Tuesday, December 13, 2011

Tuesday, December 13, 2011 -- Mattie died 118 weeks ago today.

Tonight's picture was taken in June of 2008, at Mattie's end of the year kindergarten party. Next to Mattie were his two close buddies, Charlotte and Campbell. This was a special threesome and as Charlotte would tell me often, when it was time for her to go to college, she said that Mattie and Campbell would be coming with her and they would all be roommates. If only that was possible! To me this picture captures a happy time and also illustrates the bond among three people. In so many ways, I think this threesome navigated their way through their first year of full time school together and they relied upon each other. Ironically, like the children bonded together, so did the mothers. Ellen (Charlotte's mom) and Christine (Campbell's mom) became my close friends and our friendship remains despite the fact that our children are no longer physically connected.

Quote of the day: The most called upon prerequisite of a friend is an accessible ear. ~ Maya Angelou

I think Maya Angelou's quote is quite meaningful and very insightful. Yet listening skills are VERY hard to come by and do not always come naturally to people. Throughout my time as an educator, I can safely say I taught hundreds and hundreds of students, and one thing that was always VERY challenging to teach was the art of listening to another person. Active listening requires great discipline, skills, a quick mind, and an ability to think scientifically and creatively. After all, as you take information in, you need to be able to categorize it, make sense out of it, ask questions, and if you are a therapist, you also need to be able to process this information and at the same time use this information to develop a rapport and connection with your client. Listening to another person requires energy, commitment, and a true respect for the person talking before you.

On many levels today, I experienced friendship. Though we hadn't planned to get together today, I had the opportunity to have lunch with my friend Tina. Tina and I became friends after Mattie died. In fact, she may be my first friend I have established after his death, since many of my current friends are connected with me in some way through Mattie. Tina and I are not connected to each other by children, which in a way is a blessing. It is a blessing because this is not what bonds us. What connects us is mutual interests, similar tastes and styles, and we enjoy the art of distraction and fun. Some how after interacting with Tina, I always feel appreciated as a person and that goes a long way in my book. Since dealing with Mattie's death makes me feel insecure at certain times, it helps to have a friend to verbalize the things I sometimes need to hear.

Today marks the 118 week of Mattie's death. It seems rather symbolic in a way that on this day, I would return to the Hospital. This evening, myself and several other parent advisory board members at the Hospital contributed food to a potluck. We brought this food to the pediatric units so that the inpatient families could have a nice dinner. The food was SO appreciated and I had the wonderful opportunity to talk with several parents whose children have been hospitalized long term. In the midst of my visit I also had the wonderful opportunity to see Tricia (one of Mattie's outstanding HEM/ONC nurses and was one of the nurses who helped us on the morning Mattie died), Sarah Marshall (our Angel of Mercy, who helped us for FIVE intense hours as Mattie was dying) and Debbi (our Sedation Nurse Angel, who helped us through every procedure and scan and also helped Tricia with Mattie's body the morning of his death). Somehow it is almost eerie that I would see these three particular women tonight, women who hold a very high place in my mind and heart. 

Debbi and I had the opportunity to chat tonight and as always Debbi helped normalize so many of the feelings I have. Debbi lived through our nightmare with us and therefore, I do not have to explain much for her to get up to speed with how I am feeling immediately. I appreciate her accessible ear, an ear that I relied on many days and nights while in the hospital. Debbi let me know that "not a day goes by" when she doesn't think about me, Peter, and Mattie. Naturally with the beautiful full moon we had recently, there were many friends thinking of my Mattie Moon. As Debbi was speaking to me, what began playing in my head was the song from the Broadway show, Merrily we roll along entitled, Not a day goes by. I attached a link to the song that was sang by one of my Broadway favorites, Bernadette Peters......................... http://www.youtube.com/watch?v=TSb4DJGZqzY&feature=fvwrel

I think the moral of tonight's posting is that a listening ear and a kind word goes a long way. In fact, I would go as far as to say that the kind words you use with your friends and family will not only be remembered but can brighten up even the worst of days.

Monday, December 12, 2011

Monday, December 12, 2011

Tonight's picture was taken in April of 2008. Mattie received a birthday gift from our former neighbors who moved to New York City. When our neighbors moved away this was very difficult for us. We got along very well with them. They appreciated Mattie and Mattie loved them and their cats. Surrounding the birthday gift they sent Mattie, was brown paper. On the paper was all sorts of messages to Mattie. Some of the messages were in English and others were in Farsi. In addition, some of the messages were actual lyrics from songs! Mattie LOVED this paper so much, that he took it and taped it to the back of his bedroom door. Where it remains today! This picture captured Mattie when he was six years old! 


Quote of the day: In the darkest hour the soul is replenished and given strength to continue and endure. ~ H.W. Chosa


My dad sent Peter and I this quote a week ago. When we looked at it we were both taken aback by the word "replenished." I think this caught our attention because we do not view any one thing as really replenishing our soul after the death of Mattie. I would say however, that there are interactions that I have that help me feel alive and connected to the world. I am not sure these interactions replenish the soul, but they are definitely needed to give me strength to continue and endure.

For Peter and I, Christmas can actually be a very dark holiday. Filled with missed opportunities, loneliness, and the intensity of loss. But these feelings are not just inside of us, they are also all around us. We no longer decorate, exchange Christmas gifts with friends and family, or fill out Christmas cards. Our holiday cards in the past ALWAYS featured Mattie on the front cover, and without Mattie, they do not seem worth writing and mailing. Instead we prefer to just send out a written holiday message to our Mattie Miracle supporters.

Since 2008, my source of safety in many ways became our Team Mattie Coordinator, Ann. There is a great deal of emotion wrapped up in this friendship. Today, just like I have done for the past two years, I spent the day at Ann's house helping her wrap gifts for Christmas. It is ironic, in 2009, my first year helping with the production, I most likely was going through the motions and was too stunned from Mattie's death to process anything. Last year, I must admit I again felt numb to wrappings, bows, and gifts. Today however was a bit different. Certainly I could have sat there and assessed how different our worlds are from one another, and at times I guess a part of me did. But that really wasn't what I was focusing upon. What I deduced was by me helping Ann, in a way I was helping myself. It was helping me be a part of the Christmas process. Because someone is going to feel happy seeing and opening up our wrappings and bows. I have always loved giving gifts more than receiving them, and in some way, it is hard not to be involved in the Christmas card and gift exchanges any more. In many ways, it just seems like a very visible reminder that Peter and I are different. Ann received Christmas cards in the mail today, and I got to see some of them. Again, this is something Peter and I rarely receive now. Which is a night and day difference from when Mattie was alive. When Mattie was in our lives, we would received about 150 or more Christmas cards a year. It was almost too hard to keep up. This is a very tangible difference in our holidays, because the death of Mattie hasn't only impacted us it has impacted others as well and how they connect with us.

Sunday, December 11, 2011

Sunday, December 11, 2011


Tonight's picture was taken in May of 2008 in Mattie's kindergarten class. I came into Mattie's class three times that year to do various projects. The first project was decorating homemade gingerbread cookies, the second project was telling the children a story about my transatlantic journey as a child and introducing them to aspects of Italy and the Italian shipping lines, and the third project was a coconut project. Peter and I both came into class that day. Peter's parents each spring would mail us a coconut (literally with the husk on it, like you would find on the ground at the base of a coconut tree) from Florida. The coconut did not come in a box. Instead, Peter's parents would use a marker and write Mattie's address right on the coconut husk and attach stamps to the husk. We brought the coconut to class that way so the children could see it. Peter snapped a picture of me talking to the children about the wonders of coconuts. I showed them pictures of the different trees, talked with them about the medicinal properties of coconut water, and also discussed the various different things you could build from the husk. Peter then took over and took the kids outside and with an electric saw, hand saw, and hammer, showed the children how DIFFICULT it was to open a fresh coconut. They were fascinated and mesmerized. Peter did this show at Mattie's preschool, so this was his second go around at this production. After the show, the children got to eat homemade coconut bread that I made. I have a feeling the coconut project may be an experience that several of the children may remember even today. However, in typical Mattie fashion, when I visited the classroom, he came to sit right by my side as you can see here.

Quote of the day: Every action in our lives touches on some chord that will vibrate in eternity. ~ Edwin Hubble Chapin

This morning as I was sitting in our kitchen, I could hear the birds outside our window. This fall, we placed a bird feeder right outside our kitchen window, so I could see the birds while working in there. My laptop is on the kitchen table and for me this little area is where I do all my work. Seeing and hearing the birds are important to me. As you can see the sparrows have found our new feeder and visit me daily!



I started the day with an ocular migraine, which is NEVER a good way to start the day. I can count on one hand how many ocular migraines I have had in my lifetime. However, each time I get one, the feeling is unnerving. It is unsettling because I lose partial vision in usually my right eye. It is as if I am seeing lightning rods going through my eye. In the past, I freaked out about this. But today I just sat down and closed my eyes until the lightning passed and went away. However, as is typical the lightning is ALWAYS followed by an intense headache. Today's headache did not disappoint.

Later this afternoon, Peter and I met Ann and her daughters and attended a concert called The Living Christmas Tree. I actually attended this production in 2009 with Ann's children. Naturally in December of 2009, only 3 months after Mattie's death I did not know if I was coming or going. Now two years later, I am more stable, and yet feel much more than I did in 2009. Each year, somewhere in this production they sing a song about loss, recognizing that for some of us Christmas is challenging because it makes us reflect on who we have lost in our lives. A loss that changes the whole significance and meaning of the holiday. Tonight's song that captured my attention was entitled "Christmas in Heaven." It talks about how we are earth wonder what Christmas must be like in heaven for our loved ones. It is a frightening thought at times to accept the reality of my loss, and even more daunting to wonder where Mattie is now. My concept of heaven has been altered after Mattie's battle and sometimes I wonder if heaven even exists, or is this something we have come to accept in the Christian faith, because the notion of the alternative is too grave? I never questioned my faith before Mattie's cancer, but now almost anything is up for grabs. Christmas for me is well reflected in this song as well as the song they sang in 2009, Christmas makes me cry. I attached both of them to tonight's posting.

Christmas in Heaven

http://www.youtube.com/watch?v=YVE7H2QUD-U

On our way home from the concert, we were struck by a glorious Mattie Moon over the Lincoln Memorial! It is hard to accept that Mattie wasn't with us tonight. I sat between Ann and Abbie (her youngest daughter). It was wonderful to watch the concert through Abbie's eyes. Everything seemed to glitter, to be exciting, and some of her commentary throughout the performance was a riot. Yet this energy is no longer something that surrounds me and this brings about great sadness for me.

I would like to end tonight's posting with what I wrote back on the blog in 2009. Sometimes I find it important to reflect upon past submissions, to see how I reacted to a similar situation. In this case, I am looking at how I reacted to the Living Christmas Tree in 2009 versus 2011. Though time has past, the feelings remain VERY fresh and VERY similar.

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December 11, 2009

I had another busy social day today, in which I had lunch with Ann, spent time with Ann's mom, and then went with Ann's children to a Christmas play entitled, The Living Christmas Tree. I had never seen this production before, and for those of you not familiar with it, it is sponsored by a local church in Alexandria, VA. The scenery for the play is VERY creative, because on the stage is a huge Christmas tree that is formed by a choir on risers. In addition to the choir shaped tree, there is a light show going on while the choir is singing. I am not doing the play justice, but it is very clever, very creative, and very moving. In addition to the music, there is also a story line acted out by 8 or more people. The story had a good moral message about the importance of opening your heart to your family, sharing what you have with others, and thinking beyond yourself at this time of year. The play was standing room only and the church was filled with families. There was one particular song that got to me. It did for various reasons, first I had never heard it before, but second and more importantly because the opening line of the song is "I think of loved ones who have passed away, and I pray they are resting in a better place!" I almost felt as if this song was sung just for me, as if Mattie was communicating to me directly tonight. I attached a link to the song, in case you would like to hear it. But I do agree, Christmas can make people cry, and I understand this more this year than ever before.

Sometimes Christmas Makes Me Cry
http://www.youtube.com/watch?v=-mLIHOqA2G8&feature=related


It was interesting while this very serious song was being performed, Ann's son, Michael, and Tanja's daughter, Katharina were sitting next to me. Neither one of them made a peep through this song or even flinched. I couldn't help but feel as if on some level this song made an impression on them, especially as they were sitting next to me. Since I perceive these children as both very sensitive and intuitive, their attention to this song, made me take notice.

Once the performance was over, my friend Christine (who came with us, but sat in a different part of the church with her daughter, Livi, and Abigail, Ann's youngest daughter) and I chatted about the production. I mentioned the song, "Sometimes Christmas Makes Me Cry." Christine immediately responded and said as soon as she heard this song, she thought about Mattie and I. In fact, she told me she felt Mattie's presence at the church tonight. Interesting that Christine and I felt the exact same way about this! Christine told me she is in awe of my strength because she doesn't know how I manage day to day, much less have the courage to attend a Christmas play, surrounded by children. Christine's comments made an impression on me, and I was grateful she said them, because many times I do not give myself credit for the things I manage to accomplish in a day, and I assure you, some days it takes great faith, strength, and courage to just get out of bed.

After the performance was over, we all walked to Christine's car. I walked with Abigail, Michael, and Katharina. Abigail was having a ball watching how cold I was (because it was frigid out), while she perceived herself as feeling toasty warm. We had a good time arguing back and forth about the weather, and while doing this, Katharina and I were in total agreement. It was just plain freezing. Katharina and I walked through the parking lot with arms around each other, in hopes of keeping each other warm. Walking with Katharina made me realize how much I miss the closeness and love you can only get from a child. For that moment, it seemed magical as we connected on an emotional level that went beyond the physical temperature in the air.

After the play, though I was not expecting this, Ann invited me to her community's holiday party. This was therefore my second party I attended, back to back, and as I enter these social situations, I am now extremely cautious. However, I noticed that I knew several women at this party, which is ironic. I don't live in Ann's neighborhood, yet through Ann, I have these connections as well. I guess I learned something about myself tonight and that is, despite being grief stricken, I am still the same social creature I was before my life was completely altered. I had a nice time talking and laughing with Ann's friends, and two of them want me to make centerpieces for their table. I told Ann I would actually be willing to do this as a fundraising opportunity for Mattie's Foundation. I was very happy to hear how much these women liked what I did for Ann's table, and though I wouldn't have even entertained making more candied trees, I keep thinking about what my friend Karen said to me. Which was to use my creativity in some positive way, and I can't think of a more positive way then to raise money for the Mattie Miracle Cancer Foundation!

After the party, I went back to Ann's house and we talked for several hours. Clearly Ann and I spend a great deal of time together and in this process the strength and power of our relationship grows exponentially. The past two days, have forced me socially out of my comfort zone, and yet despite my fears, I managed and connected with others. Of course, I always know that if I need to step out of these social moments, Ann will not only understand but support me through the process.
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Saturday, December 10, 2011

Saturday, December 10, 2011

Tonight's picture was taken in May of 2008 in Mattie's kindergarten classroom. That particular day was Grandparent's Day and my parents came from California to participate in that occasion and to support Mattie. I decided to volunteer that day on campus to help serve breakfast to grandparents. This was an experience I will never forget. Breakfast was served under a large tent on the campus field. It was a lovely event and one of my jobs that morning was to go around serving coffee from table to table. Mattie's school counselor came up to me at the event and told me she had been watching me and couldn't get over how much coffee I was able to serve and at the same time chat and connect with the grandparents. I joked with her because I said, after all wasn't this part of our (we are both trained counselors) job description..... servicing people!? Because I volunteered that morning this allowed me to escort my parents around campus and go with them into Mattie's classroom. My mom took this picture of Mattie and I together. On that day, I am sure I debated taking that morning off as my teaching semester was coming to an end and I was up to my ears with grading. But now I can safely say I am SO happy I made the time to attend that day, because I would never have imagined that this would be my first and last grandparents day on that campus.

Quote of the day: There is no tragedy in life like the death of a child. Things never get back to the way they were. ~ Dwight D. Eisenhower


In the past, I posted on the blog a different Eisenhower quote regarding the death of his son. Eisenhower's son died at the age of three from Scarlet Fever, and this loss was very profound for the president and his wife. In fact, I find many of the statements Eisenhower made on his son's death very meaningful, deeply moving, and for those of us in this special club, these words hit home. They hit home because he doesn't sugar coat the feeling, he was open, honest, and candid. I repeat what Eisenhower stated..... THINGS NEVER GET BACK TO THE WAY THEY WERE! For parents who lost a child, life is permanently changed. We may function, accomplish things, and live in the world. But living for us is quite different than it was before.

I spent a portion of my morning today designing a candy cane tree for my friend Tina. Tina admires my trees. I made my first candy cane tree EVER in December of 2009, three months after Mattie died. Ann wanted a unique center piece for her dining room table (or let's put it this way, she wanted to keep me busy and engaged with the world so she asked me to take this on), so I gave this some thought and began making candied trees at Christmas time. Ann has five of my trees. Each of her trees have a different kind of holiday candy on them. The candy cane trees are a labor of love however because the canes can easily break as you unwrap them and of course they are very sticky. But Tina's friendship and kindness have meant a lot to me this year and if my trees make her happy, I was compelled to make her one. So here is the finished product!

Peter and I went out to lunch today at a local restaurant. I am SO thrilled that a whole new complex has been developed in Foggy Bottom. Because with this new construction came many new and good restaurants. Which were VERY needed in our area. I love walking, but today was frigid, and the cold is greatly impacting my ability to breath. I can now go no where without my inhaler, and it is my hope that in time this goes away. Any case, we had a working lunch of talking through the next steps for the Foundation and our upcoming events. It is quite ironic however that I made a candy cane tree today, I am hearing about Christmas trees going up and being decorated by friends, and naturally see decorations in stores and restaurants all around me. Yet some how for me, I am trapped, not feeling or allowing myself to feel Christmas.

Friday, December 9, 2011

Friday, December 9, 2011

Tonight's picture was taken in August of 2008. Mattie is pictured with Abbie, Ann's youngest child. Mattie and Abbie attended the same preschool and also were in the same kindergarten class together. Certainly these children knew each other and may have actually interacted with one another on occasion in school, but it was when Mattie developed cancer that I actually had the opportunity to get to know Abbie. Ann took on the role of our Team Mattie coordinator and as an adult she made this decision consciously. However, since Abbie was only six at the time, I do not think she sat down and gave it much thought about the importance of being Mattie's friend. Instead, I think something within her just took over, and guided her interactions with Mattie. Abbie was a blend of humor, activity, loyalty, and a fierce advocate to Mattie. I can still remember Mattie attended a birthday party in December of 2008. He was bald and in a wheelchair. A few children, who did not attend Mattie's school or were familiar with his situation started to tease Mattie and make fun of how he had to move around on the floor. Abbie, like myself, heard this, and before I could step in and say something. Abbie put this other child in his place. Needless to say, there was no more teasing that day. Abbie stayed close to Mattie throughout the entire party and made sure he felt included. But most importantly what this showed me was this was the making of a true friend. A friendship that was cut short too early. When these two were together, they were zany, creative, and at times simply gross. They seemed to appreciate bugs and creating mushy and horrid looking substances that would freak the rest of us out. In Abbie's company, Mattie could be funny, lively, and simply six years old.


Quote of the day: In the final analysis, there is no other solution to a man's problems but the day's honest work, the day's honest decisions, the day's generous utterance, and the day's good deed. ~ Claire Booth Luce

I am beginning to feel better, but still have had moments today in which I needed my inhalers. It is amazing to me how such a mist can make me feel better immediately. My day started early with a board of professional counseling meeting. How I have been feeling the past two weeks affected me today. I was ticky or down right humorous in the meeting. I suppose providing comic relief is a good thing right before the holidays.  

Later today I went to visit Ann's mom, Mary. While I was with Mary, a lady walked into Mary's room. I looked up and there was Edy! I LOVE Edy. Edy was one of Mary's nursing aides. However in July, Edy left the facility. Over time, I had gotten to know Edy and she knew about Mattie. Edy treated Mary with great respect and was simply a nurturing and caring soul. Edy is not replaceable, and her concern and loyalty to her patients are evident. After all, in her free time, she came back to her former place of employment to visit her patients. Mary gave Edy a huge smile when she entered the room. We were both thrilled to see her and I told Edy she made our Christmas. Because I have always wondered how Edy was doing and how her new job was going.

When Edy left Mary's facility in July, I gave her a gift. I felt that close to her, and today, Edy reminded me of the gift and told me how much it meant to her and her husband. What I had forgotten, she remembered. Edy in a way lives out the Mattie Miracle mission. I did not really give that thought until I began chatting with my friend Tanja tonight. Edy makes you feel special. She relates to you as a human being and gets to know aspects of your life. It is through this personal connection, that you can't help but feel better in her company and presence. Which reminds me once again, addressing a patient's psychosocial needs is not only a nice thing to do, it is a vital thing to do to ensure one's physical health. Let's personalize this.... think about yourself when you feel sick. If someone is meeting your needs, understands your likes and dislikes, and truly takes an interest in you.... aren't you more likely to comply with their requests to take medicine, rest, and participate in therapy (physical, occupational, mental health)? Experiencing kindness or a good deed (as tonight's quote so implies) can go a long way for all of us.

After Edy left, I began reading one of my favorite short stories to Mary. The story is called The Christmas Box. It is appropriate for this time of year, but it is also meaningful to both of us, since the main character in the book loses a child. This loss has clouded the character's life and how she lives and interacts with people. It is a beautiful and touching story. I read Mary the first chapter tonight and it is my hope with each visit, I can read another chapter until we finish the story. I read this story for the first time before Mattie was even diagnosed with cancer. But as I was reading it today, I found that I once again got absorbed in the story and wanted to just keep reading. Though Mary wasn't able to verbalize her thoughts, I could tell she was listening, and was engaged. When I interact with Mary, I try to always think of what I would want someone to do for me if I were in her position. I don't always get it right but Mary is always gracious with whatever I try.

Thursday, December 8, 2011

Thursday, December 8, 2011

Tonight's picture was taken in July of 2008. About two days after Mattie was diagnosed with cancer. I recall how it felt those initial days, and perhaps I felt the need to post this picture tonight, because how I felt back then is how I am feeling today. Back then I experienced clinical anxiety for the first time. I was so agitated, I couldn't sleep, eat, or really concentrate on anything. There were times I thought my heart was going to jump right out of my body! The challenging part back then however, was not to worry Mattie with my feelings and emotions. So though I felt all these things, I plugged along and did not address my own issues, because Mattie's were our priority. Also I am sure some of you are asking why there were Christmas lights behind us when it was July? That is because Mattie wanted to decorate our deck for Christmas. I am not sure why, but he wanted to see lights and frankly it was a great idea since we all needed a distraction. So we set up some of our lights and Peter snapped a picture of us. July 2008 is a time that will always be etched in my mind.


Quote of the day: Your Compass ~ Robert Longley
The stations of the the compass
We know them all by name
Each of them is different
But also much the same
Together there's direction
Or four as the case may be
Where will each one journey
I guess we'll wait and see
North is cool and focused
South is warm and bright
East welcomes the morning
And West does chase the night
Possibilities are endless
The journey now does start
The compass that you carry
Is the one within your heart


It is interesting that the quote/poem I posted tonight relates to listening to your heart, because your heart is your true compass in life. It is an interesting notion. For the past two weeks, though I haven't written about this, I haven't been feeling well. Initially I attributed my feelings to stress or nervousness. But as the symptoms persisted and became more pronounced throughout this past week, I decided to see my doctor today. I felt as if my heart was aching, and so finally I had to listen to my heart and do something about it.

Naturally I am two years out from Mattie's cancer battle, but like I indicated in tonight's picture description, I continue with my own battle. Many of my issues associated with grief do come out for me in physical symptoms, most likely because I channel a great deal of emotion inside. After a while, that emotion has to go somewhere. In addition, I honestly believe that living under INTENSE stress and anxiety while Mattie battled cancer has wrecked havoc on my life. What a normal individual would look at as a nuance, my brain and body interprets that same nuance in a much more dramatic way. It is as if a hyper alert button has been stitched on in my body from 2008 and I no longer react in a typical format.

Like in July of 2008, I have been dealing with sleepless nights, heaviness in my chest, and sometimes shortness of breath. I have been balancing many different things lately and with Christmas coming, I assumed I was just feeling anxious. I also assumed that once some of the pressures lightened up, so would these feelings. But they haven't, they have gotten worse. Since I am scheduled to go out of town next weekend, I felt as if I couldn't do this without seeing the doctor and determining there wasn't a medical issue associated with these symptoms.

This morning I got up early so I could be the first one calling into the doctor's office for an appointment. After advocating for Mattie, I learned all the tricks about phone systems and getting access to an actual doctor. When I called the office this morning, the gatekeeper (or receptionist) told me there was no way I could see my doctor today because she was booked solid. She then made me an appointment with the nurse practitioner. I naturally love nurses, but to me this issue required the attention of a doctor and also someone who understands my recent history. So I told the receptionist that my doctor told me that if I should ever want to see her, that I should come in at lunch time. The receptionist said NO to that. With each "no" I received, I became more persistent. I told the receptionist I wanted her to send an electronic message to my doctor. She actually typed in the message while I was on the phone with her. Needless to say, within 30 minutes my doctor called back and made time to see me this afternoon. One of the many things I learned while caring for Mattie is that doctors need gatekeepers. They need gatekeepers because if left unchecked they would most likely self destruct. So many doctors really do want to help and they want to interact with their patients. But naturally due to time constraints and insurance and billing issues, this isn't possible. I have found that if you can get access to a doctor's ear and plead your case, most doctors won't turn you down for an appointment. It is a matter of working through and passed the gatekeeper to get access to the physician.

I can safely say that I made the right decision to advocate to see my physician today. Because the beauty of her is she knows my health history. It is by knowing my history she is able to make a solid diagnosis. One the of reasons I love my internist is she is thorough, listens well, and takes an aggressive stance on issues presented to her. A part of me wondered whether all my symptoms were in my head and that I had a full blown case of clinical anxiety. However, as a clinician, I knew my symptoms made no sense. I had the feelings constantly, they weren't short lived throughout the day or triggered by anything in particular. I learned today that my assessment was correct, I instead have restrictive airway disease, or in other words asthma. By not being fully able to breathe, this was taxing my body and made me feel as if my heart was racing. In essence my body was developing an anxiety response to the lack of oxygen. She ran several tests on me, all of which I was familiar with from Mattie's battle...... breathing tests, EKGs, and nebulizer treatments. It was from the in-office nebulizer treatment that I finally could feel the tightness and constriction in my chest dissipate. So hopefully this will be the start to me feeling better soon.  

Wednesday, December 7, 2011

Wednesday, December 7, 2011

Tonight's picture was taken in August of 2008. Coach Dave came over to visit Mattie and brought him all sorts of items from the school's football team. Including a signed team football! There was a lot going on in this picture, but this was our first real interaction with Coach Dave (since Dave was an educator at the upper school and Mattie was at the elementary school), who from that moment on became an integral person in our lives and a crucial part of Team Mattie!

Quote of the day: What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal. ~ Albert Pike


For over a year now many of our Foundation supporters who work for the federal government have asked me whether Mattie Miracle is a designated charity of the Combined Federal Campaign (CFC) program. My answer has always been NO, but today, I took the first steps to achieving this goal.

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Here is some information on the CFC...............................
The Combined Federal Campaign is the only authorized workplace charitable giving drive for employees in the Federal workplace. CFCNCA is the local campaign for Federal employees in the Washington Metropolitan Area and is the largest workplace giving campaign in the world. Through the collective contributions of nearly 150,000 civilian and military Federal employees, the campaign generated more than $67 million in pledges for participating local, national and international charities in 2010. Federal employees in our region seek to generate $67.2 during the 2011 campaign.

The purpose of the CFC is to support and promote philanthropy through a program that is employee-focused, cost-efficient, and effective in providing all Federal employees the opportunity to improve the quality of life for all.

There are more than 4,000 approved charities eligible to receive donations through the CFCNCA. This list spans organizations that provide human services, health care, medical research, disaster relief, housing, youth development and much, much more.  http://www.cfcnca.org/
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Before you can apply to become a designated National Capital Area charity, you first must attend a workshop. The workshop educates the applicant about the regulations (since this is overseen by the Office of Personnel Management), the application process, and the benefits of joining such a program. It was a very productive 90 minute workshop in which we all had the opportunity to ask questions and I found it interesting to learn about the other non-profits in the area applying for this designation.

I am not feeling well this evening, so I am ending tonight's posting with a thoughtful video I received from my friend Charlie. The title of the video is CHANGE! The beauty of this story is it is told WITHOUT words. They aren't needed. Certainly change could be translated literally to mean pennies, quarters, and dimes. But after seeing the video, I have determined that change in this case means much more. Sometimes motivators for change come in different shapes, sizes, and not necessarily who or where we would expect it to be coming from. It also shows me that our simple acts of kindness can impact another person's day in immeasurable ways.

http://www.flickspire.com/m/Share_This/changeforadollar?lsid=161f9da9b7692b6854ca64548e80ab61

Tuesday, December 6, 2011

Tuesday, December 6, 2011 -- Mattie died 117 weeks ago today.

Tonight's picture was taken in August of 2008. As you can see Mattie was walking our resident jack russell terrier, JJ. Mattie loved JJ. JJ and Mattie practically grew up together and they had a strong connection. Even until this day, JJ will come to our deck in the hopes of finding his buddy Mattie to play with. When Mattie died, JJ understood on some level that something wasn't right, and though he is a dog, JJ suffered from depression for several weeks. I am so happy Mattie had these happy times with JJ, and that Mattie got to experience the joys and love that only a dog can give a person. 


Quote of the day: Be kind, for everyone you meet is fighting a great battle. ~ Attributed to Philo of Alexandria

Tonight's quote seems appropriate for the experience I had today. I have lived in DC for over 16 years of my life and have never had the opportunity to go onto the National Institutes of Health campus. Which is huge! But today I was invited on campus to meet Dr. Lori Wiener. I have heard a great deal about Lori who is the coordinator of the pediatric psychosocial research program in the Pediatric Oncology Branch of the National Cancer Institute (one of the institutes at NIH). Fortunately Lori prepared me for my journey onto campus. The facility is huge, confusing, overwhelming, and very secure (you literally have to get out of your car for a car inspection, and you and everything you have with you goes through a metal detector). Needless to say, I got lost twice, but finally got on the right track to head to the Children's Inn (located on NIH's campus).

The Children's Inn is an amazing place. It is like walking into a hotel/resort/retreat center. Lori has been instrumental in the creation of the Inn and meeting her in person was a true honor. She clearly is a devoted researcher and clinician, who makes it her business to find ways to normalize a very unnatural experience for children and their families. As I sat in the Inn talking to Lori I realized just like tonight's quote aptly points out everyone around me is fighting a great battle. At the Inn it is most likely a battle with a physical or mental illness, and naturally when illness hits a family, the whole family unit is impacted greatly.

I want to share some information with you about Children's Inn, because I found it a very special place (if a child has to be sick, then having access to such a facility while away from home seems to be a God sent).

Children's Inn History............................ In the early 1980's, Dr. Philip Pizzo, then Chief of Pediatrics at the National Cancer Institute, noticed that families often congregated in the waiting room after treatment instead of returning to the isolation of hotel rooms. He envisioned a supportive place where families could stay without enduring the hardships and expense of living in a hotel. His vision was to build a convenient place with a home like environment where families could stay together for free while their children were undergoing treatment at the National Institutes of Health. The NIH donated two acres of land and Merck and Co., Inc. provided $3.7 million to build this "place like home." A dedicated group of congressional spouses formed The Friends of The Children's Inn and raised $2 million to furnish the residence. Dr. Pizzo, the congressional spouses, and several key individuals and organizations worked together to make this dream a reality and The Children's Inn at NIH opened its doors in June of 1990.

Info about Children's Inn....................The Children's Inn at NIH is "a place like home" for 59 families from across the country and around the world, seeking help for their children's medical conditions and hope for a cure. More than 1,400 families stay each year. More than 10,000 children and their families, from 50 states and over 80 countries, have stayed at the The Children's Inn since opening in 1990. All children participate in research studies at the National Institutes of Health - the nation's premier biomedical research center. The Inn continues to enhance programs and services for residents that fulfill our mission of keeping the family together during a child's illness and providing a healing environment through mutual support.  http://www.childrensinn.org/site/c.kkI1KiMXIvF/b.2001915/k.9D50/Home_Page_Content.htm

Though I came to NIH today to meet Lori and to learn about her work, she took a great interest in not only the Foundation, but in me as a parent who lost a child to cancer. She gave me many opportunities to share my perspective and feelings and it is my hope that I can participate in her bereavement study, because I think I have a great deal to say about the topic and talking about this is definitely therapeutic. I do not have these therapeutic outlets in my life, and as I told Lori, a part of the reason for this is also me. I am not the best therapeutic candidate at times. Lori did mention to me that parents who seem to survive such a traumatic loss do better when they have an outlet, particularly an outlet that gives them purpose and meaningful. As she quickly surmised the Foundation is this outlet for Peter and I. I enjoyed chatting with Lori. We talked for two hours and I know she will be instrumental to our psychosocial symposium which we are planning in March. It is through Lori that I became connected to several other researchers who will also be working with us on the symposium. So I take it one step at a time, and with each step learn more and make more wonderful and meaningful connections.

I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "Lately, I find that I read the blog in stages, on Tuesdays and usually one day near the end of the week. You share so much that I find it easier to comprehend all that is going on with you, the Foundation, and those around you in a larger context. It helps me to appreciate just how involved you are with people and your impact on each of our lives. My writing today will work back from a few days ago when you first posted "The Genius Test." When I first looked at it, and realized that it was the kid's version, it reminded me how each of us has personal challenges. Because the first one didn't come easily to me,and I was going out that day, I never returned to try it. My first attempt was not a shining example for me and I knew that you would supply the answers the following day. In fact, I forgot about it until this morning. What I learned was there are times when each of us gives up too easily on a challenge because we might be afraid of failing or think it too difficult. As you know, in some areas of our work, this might be considered a "High Be Perfect" personality. Nothing or no one can do it all perfectly and this was a gentle reminder to keep trying, no matter what. Mattie is a wonderful example of this philosophy as he often 'pushed the envelope' and tried to be upbeat, and genuine during his treatment. He is and was a great mentor to all of us! I had missed the piece about HoyaDreams until today. What a great idea! I so appreciate when you share these pairings of groups with special interests as it reconfirms the goodness of others. The media usually focuses on the troubles and horrors of our day to day existence. Your blog reflects the interaction, impressions, and importance of reaching out and moving beyond one's own personal space. Thanks to the entire Brown family who is like the Energizer Bunny and keeps giving and giving in so many ways. Peter and you are going to be able to do a mini marathon soon. Walking 8 miles back and forth to the Verizon Center was great! As a Bostonian, maybe Peter could work a "miracle" and encourage the Boston Marathon to select Mattie Miracle Foundation as a partner. Wouldn't that be something? I LOVED Alan Alda's quote: "Your assumptions are your windows on the world. Scrub them off once in awhile, or the light won't come in." I attest to our belief as educators that learning is a life long practice. We learn much of our social behaviors before we are 5, and the rest changes as we enter the larger society. It is important for all of us to realize that few "truths" are static. As each of us reaches a new stage of life, we are able to scrub our windows. I want to pass this quote along, not to point a finger at some people, just to give some hope for changes that they have been contemplating and may be questioning whether they can throw away old beliefs in favor of new ones. I hope I'm not being judgmental here as I realize everyone needs to move at their own pace. Finally, I love visiting Mattie's tree with you, in virtual time. It doesn't surprise me that Mattie's tree has doubled in size. Although Mattie left this earth a little more than two years ago, his energy and spirit have more than doubled in many of our eyes. Look at what Peter and you and the Mattie Miracle Foundation have done in this brief time. I think your ornaments are a great addition to the tree and I believe that many at the school visit the tree and notice how it has changed. His tree is a TWINKLING TREE and will give off light and hope for many years to come. I believe it is Mattie's way of saying hello to everyone."

Monday, December 5, 2011

Monday, December 5, 2011

Tonight's picture was taken in August of 2008. Mattie had begun his chemotherapy treatments, and was home between dosages. That particular day Mattie's "girlfriend," Charlotte came over to visit him. Mattie loved Charlotte and in kindergarten he made it clear that this was the girl he was going to marry. So much so that when he went for his dental cleaning that kindergarten year, and got to pick out a prize for a good cleaning, he selected a ring. The ring was an "engagement" ring, which he gave to Charlotte one day as I was driving them both to a play date. One of the things I loved about how Mattie and Charlotte interacted with each other, was the simple fact that they brought out the best in one another. Mattie had a way of getting Charlotte to laugh, and Charlotte's laugh is quite contagious to hear. While Mattie was battling cancer, Charlotte always came to visit him. Either in the hospital or at home. Charlotte saw it all, which had to be hard for a child so young. Yet she dealt with seeing the IVs, Mattie's moods, and Mattie being physically depleted. On those days she would sit with him or even curl up with him in his hospital bed to watch a movie. But Charlotte never came to visit empty handed. As this picture shows, that day she came to our home she brought Mattie one of her favorite Scooby Doo games. Mattie and Charlotte played it for quite some time and it became a favorite for all of us to play. Losing Mattie also means losing the connection with his friends. They continue to grow and develop, but I am no longer a part of watching and participating in that process. Somehow that only exacerbates the loss.

Quote of the day: One doesn't discover new lands without consenting to lose sight of shore for a very long time. ~ Andre Gide

Tonight's quote seems to be eluding to grief. Because for me, losing Mattie has definitely affected my ability to see the shore, the horizon, and to have overall perspective at times. I suppose through the absolute feeling of helplessness and isolation, I will one day discover a new land or life perspective. The jury is still out on this for me.

I had the wonderful opportunity today to meet my good friend Junko in the city. Junko works where I live, which is convenient for me. A few weeks ago, Peter and I tried a new neighborhood restaurant which I loved and I wanted to introduce it to Junko. As always we had a great time chatting and catching up. Junko is good for me because she really wants to know how I am doing and feeling and today I shared with her some of the physical issues I have been contending with. She got me to reflect on how things that I do which are supposed to bring about happiness and life direction, should not be causing me more heartache and stress. I absorbed what she was saying and I do agree. Yet I do find that post-Mattie's cancer battle I am not able to regulate my feelings and emotions as well as I used to, and instead do land up internalizing them, which makes me ill. In fact, I have learned a great deal about the impact of stress and death on one's physical state. The toll on my body from Mattie's death is huge and as time passes, the full extent of the damage becomes more apparent. I feel fortunate that I have friends like Junko in my life who can understand this without judgment. 

I would like to end tonight's posting with a message I received from my friend Tina on Saturday night. Tina went out of town this past weekend with one of her daughters. However, she did not venture on this journey without her computer. Why? Because she wanted to be able to read the blog and find out how our big day at the Verizon Center went. I was truly very touched and honored by her kindness. But when she explained her feelings and put them into words, to me it was as if she sent me an electronic gift. Words are powerful and they can convey powerful feelings, connections, and importance. To me shared feelings between friends is vital for the relationship's longevity and growth. Tina wrote, "I like to end the day reading the blog. I feel connected to you and it helps me keep focused on what is important. Almost like a nightly prayer. It is wonderful to see the good you are doing and it reminds me to count my blessings."

Sunday, December 4, 2011

Sunday, December 4, 2011

Tonight's picture was taken in August of 2008. There was a lot going on in this picture. Mattie's cousins, aunt, and uncle came to visit him in the hospital. Instead of all of us being couped up in a tiny room, Miki, Mattie's amazing HEM/ONC nurse allowed us to go outside. Which was three floors down from the pediatric unit. Though Miki was working in the unit, she would periodically come outside to check on Mattie and his IV fluids. These are the types of nurses Mattie had. They are all angels, and understood how difficult it was for an active six year old to battle cancer.  A cancer which we all knew was aggressive and would have profound ramifications on all of us (Mattie, Peter and I, and all of Mattie's close care providers). Miki appreciated Mattie, his creativity, and his intelligence. But she also appreciated Peter and I and told me on many occasions how she admired our family cohesiveness.... and believe me cancer can test even the best of relationships. This photo captures a happy moment in the hospital, and at the time we couldn't have possibly imagined how much worse things were going to get.

Quote of the day: There is always music amongst the trees in the garden, but our hearts must be very quiet to hear it. ~ Minnie Aumonier

Tonight's quote speaks to me. It is meaningful especially since Peter and I went to Mattie's school today to visit his oak tree. This tree was planted in May of 2010 by Mattie's class in honor of their missing classmate. Last year, we placed a  beautiful sounding wind chime on Mattie's tree. So in a quiet and windy moment, you can definitely hear "music amongst" this tree's branches!

Last Christmas, I went out of town and I forgot to hang an ornament on Mattie's tree. I felt badly about that. However, Erica, a Mattie Miracle supporter and mom I met through Mattie's preschool, saved the day. While I was in California, Erica emailed me a picture of a butterfly ornament she had placed on her tree. She wanted me to know that she purposefully bought and put a butterfly ornament on her tree to remember Mattie. I happened to tell her that I loved her butterfly and that I forgot to put an ornament on Mattie's tree. Next thing I knew, Erica mobilized forces, drove to Ann's house and delivered another butterfly ornament, so that Mattie would be remembered at Christmas time on his tree. Ann then went to campus and placed the butterfly on Mattie's tree for us. It is amazing that a year later the butterfly is still on the tree and looking beautiful. 

I went out this week and purchased ornaments for Mattie's tree. Peter got on a ladder today and placed two of the bigger ornaments closer to the top of the tree. If you look closely at this picture, you will see a Red Poinsettia ornament on the left hand side of this picture, almost at the 9 o'clock position and a lovely Gold Star ornament at almost the 3 o'clock position. In 2010, Mattie's tree was about my height, but in a year's time, it has almost doubled in size!

If you look closely between the beautiful red leaves, you will see the Butterfly ornament that Erica gave us. The butterfly is gold and red, and has purple spots. It still is shining on the tree!

What I love about this picture is it captures both the cello-wrap butterflies I created for Mattie's tree in September (for the second anniversary of his death) and the red pine cone ornaments we hung today in honor of Christmas. It is a rather sad reality that while others are getting ready for Christmas break, going shopping for their children, and decorating for Christmas, Peter and I are placing ornaments on a memorial tree for a child who is no longer with us. While others are living in the present, we are living in the past.

Mattie's tree is a twinkling tree! It shimmers and shines in the light. It glitters when the sun shines onto the wind chime, the cello-wrap butterflies, and now the ornaments. It sparkles, just like Mattie sparkled. But the question is how many people will notice these new additions? I am sure for many who did not know Mattie, this appears to be just an oak tree on campus. But honestly if you approach this tree with a quiet heart there is no telling what you will hear and see.