberry. When Mattie had cancer and we were fighting for his life quite intensely, my blackberry became my link to the outside world. I learned during those 15 months never to go anywhere without it. I even slept with it near me. It was my version of a security blanket, and unfortunately that is one of the bad habits I have yet to give up. Perhaps in time, I will see it as less a part of me, but for now, my blackberry and chocolate are items I need daily. It is not a pretty day when either is missing from my life.

I received an email from my friend Tina today. Some of you may recall that Tina opened up her house for many of my friends in July of 2010 for my birthday. Tina invited me to go out to lunch and to also visit a chocolate store, called Artfully Chocolate in Del Ray, VA. The notion of exploring a chocolate store sounded very appealing and I appreciated the opportunity to get out, to chat, and to connect over chocolate.
One of the many things we spoke about was the major clean up project Peter and I have been enduring over the past three weeks. Tina shares my sentimental nature of holding onto meaningful items and therefore she understood immediately how difficult such a project is, but then factor into the equation Mattie's death, and it makes this whole task excruciating. At one point this weekend as I was sitting on the floor, going through Mattie's items, I basically said to Peter that I would not wish this task on anyone. There is something VERY wrong about disposing of your child's things. It just is unnatural and defies understanding. If Mattie can die before me, then in essence all the things I valued and which gave my life order and meaning no longer make sense. There are days I imagine I will see Mattie walk through my bedroom door and greet me in the morning and then there are days when I wonder if I was ever a mom and really had Mattie in my life?

I enjoyed walking with Tina and exploring shops on the avenue. Despite it being February, it felt like spring. We stopped for chocolate, which seemed like a wonderful thing to do on Valentine's day. I brought chocolate home and I am enjoying it while typing tonight. I think my next stop really has to be to a chocolate factory. I always wanted to take Mattie to such a factory, but his strong distaste for chocolate made that impossible. Mattie did not even like the smell of chocolate! I can safely say that chocolate was by far the biggest differences between us!

I spent the rest of the day reorganizing things at home and my new goal is to go through each and every closet. Three years of neglect have wrecked havoc on our lives. In many ways, cleaning up was necessary, but I also think cleaning up is busy work, and there are days and weeks where I just need to be busy.

To all our readers, we hope you had a good Valentine's Day. Know how much we continue to appreciate your visits to our blog and your support.

Sunday, February 13, 2011

Sunday, February 13, 2011

Tonight's picture was taken in October of 2003. This was one of many adventures Mattie had visiting a petting farm. As you can see here, Mattie wasn't sure whether or not he wanted to approach the cow, but over time Mattie began to love these experiences. Caring for, nurturing, and being respectful to animals are important to me and to Peter, and we wanted to expose Mattie to animals at an early age, so he shared in our interest. I can't think of a better way to learn about responsibility and love than through animals.


Quote of the day: Grief is the price we pay for love. ~ Queen Elizabeth II

Peter and I had the wonderful opportunity today to have brunch with Mattie's oncologist and our friend, Kristen. Kristen had a baby last May, and today we got to meet 10 month old Conor. Despite his cold, he was a real trooper throughout lunch and at one point Peter was entertaining Conor and I snapped a picture of them. Peter has a knack with children, and I have noticed they tend to just gravitate to him. Conor has his mother's eyes and as I was watching him, there were so many things that reminded me of Mattie at that age.

I am not sure how many families become friends with their child's oncologist, especially after the child in question dies, but for us and Kristen it was a natural progression. In fact, because Kristen and I have so much in common, our friendship was bound to happen. Again, here is yet another example, of a friend that has entered into my life because of Mattie. Though Mattie is no longer physically with me, the connections he established for me keep his spirit and memory alive.
After brunch, we returned home to do MORE cleaning. I am not sure that was a great idea, since we worked SO hard yesterday. It isn't only physically demanding work, it is EMOTIONALLY laden work. Every muscle and body part ached today, however, I was determined to continue on Mattie's room and also to attack our living and dining rooms. Though the downstairs of our home wasn't as chaotic as Mattie's room (thanks to Peter's efforts), things were still piled all over the place, and I have been finding the piles of things very depressing. So again, Peter and I worked for another three hours today. However, while I was working, I was feeling SO tired, overwhelmed, and physically sick. I tried to push through that feeling, but then developed an optical migraine and couldn't see out of my left eye. So that was the signal that I HAD TO STOP. We took a few pictures of Mattie's boxed creations today that I wanted to share with you.

This was Mattie's cruise boat. As you can see, Pinkie, the wooden character, was sunbathing on the top deck of the boat. What you need to know is that Pinkie was a very valuable therapeutic character for us. Mattie's art therapists and I, one day in clinic, played out a whole session with Pinkie. Actually we had MANY sessions over time with Pinkie. Mattie transferred a lot of his fears and anger into Pinkie's character, and this enabled us to see how he was feeling, and our responses to Pinkie during our play sessions were always empathetic to Pinkie's plight but also psychoeducational. As we tried to give Pinkie strategies for handling certain issues and fears. I will never forget Pinkie, which is why she is sitting on Mattie's chest of drawers in his room now.

This red box, was transformed by Mattie into a rocket ship. Notice he even put his initials on it! Inside the rocket, I found "Blue Boy." The counterpart to Pinkie. Blue Boy was the good and responsible character, and he now sits next to Pinkie on Mattie's chest of drawers.

One day in clinic Mattie had a boat race or competition with his buddies Brandon and Jocelyn. Mattie constructed this boat and as you can see the humility, Mattie had Jocelyn write on his boat, "Mattie's boat is better!" Notice the peacock feather as the boat's sail!











In this particular boat race, Mattie and Jocelyn teamed up against Brandon and Jocelyn's sister. Mattie named their boat, "Team Mattie and Jocelyn." Notice the person sitting in the center of the boat was made out of wire! Naturally Mattie won this boat race and I recall Toni (Brandon's mom) telling me that Mattie announced he did not like competiting against his best friend (Brandon).








I end tonight's posting with a message from my mom. My mom wrote, "I know what a difficult task it is to clean up what is left over from a precious life that is no longer. When grandma died, I left her room exactly the way it was for over three years and kept all her personal effects. It was only after a general remodeling that I tackled the project but I can still remember how painful it was to dispose of her things. Coming to terms with Mattie's past is a monumental feat and a traumatic upheaval to the senses and the mind but especially impacts the heart with blinding numbness. Clean-up had to be done for whether you like it or not, life does go on and you are forced to go along for the ride just because you are alive. You are on a grieving path, not one you would have chosen for yourself, with many unexpected twists and turns but you have wisely avoided maudlin self-pity and instead used your strength of character to build a legacy for Mattie, one that will live through the ages!"