Happy Birthday Peter!

Saturday, November 13, 2010

Tonight's picture was taken on November 6, 2008. Mattie was excited about Peter's birthday and decided to prepare for it early. What you need to keep in mind is on November 12, 2008, a day before Peter's birthday, Mattie had massive surgery. Mattie had two limb salvaging surgeries and one bone graft to remove a total of three tumors. This surgery was about 12 hours long! Since I did not think Mattie would be able to function the day after his surgery, I encouraged him to celebrate Peter's birthday a week early. So as you can see in this picture, Mattie created a model magic birthday cake for Peter. Peter had put in a full day at work that day, and then came to spend the night in the hospital with us. Which he did for over a year. I assure you if you think rest and sleep are possible in a hospital, I suggest you check into one for a night. The ironic part about hospitals is they are toxic, toxic to recovery and frankly to one's psychological health. You are living in a two by four of a room, sleeping on a chair, having hospital staff coming in and out of the room at all hours of the night, machines beeping and buzzing LOUDLY, and don't get me started about sharing a bathroom with the room next door. Actually when you think of the stresses we lived under for over a year, it becomes overwhelming clear why it is difficult to re-integrate back into society. Receiving this birthday cake meant a lot to Peter, and this model magic cake sits on Peter's bureau where we both view it each and every day.


A Happy Birthday Dad Poem (I know this poem captures the sentiments Mattie felt about Peter): Best Dad by Joanna Fuchs


Happy birthday to the best dad I know,
A father I love and respect,
A dad who fulfills all his duties
To teach, to guide, to protect.
If everyone had such a father,
A really good dad like mine,
The world would be so much better,
It would look like God’s own design.

Though Peter did not want to celebrate his birthday today, I felt compelled to acknowledge the day in a special way. I took him to the Four Seasons Hotel to have a massage. Going to the Four Seasons is a complete experience, because the staff and the whole facility make it enjoyable and memorable. I was introduced to this spa by my good friend, Junko. She took me there twice, and it left an impression on me. Peter would never treat himself to a massage but if I made an appointment for both of us, he would go. Mind you Peter loves massages, much more than I do. So I knew this would be something he would like, and also something he needed. We both feel stress and sadness, but these feelings exist in parts of our body that aren't always visible to those we interact with. None the less, I found that my stress was VERY visible to my therapist today. I have the aches to prove it!

Before we had massages, we spent time in a steam room. Frankly the trip to the Four Seasons is worth it to me just for the steam room. I thrive in 80 plus degrees with high humidity. Add the smell of eucalyptus to the steam, and I am in heaven. Peter has always referred to me as a hot house plant, and as the weather is getting colder, I miss our summer heat and humidity. So this was a treat for me today. They treated Peter very well at the spa. He enjoyed the massage and they even gave him a huge happy birthday fruit platter. Peter and I had two very different massage experiences. His was relaxing (thankfully!), and mine felt like I went to visit a chiropractor. My arms and neck were manipulated in ways today that are too painful to describe. The therapist said she hasn't seen knots this bad in a long time. Wonderful, I am off the chart, and remember her benchmark is already high based on her clientele in the Washington, DC area. Throughout the session, she was trying to guess my occupation and just what caused my stress and my body to be this contorted! Sometimes I tell people about Mattie, but I just did not feel like getting into it today. So instead, I let her guess what my issues are. Of course she did not come close. She deduced that I spend a lot of time driving in a car all day (with my hands raised up, which would cause my shoulders to scrunch up), with a phone balanced on my left shoulder rather than holding it in my hand (which I NEVER DO!),  as well as sitting at a desk typing at a computer. One thing was abundantly clear from this session, and that is grieving is stressful. It has taken a massive toll on my body as well as Peter's. I guess I knew that on some level, but it doesn't register with me until I have an outsider working with me and looking at me absolutely shocked.

Peter and I had a nice lunch together as well today and chatted about all sorts of things. One thing we did touch upon was Sunday's Remembrance Ceremony at The Georgetown University Hospital. This ceremony acknowledges all the children who died at the Hospital. We went last year and we both spoke before all the attendees. This year Peter doesn't want to speak, and two weeks ago the notion of going sounded fine to me. Now as it is upon us, I feel uncertain about going. On one hand I want to acknowledge Mattie and tell people about him, and then on the other hand, I am not sure I want to share myself in this way. I am sure that sounds funny, since I do this each and every day on the blog. As we head into Sunday, I am not sure how we will feel about this ceremony, and more importantly I will be evaluating whether there is merit for us to do this each year.

Later today, I went to visit Mary (Ann's mom). Mary requested pizza and pears for dinner. So I did not disappoint. Before heading to Mary though, I stopped by to see my friend Tanja. Tanja made homemade chicken soup and she wanted Mary to have some, as well as some freshly baked cookies. Needless to say, Mary had a wonderful dinner. Mary and I spent a good portion of the evening chatting and I also did her nails. Each night before I leave Mary asks me whether she should wait up for Ann. Our usual routine is to do an Ann countdown, and I reminded Mary tonight that she only has ONE more day to go, and then Ann will be home. Mary asked me tonight if she should be worried about Ann or the kids...... and my answer was NO! My standard line with Mary is.... let me do the worrying. If there really is something to worry about, I will be the first person to let her know. She likes that response, and her come back line to me is typically...... you always tell me the truth. As my care for Mary is slowly coming to a close, I find that these moments we shared together this week only furthers our friendship and understanding for each other.

Friday, November 12, 2010

Friday, November 12, 2010

Tonight's picture was taken in the Fall of 2005 in Margaret's classroom. Margaret captured this moment in time. Peter and I love this picture because it shows the strong willed and focused side of Mattie. If he was determined to do something, then watch out. Because one way or another it was going to happen. In the beginning I was timid about giving Mattie sharp objects to hold and cut with. However, what I noticed about Mattie early on was he had good fine motor abilities. As you can see, Mattie went to town on this pumpkin. He even had pumpkin on his face! This is one of my favorite Fall pictures.


Quote of the day: Because he lived, there is more love in the world than there would have been without him. And for him, that was the reason above all others for the gift of life. ~ Martin Buber

Once a month, as the chair of the board of professional counseling in the District of Columbia, I preside over our meetings. Today was a packed agenda, mainly because we had an open forum for members of the community to come before us and dialogue and ask questions about the new regulations we just passed regarding the practice of addiction counselors. The meeting started at 9am and I did not leave before 2:30pm. By 2:30pm, I was brain dead and nothing I was reading was making sense anymore. However, despite the intensity and length of time, the staff for the board are incredible people. They are bright, dedicated, and are also humorous. I have served on this board for almost 7 years, and this is one of the professional leadership positions I loved right from the start. Even after Mattie's death, I still find this position stimulating, challenging, and take safe guarding the practice of counseling in the District seriously. I honestly can't say that my feelings have remained the same about much else in my life since Mattie's death, so this does say something about this board and the role.

Throughout the day, I exchanged messages with Mary's care companion, and I knew that Mary had some food requests for my visit tonight. So after the meeting, I went to get the things Mary needed, came home and checked on Peter, who wasn't feeling well, and then ran back out to spend time with Mary. Peter will be fine, but needs to rest before this becomes a full blown something.

Mary was wide awake when I arrived and we chatted for hours. We spoke to her cousin Helen, because Mary really wanted an update about her town in Massachusetts. Mary loved hearing about the news and we talked quite a bit after the phone call was over about some of the things Helen shared with us. As I was talking to Mary tonight, her room mate was a bit agitated and swore she saw a live chicken in the room. She jumped up from her bed and was chasing the imaginary chicken around the room. Naturally I realize my new friend has severe cognitive limitations due to her disease, but honestly when Mary and I looked at each other we couldn't help but burst out in laughter. Sometimes you just have to laugh at life's situations, and though we were NOT laughing at our friend, we most certainly were laughing at the notion that a chicken was in the room. It was our fun for the evening, and laughter can be very powerful medicine.

As we head into the weekend, tomorrow is Peter's birthday. Despite his desire not to celebrate it, I just can't let that happen. So I have plans for him. However, it is yet another bittersweet weekend for us, because on Sunday the Georgetown University Hospital is hosting its annual Remembrance Day. This is a ceremony in honor of all the children who died at the Hospital. We attended this event last year, and it was a very emotional day for us. I am well aware that last year at this time I was quite numb, now I feel things much more, so I have no idea what Sunday will hold for us, or why I felt compelled to sign Peter and I up again to say a few words. Somehow I feel compelled in these public forums to share Mattie's memory with others.

I received this youtube link from three people so far this week. So I know when I receive things in threes, I feel compelled to share it. The video link features....... "The Philadelphia Affiliate of Susan G. Komen for the Cure, teaming up with over 130 NFL Alumni Philadelphia Chapter Cheerleaders and UnitedHealthcare of Pennsylvania, invite the world to help "Team Ra-Ras Kick Breast Cancer." To encourage viewers to share the video with others and increase breast cancer awareness, UnitedHealthcare will donate ten cents ($.10) per view to The Philadelphia Affiliate of Susan G. Komen for the Cure up to a maximum donation of $100,000."

http://www.youtube.com/user/KomenPhilly?feature=mhsn#p/a/u/0/cfRSDbV8Adw

Veteran's Day 2010

Thursday, November 11, 2010

Tonight's picture was taken in September 2005, on Mattie's very first day of preschool. I remember I was a nervous wreck leaving Mattie at school. He was clinging to me and I felt guilty for leaving him for three hours. If I did not have a good feeling about Margaret (Mattie's teacher), then I can assure you I most likely wouldn't have left the parking lot. But somehow I trusted Margaret with Mattie. As you can see within his very first day of preschool, he gravitated to clay and creating something. That year, Margaret put all the pictures of the children in the class on the front of the classroom door. The picture that greeted us each day on the door, was this very picture you see tonight. I remember seeing it day in and day out, and I honestly never thought in my wildest imagination that five years later, all I would have are the pictures!

Poem in Honor of Veteran's Day: The Uniform


It's not just in the uniform
That everyone can see
It's more in the simple dream
Of what America should be
Where people sleep in comfort
Without the thought of fear
Because someone in uniform
Stands ready, poised and near
To defend the constitution
And preserve our way of life
Standing watch in times of peace
And ready for times of strife
You may not see them every day
Those of honor, in green and blue
But they are there to fight and die
To preserve the dream for you

 
Before I begin tonight's posting, I feel it is important to acknowledge the significance of the day, Veteran's Day. In recognition and remembrance of all our veteran's and military personnel who have and continue to serve our Country each day, we thank you. Without these selfless and heroic individuals, we would not have the freedoms that we some times take for granted on any given day. May we never forget.
 
I had lunch today with Tina. Tina is one of Ann's neighbors and we became friends after Mattie's death. Many of my faithful readers may remember that Tina hosted a birthday party for me in July at her house. Tina has a very lovable dog, Max, who I have gotten to know and on occasion when she sends me a Max in action photo, it makes me laugh and smile. Animals can be wonderful therapy some times, because you won't find a better listener to your problems!
 
Tina introduced me to a new restaurant today and I had the delightful opportunity to have lunch with her youngest daughter and her daughter's friend. These girls are in 4th and 5th grades, and I found them SO well behaved. They were polite, respectful, could entertain themselves, as well as dialogue with adults beautifully. What I admired about these two girls is they enjoyed talking to each other, about all sorts of things. The art of communication is something that is slowly dwindling in the younger generations, but being a part of this interchange today gave me great hope. We chatted about all sorts of things, and I am finding I am trying to relearn the art of being a friend and existing in the living world again. Once you experienced cancer and the death of a child, it is extremely hard to re-integrate back into the world, and some days I do it better than others. I am happy I got out today and had the chance to get to know Tina better.
 
I spent several hours with Mary (Ann's mom). I was so happy to see Mary's eyes open when I entered her room. She seemed tired, but as soon as I sat down on her bed, we started talking and literally talked for two hours straight. Though Mary was sleeping through my visit yesterday, she knew I was there. Especially since I reorganized furniture. She knows I have no problem moving things around, and has watched me do it on previous occasions. She missed the show yesterday, but her roommate found me absolutely fascinating. Mary and I talked about all sorts of things. However, what I find so intriguing about Mary is that she says things to me, totally unsolicited, but basically at a time when I need to hear them. Mary told me the following....... she said that she worries about me because I carry and live with a very heavy weight on my shoulders, the death of Mattie. She went on to tell me that not everyone understands this weight, and what they don't understand is that it doesn't go away. She told me how her husband handled her son's death, and how that was different from how she dealt with this loss. This was a lot of content to process, but she continued. She said even with this heavy weight, I helped care for her husband, her daughter, and now her. She told me she doesn't know how I do this, and she also said that I am a very special friend to Ann and that Ann is lucky to have me in her life. She wanted me to know that I am appreciated. After she spoke, all I could say was that her words meant a great deal to me and coming from her, I was honored. Mary's response was, "I thought so!"  
 
Mary wants to know what I will be doing on Thanksgiving and Christmas. She said that she imagined these holidays were going to be more difficult for me this year. Absolutely! I told her that I may be spending Thanksgiving with her, but most likely not Christmas. I just can't handle it this year. Mary is well aware of Ann's role with Team Mattie, and basically stated that if I am in town, then it only makes sense that I spend it with her daughter. It is ironic, Mary and I don't see each other daily, nor does she see Ann and I interact on a regular basis, yet apparently she has seen enough to develop her own impressions and feelings about our friendship.
 
I brought Mary dinner tonight, and I sat with her and helped her eat. However, after she was done, I had to leave since I had a Georgetown University Hospital event to attend tonight. Mary wanted to make sure I wasn't going by myself and asked all about the event.
 
Peter and I attended the Georgetown Pediatrics Friends and Sponsors dinner at the Four Seasons Hotel in DC. It was quite a special night, with food, gifts, flowers, and attention to detail. The Georgetown Pediatric Parent Advisory Board was receiving an award this year, and as a new member to this board, Peter and I had the wonderful opportunity to be included. This was an philanthropic event and it was wonderful to meet so many wonderful people within the community who generously donate to the Hospital to support the pediatrics programs. Early in the evening, I met Rachel. I actually met Rachel several times in the Hospital while Mattie was alive. Rachel's son also has Osteosarcoma, however, unlike Mattie, Noah is an Osteosarcoma survivor. He is 11 years old and truly a ray of sunshine. He beams with life, energy, and brilliance. He is a very well spoken young boy and a wonderful picture of survivorship! What I did not know about Rachel however, is that she is a daily blog reader. I am always grateful to learn who is reading the blog, and it is thanks to Rachel that I went to get a mammogram. I distinctly remember Rachel telling me about the correlation between sons with Osteosarcoma and their mom's developing breast cancer. I remember my interactions with Rachel in the Hospital, because they made an impression on me. Which says a lot, since NOT much made it through my filter back then if it did not involve Mattie.
 
Peter and I had the opportunity to see several well deserving individuals receive awards tonight for their financial generosity to the Hospital. One young girl in her 20's stood out to us. She was born at Georgetown as a premature baby. When her grandmother died, she was only 16 years old. Her grandmother left her $1000. Instead of spending this money, she donated it to Georgetown's premie program. But her creativity and thoughtfulness did not stop there. She and her mom started a "pennies for premies" program. It was a grassroots effort at first, and then with CVS' help, it branched out throughout the region. To date they have raised over $90,000 for Georgetown's premie program. Her story was inspiring, and she was one of many stories shared this evening. There was another family who was recognized, and they told the audience that their son had Osteosarcoma. However, again, unlike Mattie, this fellow survived and is 25 years old now. Naturally hearing two examples tonight of young boys who survived Osteosarcoma is promising and raises hope about treating a horrible, horrible disease. However, I am only human, and I can't help but feel deep sadness that Mattie wasn't one of these lucky children. Of course these survivors have their own lifetime issues to contend with, so I am not saying their lives are easy by any stretch of the imagination. But in Mattie's case, his Osteosarcoma was so rare, he never really had a chance at survival. I hate the feeling within myself of feeling bitter and angry. I have to be happy that children survive cancer. On some level I am, and on the other level, all I can say is why not Mattie? So this awards presentation was bittersweet for me.
 
After the dinner and ceremony were over, we had the chance to connect with Aziza Shad (the director of the pediatric Lombardi Clinic, and the doctor who was with us the week Mattie died) and my new found friend at Georgetown, Tim. They introduced us to some wonderful people attending tonight's event. One of the people they introduced us to was Patricia. I noticed Patricia earlier in the evening because when one of the speakers mentioned the Red Sox, she clapped and got very excited. Not unlike the other die hard fan in the audience, Peter. It is ironic that this same person I noticed earlier in the evening was the person Tim wanted to introduce me to. Patricia lost a son as well, her only child. It turns out she is from Boston and also went to Boston College. We had a great deal in common and her husband is the chairman of the board of Georgetown Pediatrics. She and her husband reached out to us, and it is our hope to continue this wonderful connection. Patricia is very passionate about helping children. She said to me that we couldn't save our own sons, but we are empowered to save others! She hugged me tightly for several minutes, and that is a sure fired way to get my crying. Which is what happened. 
 
Peter and I appreciated being invited tonight and for having this opportunity to get to know some of the parent advisory board members better. The chair of the board assigned me with a research task. To find out who the gurus are in pediatric end of life care arena. The board wants to start a training program for nurses and doctors at the Hospital. I relate to end of life care, and I feel this is something Mattie's Foundation can become involved in and support.  
 
I would like to end tonight's posting with a beautiful message I received last night from my friend and colleague, Denise. Denise's message brought a smile to my face, and I value this feedback. Denise wrote, "Just read the blog tonight and I was so touched by your compassion for the woman who is struggling with Alzheimer's. I lost my beloved grandmother to Alzheimer's 18 years ago and miss her everyday. I hope that there was someone with your compassion and understanding who sat with her at some point. As part of the trauma treatment training that I am doing, I have focused on learning more about sensorimotor psychotherapy-the whole mind-body connection. In the language of that world, what you did for that woman, and for Mattie each and every day of his life, was to serve as the neurobiological regulator for them. That speaks volumes about your ability to empathize and connect to people, especially to Mattie. I think of you daily and send a prayer and thoughts your way. Sitting with that woman and connecting with her took a tremendous amount of courage and strength on your part. I can visualize Mattie watching that scene and saying, "Good job, Mom." You still believe in healing. All the best to you tonight and peaceful dreams."

Wednesday, November 10, 2010

Wednesday, November 10, 2010

Tonight's picture was taken in the Fall of 2005. Mattie was in his first year of preschool. Margaret, Mattie's teacher, captured this photo of him and shared it with me. The ironic part about Mattie was he was very sensitive to things touching him, yet absolutely loved paint, anything gooey or slimy. I loved his facial expression in this picture. It seems like a look of delight mixed with fascination! Mattie was inspired in preschool, and would come home and want to paint, and even paint with his feet. Yes, we did this many times. In fact, Mattie made Thanksgiving Day cards for teachers and other special adults in his life that year by painting with his feet. Those cards were most memorable to me.

Quote of the day: All who have been touched by beauty are touched by sorrow at its passing. ~ Louise Cordana

I am spending some time each day this week with my friend Mary (Ann's mom). Mary misses her daughter when she is away, and I try on some level to fill that void. So I began my day with checking in with Mary's care companion, Shayla. Shayla and I have a system that works for us when Ann is gone. I quickly surmised that it was going to be a busy day for Mary today, a day which began with a van tour of the town, most likely to see foliage. Mid-trip, Shayla let me know that Mary got motion sick and gave me other updates. So I had a feeling by the time I would see Mary this afternoon, she was going to be wiped out. I was correct.

I had the opportunity to have lunch today with Alison. As many of my long standing blog readers know, Alison was our Team Mattie Fund manager and our communications coordinator. Alison spent a great deal of time behind the scenes helping us, supporting, us, and also playing with Mattie. Alison has many skills, but what others might not know about her is she can do many voice impressions and is VERY humorous. Her Patrick impression from the show Sponge Bob is a riot! Mattie went through a Sponge Bob phase during his battle with cancer. I recall one particular day Mattie was home from the hospital and in a terrible mood. Alison was visiting and she got down on the floor with us and played for hours. We entertained him with a cardboard boat Mattie made at the hospital, some Easter grass from a basket, and pretend people. These objects came to life when Alison animated these characters with her voices. Alison was always the funny and goofy character and I was always the more rigid and uptight one! Mattie had a good time while playing with Alison and anything that made him smile and brought him happiness, made me happy. Especially since we had VERY little happiness at home. In fact, coming home in many ways was worse than living in the hospital.

I chatted with Alison today about so many things, we laughed, cried, and as always when I need a reality check, Alison is there. Many of my friends in the past month or so have encouraged me to stay connected with them, to reach out to them if and when I need to, and know that they want to listen. I am absorbing all of this, and slowly as I feel the need to talk, to be heard, and the need to engage with others, I am trying to reach back out again. But some weeks it is easier to do this than others.

Later in the afternoon, I went to visit Mary. Mattie's preschool teacher and my friend, Margaret, had already been by to visit Mary and also brought her cookies. I was sorry I missed Margaret, because our banter back and forth is very good stimulation for Mary. Margaret and I never have a hard time chatting, it comes easily for us. By the time I arrived, Mary was sleeping. I had a feeling she would be knocked out from her day's adventure. While Mary was sleeping, I sent time with the lady I mentioned before on the blog, the lady suffering from Alzheimer's disease. Today, this lady was very upset (not unusual), crying, and screaming out for help. Since Mary was sleeping, I went over and sat with my new friend. She immediately grabbed my hand and wanted me to sit with her. Which I did for 90 minutes. Within this 90 minute time period she had bouts of sadness, paranoia, and crying. However, I never raised my voice, I just listened, held her hand, and reassured her. Want to know what I noticed? After 90 minutes, she began to calm down. We talked while I was rearranging furniture in Mary's room, and she was watching me closely while I was doing this. She seem intrigued and also concerned about me. By the time I was ready to leave, she was convinced we were related and said she looks forward to seeing me tomorrow. What this woman illustrated to me was even with deep cognitive impairment, when you treat someone with respect and like they matter, you get results.

Several times, I tried to wake Mary up and chat with her. But she was too tired. She heard me though and acknowledged my presence. Especially as I put grapefruit smelling lotion on her hands and arms. One of Mary's caregivers in the evening is absolutely a doll. We chatted tonight and she assured me that if Mary wakes up hungry even at 9pm, she would help feed her. You have to love and admire good hearted people like this caregiver because they do not grow on trees. Any case, it was a day of positive connections for me, connections that I needed as I have been going through some low points.

Tuesday, November 9, 2010

Tuesday, November 9, 2010 -- Mattie died 61 weeks ago today.

Tonight's picture was taken in the Fall of 2005. This was Mattie's first semester at Resurrection Children's Center. Margaret and Lana were his teachers and they really understood and nurtured him that year. I can clearly say the little boy that entered preschool that year was VERY different from the boy at the end of that school year. Within one year's time, Mattie learned how to make friends, how to be a good friend, and I could see him being happy with himself and what he was becoming. In this picture, you see Mattie playing with Zachary in the loft within their classroom. What you may not realize however, was the extensive amount of colored tape Mattie and Zachary used to block the entrance to the loft. In fact, Margaret told me by mid-semester Mattie used the entire year's supply of tape for the school. I was mortified, but Margaret handled it well and laughed. I think we were just so happy to see that Mattie was stimulated and engaged! I recall those days in the loft as if they were yesterday. Mattie's school was a cooperative preschool, and therefore about every month or so, I would volunteer in the classroom. This enabled me to see Mattie in action and to get to know his classmates. I was happy with that option back then and my level of participation, but in retrospect I am SO thankful I had this time with Mattie and got to see his relationship with Zachary grow and develop.

Quote of the day: The true resting place of the departed, lies in the hearts of the living. ~ Author unknown

As I was leaving our complex this morning, I bumped into my neighbor Kathleen. Kathleen is in her 80s, and she was very fond of Mattie. Whenever she would see Mattie and I together, she would come up to talk with us, and though it took Mattie a while to learn how to be patient through such conversations, he managed. Through our interactions with Kathleen, Mattie learned the importance of holding a door open, for helping her carry packages when she wasn't able to make it down the hallway, and to listen to adult conversation. Children can learn a lot from older adults, and I think they need to learn at an early age that when people are speaking you listen. You are not playing games, you are not watching TV, but instead are being respectful. None of this came easily to Mattie initially. Naturally he was a child, and children have other interests sometimes that do not entail standing still and listening to someone who may appear to be less energetic than one's self. But over time, Mattie won over Kathleen's heart. She told me today that every time she looks out the window and sees Mattie's frog sandbox she thinks of Mattie. She remembers his sweet personality and face. I couldn't have said it better and it was nice to know that I am NOT the only one who feels this way when I look at that frog! When Mattie developed cancer, each time we were home from the hospital, Kathleen would bring us flowers. Just to say she was thinking of us. I guess my interaction with Kathleen today just further confirmed the spirit that Mattie had and how he captivated those around him.

I had the opportunity to have lunch today with my friends Carolyn and Mary. Both are former Resurrection Children's Center moms, and both of them were instrumental members of Team Mattie. Not to mention valuable members of our Foundation's walk committees. We had fun talking about life and friendships. We had an interesting discussion today about trust. Trust is the backbone of a good friendship and relationship, but how is trust developed? What makes us inclined to trust some people in our lives and not others? Also what does it take to earn trust? I do think time does help one determine if a friend is trustworthy, however, the catch is that one has to be somewhat vulnerable at times in order to determine whether someone is trustworthy and capable of a long term friendship. So in essence it takes trust to develop trust.

I do think that with age, and experience, we are more sceptical to give our trust to others. We learn as adults that people may have ulterior motives, previous baggage, and an agenda when interacting with us. In a way it is sad that we have to be cautious when entering a new friendship or relationship, because wouldn't it be simply wonderful if we did not have these fears and worries and could just accept people for how they present themselves to us. If it were only that simple! It was a stimulating lunch and also a wonderful way to reconnect. Of course ending lunch with a piece of cheesecake never hurts the bonding moment either!

As we said our good-byes, I noticed Mary's purse. It was quite lovely and had wonderful detail work on it. I asked her about the purse and she told me she bought it at the Mattie Miracle Walk in 2009. I found that very touching, and felt as if a part of Mattie was with us today!

I received an email today from Linda, Mattie's childlife specialist. Linda knew I wanted to reconnect with Deborah, the "Bead Lady" at the Hospital. Mattie and I spent many a day with Deborah creating jewelry. In fact the bracelet I wear each day on my right wrist was created by Mattie with Deborah's help. Deborah was good for Mattie and also good for me. She helped take my mind off of some really hard moments and decisions, and in the process I got to look at and select some beautiful beads. I am meeting with Deborah at the Hospital next week, and it is my hope to meet with her each time she is there. I would like to learn how to make jewelry for various reasons. The primary reason is I need a creative outlet and the other reason is it would be wonderful if I could develop a line of jewelry for the Mattie Miracle Cancer Foundation. Jewelry that I design and is inspired within me from Mattie.

As it is a Tuesday and the 61st week that Mattie is gone from our lives, I received an e-mail from Kristen today, Mattie's oncologist and our friend. Kristen remembers us each Tuesday and says, "Thinking of you this Tuesday and everyday....Much love." Mattie was a seven year old, who for some of us, is simply too hard to forget.

Monday, November 8, 2010

Monday, November 8, 2010

Tonight's picture was taken in April of 2006. Mattie was four years old. We took Mattie to his favorite restaurant for Easter. What Mattie did not expect was a life sized bunny coming over to the table to greet him and give him gifts. Mattie handled this encounter much better than I did at his age. My mom still tells some great stories about when I first met Santa Claus and don't get her started on the Easter Bunny. Some how both of these characters scared me to death. I usually landed up hiding under a table to avoid being singled out. Mattie however, looked to me that day, and when I told him it was okay, he seemed to play right along and of course smiled. What a great smile.

Quote of the day: I never spoke to God nor visited in heaven; yet certain am I of the spot as if the chart were given. ~ Emily Dickinson


As I was reading through the book of grief poems my friend and colleague, Denise gave me, I came across this one by Emily Dickinson. I would like to have her certainty about heaven. It is somewhat ironic that many of the foundational components of Catholicism that I grew up with, I accepted, and I did not question them. However, when Mattie developed cancer and then died, not only did this rock my world, but it also shook my entire belief system. In my pre-cancer world, children did not get terminal illnesses and die (well at least not the children I knew). But seeing cancer up close and slowly devour your child, changes everything. Suddenly everything I held dear and understood did not make sense anymore. So there are times I wonder is there a heaven, is Mattie in it, and is he okay? Certainly these are questions with NO answers forthcoming. I can only hope that Mattie is out of pain, is happy, and is having a chance to live his childhood in peace somewhere else.

There was nothing wrong with today, and yet nothing right with it either. I spent the day at home. Working on many different projects. So unlike my usual report, I really do not have much to say. My furry companion, Patches, was by my side today, as I was working around our home. When Peter got home tonight, we had a conversation about the upcoming holiday season. Neither one of us is prepared for this, not that we were last year, but this year the magnitude of Mattie's loss seems far greater, and as Peter says to me all the time...... how are we going to pull out of this feeling?! Great question, of which I really do not have an answer. Other than taking it one day at a time. The next couple of days I am having lunch with friends and then have one hospital event to attend on Thursday and a licensure board meeting on Friday. So this will force me to get out, interact, and be productive.

Sunday, November 7, 2010

Sunday, November 7, 2010

Tonight's picture was taken in December of 2006, at Deerfield Beach, FL. Mattie spent many hours that trip on the sand and building castles, cities, and even a big alligator. Mattie always traveled to the beach with some of his sand toys from home. There were some that were his favorites, and as Mattie became older, I always encouraged him to decide what items he wanted to pack in his suitcase and have along for the trip. We would pack it together and discuss the contents, but he always got some freedom in this process. Packing is a responsibility and even at a young age, Peter and I felt it was important for Mattie to take on responsibility. So if you look carefully at this picture, you will notice a red car on the top of this city. This was one of Mattie's favorite sand vehicles, and was usually packed for a beach trip. Now move your eye down from the car, down the hill of sand. Do you see airplanes molded into the sand? That was because Mattie always traveled with his sand molding shapes, and after Peter and he would dig and build, Mattie and I would decorate with things we found on the beach (examples: bottle caps, sticks, rocks, shells, etc.) as well as used the sand molds to create designs. To me this is a happy picture and it also makes me stop and reflect how these two boys matched each other with their sunglasses and Boston Red Sox hats!

Quote of the day: Recall as often as you wish; a happy memory never wears out. ~ Libbie Fudim

I began my day with a cold shower. NOT by choice, something happened to the hot water in our complex. It eventually came back on, but for me it was a rude awakening. Some people need coffee in the morning to start their day, I need a hot shower. The day did not get better from that point on. I spent a good portion of the day working on a project with Peter and while working, was emailing Karen, my lifetime friend. Karen felt that the shower set me off for the day, and therefore caused a chain reaction. She is probably right. While I was working, Karen was writing college recommendation letters for students. She let me know that she is including Vicki-isms in some of her letters. I did not know what she meant at first until she explained. For example, if I find someone particularly funny, I will say he is a "hoot!" For me, this word brings to mind the picture of laughter and comedy. However, if you hang around me long enough, apparently my lexicon rubs off on you. Which made me chuckle.

The highlight of my day however was getting a phone call from Palen, Whitney's sister. Palen is the Vice President of the VP 26 Tridents Officers Spouses Club. Palen is the person who advocated for the Mattie Miracle Cancer Foundation to be the beneficiary of her Club's service auction this year. Palen shared many of the highlights of the auction with me, and all I can say is she and her team did an incredible and awesome job. I want you to know that around 60 people attended the auction, and they raised about $4000! That left me speechless at first. I asked Palen about some of the auction items, specifically what they were. There were 12 live auction items (and lots of silent auction items), many of which caught my attention. Why they caught my attention was because the items were clever, creative, and useful. Palen said that every member of the team brainstormed auction item ideas and I was truly impressed with the team's cohesiveness and effort. One of the auction items consisted of a team of people who would come to some one's house dressed as elves and Santa, set up and decorate their Christmas tree and house, wrap all Christmas presents, bake 5 dozen cookies, and then come back after Christmas and put all the decorations away! Unbelievable! Naturally you can imagine this was a hot item. Other great ideas involved auctioning off special parking spaces on Base and even auctioning off an Officer's bathroom for showers (this apparently was an incredibly sought after item, because this entailed access to a private bathroom and shower!!!).

I could sense Palen's level of energy on the phone and I wanted her to know how proud we were of her and how this one event will have a ripple effect. Because there are many people now in Florida reading the blog and checking out the Mattie Miracle website because of this auction. In addition, Palen let me know that one attendee of the auction is helping to emotionally support a family at his church who has a seven year old with Osteosarcoma. This attendee will be linking this family to our Foundation. What also impressed me was despite the large effort it took to plan, coordinate, and run this event, the planning committee had a great time. That doesn't always happen, but it speaks volumes to me about this group! As more details and pictures come my way, I will be sharing them with you. But Peter and I are thrilled about the auction's success, and for the Club's willingness to select our Foundation. In the past, the Club has chosen to raise money for organizations that supported military personnel and their families, which makes perfect sense given their mission and their membership. However, this group is passionate about children and their future, and as Palen told me, as people were bidding on items last night, the spirit in the air was...."it was for Mattie!"

After talking with Palen, I also got to talk with Brie, a crucial member of the auction planning team, and Whitney. Whitney lives in Maryland, but flew down to Florida to support her sister and to represent us and naturally to talk to people about Mattie. I am deeply touched by this Organization and below is the statement we wrote that Palen read to the auction attendees.

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From Vicki and Peter Brown, Founders of the Mattie Miracle Cancer Foundation, and Mattie's Mom and Dad

On behalf of the Mattie Miracle Cancer Foundation we are truly honored that the VP 26 Tridents Officers Spouses Club selected our organization as the beneficiary of your auction this year. When Palen told us about this in July, we were deeply touched by your squadron's compassion, commitment, and dedication to help children and their families fight pediatric cancers. Your efforts and contributions will make a difference!

While our son Mattie, was in the hospital and fighting Osteosarcoma, the VP 26 Tridents sent him some amazing pieces of signed memorabilia. Mattie was so thrilled and happy to receive such thoughtful gifts and though he never met you, he could feel the depths of your care and concern. The ironic part is our family is connected to the VP 26 Tridents in two special ways. One is through Palen and her family and the other is through Lana Sonoda. Lana's son, Sean, is in the Tridents and Lana was one of Mattie's favorite preschool teachers!

We want to thank you for believing in our Foundation and for your passion to help children with cancer. We also thank you for your service and commitment to our Country and our freedoms. You are the backbone of what makes us a strong and beautiful Country. Have a wonderful and memorable auction tonight, and know that in selecting our Foundation you are helping us to keep the memory of our seven year-old son Mattie alive.

Thank you!
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Saturday, November 6, 2010

Saturday, November 6, 2010

Tonight's picture was taken in December of 2006. That particular Christmas we spent in Deerfield Beach, FL with my parents. Peter and I rarely spent Christmas in Washington, DC. It happened on occasion, but it wasn't often. So Mattie was conditioned that Christmas meant traveling to see family. In 2006, this was our first Christmas in Florida, and Mattie loved it. He loved the sun, the beach, and the ocean. As you can see in this picture, Mattie was having fun on the beach with his favorite sand buddy, Peter. Mattie and Peter could spend HOURS building and creating sandcastles on the beach. They were great at digging and building, and once they were done, Mattie usually would seek my help for decorating with seashells and seaweed. What you may not be able to tell from this picture, was that they dug quite a city in the sand, it went down several feet and took a great deal of time to create. Apparently this city was SO inviting that two other boys came over to join Mattie and Peter that day, and the playgroup just kept growing that afternoon!

Quote of the day: Because of you, I love a little more. Because of you, I take time to give an extra kiss good-bye. Because of you, I have a new favorite song. Because of you, there may be dust on the window sill, and I don't care. Because of you, I live today, before I worry about tomorrow. Because of you, I don't give up quite as fast. Because of you, I still believe in rainbows. Because of you, now I can help or listen more. Because of you, today, I am me. ~ Eileen Wernsman


I relate quite deeply to tonight's quote. I am sure if I polled parents they would all admit that having a child changed their lives. It would be impossible for it not to. Children require your time, energy, and all sorts of resources. Having a child expands one's lens and focus, and at times you can even forget who you are in the process, because of this intense bond and role. But having a child and then losing that child, are beyond a rude awakening. Before Mattie got sick and died, my world was very orderly. Which meant for example that our home was organized and also reflected the people who lived in it. Being organized to me was key, it made me happy, and it helped me also balance Mattie full time and also work. However, now this level of organization no longer matters. Instead, I live life in piles and with Mattie's things all around me. On some level this bothers me, but in the grand scheme of things it doesn't matter one iota. It is not important. I no longer worry about the future, I instead have maintained the one day at a time philosophy. A philosophy I never quite understood until Mattie was diagnosed with cancer. However, now that I have experienced cancer and Mattie's death, I can't go back. I can't return to my old life. I was always inclined to help and listen to people, which is why I selected to become a mental health professional, however, the way I listen and understand people now are completely different. It is almost at a heightened level. The problem naturally with all of this is that while I have changed internally the world around me has not. I suppose I should be thankful! Otherwise that would mean that the majority of the world experienced cancer and the death of a child. Nonetheless, being different and feeling different are not always a good feeling, nor is feeling misunderstood at times.

Peter and I worked on a project together at home today, and while chatting and brainstorming the project, Peter had 80's music on in the background. I did not realize what I was listening to at first, until it sunk in. I was being transported back to our college days. But there was deeper meaning, I realized, to is music selection. Peter chose to listen to 80's music because the theme of the Mattie Miracle Cancer Foundation fundraiser tonight in Florida was the 80's!! In fact, Peter spoke with Whitney (one of Mattie's favorite childlife interns at the Hospital) today, who gave us an update about the wonderful auction items and the plans for the evening. We are very grateful to the VP 26 Tridents Officer Spouse Club for hosting this event, for keeping Mattie's memory alive, and for raising funds to help other children fighting cancer. Whitney's sister, Palen (the Vice President of the Officers Club) posted this picture tonight on her facebook page. In the picture is Whitney, dressed in her 80's outfit, holding up one of the fundraising posters they created. The picture of Mattie on the poster board was taken during the Halloween Parade (2007) at his school, when he was dressed as an air force pilot.

Peter and I went out to dinner tonight with Ann and Bob as well as another couple. I have met Lauren before on several occasions, but never had the opportunity to have dinner with her and her husband. Lauren is one of the people I have gotten to know after Mattie's death and right from the beginning of our relationship she has encouraged me to turn the blog into a book. Lauren sees the potential for the material and for my writing. Not that others closer to me haven't given me similar feedback, but hearing this from someone who I did not know well, but who I consider well read and connected to our cultural climate, it made me stop and listen. Her comments have remained with me and I appreciated the opportunity to get to know her better tonight, and naturally don't you know when we parted company this evening, she told me she wanted to get together with me soon to talk about my book.

As we were walking home this evening, it dawned on me just how cold it was outside. I have been watching Peter bring many of our beautiful plants indoors over the past two weekends, but somehow even that did not make an impression on me, until I was hit by tonight's cold air. The funny part about this is all my green friends outside, are NOW inside with us. I am not just talking about a few plants, instead our living room looks like a greenhouse, and I can't wait to see what it looks like when Peter drags in the 6 foot tall lemon tree! All I know is Patches, our cat, is very excited by these new additions, and frankly with winter coming this may be the only green we see for a very long time.