Saturday, March 2, 2013

Saturday, March 2, 2013

Tonight's picture was taken in March of 2009. Mattie was home between treatments. In front of him was one of his Thomas train sets. I remember this set SO well. Mattie and I were shopping at Target one day (in our pre-cancer days) and he spied this set and wanted it. We brought it home and Mattie played with it non-stop and for years! When I found this picture tonight, it got me to pause because I did not remember playing with this set after Mattie was diagnosed with cancer. Obviously this photo confirmed that we did! All I can remember is when Mattie was a preschooler, I would sit for hours playing with these trains and wonder when I was going to get a break from PLAYING? The complexities of raising an only child is you are your child's built in play mate and I certainly did a ton of playing. I suppose looking back I could feel guilty for having the need for a break from playing, but in reality, despite feeling tired at times, I pushed through it and was always there for Mattie.


Quote of the day: Let me tell you this: if you meet a loner, no matter what they tell you, it's not because they enjoy solitude. It's because they have tried to blend into the world before, and people continue to disappoint them. ~ Jodi Picoult


I happen to love Picoult's books and when I came across her quote tonight, it resonated with me. I wouldn't characterize myself as a loner per se. I have always been an extrovert and do get my energy from those around me and through those interactions. Yet, I would have to say that Mattie's cancer and death makes it harder for me to "blend into the world." Or let's put it this way, I can blend in but it comes at a price.

Peter had to work all day today at his office, so I went with friends to a musical(The Wiz) which was being performed at Mattie's upper school campus. I love going to plays, especially musicals, so this was a good diversion for a day in which I could have spent by myself. I also appreciate seeing younger people taking an interest in the arts. I think every school should make performing in a play (in some capacity--on stage or behind the scenes) a mandatory experience. I can't think of a better way to spend one's free time than to see live theatre. Yet this is a dying art, when our younger generation seems to gravitate to electronic devices and non-expressive forms of entertainment. Which is why seeing all of these children and their families out today was wonderful to me. Yet going back to the nature of this quote, these observations of children and families are bittersweet for me. Maybe even more bittersweet when this occurs on Mattie's campus. A campus Peter and I should be a part of, but due to circumstances are not connected to anymore. Sometimes when I see parents with their children it makes me sad, it makes me see that my weekends do not look like theirs, and when the play ends they are rushing off to the next thing on their agenda. Yet my agenda is SO different, and this feeling different does breed ISOLATION and the desire to be a loner.

I enjoyed the dancing, staging, costumes, and scenery of the play. But I admit I am not a Wiz fan. I don't care for the music and to me the score isn't memorable. Yet the tale of The Wizard of Oz captures the hearts and minds of the young and old. I think when I was a child, I was captivated by the tornado and the notion that you could be transported to a magical land. As I got older, the magic of watching The Wizard of Oz was replaced or grounded more in reality. It is a story in which each character is incomplete and searching for what is missing in one's life. In search of becoming WHOLE again! Whether it be the scarecrow looking for a brain, the tinman a heart, or the lion, courage. They are on a quest together. It is through the journey, with the emphasis on journey and being TOGETHER, that they find the answers to what is missing was inside them all along.

It is my hope, or at least I wonder if it is possible, that one day I will see parents with children and feel okay by this sighting. That I can see a play at a high school and not feel disgusted that I will never see Mattie performing, and the biggest hope is that one day I will lose the feeling I have that no one around me understands this pervasive sense of isolation and loneliness that occurs when you lose a child to cancer. Somehow I don't see this happening unless I too am transported to the land of Oz!
 

Friday, March 1, 2013

Friday, March 1, 2013

Tonight's picture was taken in March of 2009. I remember this day like it was yesterday. You can see Linda, Mattie's childlife specialist, speaking to a group of people in the hospital hallway. It was a ribbon cutting ceremony for the childlife playroom, which was a crucial addition to the in-patient pediatric floor. When Mattie first entered the hospital in August of 2008, there was NO playroom. There was no place for the kids to gather to do activities, so when this room opened it, it was a God sent! But Linda knew Mattie VERY well, she gave him the opportunity to cut the ribbon during the ceremony which hung on the doorway to the playroom. Clearly, Mattie was TOTALLY focused on the door and the ribbon, with scissors in hand! That was Mattie.... a boy on a mission!


Quote of the day: A friendship can weather most things and thrive in thin soil; but it needs a little mulch of letters and phone calls and small, silly presents every so often - just to save it from drying out completely. ~ Pam Brown


Most of my friends live in Northern Virginia and yet I live in Washington, DC. To me commuting back and forth is not a big deal. After all I have been doing it since 2005, when Mattie went to preschool in Alexandria, VA. The car practically can drive to Alexandria without my guidance, which speaks to my frequency of trips.

A month of so ago, my friend Tina mentioned she would be happy to come to the city to visit me. I was so happy by her willingness to do this, that I decided instead of us going out to lunch, that I would have a luncheon at my home. Since Tina's birthday was this week, it made the perfect excuse to have a birthday luncheon. I can't remember the last time I cooked for friends and had them over to visit me! I can safely say it has been years, certainly before Mattie got sick in 2008. In many ways, since Mattie's death I live in isolation, and when Tina said she would come to the city, I took this opportunity to do something different.

At first I was apprehensive about preparing a lunch, but then my lifetime friend Karen piped up and said..... "what are you worried about!? You cook meals for people ALL the time, it just may not be at your home." I stopped to think about what she was saying, and she was right! Karen gave me the right perspective. Cooking is very tied to my maternal grandmother. She is the one who taught me to cook at a very young age. So to me, cooking is an experience and a labor of love.

Before my friends arrived, I snapped a picture of our table set up.

 

This photo wasn't my idea. I was requested to take a picture of all the foods on a plate! Featured were a hazelnut crusted rockfish with a tropical fruit salsa, risotto, and a salad with pears and candied pecans.

 

Karen asked me for a cake picture.... so here is the Cake Roll I made. I got the recipe for this cake from one of mom's cookbooks while I was in Los Angeles. Inside the cake is cream cheese, strawberries, and coconut.

 

 

Ann's Aunt Helen was visiting from Massachusetts. So Helen was kind enough today to snap a group shot! Also Helen coaxed Patches to eat some fish with us. Typically in the past, Patches was scared of visitors. But today, she was intrigued and very social! It was a girls' luncheon, and clearly she considers herself one of the girls!

Pictured from left to right are Junko, Ann, Vicki and seated was the lady of honor, Tina.

Wednesday, February 28, 2013

Wednesday, February 28, 2013

Tonight's picture was taken in March of 2009. There was a story behind this photo.... NATURALLY!!! In many ways Mattie had old fashioned interests. He preferred imaginative play, playing with cars, trains, planes, Legos, and creating all sorts of things! Mattie had little to NO interest in video games or playing glued to an electronic device. But one particular day, Mattie was in the childlife playroom with Katie (his wonderful nurse) and Peter. Katie, Peter, and Mattie had a Wii competition and it involved doing yoga positions. The irony was despite Mattie having three prosthetic limbs he could balance himself better than others. Katie was amazed that she snapped this photo of him to show me!


Quote of the day: To live is so startling it leaves little time for anything else. ~ Emily Dickinson


It is that time of year in which I need to start to begin filing permits with the City of Alexandria in order for us to host our Foundation Walk. There are two rounds of permits and I completed the first round before I left for the conference in Huntington Beach. When I returned I received an email from the director of special events. She wanted to set up a meeting for me to go before a board of Alexandria Police, Fire, and Paramedics. I knew that wasn't a good sign and that meant that the City of Alexandria had issues with my desire to close down neighborhood streets in order to have an awareness walk. Typically our Walks have been self-contained on Mattie's school campus. They have been that way since 2009. But many of our supporters have expressed an interest in a 5k or fun run/walk. So eventually this will be a concept we will migrate to, but it won't be this year. Shutting down streets is VERY costly because it requires that police, fire, and paramedics are on hand, and in essence we would be paying their salaries during such an event. There is no way I can see spending thousands of dollars on this, money that should be going to helping children and their families with cancer.

So today I had an hour long discussion with the director of permits for special events. Now that I agreed not to shut down streets, I have made it through the first hurdle of permits. Apparently only LARGER organizations have the ability to shut down streets because of the cost! So now onto the second round of permits. But I admit this leaves me having to revamp the plans I had in mind for this year. I can't say I am happy about this at all, and when tired my creativity isn't as forthcoming.

As for Patches, she is refusing her cat food now. She is more interested in people food. Which is absolutely novel for her. However, she won't eat something more than once, nor will she eat it from a plate. She prefers for me to feed her a piece at a time from my hand. Which I don't mind as long as she keeps on eating and drinking. I find looking at her right eye painful and I continue to assess her for pain. She isn't acting like she is in pain, other than her lack of appetite. Watching Patches drift away is very hard for us. She is my day time companion and has been through so much with us. I will never forget when Mattie was a baby. He did a lot of crying at all hours of the day and night. On the rare occasion when Mattie was sleeping, Patches would emerge from hiding and look at me, not for attention interestingly enough, she seemed to know I was wiped out, but I almost felt she came out to simply be there and check on me. She is my ultimate Nurse Patches!

Wednesday, February 27, 2013

Wednesday, February 27, 2013

Tonight's picture was taken in March of 2009. Mattie was in the childlife playroom at the Hospital. Based on what Mattie was doing, I know exactly what day of the week this photo was taken. It had to be a FRIDAY, because Mattie was participating in a chemistry experiment. Every Friday the Georgetown Chemistry Club came to the floor to do something interesting with the kids. The president of this Club was fabulous and he related to Mattie. Mattie also related to Chris! On this particular day, Chris was showing the kids how to make ice cream using dry ice and as you can see Mattie (though neutropenic, his white blood count was VERY low) was right in the mix of things despite not feeling well and having to wear a mask. Doing and creating were two words I always associated with Mattie!


Quote of the day: When love and skill work together, expect a masterpiece. ~ John Ruskin

I began my day with this sighting! Patches was curled up on Mattie's bed. Not just anywhere, but in the middle of Sunshine, Mattie stuffed animal albino boa constrictor. Patches spends a lot of time in Mattie's room, now that Mattie is gone.

I have had a long day of Walk items and writing February's Foundation newsletter, therefore as we are approaching midnight, I just am not in the writing mood. I am quite aware of the fact that Patches is not doing well, and she just can't seem to eat. We are playing this out one day at a time, but this is another hard reality to accept. I have lost many cats in my lifetime (Minx, Cinnamon, Rusty, Whiskers, Allie, and Tiglet), but none of my cats had been with me for 17 years. Nor had any of these cats survived living with us while raising a baby, a toddler, and then a child with cancer. Patches has always been a part of our married life, so to us she is a significant part of our family.

Tuesday, February 26, 2013

 

Tuesday, February 26, 2013 -- Mattie died 181 weeks ago today.

Tonight's picture was taken in September of 2008. At that point, Mattie was a month into treatment. Clearly most of his hair had fallen out yet it was before any of his surgeries. Despite how horrible chemotherapy was, surgeries for Mattie were much worse. They were worse because in the process of trying to save Mattie's life he lost the ability to do all the things he loved to do. Which was to be independent. To walk, run, feed himself, go to the bathroom on his own, and to look like all the other kids. I posted this photo tonight of my mom, myself, and Mattie with Jenny. I had the wonderful opportunity to connect with Jenny today. Jenny was one of Mattie's art therapists and she was not only extremely competent and a great therapist but she is a wonderfully compassionate and insightful individual. Jenny moved to Colorado shortly after Mattie died and she was in town for just today. Despite the fact that we never actually saw each other physically, we had a wonderful time reconnecting! Jenny is one of the people I most definitely miss seeing on a regular basis. In fact, it was through Jenny that I met Linda (Mattie's childlife specialist). Both of these women kept me sane on some very challenging days.


Quote of the day: We are like butterflies who flutter for a day and think it is forever. ~ Carl Sagan


This afternoon, I sent Jenny (Mattie's art therapist) an email because I had a request from a student, who wanted to interview an art therapist. The first art therapist who came to my mind was Jenny. Jenny has left a lasting impression on me. While I was emailing Jenny, she was emailing and thinking of me at the same time. What are the chances of this?! I don't know, but I call it fate! We had a good old time chatting today, sharing reflections, and understanding the ramifications of having and caring for a child with cancer, and of course witnessing a child die.  

As the Walk for the Foundation approaches my stress level heightens tremendously. It is very difficult knowing that I have to raise a certain level of money for the Foundation in order to keep our work going. Keep in mind I am NOT a professional fundraiser, I am not in the field of business, and the list can go on about what I am not. I am a counselor by training and honestly the skills the Foundation sometimes requires goes beyond my capabilities. But like any good mom, I push myself and try to rise to the occasion. After all, the Foundation is my baby. Yet as Peter will attest, I have a short fuse in the spring, and not because this is my intention, but it my overall level of stress that I am trying to manage.

Later in the day, I also had our first post-think tank conference call. Pulling together 25 professionals at the California conference was excellent, but now the hard work begins. Each of us on the call was assigned an essential element to be incorporated into the standard of care. Yet each of these elements needs to be researched which means that a comprehensive literature review of articles has to be conducted. So I find myself feeling like I am right back in graduate school, and for those of you who knew my dissertation chair, you have to know that doing a literature review for her was NO easy feat. She strove for perfection within herself and demanded no less from her students. So much so, that it took me years to do my literature review. YEARS! She didn't value simple electronic searches, she wanted you to also do it the old fashioned way which meant going into the library and doing manual searches through the stacks. So I have been conditioned on the proper way to conduct a literature review and I have to say that the notion of such a review now on top of planning the Walk sounds sickening and daunting. The review is due within one month's time, so I need to factor this into my schedule!

 

Meanwhile in the midst of my day, I have had Patches looping around me. She wouldn't eat anything I gave her. Not even a bite. She was getting agitated because she was hungry, but nothing would go down. Until this evening! When I served dinner, she seemed intrigued by my cutlets. So she hopped up on our table. Typically in her well days she knew better than to jump on the table. I did not tolerate this! But now that she is dying, I am very lax. She joined us and I gave her cut up chicken. She ate more chicken than Peter tonight. Peter snapped a picture of Patches eating with us, we are a threesome at dinner these days. Mattie would have gotten a kick out of this! However, I did not want Peter to capture Patches' face on the camera, since I would prefer people to remember her beautiful face before her eye was attacked by cancer. 

Monday, February 25, 2013

 

Monday, February 25, 2013

Tonight's picture was taken in March of 2009. Mattie was in the clinic that day, getting ready for another hospital admission. That particular day Mattie wanted a large baked pretzel, as you can see in the photo. Mattie got cravings for certain foods and snacks and literally we were lucky enough to have a whole team of people ready to fulfill these needs and requests. They understood that it was impossible for me to leave Mattie's side. It seems ironic that under the worst of circumstances we also experienced the best that life has to offer. We saw hundreds of people rise to the occasion, to put a child's needs before their own, and we personally witnessed all our communities come together to support Mattie and us. The impact of Mattie's cancer on our lives is ever present and remains within us.


Quote of the day: It is only with the heart that one can see rightly. What is essential is invisible to the eye. ~ Antioine de Saint-Exupery


This evening, Peter and I caught up with each other about our day. Peter had the opportunity to go out to lunch today with a friend. These two fellows see each other periodically, and working around the corner from each other helps. I think it is very hard for men to develop the same emotional bonds and connections as women. It just is frowned upon in our society and not considered socially acceptable. That maybe true, but that doesn't mean men do not need support or have the desire to relate on a deeper level. As Peter was talking to me about today's lunch, I found that I was so moved by what I was hearing that I landed up crying. It is a true gift when I hear a friend say to Peter that he can pick up the phone and call whenever Peter is having a bad day. Each time these fellows get together, they talk business, but they can also talk about how things are going. Not just going on the surface, but how Peter and I are dealing with Mattie's death. These are not easy subject matters to bring up, which is why I admire this individual for never forgetting and having the courage to talk about Mattie, and for giving Peter the space to do so as well!  

This afternoon, I went to the grocery store. I went with a list and had my own agenda. While shopping, I noticed a woman in a motorized wheelchair. I made note of her, but then continued shopping. While I was in the produce section, she came up to me and started talking to me about the weight and price of lettuce. Somehow the lettuce was just the entree into a much longer conversation. She and I spoke for a half an hour. She wanted to share how she spends her days, her skills on coupons, saving money at the grocery store, and also spoke about how she calls companies like Hershey's, Mars, Celestial Seasonings, and requests free sample items and coupons. Naturally this was a person who needed to talk and needed an outlet. I have to say, I learned something about coupons after this conversation! I certainly had a host of other things to do with my time, but since Mattie's death, I do slow down more to listen to those around me. Before we parted, she wanted me to know that she thought I was a very nice and kind person and how much she enjoyed our conversation. My gift may have been time, but her gift was equally as special. At the end of the day, I think we are all looking for someone to value us, to be heard, understood, and given feedback that our presence matters.
 

Sunday, February 24, 2013

Sunday, February 24, 2013

Tonight's picture was taken in February of 2009. This was what some of Mattie's physical therapy sessions looked like. Mattie always had back up players in all his sessions. It was like having your own personal cheerleaders present to help motivate Mattie. This may seem extreme or perhaps unbelievable that Mattie would have received all this attention. But in all reality, Mattie had three out of his four limbs operated on. The kind of pain Mattie experienced, none of us can truly imagine. Also the recovery we expected Mattie to make was really quite super human. Those closest to Mattie, who worked with him on a regular basis, were aware of the odds against him, and also understood that more support and encouragement was needed in our case to help us manage the day to day journey. Which is why Mattie's childlife specialist, art therapists, and physical therapist are  professionals never to be forgotten.


Quote of the day: By learning you will teach; by teaching you will understand. ~ Latin Proverb

It was a beautiful weather day in Los Angeles. There wasn't a cloud in the sky. I made the long journey back to DC. I feel as if I spent the entire day at either an airport or on a plane. Thankfully I am home, safe, and in one piece. As soon as I walked in the door tonight, I was greeted by Patches. She still has a spring in her step but she is clearly a mess. We can hardly see her eye now, and it looks painful upon observation. Yet she isn't acting like she is in pain. But we are keeping a close eye on her. I am glad she spent the week with Peter! I know their great love for each other.

I can tell both Peter and Patches are happy to have me back! I am signing off for tonight because I am wiped out from a day of traveling, filled with turbulence.
 

Saturday, February 23, 2013

Saturday, February 23, 2013

Tonight's picture was taken in February of 2009. Mattie's friends created Valentine's for him and also gave him this HUGE lollipop. Mattie was intrigued by the lollipop and he was trying to show me in this photo that the candy was roughly the size of his head!


Quote of the day: Maybe if you can’t get somebody out of your head, they’re supposed to be there. ~ Unknown


I love tonight's quote and I believe it is SO true! Mattie is firmly implanted in my head and will always be there and should be there! This morning, I walked the track in my parent's neighborhood. My mom and I have done this six out of the seven days I have been here. Walking in the sunshine is a wonderful way to start the day. I also find walking and moving helps my nerve pain. It is when I stop moving do I notice the numbness and pain! While at the track, we were surrounded by boys practicing with their little league teams! I watched moms sitting around and observing the sport, I noticed dads out in the field coaching and throwing balls back and forth to their boys, and of course the whole scene made me reflect. These are all experiences Peter and I will never have with Mattie. That may sound like a trite observation but it is observations like this that are our daily reality.

While at the track, I also noticed a beautiful monarch butterfly flying around. Mind you I have been at this track almost everyday this week and never saw a butterfly. But today in the midst of all the little league kids, a sign from Mattie presented itself. I do not think this was by coincidence. I want to think that Mattie was on this field with me today.

My parents and I saw a play last night entitled, Stepping out, and a play today entitled, I'll be back before midnight. Two very different plays, but both focused upon the complexities of human dynamics. Stepping out was about a group of eight adults who register to take a tap class. The group had a range of dancing abilities but part of the comedy was watching this group learning to dance. In the midst of learning to dance, we got a glimpse into the lives of each of the dancers and what truly motivated them to come to the class. Some came to escape their husbands, some to build confidence in themselves, and others to make a friend and become invested in something for themselves. The way the life stories interweaved was beautiful and to see a group of eight go from sloppy dancers to a coordinated team at the end was worth the price of admission. It made you want to get up and dance. Today's play was a psychological thriller, whose main character had just been released from a mental institution. She was recovering from depression, anxiety, and panic attacks. Needless to say, upon release her husband took her to a remote house in the country to recuperate. Yet his motives are anything but pure and to add insult to injury the husband invites his sister to visit the house. His recovering wife and sister do not get along and the sister is one of the main reasons that contributed to the wife's breakdown in the first place. It was a suspenseful play which had all of us in the audience trying to predict what would happen next and who was going to get killed in the end.

I am signing off from Los Angeles. Tomorrow I head back to Washington, DC. So the next posting will be from home! I say good-bye to the sun, grass, trees, flowers, bunnies, and of course the LA Cappuccinos!