Saturday, November 5, 2011

Saturday, November 5, 2011

Tonight's picture was taken in November of 2003. Mattie was a year and a half old and was my interior designer. He wasn't happy with where I placed the pumpkins that year, and decided to take matters into his own hands. Mattie loved pumpkins and was attracted to their bright and happy color! There are many pictures over the years that I took that really captured Mattie's will, determination, and spirit. When Mattie had his mind made up to do something, it was like watching a boy on a mission. Not unlike what you are seeing illustrated here!  



Quote of the day: When a person is born we rejoice, and when they’re married we jubilate, but when they die we try to pretend nothing has happened. ~ Margaret Mead


Margaret Mead was absolutely brilliant. The question I have is why do we pretend when our loved ones die that nothing happened? It seems counterproductive, especially when the art of grieving and surviving a loss is to talk, share stories, and to remember. My hunch however, is that others around us are just not sure how to talk with us and sit with us in grief.

Peter and I participated in the DC Pediatric Palliative Care Collaboration conference today. In fact, for over two days, we have been prepping and chatting about the panel so that we would have unique points to contribute.

The panel was entitled, "Knowing who we are: A Family Panel." In attendance, were over 200 participants, who were either, doctors, nurses, social workers, or chaplains (most of whom Peter observed were women). Attending the conference yesterday helped me have a feeling for who I would be talking to today. I will share our observations about the panel below, but I do want to say that Peter and I work very hard to make sure that Margaret Mead's quote does not and will never apply to Mattie's life.

As a visual learner, I always have notes and I jot down keywords to trigger my thoughts whenever I speak in front of people. Today was no different. Well that is until I went to our pre-panel meeting. The two individuals running the panel, took away the dais, and wanted NO paperwork in front of us. I got the point, they wanted our audience to feel directly connected with us. Which was effective, but that made me have to switch gears.

In the panel pre-meeting, we had the opportunity to meet and introduce ourselves to the other participants. Two other families besides us were included. One family lost their premature baby four years ago. Their daughter was born at 24 weeks, and though she survived five months in the hospital after birth, she had complications and died. The other couple, lost their 18 year old son six years ago to leukemia. However, only the mom from this couple participated in the panel, the father did not feel comfortable sharing his story, which is completely understandable.

The father of the couple who lost their premature daughter, captured our attention. This was his first time ever speaking about his daughter in public. He was apprehensive to talk and wondered in the pre-meeting whether he could even do this. However, as he continued to speak, Peter and I instantly related to him and I have a feeling this camaraderie helped put all of us at ease.

For just a glimmer today, I felt a portion of my former self come alive. While talking about Mattie, I could feel my energy, my passion, my ability to put thoughts and concepts together, and my ability to draw people into our story come alive. In a way, I reverted back to the energy I used to bring into my teaching. I was humorous, engaging, and compelling. I haven't felt this way about myself in a while, but I had the audience laughing at times, tearing at other times, and also seeing what I must have been like to deal with in a hospital setting. During certain occasions at the hospital, I wasn't nice, I could be very aggressive, and could take charge when I felt Mattie's care wasn't being properly handled or managed. This side of myself, came out today, and while talking, Peter was making hand gestures at times. For example, I went on a diatribe about the concept of "new normal." A phrase I absolutely detest, because at no point in Mattie's treatment was there anything NORMAL about what we were going through. Yet this is a term forced upon all cancer families at one point or another. As I was explaining this, Peter apparently motioned as if he was taking a pistol out of his pocket and shooting it into the air. Basically letting the audience know, that he considers me to be a "pistol packing Mama." I detested the concept of new normal, and I feel it is important for medical personnel to understand how insulting this notion can be.

A good portion of the panel was discussing how caring for a terminally ill child, and now living through grief can impact a marriage. Peter and I were very candid with the audience, as was the other couple. I explained to the audience that our marriage not only went through a difficult time after Mattie died, but in essence our marriage was degrading for 15 months while Mattie was battling cancer. I mentioned that all good marriages require work and communication, neither of which we had the time or energy to do while caring for Mattie full time. During Mattie's cancer battle, we rarely spoke to each other (since Mattie did not want to hear talking most times in his room, we basically communicated to each other in text messages), and one of us was always sleeping with Mattie to make sure he was safe and secure. So after Mattie died, yes we were dealing with grief, but we were dealing with a non-existent relationship as well. As the other couple mentioned today, what we all survived, typically destroys a marriage. Indeed!

The audience was very grateful to hear Peter's perspective because typically it is hard to get a grieving father to talk, much less to talk to hundreds of people. Peter did an outstanding job. He typically doesn't like to talk because he lands up in tears, but today he was powerful and got his message across beautifully (though I think whether he cries or not, his messages are always powerful!). In fact, when the floor was opened up to the audience to ask questions, the first question was posed to Peter by a physician. This physician, who is a pediatric oncologist, started to talk to Peter about how it is important for a caregiver to care for one's self! She then went on to ask him would he have done anything differently to take better care of himself back then, since she deemed his lifestyle of working full time and then sleeping in the hospital to be over the top. As she was asking the question, Peter put his hand on my knee. He did this because he knew I was going to blast her out of her chair. He responded to her and explained why he wouldn't have changed a thing that he did. He also told her that he did what he felt had to be done.

After Peter spoke, I then chimed in. As Peter said to me tonight, he grabbed my knee during the presentation because he knew that in about a few seconds this doctor wouldn't know what hit her! I told the doctor that one of the biggest mistakes hospital personnel make is they do not assess the familial relationship prior to the cancer diagnosis. That can be done easily by just asking a few questions of the family. As I told her, in my case I was always a "helicopter" mom, and therefore if I was very present in Mattie's healthy life, how on earth, would I leave him for a second while battling cancer? The answer is I wouldn't. I also told her that she needs to trust her families, because we all get to a point when we know we need a break, and when we do, we will take it. The decision to take a break MUST come from us and NOT be dictated to us by others. I also told her, that now that Mattie is gone for two years, I can safely say on stage that if I did take those breaks, by going shopping or to a spa like others suggested, I would be very disappointed in myself today. Yes I gave up a lot, and it came at a great expense to my physical and mental health, but I live with no regrets about the time I spent with Mattie. With that she turned as red as a beet, and I knew I got my point across.

The panel presentation ran for about one hour and 45 minutes. After it was over, Peter and I had a line of people who wanted to speak with us. As several people told us today, Mattie would have been proud of us, and that was lovely to hear. I also met a nursing student who came up to me and let me know that based on what I said, this has changed her whole view on the importance of connecting with one's patients. The feedback today was positive and powerful, and these comments will stick with us for quite some time. I was so proud of Peter because he basically helped this other father have confidence in himself and in his story, and I could see that after the presentation was over, these two dads felt connected with one another. This other dad confided in Peter and they had a solid interchange which I hope continues after this event. This type of connection is rare, particularly because I have found other dads are hesitant to open up and be vulnerable. The panel was very meaningful and very healing. Typically I do not like hearing other parents' stories, but these two families blended so well with us and what we learned is that we had great commonalities, despite our differences.

The one thing that surprised me was the realization that Peter and I came to a while ago, yet it was novel to the other two couples today. Peter and I determined about two months into our bereavement process that we were grieving differently, yet that did not mean we weren't in pain or didn't love each other. It just meant we were in different places emotional at the same time. I could have been numb and Peter crying or vice verse. We concluded that this was okay and normal back in 2009, and we uphold this belief even today. I was happy that this philosophy resonated with the other families as well.

Friday, November 4, 2011

Friday, November 4, 2011

Tonight's picture was taken in November of 2002. As you can clearly see, Mattie was looking directly at me and NOT the camera. I was so careful with Mattie when he was in the tub, I always had one hand on him at all times. The ironic part in all of this is I tried to protect him at every stage of his development, but despite my best efforts, some things were beyond my control.


Quote of the day: The deep pain that is felt at the death of every friendly soul arises from the feeling that there is in every individual something which is inexpressible, peculiar to him alone, and is, therefore, absolutely and irretrievably lost. ~ Arthur Schopenhauer

I attended The District of Columbia Pediatric Palliative Care Collaboration conference today. Literally I sat in one place for NINE hours and concentrated. So I am very tired tonight. I haven't attended a professional conference for many years now. The last one I attended was in July of 2008, a week before I took Mattie to the pediatrician and found out he had Osteosarcoma. For the longest time I associated attending conferences with getting cancer, since the time of Mattie's diagnosis will always remain vividly inside my head.

In the summer of 2011, I attended a reception sponsored by another cancer organization. While at the reception, I met a woman named Deborah. We had a lovely conversation and exchanged business cards. About a month ago, she emailed me and invited us to participate in her conference panel, to share our perspectives and insights with medical professionals on coping with the care of a terminally ill child.

The conference is a two day event and hosted by The District of Columbia Pediatric Palliative Care Collaboration. The Collaboration is a cooperative venture of two health care organizations in Washington, D.C. that seeks to provide comprehensive care to children and families facing life-threatening and life-limiting illnesses. The partners in this project have pooled resources to provide a full range of services to the community, including:

• Inpatient palliative care consultation
• Psychosocial support, counseling, and bereavement services
• Education and research in pediatric palliative care.

Not only did Deborah invite me to participate on the panel, but she invited me to attend the conference. So today, despite my apprehension associated with the content, I decided to go. I have heard a lot about the Collaboration and as a mental health professional I do need continuing education units to keep my license current. So this was actually a beneficial activity for me on multiple fronts.

As soon as I walked into the conference, I saw many familiar faces. Dr. Shad (the attending physician on call during the week Mattie died and a Mattie Miracle Board Member), Mattie's nurses, chaplain, social worker, and case manager were all in attendance. So it was like a mini reunion. One of the individuals who greeted us this morning got up on stage and asked the audience to raise their hands to indicate whether they had grandchildren. His next comment was...... "don't you just wish you could by-pass having children and go straight to grandchildren." With that the audience laughed, I on the other hand found that comment insulting. It clearly showed me that this person thought he was talking to a room of practitioners, not even taking into account that at least two of us in the room were parents who had lost a child. It took me a while to shelf that comment and not to let that influence my perspective on the rest of the event.

One of the speakers today was Dr. Shad. The lighting in the room made it challenging to take a decent picture. But she and her colleague gave a talk on.... The child with cancer: Oncologic and pediatric palliative care approach. Unlike what so many of think, palliative care is not synonymous with end of life care. Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

I had the opportunity to hear from several physicians today who specialize in palliative care, and they talked about the challenges they have convincing their colleagues of the benefits of this care. The main barrier to performing palliative care lies in the physician. Because most physicians are likely to say that they already do palliative care and therefore do not need training. After all, they assess and treat pain, provide support, and help with decision making. However, effective palliative care involves an integrated team approach of professionals (physician, chaplain, social worker, psychologist, psychiatrist, childlife, etc) and the family. It was an eye opening experience to see the turf wars and in-fighting within the medical profession.

Another presentation that caught my attention was on hope. Hope was defined as a wish or desire accompanied by the confident expectation of its fulfillment. This physician explained the importance of asking families, who are facing a terminal diagnosis, what their hope is for their child. He gave several examples. Naturally the most likely response patients' parents give is they want their child to get better and be cured. However, this physician doesn't stop there. He responds by saying, "yes I wish that too. But what else do you hope for?" What he is looking for is tangible things, such as "I want to be able to take my child home for a party," or "I do not want to see my child in pain." These are manageable hopes and expectations and things a medical team can actually grant. He went on to say that typically when the care team comes to a meeting and has to deliver bad news (such as a terminal condition), the tone in the room is somber. But when he uses this..... what do you hope for strategy, the tone in the room changes, and people feel more positive about what they can do and control. I listened to all of this, and though this makes perfect theoretical sense, my gut feeling was WHO IS HE DOING THIS FOR? The patient, the family, OR HIMSELF? I can state without a doubt that if Kristen came into a room and asked me..... Vicki what do you hope for with Mattie? I would have started screaming! It is a comment that I wouldn't have found helpful, but patronizing. A part of me feels that by asking a parent, what do you hope for, this allows the care team to feel a sense of hope and a sense of accomplishing something when literally there is nothing medically left to do.

Peter and I present tomorrow at the conference at 2pm, so think positive thoughts for us. It is challenging being in a room of clinicians, particularly when the topic isn't theoretical for me like it is for them, for me it is very real and has impacted my life.

Thursday, November 3, 2011

Thursday, November 3, 2011

Tonight's picture was taken in November of 2003. Mattie was a year and a half old here, and this is one of my favorite pictures. I can still recall taking it. We took Mattie to a farm one weekend, and this was his first up close and personal visit with a sheep. Mattie was thoroughly intrigued and his left hand so wanted to reach out and grab at the wool on that sheep's body. But we tried early on to teach Mattie about respecting animals and understanding their sensitivities and needs. Though I must admit, Patches (our cat) was Mattie's greatest teacher, and boy did she put up with a lot in the beginning. But she was patient and never ever tried to scratch Mattie, though she was provoked many times! Even Patches misses Mattie now, and it is evident to me when she sits on his bed and spends hours in his room near his stuffed animals.


Quote of the day: Suffering and joy teach us, if we allow them, how to make the leap of empathy, which transports us into the soul and heart of another person. ~ Fritz William

Peter and I started our day at Georgetown University Hospital. We met with one of the students from the business class that has adopted us as their community service project. As we were driving onto campus, we went into the main entrance, not the ER entrance (where I normally parked). As Peter was driving down the main drive of the hospital, we passed the building where Mattie did physical therapy and the building where Mattie had his hearing tests. I HATED that building, because it seemed like each time I went there, I learned that Mattie's hearing was further compromised. As I was passing those spots today, it was as if I was getting some sort of visceral reaction, I could feel being in those places, I could see Mattie there in his wheelchair, and I remember the sounds and conversations that occurred there. It was almost as if seeing these places  triggered a tape recorder in my mind to switch on, and it was replaying many events in those spots. It was an eerie feeling, because I typically do not come on campus and feel Mattie. But today was different.

We had a productive meeting with this young woman, who happens to be a professional grant writer. So Peter and I picked her brain about helping us locate applicable grants for the Foundation. As our meeting ended, Peter asked me if I ever thought about how Georgetown changed our life. It was a loaded question, because Peter got his MBA from Georgetown, and that degree opened many opportunities for Peter professionally. It is quite ironic that he would then return to his Alma mater to fight for his son's life and watch him die on campus. Needless to say, Georgetown was our home for over a year, and between the both of us, we know all the tricks on how to get from one building to the other in that labyrinth. Those who know me, know I am VERY directionally challenged, so if I know my way around somewhere, it speaks to the intensity of my experience there.

I had the wonderful opportunity to have tea today with my friend Mary. I met Mary at Mattie's preschool, and I see her on occasion since she lives right around the corner from Ann. Though Mary and I did not know each other well when we were both moms at Mattie's preschool, Mattie's story brought us together. In many ways, Mary and I have very similar parenting styles, and when she would come to deliver us dinner while Mattie was in the hospital, Peter and I got a chance to meet and get to know her two girls. The girls always came to visit, and Mary's youngest, Emily, immediately took to Peter. She would hug him and want his attention. That sweet gesture, I know always brightened Peter's day. Peter also gave Emily a stuffed animal unicorn, and my understanding is that this unicorn is considered a special item in her world. Each Halloween since Mattie died, Mary sends me a picture of her girls dressed up. Though seeing children is hard for me, I do look forward to receiving this picture each year. The girls are BIG Scooby Doo fans, and when I see their costumes from year to year, all I can think is Mattie would greatly approve of their selections!

Mary's girls consider Mattie their friend. But understand that these children really did not know each other in preschool. They were in different classes. Yet when Mary publicizes our annual Foundation Walk each spring, the girls are right beside her and they tell store owners and community members about the story of their friend Mattie. I have a feeling their hospital visits and the stories they heard about Mattie have impacted their lives in ways we don't quite imagine. In any case, I appreciated our connection today and though I am not sharing the extent of our conversation, I was very honored by what Mary was telling me. I received one of the highest praises I think one mom can give to another.

I spent the rest of the day at home. I will be attending a full day conference in Washington, DC on Friday. We have been invited to a Palliative Care conference and Peter and I will actually be presenting at this conference on Saturday. We are serving on a parent panel on Saturday which will be highlighting the experience of coping with a child who has a terminal illness and basically discussing lessons learned that will impact the medical community. As I was prepping for this discussion, I literally drew a blank. I was speechless, rather ironic, since I write about this daily. When Peter got home from work, we started to dialogue about this together, and then the thoughts began to flow, along with the tears. Reliving aspects of Mattie's treatment is painful, and when I hear what we lived through it is NOT at all surprising that our lives are forever changed and that I have completely down days.

I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy wrote, "With the newsletter and the rereading of the mission of the Foundation, I had a new understanding of Peter and you. You eluded to this in the blog. Following the death of a child, some families decide that they want to have another child, not necessarily to replace the one who has died, yet, possibly to keep their sense of family in tact. For Peter and you, Mattie was it. He was your pride and joy, continuing to be your guiding spirit and he has received a lifetime of love from each of you. I see how the Foundation is another child. It is an outgrowth of Mattie, not a replacement. It gives some sense of connection with him for Peter and you and it definitely is handled with love and passion. I will never wonder about this issue again in regards to you, my friends."

Wednesday, November 2, 2011

Wednesday, November 2, 2011 -- Happy SECOND birthday Mattie Miracle Cancer Foundation!

Tonight's picture was taken in October of 2006. One weekend we took Mattie on a Walkersville Southern Railroad trip. Basically these historic trains take you through the countryside of Maryland, which was very beautiful, serene, and picturesque. Mattie was in love with trains and truly loved the adventure, as he and Peter were walking between train cars and checking out the sights inside and outside of the train!


Quote of the day: The only way to do great work is to love what you do. If you haven't found it yet, keep looking. ~ Steve Jobs 


Two weeks ago, my dad sent me this quote. When he sent it to me, I liked it, but at the time I did not have the right context to apply it to the blog. Well that is until this evening. As today marks the second birthday of the Mattie Miracle Cancer Foundation (it was incorporated in the State of Virginia on November 2, 2009 -- two months after Mattie died), this quote seems very applicable. Actually it is funny. People were sending us HAPPY BIRTHDAY messages today on Facebook, before we even posted a message about the significance of the day! So for our Facebook friends and fans, we greatly appreciate each message today!

Many of you have journeyed the cancer battle with us and continue to ride out the grief process as well. For all of you who haven't forgotten, who check in, write, and stay connected, these are HUGE gifts. As I was reading through our Facebook messages today, I was struck by what my friend (Brandon's mom, Mattie's big buddy), Toni, wrote. She basically congratulated us and said that she is aware of the fact that the Foundation is our "labor of love!" In a way this "love" is exactly what Steve Jobs was talking about. Work and daily living are tedious. However, when you find something to be passionate about, then typically the end product is something great. Most things which come from the heart are destined to be successful. I truly believe that! In fact, I am a firm believer in intrinsic versus extrinsic motivators, even for children. Satisfaction and love for activities must be nurtured and not always rewarded with gifts, money, and other tangible incentives. After all, life doesn't give us gifts for each thing we do or accomplish. The gifts must come from within us. When "doing" is motivated by love, it usually makes us feel good about ourselves and about helping others. As a result this sparks an even greater love for the activity/work we do.

Some people have flesh and blood babies, our baby is The Foundation. Mattie Miracle embodies Mattie, his spirit, and it is his legacy. Perhaps it is our legacy too! Timed with the Foundation's second birthday, we distributed our November newsletter electronically to over 800 email addresses today! As the day progressed on, I received some very meaningful and touching emails about the publication. Up until now, Peter has maintained all newsletter correspondence for the Foundation. But with him balancing a full time job, this made NO sense for him to add this to his plate. So the newsletter that went out today was my creation. Since I love writing and taking pictures of events, the newsletter is a natural fit for me. However, like anything I do with the Foundation, the newsletter was also a labor of love. So when several of our supporters wrote to me today and expressed their thoughts and feelings about the newsletter and the Foundation, I was deeply appreciative.   

I will end tonight's posting with a sample of messages I received. The first one is from my friend and colleague, Lisa. Lisa wrote, "Bravo, Bravo, Bravo! Vicki, I am proud of you and Peter. One of these accomplishments is tremendous but taken together they are amazing."

The second message is from our new friend, Heidi. Heidi wrote, "What a wonderful newsletter highlighting the great works done by you and Pete. Mattie's memory shines on with all the loving work you do! I think it is wonderful that not only are you helping the medical community, but also young adults at Georgetown in their business class. I am sure you are looking forward to hearing all the ideas on November 17."

The third message is from a mom of a pediatric cancer survivor. Carmen also volunteered this year at the Walk! Carmen wrote, "Congratulations!!! Though this is not quite the word I'd should have chosen - as a family with a cancer kid. I am so grateful for what you and your organization have done for us. It was a great year with great achievements from Mattie Miracle. THANK YOU!"

Tuesday, November 1, 2011

Tuesday, November 1, 2011 -- Mattie died 112 weeks ago today.

Tonight's picture was taken in November of 2006. Mattie loved to paint and spent a lot of time on the floor of our living room using paint brushes, sponges, and at times even used his hands and feet to create with paint. As you can see here, he assembled this dinosaur model and then wanted to paint it. Mattie assembled many wooden models in his short life, several of which I still have all around our home. Before Mattie was born, if someone told me I was going to allow paints and paint brushes in our livingroom, I wouldn't have believed it. But when Mattie was interested in activities, I tried to support and nurture that interest. Needless to say, I became an expert on how to remove paint and play-doh from all sorts of things.

Quote of the day: If ever there is a tomorrow when we're not together…there is something you must remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart…I'll always be with you. ~
Winnie the Pooh

If I could give Mattie a voice now, I imagine he would be expressing exactly what Winnie the Pooh stated above. Well that is of course if Winnie the Pooh were an actual and real life character. To some extent, the joy, innocence, and love that embodies Winnie the Pooh lives within each of us. It is a challenging reality to know that like so many moms, I had a child, raised him, and then he got sick. Many children get sick with all sorts of things, but very few develop multifocal osteosarcoma (bone cancer in numerous bones at the time of diagnosis) and then died. Now that two years have passed since Mattie's death the only reminders I have that he existed are his things, pictures, and naturally his ashes which are in our dining room in an Italian made music box.

I think holidays and events evoke certain feelings and emotions in me. I am not a Halloween fan per se, but seeing this special or fun child holiday come and go yesterday was simply hard to accept. Imagine if you are a parent, that you are told your child has cancer, and worse after an ardous battle, that there is nothing left that can be done, and your child is going to die. It is an absolutely horrific and surreal experience, and yet this is our reality. My hunch is this reality is hard to fathom for my readers, and after all, why would you even want to imagine this even for a second. Losing your child redefines your life, what you talk about, the activities you do, and most of all it has a profound impact on your outlook about day to day living and the future. In so many ways it is very challenging for me to be friends with people who are moms. Moms talk about their children, a very natural and understandable thing. Yet how much of this can I absorb, when I know I am not living this life anymore? At some point, I find I just shut down, and this is where I am right now.

I am not in a writing mood tonight, so I am signing off for the evening, but want to leave you with two messages. The first message is from Mattie's oncologist and our friend Kristen. I am saddened to know that Kristen is relocating with her family from the Washington, DC area. We will greatly miss her presence. I condensed her message and the part which I did not include in the blog was the incredible juggling act she was performing last week as she continues to get ready to move out of town. Kristen wrote, "As I write this to you...I am surprised I made it through the week. But it makes me only appreciate more the skill, reserve, and perseverance which it took the two of you to manage a home, job, and family...all while Mattie was so sick. In times when I think things are difficult I only have to remember the two of you and I put life, with its little difficulties, in perspective. Thinking of you this Tuesday and everyday."


The second message is from my friend and colleague, Nancy. Nancy wrote, "As I read your latest entries and viewed the Halloween pictures of Mattie, I felt a real tug on my heart. Your writing is always meaningful, however, for some reason, telling some stories of this child important day gave new meaning to your grief and loss. I consider you Mattie's parents always and in every way, even in death, and as I reflect on my own children and grandchildren I understood how difficult days and activities of this nature have to be for Peter and you. It saddens me each time to realize the depth of your sorrow. I wish that I had a magic wand to erase these last few years of loss. What I will focus on today as another Tuesday without Mattie is upon us is the way that you give to him each and every day, not just on a 'fun' day."

Monday, October 31, 2011

Monday, October 31, 2011

Tonight's picture was taken in October of 2008, the last Halloween Mattie celebrated. I captured him on the Hospital elevator as he was going trick or treating from floor to floor. He was energized for that adventure but once it was over he was exhausted and very depressed. Mattie collected a good deal of candy that Halloween, but the ironic part was Mattie did not like candy. He spent a good portion of his time post-Halloween, sorting the candy he collected into piles by type, and literally he sold his candy to me and his caregivers for pennies. I do recall that year, when Mattie went trick or treating with Zachary, that a few houses gave out pretzels and chips. Mattie was thrilled, Zachary wasn't as much. The beauty of friendship was that Mattie and Zachary swapped chips for chocolate, and in the end they were both happy!

Quote of the day: Happiness is not a reward --- it is a consequence. ~ Robert Green Ingersoll


This afternoon, I received an email from Linda, Mattie's Childlife Specialist. Linda reflected in the email to me that she saw a child dressed up in a mummy costume in the hospital today, and couldn't help but think of Mattie. Linda's email meant a lot to me, because I find as time marches on it is very easy to feel very disconnected from others and from this child based holiday.

I still remember the process of how Mattie chose to be a mummy for Halloween in 2008. By October 31 of 2008, Mattie had completed his first limb salvaging surgery. His right arm was bandaged up in fact, and therefore Mattie was very cognizant of his differences and wanted a costume to hide his arm. The Lombardi Clinic, thanks to Hope for Henry (another pediatric cancer organization), is given hundreds of costumes each year for children who are sick. That year, Linda, Jenny and Jessie (his art therapists), allowed Mattie to be the first one to go into the clinic room to pick out a costume. The selection process for Mattie was harder because of his physical disability, and though this was never stated, I appreciated the fact that these women understood this. It would have been much harder for Mattie to find the right costume with the other children running around him and asking him questions. As soon as Mattie spotted the mummy costume, he knew this was what he wanted to be. He even tried on the costume right there in clinic, and it really worked for him. In a way, it made him feel like everyone else, because you couldn't see his bald head or bandaged arm.

Mattie celebrated Halloween in 2008, both in the hospital and with his preschool buddy Zachary. This evening, I went back to the blog on Halloween of 2008 and came across this picture of Zachary and Mattie together. Zachary was Indiana Jones and Mattie was according to Zachary "a Mummy Dude." The reflection that I wrote in 2008's blog, remains quite vivid in my mind today. But then again, I think the kind of friendship Mattie and Zachary had with each other was very special. I wrote, "While trick or treating, Zachary and some of his neighbors who went around with us, were running ahead in excitement from door to door to collect candy. However, Mattie was having a hard time keeping up (he had surgery about two weeks before Halloween). Mattie expressed his dissatisfaction and was getting upset. The beauty of what I observed next, I will try to describe. Zachary was absorbing what his mom was saying to him regarding Mattie, and also he was hearing or seeing Mattie's level of frustration. Zachary then told his neighbors that Mattie was his friend, and Mattie couldn't move as fast as them right now, and if they did not like it, they could trick or treat without him. It was almost hard to believe this dialogue was coming from a 6 year old. Because to me this was a very mature and thoughtful comment, and speaks to the strength of their relationship, a relationship that evolved over two years in preschool. When I see Mattie interacting with his friends. It is always hard, because I know he can't do the things they are doing now, and I know this can upset him at times. But then I also notice that through these rough times, I see the beauty of those around us. Zachary's simple comment today was case in point. Friendship goes beyond one's physical abilities and limitations, and instead is defined by something much greater, such as respect, loyalty, trust, and the sheer enjoyment of being with another person. I observed this tonight."

This evening Ann sent me a picture of her son wearing the Creeper mask I created. This is the second costume I have designed for one of Ann's children. The first one was a Greek goddess tunic. Fortunately when Ann asks me to do these things, she doesn't mention that a costume contest is involved. That would probably stress me out! Two years ago, Ann's daughter won a contest wearing the tunic I created and tonight apparently Ann's son won the "most creative" costume award at their neighborhood parade. So I would say I am 2 for 2! This is the most upbeat news I have to share for the day.

I never left our home today and I found by the time Peter got back from work I was snapping at him left and right. Certainly not intentional, but some times it is easier to take one's aggressions out on those closest to us. Though it was Halloween today, for me, it was as if I was living on a completely different planet, disengaged, isolated, and not fitting in. It seems with each year as we move further away from Mattie's death, the holidays only get harder, more complicated, and uneasy.

Sunday, October 30, 2011

Sunday, October 30, 2011

Tonight's picture was taken in October of 2007. Mattie was five and a half, in kindergarten, and was very excited about all the festivities associated with Halloween at his school. Mattie's lower school hosts a Halloween parade on October 31, and Mattie was thrilled to be able to show off his costume and to see the other costumes on display. That year Mattie chose to be an air force pilot, after he was enamored by his trip that spring to Andrews Air Force base. The challenging part about all of this was the only kids costume I could find was of a Navy pilot. So literally, I landed up removing the Navy patches on the jump suit, and thanks to my friend Charlie (a former Lt. Colonel in the Air Force), I was able to stitch in Air Force patches onto the costume. In addition, my neighbors found this adorable hat for Mattie, in which I attached more Air Force patches, and by the time we were finished, Mattie was a great looking pilot. It took many of us that year to complete this costume, and I am so happy my friends helped me, because Mattie knew the difference between a Navy and an Air Force pilot, and wanted to be accurate.

Quote of the day: The lines of giving are complicated, you never know how it will come back. But you have to give because you can't let the cord break with you. ~ Maria Diarra Keita


This is the second weekend in a row that Peter and I went to the movies. Totally unheard of for me! My parents and Karen recommended another movie to us, Moneyball. They knew Peter would love it because it focuses upon the game of baseball. However, because of the story line, they felt I would like it too. They were correct! I must admit though, through Peter, I have seen enough Red Sox games on TV, to have a feeling for the game and the stresses associated with playing.

Moneyball is based on a true story, which is most likely why it captured my attention. The published synopsis of the movie is:
Oakland A's General Manager Billy Beane is handicapped with the lowest salary constraint in baseball. If he ever wants to win the World Series, Billy must find a competitive advantage. Billy is about to turn baseball on its ear when he uses statistical data to analyze and place value on the players he picks for the team.

Bennett Miller, the movie's director said the following, "It is very much a film about baseball, but I saw it as a film about a guy whose life did not turn out the way it was supposed to …the way it had been described to him. He had a destiny that he was going to be great and it took him more than a decade before he accepted that things were not going to happen and now he could accept that this is his life or he could begin to question what had happened."

The premise of this movie, whether you are a baseball player or not, speaks deeply to all of us as human beings. We all have some sort of expectation, hope, or plan with regard to how we see our life unfolding and what our future will look like. Unfortunately our dreams do not always become a reality, in fact, some times life throws you a curve, and then what happens? It is easy to give up, lose faith, hope, focus, and determination. In fact I would say it is much harder to regain control and direction in your life when an expectation is NOT met than it is to actually make a dream come true. So though I do not have the foggiest clue about baseball, I related to the main character in the story, and admired his ability and courage to think differently and always stand by his convictions to make a difference. In fact, if you see the movie, you may be disappointed with the final outcome in the story. After all, we are programmed by society to believe the most successful person earns the most money! But Brad Pitt's character, Billy Beane, helps us understand that there is more to life than earning $12.5 million dollars. In fact, sometimes it is about loyalty to others and self, and changing the mindset of a particular industry (which is NO easy undertaking with professional baseball, or sports in general).

To read more about Moneyball, click on this link:
http://www.voanews.com/english/news/arts-and-entertainment/movies/drama/In-Moneyball-Baseball-Manager-Builds-Winning-Team-the-Unconventional-Way--130567918.html

As we are on the eve of Halloween, it is hard not to stop and think about Mattie and the loss in our lives. Today, Peter and I were both in Mattie's room, and as we were glancing around at his things, we realized we had to leave the room. No comments were necessary. As children all around the U.S. tomorrow dress up and acknowledge the day, we can't help but reflect on yet another event Mattie will be missing. A day which continues to remind us that we lost Mattie and we are no longer parents. Each season provides its own overwhelming challenges for us, and the Fall is filled with so many obstacles from the beginning of school, Halloween, Thanksgiving, and let's not talk about Christmas. For others around us, their worlds continue, they evolve, grow, and change, and for us, our world stopped on September 8, 2009. Yes will plug along each day, and most people would say we are functioning and accomplishing. Yet there is a difference between being these things and feeling alive.  

Saturday, October 29, 2011

Saturday, October 29, 2011

Tonight's picture was taken in October of 2003. Mattie was a year and a half old. Mattie was not wild about wearing costumes at all. Which is why all of his costumes typically were easy and comfortable to wear. Mattie gravitated to bright and bold colors, and he loved pumpkins. He made a very cute pumpkin that year and in 2003 that was his first year going trick or treating. We went with his cousins who were living in Washington, DC at the time, but Mattie had mixed feelings about the whole experience. Remember Mattie did not like candy, so going out to collect candy was not a motivator at all. As he got older, though he still did not like candy, he enjoyed going trick or treating with friends and running around in the dark and checking out pumpkins and Halloween lights.

Quote of the day: Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling into at night. ~ Edna St. Vincent Millay

It snowed in Washington, DC today! This is the first time DC has seen such cold temperatures and snow in October since 1979! Peter was outside in our garden transferring our trees into our home. Typically we do not need to winterize our trees until November, but since it was in the 30s today, we started pulling in plants. The transfer included our lemon tree, fig rubber tree, dracena, pygmy date palm, 2 cat palms, and a croton. If you could only see my living room! These are NOT small trees either. While Peter was outside in the snow, I snapped a picture of him. You can't see the snow very clearly, but you will have to take my word for it. The snowflakes were huge.

We spent the entire day at home. The weather did not inspire us to leave, which was fine, because we had to clean out and reorganize our front hall closet. That alone took hours.

I am happy that in the midst of being couped up at home and focused on chores, that we planned to go out to dinner tonight with new friends. My friend Heidi, from Zumba class, suggested that we all go out to dinner with each other. As my faithful blog readers know, Heidi is an avid blog reader herself, which is how she knew who I was when I walked into zumba class that very first day. Heidi has been very kind and thoughtful to me in class, and when I heard her husband is from Boston, I figured this would be a good match for Peter too. Many of my friends live in Alexandria, VA and over time I have gotten used to commuting to them, rather than the other way around. However, Heidi suggested we meet in DC and have dinner in town. This was a first for me. We went to a restaurant I have wanted to try for years and we had a great time together. We were at dinner for over four hours, and what I want to comment on is the Boston Red Sox connection. Peter and Heidi's husband, Phil, were chatting about the Red Sox and other Boston teams. The table next to us, I am sure had heard our conversation throughout the evening, but did not say anything. That is until it was time for us to have dessert. At which point, they leaned over and recommended the chocolate lava cake. We got to talking with them and Heidi asked where the couple was originally from. It turns out that the man was from Connecticut, and naturally as a New Englander, he was a major Red Sox fan. The next thing I knew, this fellow, Peter, and Phil were chatting amongst each other about the Red Sox. This couple even shared their after dinner wine with us (talking about the Red Sox can do that to people!). It was quite the scene, and from my perspective I would seriously like to do a sociological study on.... the culture, personality, and interpersonal bonds among Red Sox fans. It is an immediate identifier, and links people together instantly, from ALL around the world. In fact, I would even say that the Red Sox connections are so instantaneous that they trump other commonalities between people including religion, school, profession, and geographic identities. 

However, the camaraderie did not end there. Our waiter overheard us chatting and he chimed in as well. He was not a Red Sox fan, but a Yankees fan, and this added a spark to the evening. Socializing with people can be challenging for Peter and I. Especially if the people did not know Mattie or the battle we survived and continue to experience. In fact, I would even say it takes a certain amount of courage to want to re-engage with others and let people into our lives while grieving the loss of a child. Mainly for me the reason is I know I am different. Most days I feel like I am more a part of the sick or terminally ill world, than the healthy and thriving world. So I always wonder what will I talk about and will I relate at all to any of the conversation? That fear went out the window tonight, and we all had a good time chatting and getting to know each other. I was happy to see Peter engaged, talking, and having a good time. So despite the weather, dinner was the highlight of our day.