Saturday, March 19, 2011

Saturday, March 19, 2011

Tonight's picture was taken in May of 2004. Mattie and I were sitting on the couch together, most likely watching a movie. But it must have been a Disney movie, or something sentimental that caused me to be teary or upset. Peter somehow captured that moment in time, a moment which now seems to foreshadow the sadness that entered our lives in 2008.


Quote of the day: JOY is a deceptive trap; grief is the real preceptor, teaching caution, circumspection, discrimination, detachment, awareness and vigilance. ~ Atharva Veda


Tonight's quote truly resonates with me. Grief has and continues to be quite a teacher. In a way, experiencing the loss of Mattie enables me to see, hear, and feel on a higher plane. If that is possible, or even makes any sense. I have seen the absolute worst life has to offer, and I also realize that bad things can and do happen on any given day. They can happen to any of us. I do not corner the market on hurt, pain, and loss. Innocent people and children are affected each day with all sorts of tragedies and traumas. Many of us do not like to reflect on this, unless you happen to be on the unfortunate ones directly affected.

When I woke up this morning, I assumed Peter was out doing his usual walk around Roosevelt Island. However, to my dismay, I found him on the couch and he was very sick. Peter has been vomiting for a good portion of the night and into the morning and was extremely dizzy. So dizzy that I could see his eyes involuntarily moving and darting back and forth. It was a very frightening sight. So I immediately called the doctor and she prescribed him Zofran. She wanted to know if we were familiar with this drug. Peter and I could give a course on anti-emetics, after Mattie's battle with cancer. Zofran was one of the initial drugs given to Mattie to help with nausea. So I ran to the pharmacy to pick up this medication for Peter. However, from my perspective I felt Peter was having a bout of Vertigo. He had an episode like this years ago, which is why I remember it so vividly. When someone you love is SO sick, it isn't something you quickly forget.

I monitored Peter most of the day, and Zofran helped his nausea, but did nothing for his head which felt like it was spinning. Vertigo in a way, I imagine, feels a lot like motion sickness. Something I know quite well, however, with motion sickness I know what causes my symptoms. With Peter, we have no idea what triggers his Vertigo. I don't do well with NOT knowing.

This afternoon, I gave Peter Tylenol PM, because without it, there was NO way he was going to shut down and rest. While he was sleeping, I went to visit Mary, Ann's mom. I helped Mary with dinner and kept her company for a couple of hours. While at the assisted living facility Peter text messaged me to let me know he wasn't feeling better. So I sat on Mary's bed and together we made a phone call back to our family doctor. I happen to like our doctor very much and I was lucky she was the one in the practice on call this weekend. This time, she prescribed Antivert for Peter. This is a drug specifically for Vertigo. It is my greatest hope that somehow Peter wakes up feeling better tomorrow. It has been a very debilitating day for him, and though I have been keeping it together, I am worried about him. We rely on each other a lot, and when one of us is down, the whole team is DOWN.

I received a news blurb from my friend Charlie this week. She wanted me to know about the Super Moon that is out tonight. I of course have renamed it the Super Mattie Moon. As many of my readers know, Mattie's nickname in preschool was Mattie Moon. So the moon, to us, is our earthly connection to Mattie. I copied the information below about tonight's Super Moon.

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THE SUPER MOON

Got plans for this weekend? If you find yourself anywhere with a clear sky, make sure you have a look up at some point to witness the largest moon in almost two decades starring back at you.


On Saturday, March 19, the moon will will be just 356,577 kilometers from the Earth, its closest in 18 years. Astronomers say an event like this has happened 15 times in the last 400 years. From Yahoo! Canada:

Supermoon’ happens when the moon is marginally nearer to Earth in its orbit than normally, and this effect is most remarkable when it happens simultaneously with the full moon. It is given the name Supermoon since the actual alignment is very distinct and as a result, one might think it would have some effect. The “super” in the expression supermoon, is actually just reference to the fact that it only gives the impression of it being nearer, but in reality there is no difference.

Scientists dismiss that a moon of this nature is linked to anything with the disaster in Japan. “Even though the moon affects the Earth’s tides, it cannot spark great earthquakes,” said NASA scientist Jim Garvin.

Speaking of tides, the Irish Water Safety organization issued a warning to the public today saying that “Supermoon” tides might increase the risk of people becoming stranded.

“This has the effect of causing very high and low tides, or increasing the range of the tide,” the news release says. “This will expose large areas of beach and rocks which we normally don’t see. Many people enjoy walking on our beaches and exploring these new areas of beach and in particular people enjoy picking shellfish to eat which become exposed during these very low tides.”

Officials recommend carrying a cell phone just in case you run into any problems. The next supermoon is scheduled for November 14, 2016.
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Despite Peter not feeling well, we both went outside to see the Super Mattie Moon! What I love about this picture is you can see the moon, but you can also see our daffodils. They were blowing in the wind tonight. They are located right near the outdoor light in the ivy. Peter planted daffodil bulbs in our commons area last year. This particular area is where Mattie had his stick collection (on every nature walk we did with Mattie, he would always find a stick, bring it home, and add it to his stick collection in the ivy). So in a way, when I see the daffodils in this space popping up during spring time, it reminds me of Mattie's happy face.

A close up of the Super Mattie Moon!

Friday, March 18, 2011

Friday, March 18, 2011

Tonight's picture was taken in April of 2004, on Mattie's second birthday. One of the gifts Mattie received that year was a plastic toy fire station. Included with the toy were all the sounds you would associate with a fire station. Mattie loved this toy set and it was one of his favorites for the longest time. Birthday parties were not easy for Mattie early on in life. The noise level and commotion bothered him. He eventually grew out of that, but this picture was taken before the party began. Mattie was happy, smiling, and being two.

Quote of the day: It's so curious: one can resist tears and 'behave' very well in the hardest hours of grief. But then someone makes you a friendly sign behind a window, or one notices that a flower that was in bud only yesterday has suddenly blossomed, or a letter slips from a drawer... and everything collapses. ~ Sidonie Gabrielle Colette

Peter and I attended the inaugural People Against Childhood Cancer (PAC2) workshop today. PAC2
represents the advocacy community and its mission is to raise awareness of childhood cancer. They strive to take ACTION as "One Voice United Against Childhood Cancer!" PAC2 was founded by Bob Piniewski, in honor of his 14 year old son, AJ, who died in January of 2008. To learn more about PAC2, please visit:
http://curechildhoodcancer.ning.com/


What I immediately learned from attending this meeting is that there are hundreds (maybe thousands) of foundations in this Country dedicated to addressing pediatric cancer. When I say addressing, I mean foundations are either raising money to support research, they are enhancing awareness and education, and/or are tangibly meeting the support needs of children and their families. Many foundations were created by family members in the memory of a child who lost his/her cancer battle. However, what is VERY evident to me is that this community is quite fragmented and not unified. The goal of PAC2's workshop today was to pull us together, brainstorm our needs, and plan a course for a unified direction.

As we all know, there is strength in numbers. As I was listening to all the groups in attendance discussing their issues, it became very evident to me that a professional association designed to meet the marketing, media, lobbying, professional development, and strategy building needs of our pediatric cancer community is crucial. Perhaps I have lived in the world of academia too long, but I know the value of being part of a professional association. It gives you a voice, access to trained professionals to guide your growth and development, and it also serves a vital role interfacing with the public. Professional associations promote public awareness and lobby on one's behalf with the community, and to me this is the ultimate way to build awareness for our pediatric cancer cause. It is very challenging for foundations to build out a platform for pediatric cancer awareness and advocacy, when we are in the trenches each and every day to keep our own organizations growing and thriving.

An immediate observation I made today, while looking around a room of 50 people, was that moms outweighed dads in the room. You could count the number of men in the room on two hands. This is not an unusual occurrence, since I observed this gender difference within the hospital too. Moms basically take point for their children's cancer care. However, for Peter and I, this wasn't the case. Though Peter HAD to work during the day (since we needed an income and HEALTH INSURANCE!!!), he was always present. He stayed at the hospital every night and slept (if that is what you can call it living in a PICU) on a slab of a cot, helped take care of Mattie throughout the night, and then went to work the next day. How he managed that is beyond me. Peter was a dedicated dad when Mattie was well and when Mattie was battling cancer. So I realize my experience may have been different from other families within the room today. Peter rarely gets recognized for his role, or let me put it this way, he doesn't get as much feedback as I do, so therefore I felt my observations were WORTH mentioning.

To give you an idea for the NUMEROUS pediatric cancer groups out there, I have listed the ones in attendance today. Clearly you can see that this is a very emotionally laden and passionate issue, which is why SO many parents create organizations and foundations to address the cause.

1) 46 Mommas Shave for the Brave
2) Aimee's Army
3) Alex's Lemonade Stand Foundation
4) American Childhood Cancer Organization
5) Andrew McDonough B+ Foundation
6) Arms Wide Open Childhood Cancer Foundation
7) Band of Parents
8) Bear Necessities Pediatric Cancer Foundation
9) Caleb's Crusade
10) Childhood Cancer Advocates
11) Children's Brain Tumor Foundation
12) Children's Cause for Cancer Advocacy
13) Children's Neuroblastoma Cancer Foundation
14) Children's Oncology Group
15) Cody's Crew
16) ConKerr Cancer
17) Cookies for Kids Cancer
18) CureSearch for Children's Cancer
19) Friends of Will
20) Gold Rush Cure
21) Grace Oughton Cancer Foundation
22) Keaton Raphael Memorial
23) Kids Kicking Childhood Cancer
24) Kids v Cancer
25) kidsStrong
26) Layla Grace Foundation
27) Mattie Miracle Cancer Foundation
28) Max's Ring of Fire
29) PLGA Foundation
30) Rally Foundation for Childhood Cancer Research
31) Rock Against Cancer
32) Solving Kids Cancer
33) St. Baldrick's Foundation
34) The Henry Tucker Foundation
35) The Lily Fund
36) The Pablove Foundation

For three days now (between the CureSearch events and PAC2), I have been focused on pediatric cancer issues and telling Mattie's story. Throughout the process, which has been very draining, I met some wonderful people, who started some fabulous organizations. I made a "new friend" in the process. I met Melanie yesterday while advocating on the Hill, and we also sat next to each other today. Melanie Goldish, in October of 2002, founded a non-profit called SuperSibs.

The mission of SuperSibs is to "Ensure that siblings of children with cancer are honored, supported, and recognized so they may face the future with strength, courage, and hope." Melanie and I instantly identified with each other, since we both speak the same psychosocial language. Before Peter and I left the event today, we posed for a picture with Melanie. The backdrop behind us is art work that siblings of cancer patients created. The art was an expression of their feelings, fears, and hopes. As a person who loves art and self expression, I greatly appreciated this resource and outlet that Melanie and her organization provides siblings. For more information about SuperSibs, please visit: http://www.supersibs.org/index.html

Though today's event went until 5pm, Peter had to get back to work, and I had to report into the DC Licensure Board for a special meeting. So we left early. However, before we left, Melanie helped to organize an entire group photo! I look forward to reconnecting with several of the wonderful people I met over the last three days, and hopefully sharing our common mission with one another.

After my licensure board meeting, I headed to visit Mary (Ann's mom). As soon as Mary saw me she said, "there is my old faithful." Mary knows when Ann goes out of town, I try to step in and visit her. I don't replace Ann, but I am a good distraction. Having spent so much time with Mary over the past two years, I have gotten to know her friends and family. Especially when they call her on the telephone. Many of her callers now speak to me as well! As many of you know, Mary also has a new roommate at her assisted living facility. Mary's roommate is in her 90s and is as sharp as a tack. She is blind however, but recognizes my voice. She knows me by name and we really enjoy chatting with each other.

When I got home tonight, Peter and I sat outside on the deck. It was in the 70s today in Washington, DC and felt like spring. All our bulbs are blooming, and things seem to be coming to life. A sight we REALLY need to see. I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy wrote, "You not only talk the talk, YOU WALK THE WALK in all phases of your campaign to honor Mattie and assist any family dealing with this dreaded disease. I have told you often how proud I am to have learned about your family and call you my friends. I do not use this label frivolously; to me a friend is one whom I can be myself without reserve, and give to openly and when needed, generously. I am amazed by all that you have endured and had to learn to advocate, not only for Mattie, for anyone who needs a "Helping Hand." Thank you for your remarkable endurance and stamina in making a difference for humanity. I was blown away by your writings of the last few days. You took in a lot and learned a lot. As always, you were prepared and met with as many legislative aides as possible. I know that positive results for increased funding will come about in the future. It has to with both of you in this arena. With love always and in all ways. P.S. Your comments about Mattie and being a kid in spite of Cancer was very special. I see how reading Keaton's words would cause you to pause and think of all the months Mattie endured the changes to his body. This shows how play is a child's work. It never took away his indomitable spirit. Thanks Mattie for coming into each of our lives and making such a splash!"

Thursday, March 17, 2011

Thursday, March 17, 2011

Tonight's picture was taken on St. Patrick's Day in 2009. It is hard to believe that two St. Patrick's Days have passed us by without Mattie. It just seems impossible to understand how this is possible. Team Mattie gave him these wonderful shamrock things, and on his way out the door to clinic that day, he wanted to get dressed up for the occasion. This is one of my favorite pictures of Mattie, because despite all he was going through, he still wanted to have fun and be a kid. Which from my perspective was extraordinary, considering how cancer impacted Mattie physically and psychologically.

Quote of the day: In this world, whose family is there without blemish? Who is free from sickness and grief? Who is forever happy? ~  Chanakya



I spent over six hours today on Capitol Hill. This was my very first time going to the Hill alone. That may not sound like a big deal, but for someone who is directionally challenged like myself this is a major feat! I can get lost very easily, and I find the labyrinths or maze like hallways in many of the buildings on the House side of Congress very disorienting. With a map in hand I managed!

CureSearch had an opening program today at the Capitol Visitor Center. The line to get into the building was daunting, since there are extensive security procedures you have to follow to gain admittance. Because it took me a significant amount of time to enter the building, I missed the first several minutes of the opening program. As I entered the auditorium, I could see and hear that Rep. Chris Van Hollen (D-MD) was speaking to the crowd about THE MATTIE MIRACLE CANCER FOUNDATION and his work with us to promote the psychosocial needs of children with cancer and their families. At first I couldn't believe what I was hearing. I had never expected Rep. Van Hollen to be acknowledging us, but in that moment of time, I was happy in thinking that perhaps Peter and I are making a difference.

I met with two Senate staffers and two House staffers. So literally I was crossing all over the Capitol grounds. On my visit to Senator Mark Warner and Senator Jim Webb's offices, I had around 20 other parents and children with me. It is challenging to advocate for an issue with so many families. Mainly because we all have a story to tell and it is hard to balance these stories and communicate our "ask" effectively. However, despite our sheer numbers, we did make the process work. I have learned over the years (when advocating for mental health issues on the Hill), that it is important to know as much about the issue and the facts as possible before meeting with a staffer. They ask intelligent questions, and to have a meaningful dialogue, it is important to be up to speed on the issues. So last night to prepare for today, I read up on each of the four issues and created a one page cheat sheet of facts on all four issues for myself. Needless to say this fact sheet came in handy today.

In the process of my visit, I met two lovely moms, both of whom lost their daughters to rhabdomyosarcoma, cancer of the muscles. I find it fascinating that we all related and clung to each other. As I have said numerous times of this blog, losing a child to cancer, gives you admission into a special club. We understand pediatric cancer and we also understand in many ways how cancer destroyed our lives and that we no longer fit in or relate to the world around us. It is a hard feeling to describe, however, when I talk to a mom who has lost a child, words aren't needed. The feelings are simply understood and lived! I had the opportunity to have lunch with these ladies as well and we exchanged information with each other so that we can remain in touch.

At the opening program this morning, an 11 year old boy named Jack spoke. Jack is a brain cancer survivor and gave a testimonial of what it was like to live with cancer, how the treatments affected him, and how it impacted his family. He says he has to work harder at school because his treatments affected his cognitive abilities, and that he has to work harder at sports because he doesn't have the same physical stamina and strength as the other children. It was a very courageous and humbling presentation, and I find it very poignant hearing about pediatric cancer directly from a child.  

This is a picture taken with Senator Mark Warner's Health Legislative Assistant, Elizabeth Falcone. Elizabeth is wearing purple, has long brown hair, and is two people over from me on the left. As you can see, Elizabeth heard from many of us today. Everyone in the room was either a parent of a child who had cancer, or a pediatric cancer survivor.

I took this picture of the group, so I am not in it. We met with Maribel Ramos, Senator Jim Webb's Legislative Assistant. Maribel is the third person from the left, wearing brown.


After the visit to Senator Webb's office, I then met with Marcia Knutson, Rep. Jim Moran's Health Legislative Assistant, and Ray Thorn, Rep. Chris Van Hollen's Legislative Director, who is working closely with the Mattie Miracle Cancer Foundation.

Wednesday, March 16, 2011

Wednesday, March 16, 2011

Tonight's picture was taken in April of 2004. This picture absolutely cracks me up because it shows Mattie at his best. He was the ultimate multitasker. As you can see he was in pajamas, and yet was waving a flag, drinking milk, and who knows what he was doing with a baseball hat on his head! He was a busy fellow who required two things at all times, regardless of where we were. The first was activity and stimulation and the second was a sippy cup of milk. Literally he and I never traveled anywhere without a little cooler filled with milk. I learned that lesson quickly with Mattie. I only had to forget the cooler once, to realize there was no way I was leaving the house without provisions. 


Quote of the day: I answer, there is nothing in this world which has no heart, which is incapable of feeling joy or grief, Only you must have the eye to see, the ear to listen, the heart to respond. ~ Sri Sathya Sai Baba


I began my morning by reading a message from Karen. Karen is the mom I met through email, who also lost her son to Osteosarcoma. Today she posted on Keaton's (her son) website a message Keaton wrote about how he felt while undergoing chemotherapy. His message was vivid and well written. It helped me understand how Mattie must have been feeling, and yet was unable to really verbalize these pains, fears, and side effects to me. After all, how many 6 year olds understand nausea and delusions from pain medications? Keaton's voice was loud and clear through his essay. His essay made me pause, because I realized I never knew from verbal reports how Mattie was feeling. As his mom, I understood behaviors and his actions, but it saddens me to know deep down that Mattie suffered in the same way Keaton did. Keaton's message helped me to see that. While Mattie was undergoing chemotherapy, I was managing all sorts of issues and crises on a minute by minute basis. On some level I tried to help Mattie through each and every hurdle, yet now when I sit back and think about what he truly endured, I can only say that Mattie was remarkable. Most of us would have given up living altogether trying to cope with just one of his issues. But when you add up this surgeries, his chemotherapy, his radiation, his psychological side effects from treatment, and not to mention the constant and intense pain from cancer in his bones and throughout his body, it leaves you speechless and in awe. Mattie was remarkable, handled so much, and yet found the energy to want to play and to want Peter and I close to share in his love. Needless to say, this was a very powerful revelation to start the day with.

Peter and I attended CuresSearch's Advocacy Training today. It was a half day event which will be followed by visits to Capitol Hill tomorrow to lobby on four issues in particular. For those of you unfamiliar with CureSearch, they are a national non-profit foundation which funds the lifesaving research of the Children's Oncology Group (COG). The COG is the world's largest, cooperative children's cancer research entity. It is comprised of over 210 member hospitals worldwide, 6500 physicians, nurses, and researchers.

While nearly 13,500 children and adolescents are diagnosed with cancer each year, there are many different kinds of children's cancer. When divided into the specific cancer types, the number of children with each is relatively small. In research, large numbers of patients are critical to ensuring that study results are meaningful. By enrolling patients from many hospitals in the same trial, the results become statistically significant. This approach is called collaborative research and is how the COG functions. You should ALSO note that unlike adult cancers, enrollment in clinical trials is standard practice for children with cancer. Perhaps because the last NEW FDA approved cancer drug came out over 20 years ago and this drug can only be used for leukemia.

Peter and I heard from the following professionals today:

1) John Lehr, President and CEO of CureSearch
2) Chuck Todd, NBC White House Correspondent
3) Gavin Lindberg, VP of Legislative Affairs of Health and Medicine Counsel of Washington
4) Dr. Peter Adamson, Chair of the COG
5) Laura Bunten, from Congressman McCaul's office
6) Ray Thorn, from Congressman Van Hollen's office
7) Nancy Goodman, Founder of Kids V Cancer
8) Susan Weiner, Founder of Children's Cause for Cancer Advocacy


I must admit for the longest time I have been quite confused over the relationship among CureSearch, the COG, and NIH. Things became clearer to me today. For the fiscal year 2011, the proposed budget for the National Institutes of Health is $31 billion and the proposed budget for the National Cancer Institute (one of the 27 institutes of NIH) is $5.1 billion.  Out of this $5.1 billion that the National Cancer Institute (NCI) receives, only $200 million is devoted to researching pediatric cancer. One step further, out of this $200 million, $41 million goes to CureSearch, who then funds the COG. Is your head spinning yet???!!! No wonder why it took me over a year to get this straight. It does explain in my mind why these entities are so intertwined with each other, because without NCI's funding, the majority of funding getting funneled to the COG for clinical trials would be NON-existent.

There was one participant who stood up today and in my mind asked a brilliant question. She said this was her first time attending a CureSearch event and wanted to know if it made sense to not only lobby and advocate on Capitol Hill but perhaps also with the NCI? I was impressed with this woman because in just one session she could see that there is something in this equation that makes NO sense. How can NCI be giving billions of dollars each year, and only a small amount be allocated for pediatric cancer. It seems like we need to understand how to change that, and I couldn't agree with her more.

Dr. Adamson, the chair of the COG, gave a beautiful greeting today. He strikes me as an intelligent and compassionate doctor, who really wants to enlighten us or call us to action. He explained that all pediatric cancer drugs used today arose from the 1950s, 1960s, and 1970s. He says that the only thing that has changed over the years is the actual amount of chemotherapy drugs we give children. He said the amounts or dosages are actually at toxic levels. Which is why 80% of children in treatment experience toxicity and severe consequences. He also went on to say that this would never be allowed  in the adult cancer world. Adult treatment doesn't send the patient into toxic shock. When you think about how we are poisoning our children as we try to heal them, it is down right frightening. No wonder a majority of children with cancer who survive have devastating long term effects. How could they not when their developing bodies are being exposed to toxins, toxins that have only been researched on an adult body!

Later in the afternoon, there was an advocacy training piece offered by a company called Soapbox. The trainer was full of energy and had quite a sense of humor. Under most circumstances, I would have probably found his style at least entertaining. However, as a mom who lost a child to cancer, sitting and watching him not only infuriated me, but made me very upset. He did a mock congressional visit up on the stage with three participants. During the mock session, two participants landed up crying because they were reliving the fact that their children died. Naturally this comedian/trainer did not process this well, and certainly did not help his audience handle this. Hearing these stories up on stage effected us greatly, I know I landed up crying, and yet he brushed over that, gave us NO strategies for what happens when tears come and you are talking before a group of people and congressional staff. My overall reaction was..... this man has no idea who he is talking to and how is demeanor was perceived.

Tomorrow, I am headed to the visit the following offices, so it shall be another busy day: 1) Sen Mark Warner; 2) Sen Jim Webb; 3) Rep James Moran; and 4) Rep Chris Van Hollen. I would like to note that the highlight for us today was seeing Ray Thorn, Rep Van Hollen's Legislative Director. Ray announced to all the attendees the exciting work the Mattie Miracle Cancer Foundation is doing on the Hill to increase awareness of the psychosocial needs and services for children with cancer and their families. We appreciate Ray's efforts, support, and acknowledgments.

Tuesday, March 15, 2011

Tuesday, March 15, 2011 --- Mattie died 79 weeks ago today.

Tonight's picture was taken in April of 2004. As you can see, with the beginning of spring, Mattie was in his favorite location.... in his sandbox on our deck. Once Mattie learned to appreciate sand, he couldn't get enough of it. We spent many warm weather days out on the deck together. This frog sandbox remains with us today. It no longer sits on the deck, but right outside our deck door in our commons area. There are many children who stop by on nice weather days to play in the box. I still haven't gotten over seeing children playing in Mattie's sandbox, nor have I adjusted to hearing the sounds of children playing from my kitchen window. Those sounds bring back memories of Mattie, and in a way they remind me of what Mattie was deprived of, a chance for a simple childhood and a long lifetime.


Quote of the day: Love remembered and consecrated by grief belongs, more clearly than the happy intercourse of friends, to the eternal world; it has proved itself stronger than death. ~ Dean Inge (Dean of St Paul's, London)

On the 79th week of Mattie's death, tonight's quote seemed quite appropriate. Mattie's brief life continues to be remembered in us each and every day. In fact, through grief and writing about our grief, one can easily see the love that existed among the three of us, a love and longing that causes intense grief. Grief for me has evolved. It isn't something I consciously think about anymore, instead, it is simply ingrained in me. I know it is always a part of me, it clouds my feelings and thoughts, and it has become like an additional appendage. Except unlike an appendage, this figurative one is very heavy, it slows me down, and it takes me to some very challenging places. Love is indeed stronger than death, and I think in many ways grief helps to process this love, understand it, and keep it alive.

I had a busy day today focused on all sorts of things. I am ramping up the preparations for the three part kindergarten art series and I went to AC Moore this morning to purchase all sorts of supplies. AC Moore is one of my favorite stores to roam around in, and having a list of items with me helped to keep me focused. Otherwise I have found that it would be easy to wander around and become distracted by other interesting items and potential projects. I have been thinking, for months now, about how to make Picasso and Matisse more tangible to six year olds. Things are finally coming together in my head and I look forward to telling you about the first session on March 30. Needless to say, in each session we will be talking about content, learning about these artists' lives.... even what they were like as a child, seeing the art work, doing hands on art projects, and finishing off the session with a themed snack.

Between running around today, I stopped at a restaurant to have lunch. The irony is prior to Mattie's illness, I would never have gone out to lunch alone. The whole thought would have made me uncomfortable, since I always viewed eating as a social experience. However, since cancer struck my world, eating has become a rather unpleasant experience. I find that I need a certain level of peace, calmness, and no time limit to eat. So I no longer feel uneasy at all being out by myself. I always travel with a book and this is a good distraction for me. I am reading a fictional novel entitled, Handle with Care, by Jodi Picoult. This is a story about a little girl who was born with a genetic disorder called Osteogenesis Imperfecta. Basically this disease produces weak bones, which makes one susceptible to fractures. The author does a wonderful job describing the complexities of this disease and how it impacts the quality of life for the entire family. Needless to say I am engrossed in the book for many reasons such as its exploration of medical ethics and personal morality. While reading over lunch, I came across this sentence ......"A dutiful mother is someone who follows every step her child makes. A good mother is someone whose child wants to follow her."

This sentence stopped me in my tracks today. In fact, it made me reflect on my relationship with Mattie. I never thought about motherhood in the way that Picoult described, but if I do, then by her definition I was a "good mother." I most certainly was dutiful, but Mattie always stayed close and always wanted to be a part of everything I did. Perhaps it was the realization of what his physical proximity to me back then really meant, it meant (naturally) that he wanted to be around me, he wanted to do things with me, and it symbolized our love. That whole notion sent me spiriling in thought. I suppose it is in those moments, that I miss Mattie even more than my usual minute by minute feelings.

This evening, I had another opportunity to chat with my parents by phone and to update them about Mattie's Foundation and the amazing progress we are making for the Walk. I know they are proud of our accomplishments and yet sensitive to the fact that I am not always good at putting my personal needs and health before others and my obligations. The beauty of being a parent is your primary objective is your child's best interest. I observed that tonight, and naturally this was something I always implemented with Mattie.

I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Kristen wrote, "So little time to think today...but just a note to let you know despite this lack of 'thinking' time you were thought of... This Tuesday and everyday."

Monday, March 14, 2011

Monday, March 14, 2011

Tonight's picture was taken in April of 2004. I remember this moment in time, because Mattie was sitting at our table having a piece of his birthday cake.... the day after his party! As I was trying to snap a picture of him he felt the need to grab the camera from me. As you can see he clearly got a good laugh out of trying to do this! Mattie was two years old in this picture, full of life, with beautiful color in his cheeks, and there was NO indication that an aggressive cancer was developing inside of him.


Quote of the day: There is neither happiness nor misery in the world; there is only the comparison of one state to another, nothing more. He who has felt the deepest grief is best able to experience supreme happiness. We must have felt what it is to die, that we may appreciate the enjoyments of life. ~ Alexandre Dumas


After an amazingly LONG and challenging weekend of web design, Peter and I are happy to launch the Mattie Miracle Cancer Foundation Walk website today. I encourage our readers to visit the site and learn more about the walk, meet our featured "Faces of Hope," check out our exciting activities, and consider having friends and family pledge money for you to walk at the event. Your support is vital to us. Support could be financial support, participation at the Walk, and/or promoting our Walk on your facebook page and listservs. Getting the word out about the Walk is crucial to our success and I thank you for helping us with this endeavor. Visit: www.mattiemiracle.com/; then click on Cancer Walk



This morning, Peter and I alerted our Walk planning committee of the Walk website launch. Throughout the day I have been getting very cute and hysterically funny e-mails. I have been called Vicki...aka webmaster and Vicki.....computer technology and web design pro! This makes me laugh, because I am technologically challenged. Without Peter, I would still be sitting at the computer most likely tearing my hair out. Peter is the web designer in our house and I help with the logic and content of populating the website. As I say to Peter, even under great stress we still work well together. We have different skill sets, that when pooled together allows us to accomplish great things.

I had the pleasure of spending time with Margaret today. As many of my faithful readers know, Margaret was Mattie's first preschool teacher at Resurrection Children's Center. When Mattie entered Margaret's classroom, he was fragile, and I wasn't too far behind him. He was misunderstood by many, and after having a terrible montessori preschool experience the previous fall, I was hesitant about school in general. Mattie and I both instantly related to Margaret. In fact, after my first interaction with Margaret (during an admission playdate), I told Peter we had to get Mattie into her classroom somehow. Thankfully the school took a chance on us, and what resulted was two memorable and enriching years in preschool.

The ironic part was Margaret was Mattie's teacher, however, what I never bargained for was that Margaret and I were going to become friends. Mattie made that possible. Today was Margaret's birthday, and I enjoyed spending the day with her. We had lunch together, exchanged gifts (yes, I got a gift too, and it wasn't even my birthday), and walked by the Potomac River. As usual, four hours flew by, but Margaret and I are very good at talking and appreciating each other.

Later in the day when I got home, I called my mom. Making phone calls is not my forte anymore. It is a by-product of raising Mattie and battling cancer with him. Mattie despised me being on the phone. My parents have gotten used to my lack of phone calls, but I need some input this week on a couple of pressing issues, and live chatting beats an email any day. I think my mom was surprised that I called and yet we were both very happy to be chatting with each other. There are MANY psychosocial long-term effects on me of surviving Mattie's battle with osteosarcoma. Many of which revolve around the phone. I do not like talking on the phone, and yet my blackberry is constantly attached to me, as if some vital message is going to be email or text messaged to me. Logically I know that makes no sense, but fear, sadness, and grief do not always make sense!

This evening, I received a beautiful email from my friend, Christine. As many of readers may recall, Christine is Campbell's mom. Mattie and Campbell were very close friends in kindergarten. As they became close, so did Christine and I. In fact we spent many afternoons together after school. With Mattie's death, Campbell lost a close friend, which is challenging for such a young, bright, and sensitive mind to process, but it is also a tremendous loss to Christine and I. Our worlds no longer intertwine. Despite that, we work hard on staying connected, and as I told her, sometimes I feel no one truly gets how I feel. However, after reading her message today, I had to re-evaluate my feelings. As I enter Donna's classroom in a few weeks to do a three part kindergarten art series, Christine will be coming in with me. I welcome her help, support, and opportunity to do something together involving children. Christine wrote, "I have been keeping tabs on you through the blog. I am honestly blown away by what you have accomplished in a year. I absolutely HATE that our lives have taken different paths, but I want to make sure that they cross OFTEN and, while I can't come close to feeling what you are going through, I do understand and empathize with your feelings especially as they relate to unrealized futures, healthy kids/family life, etc. It takes an extraordinary person (or couple) to find a way to help others after losing so much yourself. I think about that all the time."

Sunday, March 13, 2011

Sunday, March 13, 2011

Tonight's picture was taken in April of 2004 during one of our weekend walks around Roosevelt Island. This was a typical activity for us as a family and as you can see when Mattie got tired of walking, he would hop up on top of Peter's shoulders. Mattie loved traveling around this way because he felt he had a bird's eye view of everything from up there.

Quote of the day: The life that neither grief nor burden knows is dwarfed in sympathy before its close. The life that grows majestic with the years must taste the bitter tonic found in tears. ~ Ella Wheeler Wilcox


Today looked a lot like yesterday. Peter and I were both very focused and busy working on the Foundation Walk website. By the afternoon, I was getting tired, snappy, and in desperate need of a change of scenery.

Peter planted all sorts of bulbs in our commons space in the Fall, and now we are reaping the benefits of his hard work. Today the crocus were blooming and signalling to us that spring was definitely here.

Peter and I took a much needed break today and went out for a late lunch and then walked around Roosevelt Island. That was Peter's second walk on the Island today, since he gets up very early each weekend morning to walk there. As soon as we crossed the bridge taking us to Roosevelt Island this afternoon, the first thing we noticed up in the sky was the moon. Naturally we both immediately thought of our Mattie Moon (a nickname Mattie was given in preschool).

Due to all the rains we have had recently, parts of the Island seemed flooded. Of course the ducks and seagulls were absolutely THRILLED. I saw more ducks on the Island today than I have seen in years. Mattie would have been so excited and would have wanted to feed them. With Mattie I always travelled to the Island with crackers. Without Mattie, my level of preparedness has significantly decreased! 

Peter snapped this wonderful picture today of the ducks. However, these ducks were right near the boardwalk, in an area that Mattie loved to explore. The area is filled with Cedar trees, and if you look closely in the water, you can see the ducks swimming around the cedar knobs (or literally the root system of the formation of another tree). Mattie loved the cedar knobs and we always joked that these knobs looked like knees!







Before I left the Island, I snapped this picture. As you can see the trees are barren, but I know in just a few weeks this landscape will begin to look very different. I anxiously await greenery and warmer weather!

This evening Peter and I have been riding an emotional roller coaster. We thought we had made significant headway on our Walk web page and then all of a sudden the entire page and Foundation website disappeared. Peter has been working through the issue with our system's help desk, but none the less, this is not what we needed after spending two entire days straight on this project. Hopefully with any luck, we will be up and operational again soon. Nonetheless, the help desk fellow was intrigued by Mattie's story and gave Peter his personal email address so he could assist us! Mattie continues to touch the lives of those around us in a very innocent, special, and beautiful manner.