Mattie Miracle 10th Anniversary Walk was an $119,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

September 18, 2010

Saturday, September 18, 2010

Saturday, September 18, 2010

Tonight's picture was taken in June of 2009. Mattie spent a night at Ann's house, so that Peter and I could take a break. In fact, the Hospital gave us a gift certificate to stay at a local hotel, and though taking time for ourselves was foreign at that point, we did go. I naturally had apprehensions about being away from Mattie that weekend, but he was looking forward to his first sleepover at a friend's house. Little did I know at the time that this was going to be his first and last sleepover. There is something about this picture that intrigues me. Mattie and Abigail were sitting together in front of her house, and though we can't see their faces, to me their posture tells a story. I get the feeling that Abigail was trying to engage Mattie, and Mattie seemed to be in a comfortable position and focused on something on the ground in front of them. My understanding was earlier that day they went digging for ants in the dirt! However, what also gets me about this picture was the stark contrast between Abigail and Mattie's body types. Abigail is clearly healthy, and Mattie was frail, without hair, and slumped over. Yet despite their differences, they found a way to make their friendship work, and I guess in the end that is what makes this picture very memorable, because you can tell this without having to see their faces.

Quote of the day: Your heart has brought great joy to many. Those hearts can never forget you. ~ Flavia Weeden


Mattie and his story have touched many hearts. Over the last two weeks, I have been fortunate enough to receive e-mails from several people who did not know Mattie, Peter, or myself. However, for various reasons these individuals started reading the blog months or over a year ago, and are now daily blog readers. I so appreciate these women reaching out to me and sharing their stories. I am deeply touched to hear how Mattie's story has changed their lives and perspectives, and in a way, their feedback does make me pause and understand that Mattie made a difference in this world. He was able to do this in seven short years, but I continue to be amazed to learn how his precious smile and contagious energy brought joy to those around him. Even those who never knew him beyond a picture.

Peter started the day by taking Ann's oldest daughter, Katie, to her soccer game. In addition, to taking Katie, he also coached the team today in Bob's absence. Peter played soccer in high school and in college, so I know this is a sport he knows well and enjoys. Clearly coaching a team would have most likely been something Peter would have had the opportunity to do if Mattie were alive, but this is no longer an option. So in a way, I think today's experience was good for Peter. Peter is very good with children of all ages, and really knows how to relate to them and encourage them in positive ways. This is an outlet that is missing in Peter's life, and an aspect of him that isn't being nurtured.

It was a busy day with weekend activities, playing, homework, and even cooking a dinner from scratch. Katie took a cooking summer camp this year, and last night the kids decided they wanted to participate in the dinner planning process. So today Katie and I went out grocery shopping and at 1pm we started cooking. The cooking process did not end until 8pm. You may be asking what were we cooking? Well we made homemade potato gnocchi, german potato salad, a tomato and mozzarella salad, and peach filled crepes. It was an international dinner of sorts. I can safely say I know why most people do not make pasta from scratch anymore. It is a laborious process to put it mildly! I recall when I was growing up my mom's mom made homemade pasta. I remember the flour, eggs, and the rolling pin that she would take out, and she would be working on this for hours. I took her efforts for granted, but after today, I have a greater appreciation for her labor of love.

This afternoon, I went to visit Mary (Ann's mom). Mary is aware of the fact that I am watching Ann's children this weekend. When she saw me today, she refused to keep my visit long. She was worried about me, my energy level, and all that I was balancing. If I had any doubt about how Mary felt about me, I think today's gesture spoke volumes. Mary has a deep understanding of the emotional toll Mattie's death has had on me, and views all the things I do from this lens. Not everyone does this or can appreciate my daily struggles and pains. Mary lives my struggles and gets them.

Tonight, over dinner, we went around the table and each of us got a chance to discuss our day's highs and lows. As I mentioned to Ann last night through a text message, and then told the kids tonight, my low is different from my usual LOW. Typically at Ann's house, her family knows that my usual low is that Mattie is gone from our lives, but tonight's low was taken a step further. After spending two days being responsible for Ann's children, it just screams out to me what I am missing in my life. I have been trained to be a mom, to nurture someone, but my 'someone' was taken from me. I certainly know this on a daily basis, but being around children does further confirm the loss at a much bigger level.

Tomorrow, we will be spending part of the day with Ann's children before she returns home. Returning back to our home is always an adjustment, and as Peter told the kids tonight, their energy is contagious, and somehow it breathes life into us.

September 17, 2010

Friday, September 17, 2010

Friday, September 17, 2010

Tonight's picture was taken on June 15, 2009. The day of Mattie's sternotomy. It was very early in the morning, and Mattie had a team of people around him trying to take his mind off of his third massive surgery. Tricia, Mattie's outstanding HEM/ONC nurse (in aqua) was with us, along with Linda (Mattie's childlife specialist), and Dana. Linda asked Dana to come in and cheer Mattie up that day. Dana is a Georgetown student but she is also an amazing juggler. She entertained all of us that morning. She literally took our minds off what was going to happen next. The irony is Linda engages children, but what I quickly learned was I needed Linda just as much as Mattie did. Linda assessed situations and people beautifully, and honestly I am not sure how we would have ever survived without her. The energy in Mattie's PICU room that day was electric, and I think it made a difference as he went into surgery, because he handled it so well, and his recovery went SO quickly.

Quote of the day: The conventional explanation, that God sends us burden because He knows that we are strong enough to handle it, has it all wrong. Fate, not God, sends us the anguish. When we try to deal with it, we find out that we are not strong. We are weak, we get tired, we get angry, overwhelmed. We begin to wonder how we will ever make it through all the years. But when we reach the limits of our own strength and courage, something unexpected happens. We find reinforcement coming from a source outside ourselves. And in the knowledge that we are not alone, that God is on our side, we manage to go on. ~ Harold Kushner

I have been absorbing information all week as it relates to pediatric cancer. I have tried listening to what others have gone through with their children, and one thing that keeps surfacing in these conversations is the role of a mental health professional during the time of a pediatric cancer crisis. I think so many of us hope that when we deal with social workers and psychiatrists in various hospital settings, that they will have the training and sensitivity to really help support us and our families through cancer. After all, I can't think of a more relevant and needed time for support and intervention than when you receive a cancer diagnosis, when you undergo treatment, as well as when treatment ends. However, I think so many of us who have battled with cancer realize that our mental health providers do not always understand us or our situation.

Initially some of you will recall that I had many issues with the social work team assisting us. I was told initially that I wasn't handling the news of Mattie's cancer well (because I was numb and showed no emotion), and was also escorted during Mattie's first hospital admission (where he was going to receive chemo) to the hotel on the University's campus because these professionals felt that I needed a break and shouldn't spend 24/7 with Mattie. In fact, though I realize all of these interventions were implemented to help me, at the time, they only angered me, and caused more stress. It took a while for the staff to get to know me, and trust that if I needed help, I would ask for it. Mattie's social worker, Denise, learned quickly that asking me to take a break, WASN'T going to happen. I wasn't going to leave Mattie's side, and I could see she grew to respect that as well as my decisions. She then helped the rest of her staff understand my view point. But here is the thing. As mental professionals we are so ingrained to diagnosis and assess for issues. Under normal circumstances, when you see a person not sleeping and under intense stress, the immediate response naturally is to try to address it, and perhaps throw therapy and a support group at the problem. That however is exactly the problem! Nothing about pediatric cancer is NORMAL and therefore how you treat children and their families under such conditions must be examined in a different light. I think it seems very understandable for a parent to feel anxious, stressed out, angered, and even depressed when dealing with pediatric cancer. These are normal reactions, and instead of medicating them or trying to cover them up, I think it is important to accept these fears head on. Mental health providers need to be our advocates during this process, rather than labelling us as problematic. I continue to be amazed by the stories I hear from parents whose children have cancer, and I so appreciate these connections. Because it is through these conversations, that our Foundation can help to improve the quality of psychosocial services available to families.

As I write tonight, I am extremely tired and am struggling to put words together. For the next two days, Peter and I are staying at Ann's house and spending time with her children, while she and Bob are away. Naturally over the course of this last year, I have spent a great deal of time with Ann's children. So watching them now is almost second nature. We are all very used to each other. I had the opportunity to chat, play, and eat with the kids tonight, and I suppose watching them and being responsible for them, made me reflect on who was especially missing in my life. At times it is hard to believe that Mattie isn't right next to me here, in the mix of things. I also had the opportunity to see Mary (Ann's mom) today. As I was leaving her assisted living facility, Mary said to me that she wished she could buy me a gift. She wanted to try to express her gratitude to me for coming to visit her when I can. My response to Mary was I needed NO gifts. The gift is our friendship, and with that, she smiled.

In addition to there being a cupcake week (which I wrote about last week) in honor of childhood cancer awareness month, September is also Make a Wish Month at Coldstone Creamery. Charlie sent me this information, and I wanted to pass it along to our readers, since I continue to be impressed with the organizations who are trying to make a difference for children and their families fighting cancer.

All month long, Cold Stone Creamery is helping make wishes come true for children with life-threatening medical conditions. Visit any Cold Stone Creamery store and show your support for the Make-A-Wish Foundation by purchasing a Make-A-Wish paper star for just a dollar!
http://www.coldstonecreamery.com/promos/makeawish/index.html

Thursday, September 16, 2010

Thursday, September 16, 2010

Tonight's picture was taken in June of 2009, right after Mattie's sternotomy. Though I try not to show Mattie in compromising positions with tubes hanging out of him, to me this picture is peaceful. Mattie was finally comfortable and fell asleep and was able to rest. Notice who was on the chair with him, YES SPONGE BOB, dressed as a pirate. My all time favorite character (I am JOKING!!!). After Mattie's sternotomy, I will never forget that Team Mattie filled a treasure chest with toys, and delivered it to the hospital. These toys were used as incentives to get Mattie up from surgery, to get him to exercise his lungs, and to cheer him up. This treasure chest was very symbolic to us and I actually kept it a long time after Mattie's death. Until April of 2010, when I returned it to Linda at the Hospital. The chest symbolized Mattie's community, it symbolized the love and support we had, and it symbolized a time in our life where we thought we had removed all tumors from Mattie's body. This pirate Sponge Bob was one of the wonderful gifts that Mattie found when he opened up the chest. Needless to say, I still have this stuffed animal in Mattie's room today.

Quote of the day: Needed: A strong, deep person wise enough to allow me to grieve in the depth of who I am, and strong enough to hear my pain without turning away. I need someone who believes that the sun will rise again, but who does not fear my darkness. Someone who can point out the rocks in my way without making me a child by carrying me. Someone who can stand in thunder and watch the lightning, and believe in a rainbow. ~ Joe Mahoney

Today was emotionally draining. More so than I would have imagined it to be. Peter and I began our day with a breakfast on Capitol Hill. Thanks to Rep. Sestak's office and CureSearch, we were invited to a breakfast and the opportunity to attend the Pediatric Cancer Caucus' Panel Discussion. At the breakfast, we had the opportunity to chat with key staff members from Rep. Sestak's office and Rep. Van Hollen's office. We had met both of these wonderful individuals at CureSearch's Day on the Hill event in June, and it was lovely to reconnect with them. We also had the opportunity to meet several other individuals who are doing wonderful work to help families stricken by cancer. In particular, I met the executive director of a Childhood Brain Tumor Foundation, based in New York. This gentleman was warm and sensitive, and wanted to hear more about Mattie. He acknowledged how challenging it must have been for Peter and I to attend this event, and simply stated, he just understood, though he hadn't lost a child of his own.

The mission of the bipartisan Pediatric Cancer Caucus is to serve as a clearinghouse for information on pediatric cancer and a forum to aid Members of Congress in working together to address pediatric cancer. The Caucus strives to raise awareness about pediatric cancer, advocate in support of measures to prevent the pain, suffering and long-term effects of childhood cancers, and works toward the goal of eliminating cancer as a threat to all children. The Caucus is chaired by Representative Joe Sestak and Representative Michael McCaul and was launched in June of 2009 to better direct Congressional resources and efforts to the cause of preventing pediatric cancer.

There were three panel discussions this morning that ran for about two hours. We heard from several politicians connected to the Caucus, as well as several distinguished members of the oncology community such as Dr. Peter Adamson (Chair-elect of the Children's Oncology Group), Dr. Susan Blaney (Deputy Director at Texas Children's Cancer Center), Dr. William Evans (Director and CEO of St. Jude Children's Research Hospital), Dr. Melissa Hudson (Director of the Cancer Survivorship Division of St. Jude), Dr. Eugenie Kleinerman (Head of Pediatrics at MD Anderson Cancer Center), Dr. Kevin Oeffinger (Director of Adult long term follow up program at Sloan-Kettering), and Dr. Susan Weiner (Founder and President of the Children's Cause for Cancer Advocacy). Below you will find some interesting facts we learned and some of the pictures Peter was able to capture from the event.

We learned from Dr. Evans that St. Jude is involved in a $60 million pediatric cancer genome project, which is desperately needed for targeted therapies. Specifically, "St. Jude Children’s Research Hospital and Washington University School of Medicine in St. Louis recently embarked on the largest initiative to date aimed at understanding the genetic origins of childhood cancer.The team is joining forces to decode the genomes of more than 600 childhood cancer patients who have contributed tumor samples throughout the years. Scientists in the St. Jude Children’s Research Hospital –Washington University Pediatric Cancer Genome Project will sequence the entire genomes of both normal and cancer cells from each patient, comparing differences in the DNA to identify genetic mistakes that lead to cancer." http://www.stjude.org/SJFile/GenomeProm.pdf

 
We heard from Rep. Chris Van Hollen (D-MD) this morning. He is a Caucus member and one of the original co-sponsors of the Carolyn Walker Pryce Conquer Childhood Cancer Act.












Presiding over the panels today was Rep. Michael McCaul (R-TX). He is one of the co-chairs of the Caucus.
















Rep. Joe Sestak (D-PA) is the co-chair of the Caucus and a strong advocate for pediatric cancer families. Joe explained to the attendees how his daughter, Alex, was diagnosed with brain cancer, and how this affected his family, and in a way their future.











We had the opportunity to reconnect with Rep. Deborah Pryce (R-OH) today. I first met her in June at the CureSearch Day on the Hill. Deborah moderated a portion of the panel today, and is considered a championing advocate for Pediatric Cancer by her congressional colleagues.

In June 12, 2008 (Bethesda, MD) – CureSearch National Childhood Cancer Foundation saluted the United States House of Representatives for passage of H.R. 1553, the “Caroline Pryce Walker Conquer Childhood Cancer Act,” which promises to significantly increase federal investment into childhood cancer research. During markup of the legislation, the bill was renamed the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, in memory of Caroline Pryce Walker, daughter of Congresswoman Deborah Pryce (R-OH), who succumbed to neuroblastoma in 1999 at age nine. The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatments and research for children with cancer and their families.


We heard from Rep. Jim Moran (D-VA), a Caucus Member this morning. The representative spoke from the heart and let us know that his daughter Dorothy is a brain cancer survivor. His recollection of her diagnosis and the impact of this diagnosis on his family was so moving that I landed up crying while he was talking. Fortunately I was able to catch my breath, because if he continued I would have had to leave the room. He did mention that he rarely talks publically about Dorothy, but despite this happening many years ago, he can vividly tell the story as if it happened yesterday. His comment that remained with Peter and I was that there are three ways we fight pediatric cancer......cutting, burning, and poisoning. All three are simply inhumane ways to treat a child, and he felt we need to give our children better treatments with fewer lasting side effects.


We also heard from Rep. Jackie Speier (D-CA). She is a member of the
Caucus, and also introduced the
Childhood Cancer Survivorship Research and Quality of Life Act of 2009. The bill, also known as the Childhood Cancer Survivorship Act, would lead to improved health for the growing number of survivors of childhood cancers by improving and expanding the delivery of medical and psychosocial care to survivors of childhood cancer.

You should note that at least 50% of children who do survive cancer are left with significant long term side effects, which could mean things like diabetes, heart disease, sterility, mental health issues, and the development of secondary cancers (as a result of toxic treatments)!


At the end of the event, we approached Rep. Joe Sestak. Joe knew of our story through Ann. Joe was so moved by the loss of Mattie and I could tell he deeply felt compassion for us. He literally hugged and kissed me, and in essence he did not have to say anything. It was in that moment that we were parents connecting through our cancer experiences. We are part of the same club. It is obvious to me that Joe deeply loves his daugher, who is an only child. I admire his connection to her, the way he captures her spirit as he talks about her, and I admire his desire to help other children and families battling cancer.


Many of the panelists today discussed what congress could do to support the pediatric cancer battle. Particularly by supporting three forms of legislation. However, here is the sad part of all of this. There is NO economic incentive for pharmaceutical companies to invest the time and dollars to creating drugs to combat pediatric cancers. Why? Because in the grand scheme of things, only 1% of the cancer market applies to children. In comparison to adult cancers, childhood cancers are ALL orphan diseases. Think about it this way, there are about 12 million adult cancer survivors in the US, whereas only 328,000 childhood cancer survivors. It is a numbers game, and there is NO profit to designing drugs to treat children. It seems hard to swallow to hear this rationale, especially if you are a parent with a child who has cancer. It is even harder not to jump out of my chair and throttle someone knowing that Mattie died because in all reality it isn't economically profitable to study osteosarcoma and develop better drugs to combat this nightmare. Also note that many pharmaceutical companies were invited to this event today and NONE of them attended. I am not sure how these people live with their decisions each day, and I just hope that none of them are personally affected by pediatric cancer, because I would think it would be a bitter pill to swallow knowing that their own decisions prevented their own children from having the chance to survive cancer.

Three forms of legislation that the panels asked to be supported today:

On January 4, 2002, President Bush signed the Best Pharmaceuticals for Children Act (BPCA) to establish a process for studying on-patent and off-patent drugs for use in pediatric populations, and to improve pediatric therapeutics through collaboration on scientific investigation, clinical study design, weight of evidence, and ethical and labeling issues. http://bpca.nichd.nih.gov/about/index.cfm

On December 3, 2003 the Pediatric Research Equity Act of 2003 (the "Act" or "PREA") was signed into law. The Act essentially codifies the Food and Drug Administration's so-called "Pediatric Rule," which became effective April 1, 1999, but was invalidated in October 2002 by a D.C. federal district court as exceeding FDA's statutory authority. Under PREA, sponsors submitting a new drug application ("NDA"), biological license application ("BLA"), or supplemental applications on or after April 1, 1999 must include "assessments" of safety and efficacy for all relevant pediatric populations for "claimed" indications. PREA also allows FDA to require pediatric assessments for already marketed drugs in certain circumstances. http://www.hoganlovells.com/files/Publication/2dafec52-5ce4-4ed0-add7-21281473730b/Presentation/PublicationAttachment/6c2869ed-d9d5-4b2c-ac63-df4e3047b68b/791_FDA_Update_REA_031223.pdf

The Creating Hope Act of 2010 will encourage the creation of new drugs for underserved children who suffer from serious and rare medical conditions, including life-threatening cancer, by providing a voucher to pharmaceutical companies who develop such drugs. This voucher would be used for any other drug -- particularly a blockbuster drug -- to receive FDA expedited approval, which would allow that drug to be delivered to market faster. The voucher would constitute a strong, market incentive for pharmaceutical companies to develop drugs for children with serious and rare diseases, such as cancer. The Act builds on the "FDA Amendments Act of 2007," which established a voucher for drug development for neglected tropical diseases. http://www.fiercebiotech.com/press-releases/kids-v-cancer-supports-creating-hope-act-2010


When I got home from today's event, I was thoroughly worn out. I am not sure why, but I do think that the content discussed is so emotionally laden for me, that some times it is hard to internalize it at times. I came home and Peter and I spent some time together before he headed back to doing work. I literally had to shut down for 90 minutes today, because I wasn't functioning well. This evening, Peter and I went out to dinner with Dr. Aziza Shad and Tim Mooney, associate administrator for the Department of Pediatrics at Georgetown University Hospital. As some of you may recall, I recently met Tim at the Hyundai Hope on Wheels event at Georgetown. We instantly clicked and it was so nice of him to plan this dinner for us tonight. We had a wonderful time connecting and getting to know each other better. Tim's life has also been affected by cancer, and we share mutual admiration for one another. Tim is a blog reader, and reminds me how powerful the blog really is and is advocating for me to write a book. Tonight's dinner had no agendas, it was about people truly connecting with people, and that was a refreshing and much appreciated concept.

September 15, 2010

Wednesday, September 15, 2010

Wednesday, September 15, 2010

Tonight's picture was from June of 2009. Mattie was in the hospital recovering from his sternotomy, to remove the 9 tumors in his lungs. To me this picture is priceless. Mattie was VERY up that night, working on a creative project. Mattie's nurses had his number. That particular night he was kidding around with them and telling them how loveable he was. So they asked him if they could kiss him. He agreed to this. So you can see Sarah Marshall (on the left, Mattie's angel of Mercy, who was also with us the night before and into the morning of Mattie's death) and Ellen (one of our favorite all time night HEM/ONC nurses!) making Mattie feel special. The cancer battle is technically over, but the visions and feelings left behind from this fight are VERY real, as well as the extraordinary nurses we had the privilege of getting to know in the process.

Quote of the day: I was sitting, torn by grief. Someone came and talked to me of God's dealings, of why it happened, of why my loved one had died, of hope beyond the grave. He talked constantly. He said things I knew were true. I was unmoved, except to wish he'd go away. He finally did. Another came and sat beside me. He didn't talk. He didn't ask me leading questions. He just sat beside me for an hour and more, listening when I said something, answered briefly, prayed simply, left. I was moved. I was comforted. I hated to see him go. ~ Joe Bayly


As many of my readers know, yesterday was a down day for me. I feel some weeks that I live on an emotional roller coaster, and fortunately today the ride was going up rather than further down. What explains this turn? Most likely the emotional support I received today in person, through mail, and email.

I received a lovely book of quotations in the mail today from my friend and colleague Denise. This book means a great deal to me, because as you can see I have migrated back to starting each blog entry with a quotation rather than poetry. In 2008, I began the blog with quotations, and then later adopted poetry to express intense grief in the year following Mattie's death. However, maybe to some extent it is symbolic that I journey back to quotations now. The book Denise sent me is entitled, "Forever Remembered." Inside the book's cover it reads: Chances are you received this book from someone whose heart is filled with love and is reaching out to yours. We love you. We share your pain. Gently, gradually, these heartfelt words from friends and family help us realize that life may end, but love is endless." Tonight's quote came from this book, and why I selected it was because it is very meaningful and very poignant. When you are helping someone who is grieving, there are no words that can really be said to make the situation better. There are NO techniques. Instead, the reason why grief work is so hard is it requires patience, a listening ear, and an open heart. As this quote expresses, great comfort can be felt when sitting with someone who isn't asking you questions or espousing to have the answers to your loss. So in essence we as human beings are naturally programmed to help each other through grief. We have the necessary tools need (ears and a heart) however, my hunch is the reason why we shy away from helping those who are grieving is out of fear we will say or do something wrong, and because we have been socially programmed not to talk about death and dying. What a commentary about our world. I can certainly say having helped two people die in 2009, you are not going to experience more real dialogues or emotions then under such circumstances. I have learned a great deal about living through watching the process of dying.
   
I met my friend, Christine for lunch today. I met Christine in 2007 at the St. Stephen's and St. Agnes School. Her son Campbell, and Mattie were very close friends in Kindergarten. Kindred spirits in a way. They understood each other, were bright, sensitive, and had a creative imagination. Over the course of Mattie's kindergarten year, while the boys played after school, Christine and I got to know each other quite well. When Mattie developed cancer and then died, this of course changed the frequency of which Christine and I see each other. However, cancer and death did not change how we feel about each other, which I realize I am fortunate to report. In fact, Christine is the person who suggested a tree gathering to acknowledge Mattie's first anniversary, and I am so glad she did, because in retrospect this was the right thing for us to do for ourselves, the community, and Mattie.

Christine and I sat down and chatted for hours. She said several things today that made me reflect on Mattie, how special he was, and what a force he was. Christine understood Mattie right from the moment she met him. In July of 2009, Christine had Mattie come to her house for literally 8 hours to play with her children. This enabled Peter and I to have a break from our hospital like life at home, and to celebrate our wedding anniversary. That day, Peter and I chose to plant our gardens on our deck, and though that may not sound romantic, to us being outside in the fresh air, without hearing noise was a beautiful gift. While we were planting, Christine recalled today what Mattie was doing at her house. He was very active and played for hours. Though Mattie was in pain and did not like to be carried around, he did ask Christine several times to carry him up and down the stairs at her house so he could continue playing. Christine acknowledged today how hard that must have been for Mattie to ask for help, and yet he trusted her enough to carry him correctly. Christine also gave the kids lunch that day, and today she reflected on how Mattie really wanted to join the kids to eat, but when surrounded by food, he literally couldn't eat anything. Now of course we know why, because he his cancer spread to his stomach. At that time, though, we thought his lack of appetite was the after effects of being on chemo. Nonetheless, Christine did not push Mattie to eat, but she said she could tell Mattie felt badly about not eating. He wanted to do what the other kids were doing, and he also wanted to show Christine that he appreciated her efforts. In the end though he did not eat and Christine helped normalize that for Mattie. As Christine was reliving her day with Mattie, I began to cry. I could picture the day as if I were there. Christine shared more stories, and told me how Mattie's loss is still on the minds and hearts of her family members. She said she gets upset thinking that none of us will ever see the wonderful man Mattie was destined to become. This is so true, as I see Mattie's friends age, I always wonder what would Mattie have been like now? For Peter and I, Mattie is locked at the age of 7, and there he will remain in my heart. After a day like yesterday, I needed a day like today to connect with Christine. To hear from a friend that I am not the only one grieving, that I am not alone in my feelings, was very helpful. Christine also gave me a Pandora charm to add to the bracelet Margaret got me. The charm is in the shape of a cupcake, which brought an immediate smile to my face. As Christine knows, I am trying to create a Pandora bracelet of charms that capture Mattie's memory and spirit. The cupcake is simply perfect and is sitting very happily next to my sun charm!

As the day continued on, my lifetime friend, Karen was emailing me. In one of her emails she said, "you turn people into better people." She was trying to tell me about the impact I am making on others through the blog and through my friendships. Mind you she is a teacher, and works during the day, but periodically on breaks checks in on me. As she was walking through the hallway of her school, she just happened to type this one liner to me. I told her I wasn't sure when I received a nicer compliment, and after the day I had yesterday, these kind words were taken to heart!

I then received an email today from a young woman I never met before. She lives in England right now and is studying to become a commercial airline pilot! Laura is the niece of Peter's boss. I had no idea she was a daily blog reader, but after I read her message I was deeply touched by her comments and sentiments and asked her if she would allow me to post them. So when some of you ask how does Vicki get up each day, and how is she surviving day to day? Well the answer lies in numerous acts of kindness that are given to me through our community! Laura wrote, "I realise that we have never met, I've only met Peter once or twice through my Uncle Grant. You should know that pretty much every night I read your blog, there's something that you say that sticks with me through the following day. A sign of not only a good writer, but also a good teacher. After reading yesterday's blog (I read a day behind because of the time difference), I wanted to let you know that I have not forgotten that you are in pain. I do not expect time to heal you and I find it hard to believe that others do. I actually doubt that they do expect that of you; I think that they're just very wrapped up in what's going on with them at the moment and so forget to be considerate of your hurt. Especially when you seem to me to be a pretty fantastic woman! I admire you every day that I read you have been helping someone, setting up a charity (!), hanging out with your friends' children, not to mention writing a very eloquent and thoughtful blog. Really Vicki, I do! I can only imagine that people either momentarily forget that you have a heavy heart or do not want to make you feel pain in what appears to be a moment of happiness. I started reading the blog regularly last summer when I was staying with my Aunt, Uncle and little cousins. Mattie was obviously talked about by the four of them (the boys wear Mattie bands) and so I started checking in on the blog too. Especially after meeting Peter. I'm not sure how I would describe your blog, for me it brings great perspective to my daily 'dramas'. I also feel that you are writing a blog for people to read and remember Mattie- I want him to be remembered too, so I read it and talk about it with my family and close friends. I imagine that it's also therapeutic for you. I have thought to write many times, but often do not hit 'send' as a) I tend to ramble when I write and b) we have never met and I wasn't lucky enough to meet Mattie. Tonight I felt compelled to write to let you know that for sure, your son and loss have not been forgotten and that I, for one, do not expect anything of you-let alone for time to 'heal' you. I do however hope that time will help you find some extra happiness in other areas of your life, to try and balance out the pain a little."

After dinner tonight, Peter and I heard what sounded like fireworks outside our window. So we stepped outside on the balcony, and sure enough right by the Kennedy Center were amazing fireworks in celebration of National Hispanic Heritage Month. I grabbed my camera and Peter captured one of the sights we saw tonight.

Since Mattie's birth, capturing moments on camera were important to me. I learned never to travel without a camera and always had a camera in my purse. This continues to be the case today, and I can only reflect on the fact that if it weren't for my camera, I would have lost incredible memories of Mattie throughout time. I naturally never knew he was going to die, but right now, without pictures, my world of being a mother would be totally erased. 

September 14, 2010

Tuesday, September 14, 2010

Tuesday, September 14, 2010 -- Mattie died 53 weeks ago today.

Tonight's picture was taken in June of 2009 at Katharina's house. To me this is a classic! Mattie was wearing a colorful shirt that his technology teacher brought back for him after she got married. Mattie loved this shirt and his connection to Mary, and of course he especially loved the green creature on the front. However, please note Mattie's leg. You will see Ginny, Katharina's bird, sitting on Mattie's leg brace. Ginny and Mattie got along well together, and I just love how Mattie was not afraid of Ginny in the least. In fact, they look like two buddies sitting with each other in this picture!


Quote of the day: Losing a child is like a broken down car. To go in reverse brings painful memories. To go forward is too scary without your child. So we sit in neutral with our hands clutched to the emergency brake, hoping someday to find a way to run again. ~ Denise Bellion

 
It is quite true that last week, on September 8, Peter and I had to confront and acknowledge Mattie's one year anniversary. It is quite true that we completed every first without Mattie last year, from our birthdays, his birthday, Thanksgiving, Christmas, Mother's day, Father's day and the list goes on. These are all truthful statements, and naturally our society rightly feels that the first for anything is always the most difficult. It was a very difficult year for us and somehow Peter and I navigated our way through it, certainly with a lot of help and support, but we had our moments. Dark moments and moments I usually do not elaborate on in the blog.
 
With that said, today is yet another Tuesday, and despite the one year anniversary being behind us, I still reflect on the fact that this starts the 53rd week that Mattie has been gone from our lives. I count our loss in weeks, Peter counts in days. If you think this will stop because we have survived our "firsts" without Mattie, I assure you this is NOT and WILL NOT be the case. Losing a child is NOT a loss you get over any time soon. If you think it is, then my simple response to you is that you haven't lost a child of your own. I wasn't sure what to expect last week as we acknowledged and remembered Mattie's passing. Maybe I was too scared to think ahead and wonder what that would look like or how the second year would progress for us. One thing that I did not expect however, is that others around me would begin to treat me differently. Differently in the sense that one year has passed and therefore perhaps with that, internally things will have changed for me. I would now be happier, I would now want to go back to work (to a career that I have been in for over 15 years), and that I would now need less support. It is the subtle things that I notice, such as when I am no longer asked how I am doing. Maybe because I am deemed better by TIME, or that perhaps the answer is no longer important. I am not generalizing this to everyone in my life, but it is a feeling that is so pervasive within me today, and I obviously felt compelled to write about it.
 
Simply stated, and I don't like to speak for Peter too, but I think it is safe to say that CANCER HAS CHANGED US! So much so, that I can't see going back to living my life the same way I did before. I no longer have the same interests and priorities, and this applies to my future and a career. In many ways the second year may be even more challenging than the first because I am feeling more and understanding the loss in a deeper way. I am sure for some of you reading this, you are wondering what on earth is Vicki talking about!? We are here for her, we continue to read the blog, and we understand that the need for support does not expire after one year's time. For those of you, I am very grateful, because you realize that losing such a vital part of our world will always be a part of us, and something as devastating as we experienced can not be healed quickly.

This evening, Peter and I went out to dinner with Debbi, Mattie's sedation nurse angel. We meet with Debbi periodically and we usually spend the time reconnecting and picking up from where we left off. Debbi has and continues to be a wonderful support system for us, and when I told her about my feelings regarding the first year anniversary she listened and helped me understand that I am entitled to feel however I want and that unfortunately it is hard for others to understand the world we now live in. We live in a society in which everything is dictated by time, however, unlike other aspects in life, grief doesn't always follow a time line. We can try to squeeze it into a manufactured time line, but in the end, why? Do we do this because this is what is right for us or do we do this because this is what is considered socially acceptable and understandable? My guess is the latter, and my hunch is this will only cause further harm and inner turmoil if grief is handled this way.

I am sure it sounds like I am on a diatribe tonight, and perhaps I am. But when I feel confused and upset, unfortunately this comes through in many cases loud and clear on the blog. While writing tonight, I received an e-mail from Mattie's oncologist and our friend, Kristen. As always Kristen remembered us on this Tuesday, as she has for the last 53 weeks. Kristen wrote, "Thinking of you this Tuesday and everyday. Much Love."

September 13, 2010

National Childhood Cancer Awareness Day

Monday, September 13, 2010 -- National Childhood Cancer Awareness Day

Tonight's picture was taken in June of 2009. Mattie was in our living room with Peter. They both transformed our floor into a huge race track. Mattie loved this track, because the cars were battery powered, and he could watch them speed around and control them with his hands rather than having to walk around on his feet. Do note the socks Mattie was wearing in this picture.... they are pink! My friend, Junko, gave me these cozy pink socks because she knows I am always cold. Mattie loved the way the socks felt, and he literally pulled them off my feet, and put them onto his that night! The irony is tonight as I write this blog, I am wearing the same pink socks. I forgot about Mattie pulling my socks off, until this picture jogged my memory.


Quote of the day: None of us would part with a single one of our memories yet they are all so laced with pain. The need and desire to touch and hold our child again brings an ache that has no release. ~ Willis Day


For those of you who wore gold and/or orange today...... WE THANK YOU! I appreciated the emails today letting me know you were wearing either gold, for pediatric cancer, or orange, in support of the Mattie Miracle Foundation. These messages mean a lot to us! Peter and I both wore orange today, and I wore a golden sun necklace, which also captures the essence of Mattie.

I received an email from my friend Debbie this afternoon. She brought to my attention an organization called, CancerCare. CancerCare is a national nonprofit, 501(c)(3) organization that provides free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved. CancerCare programs—including counseling and support groups, education, financial assistance and practical help—are provided by professional oncology social workers and are completely free of charge. Founded in 1944, CancerCare provided individual help to more than 100,000 people last year, in addition to the more than 1 million unique visitors to their websites.

CancerCare launched Cupcakes for a Cause® in 2004 by enlisting a small group of bakeries in NYC to sell specially decorated cupcakes to raise funds for the CancerCare for Kids program. To learn more about this wonderful and tasty program, visit: http://www.cupcakesforacause.org/


Cupcakes for a Cause® Week is September 20-26, 2010. It is a week-long event with hundreds of bakeries and grocery stores around the country selling specially-marked cupcakes and donating a portion of sales to CancerCare for Kids. To find a participating bakery in your neighborhood go to...
http://www.cupcakesforacause.org/bakery/find/

As I went on the cupcake website tonight, I came across e-Cupcakes. You can create your own e-Cupcake and send it to your friends and family for FREE! Presenting sponsor göt2b is donating $1 for every e-Cupcake sent in September, up to $10,000. I sent several e-cupcakes out already and if you are looking for a way to support pediatric cancer and alert others to this important cause, consider sending an electronic cupcake. Click here to send an e-cupcake: http://www.cupcakesforacause.org/ecupcake/

Today was a day of chores and running around. When I got home this afternoon, I decided to do laundry and work in my garden. However, as I was working, I noticed that I was having trouble seeing out of my left eye. Almost like when you look into the sun, and then look away, you feel you are seeing sun spots! Well that is how my initial issue began, I did not think much of it at first, since I was outside in the bright sunshine. But then I noticed that my field of vision was becoming significantly impaired. So I went inside and sat down and I noticed that I was losing vision in my left eye altogether. If this hadn't happened to me two other times in my life already, I would have been in a full blown panic today. However, as a migraine sufferer, I also suffer from a rare condition called ocular migraine. This has been diagnosed by an ophthalmologist, and though I realized what was happening to me, I was still frightened, because I never know when my vision will return. Peter and Karen supported me through this feeling, and thankfully within 35 minutes, my vision did return. Here is some information about ocular or retinal migraines, if you are interested in learning more about them.

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A retinal migraine (or sometimes called an ocular migraine) is thought to be a rare migraine form but some studies suggest that this is due to it not being accurately diagnosed in many cases. It is, however, thought to occur more commonly than ophthalmoplegic migraines. Retinal migraine is found to affect more women than men, as with all migraines, and it also appears to be more common in women who have previously experienced migraine with aura. In a retinal migraine, visual problems occur prior to the headache part of the migraine and temporary but complete blindness can occur. Other symptoms of a retinal migraine include:


1) Temporary blind spots

2) Total blindness, often isolated to one eye

3) Possible headache occurring with or after visual disturbances


It is thought that the muscles around the eye contract, disrupting blood flow and resulting in the temporary vision loss. A migraine with aura usually involves visual disturbances to both eyes whereas a retinal migraine more often involves visual disturbances, including blindness, to one eye. Exercise or any other exertion may prompt a retinal migraine
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Peter was worried about me tonight, so he got home from work earlier than usual. We sat outside on our deck and had dinner, and naturally Patches (our cat) wasn't far behind. She hopped up on Mattie's chair, as she does many nights, now that he is gone. So because of the day I had, I am signing off early, but wanted to thank you again for supporting National Childhood Cancer Awareness Day and for pausing to give thought to all the children and families touched by cancer each and every day.

September 12, 2010

Sunday, September 12, 2010

Sunday, September 12, 2010 - Wear GOLD and ORANGE TOMORROW (September 13 is PEDIATRIC CANCER AWARENESS DAY) !

Tonight's picture was taken in June of 2009, when Mattie went over to Katharina's house. Mattie was in love with Katharina's pet bird, Ginny. In fact, Tanja (Katharina's mom) reminded me on my birthday this year, that Mattie loved to collect Ginny's feathers. That was certainly true, but I did not recall this until I opened up Tanja's birthday card to me, and inside were some feathers of Ginny's taped to the card. Mattie most definitely would have approved of this card. Mattie loved animals and really was fascinated by their colors, their habits, and their desire (well at least domesticated animals) to connect with humans.

Quote of the day: Personally, I think we all don’t even start to climb out of the murky depths until we’ve fully explored them. ~ Rosalinda Raynes

As I am in search of quotes for the blog, I came across a website today dedicated to parents who lost a child. Within this website, I found many quotes by parents. Tonight's quote captured my attention because I couldn't agree more with Rosalinda. The death of a child is NOT natural and it is certainly far from NORMAL. In order to be able to accept that we are living and Mattie isn't, Peter and I have and continue to explore the "murky depths." Certainly I know it would be easier NOT to right now, but if we don't address and confront some of these thoughts and feelings, there will be no moving forward for us into the future. So our grief journey continues, and as we face another year without Mattie, we are seeing that more needs to be explored. With more time that passes, more feelings do arise.

I want to let my readers know that tomorrow, September 13, 2010, is an important date in the pediatric cancer world. In 2008, September 13, was designated as “National Childhood Cancer Awareness Day” as a result of a Senate resolution introduced by U.S. Senators Wayne Allard (R-Colo.) and Hillary Rodham Clinton (D-NY). Peter and I would like to encourage you to wear something that is GOLD (the symbolic color for pediatric cancer) and/or ORANGE (Mattie Miracle's color) tomorrow in recognition of this day.

I am a member of the Parents Against Childhood Cancer (PAC2) organization and I received their link to an article in Working Mother magazine today. I attached it below, and I encourage you to complete the on line survey as well (which is found directly embedded in the article). The survey is quick and I have a feeling you may know some of the facts presented already!
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The Facts and a statement from Parents Against Childhood Cancer (PAC2):


- Chances are about 1 in 300 any child will be diagnosed with cancer before age 20.
- Every day 40 to 50 children are diagnosed with cancer.
- 1 in 4 of these children will die within 5 years.
- 2 in 4 will survive 5 years but develop long-term, life-altering and threatening health problems.
- Only 1 in 4 will survive 5 years without major problems.
- There are no warning signs or unhealthy lifestyles. No regard to race, creed, color, religion, or socio-economic status.

Despite these facts, childhood cancer is considered "rare." Yet, does two classrooms of children diagnosed with cancer every school day, with one-half of a classroom dying from cancer, sound "rare?" It’s “rare” only if it’s not happening to your child. But for over 12,500 children and families in America this year, it will not be "rare." Each will discover the desperate need for increased funding specifically for childhood cancer research, while enduring the most devastating experience of their lives.


When many people hear childhood cancer, they may only think of St. Jude and TV ads with cancer kids with round faces (from steroids) and bald heads (from chemo). Yet while it is a leading childhood cancer research center, St. Jude doesn't work exclusively on cancer research and treats less than 5% of all children with cancer. Or perhaps you think of the American Cancer Society and its support for childhood cancer? Unfortunately, in 2008, with $1,078 million of public support; the ACS gave only $4.2 million to childhood cancer research, less than 1/2 a penny for each dollar of support.

Nearly 90 percent of cancer kids are treated by members of the Children's Oncology Group (COG), an international consortium of over 230 hospitals and doctors working together and cooperatively sharing results. This cooperative research allows COG to improve cure rates at a faster pace than any single institution could accomplish alone.

As a nation, shouldn't we prioritize saving our children? The facts on funding suggest we don't. So your help is needed. No child should ever have to ask, "Mom and Dad, what's hospice?"

September is..... A Cancer Story

http://www.workingmother.com/BestCompanies/childhood-cancer/2010/08/september-is

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I received a link to a song today from my friend, Charlie. The song is entitled, "I will not say goodbye." I have heard the song numerous times, but it never caught my attention. However, Charlie sent me some information about the song and why it was created. The song was basically written after several writers attended a funeral of a 13 year old boy. During the funeral the boy's sister refused to say good-bye to her brother. Apparently it was the way she said it and her conviction about it, that caught several people's attention. From that day a song was born, and the artist singing the song lost his wife, so he too has been personally affected by grief. Below I attached the link to the song along with the story of its creation if you are interested.
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http://www.cmt.com/videos/danny-gokey/529223/i-will-not-say-goodbye.jhtml

Danny Gokey's first single, My Best Days Are Ahead of Me, found the singer bonding with songwriter Kent Blazy over the loss of their wives.  Likewise, I Will Not Say Goodbye finds a hopeful message coming out of a tragic story. Three years ago last January, 13-year-old Alex LeVasseur died when he was thrown from the ATV he was driving. LeVasseur was the son of Stephanie LaVasseur and songwriter Jeffrey Steele. Steele, one of Nashville's top songwriters, wrote Rascal Flatts' My Wish and What Hurts the Most, two Rascal Flatts hits that Danny sang on the American Idols Live tour. Steele also wrote Tiny Life for Danny's album. LeVasseur's sudden, unexpected death devastated the Nashville songwriting community, which turned out in force for the teenager's memorial service. Among those attending were Lari White and her husband, Chuck Cannon. White recalls one of Alex's older sisters speaking at the service. "It was so sad," White says. "She could hardly talk." Toward the end of her speech, the sister said that goodbye was one of the hardest things to say -- so she refused to say it. "My arms got goosebumps all over," White says, "because I just loved and respected her so much for being able to stand up there and say, I'm not going to make nice about this. "I had a good bit of the chorus written before we drove home." Not long afterward, Vicky McGehee, a mutual friend of Steele's came over for a scheduled writing appointment with Cannon and White. "We didn't really have an idea," Cannon says. "We were just going to sit around, drink whiskey and lament Jeffrey." But White had the song she had started on the way home from Alex's memorial service, and, that day, the three writers finished it. "It was very therapeutic for us to write it," White says. "Chuck had lost his mom when he was a boy and wasn't mature enough, wasn't able at that age to graciously say goodbye, so it resonated a lot with him." When Joe Cerisano -- a renowned New York jingle singer and a friend of the Cannons -- sang the demo, it resonated with him, too. "Joe and his wife, Marie, lost their little boy when he was 5 in a bizarre hit-and-run accident," White says. "It just devastated their family. So not only was Joe one of the top singers in the country, but he lived that same experience. You could hear it in every note that he sang on the demo." Vicky McGehee sent it to Lisa Ramsey-Perkins, senior director of and at Sony Music Nashville, who was helping Danny look for material for his debut album. "When I started working with Danny, the obvious elephant in the room was 'Do you want to sing about or address losing your wife?'" she says. "Very public, obviously -- everybody knew it from American Idol. I just didn't know if that was something he wanted to talk about and sing about, or if it was too fresh and he just didn't want to do it right now." Danny eventually told Ramsey-Perkins that she could send him songs that dealt with that topic -- if she felt it was the right song, and if it had a positive message. And Ramsey- had plenty of songs to choose from. Since most of the songwriters and publishers in Nashville knew Danny's backstory by the time Sony signed Danny to its RCA label, they sent Lisa all sorts of songs in that vein. "I got pitched a ton of songs about loss and death, from everyone," she says. One of those was I Will Not Say Goodbye. "I was honestly reluctant to send it to him," Ramsey-Perkins says. "I cried when I heard the song, and I was afraid it was going to take him down. I didn't know if we needed to go there at that point, and I held onto it for a while." Meanwhile, Danny and his RCA team began picking other songs for Danny's album -- "some uptempo songs, some message songs," she says -- but I Will Not Say Goodbye always stayed in the back of Ramsey-Perkins' mind. Finally, she emailed Danny an mp3 of the song. "I was a little big chicken, I'm not going to lie," she says. "I didn't want to sit in a room with him when I played it for him. I wanted him to hear it by himself and feel what he felt." Within minutes, Danny called to say he wanted to record the song. Ramsey says the song was initially considered for an exclusive bonus track -- until Danny recorded it. Once people at RCA heard that, it quickly made the album's final cut and was picked as the follow-up single to My Best Days Are Ahead of Me, with some at RCA even calling it "a game-changer." (The single goes for adds at country radio today.) "That's a really special song to us, and not something we would have expected to be a commercial single," White says. "I'm thrilled that it's having such a life and that it means so much to Danny."

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I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy wrote, "Just a quick hello to tell you that I'm thinking of you today as this very intense and emotional weekend comes to an end. I loved Mattie's picture with his Sponge Bob. His imitation was priceless as he was in many of his life situations. Thanks for sharing it with us. What a wrenching week for you! I'm so glad that you have Mary and the girls to keep giving you acknowledgment and hugs. They don't come close to the ones that you shared with Mattie, yet, I know that they are welcomed by you. Life just gives us people like Grace to realize how important it is to be present with people at their level. This was not true of Grace and I'm glad that Mary picked it up too."

Saturday, September 11, 2010

Saturday, September 11, 2010

This picture was taken in July of 2009. Specifically during the July 4th weekend. We took Mattie away for the weekend with Ann's family. This was a huge deal, since we worked everything out with his doctors ahead of time, so that Mattie did not have to be on IV hydration at night at the hotel. It was only one night away, but just getting all his supplies packed up for that one night was exhausting. In addition, this was an emotionally challenging trip for Mattie, and therefore it was equally challenging for us as his parents and as a couple. While watching the fireworks, Ann snapped a picture of us capturing the sights. The fireworks did catch Mattie's attention, and he wanted to see them, but he was edgy before and after the display. He wanted to be with the other children, and yet, wanted his space at the same time because he felt different from them. I can recall his mixed emotions and heartache vividly, and sometimes I amaze myself, when I see myself smiling in this picture. Perhaps it seems from this picture that I did not have a care in the world. I assure you that was NOT true!


Quote of the day: Death leaves a heartache no one can heal, love leaves a memory no one can steal. ~From a headstone in Ireland


Nine years ago today, is a day I will never forget. September 11, 2001, was a TUESDAY. A day of the week I have come to absolutely despise (since Mattie died on a Tuesday). On that day, I was two months pregnant with Mattie, having morning sickness, and trying to prepare for my class lectures for the week. Before I turned on the news, I thought the worst problem I had that day was morning sickness. But as I watched the Twin Towers come crashing down, the Pentagon get hit by a commercial jet, and of course the bravery of the people aboard that flight that crashed in the Pennsylvania field, I was left stunned, shocked, and deeply saddened for our Nation, and the incredible loss of life. A senseless loss and disregard for life are not something I can understand at all. In a way I feel as if Mattie's life was book ended by tragedy, the tragedy of 9/11 and his death on 9/8.

I had the opportunity to spend time with Mary, Ann's mom today. Mary was feeling a bit better today, and was looking forward to my visit all day. We sat together, chatted, I did her nails, and helped her with phone calls and her dinner. As Mary tells me often, I do many good deeds, and all these good deeds are witnessed by God. I don't solicit these comments, but I do believe Mary deeply believes them! While I was with Mary, an administrator (Grace) from another assisted living facility was visiting. I have met Grace once before, and apparently she remembered me. She came over to talk with me, and while I was chatting, Mary was absorbing everything we were talking about. Mary may not respond or interject while someone is talking to me, but she does have feelings about what others say to me. Grace happens to be pregnant with her fourth child. She was telling us how she was feeling tired and sick to her stomach. Mary and I listened, and naturally I asked her questions about her other children. Grace then asked me how many children I had. I responded, and though I told her I lost my son to cancer, she did not miss a beat, and kept talking to me as if I never told her my tragic news. Not that this wasn't upsetting to me, it was, but I have experienced this reaction from others before, so I brushed it aside. Mary on the other hand filed it, but wasn't happy with the response. I noted Mary's feelings, because I guess this is the true sign of a friend. When she can be upset for me and understand how I feel, without me having to say anything.

In the evening, I met Peter at Ann's house. Ann's son, Michael was celebrating his 11th birthday. Peter seemed to be occupied with the boys at the party, and I spent time with Abbie, Ann's youngest daughter and her friend, Nikki. Nikki happened to also be a friend of Mattie's. Abbie and Nikki did all sorts of activities with me from bicycle riding, hula hooping, acting out little skits, singing, and dancing. I apparently became the judge in all of this and gave them ratings for their performances. This type of creative play went on for hours. My ten year old friend, Katharina, was also present, and hung out with me for quite a bit. Having only had a boy, I am well versed in playing with Mattie for hours and occupying his creative side. So in many ways, Mattie prepared me well stamina wise to listen, play, and engage children for hours. I learned the art of patience from Mattie. As the evening came to an end for the girls, in their own way, before leaving the activity, they each gave me a hug. That was a loving gesture, which made me feel good, because in essence I felt as if they were saying they had a good time playing.

I received a beautiful email today from a mom whose son, Brennan, is battling osteosarcoma in Australia. Brennan's bone cancer is in his spine. He has been battling this horrible disease since August of 2007, and as his mom describes it, they are at the end of their journey, not unlike what we experienced with Mattie. I was deeply saddened to read Bernadette's email today, and our hearts go out to her, because we know all too well the rough road ahead for Brennan and his entire family. Yet despite this nightmare Bernadette is living, she reached out to us to let us know she has been reading the blog each DAY for 18 months straight. I can't tell you how much this meant to me. I agree with Bernadette, that friends do drop off when cancer strikes, but at the same time, amazing people who you never expected to meet in your life, present themselves, and renew your faith, spirit, and hope for living. I couldn't agree more, Mattie brought me many gifts in the form of many special friendships. Thank you Bernadette for writing and for causing me to reflect on this important aspect of my life. To all my readers, please keep Brennan and his family in your thoughts and prayers. So many of you walked with me through every step of this journey, and you know the pain that Brennan and his family are experiencing now all too well.