Saturday, September 3, 2011

Saturday, September 3, 2011

Tonight's picture was taken on Mattie's very first day of kindergarten in September of 2007. I remember that day vividly because for me, it was a day filled with stress and anxiety. This was really Mattie's very first experience being gone the whole day from me and I just did not know how that would go. It took Mattie several months to adjust to elementary school, this was not something he took to easily. However, once he met his two close friends, things started to fall into place for him. Mattie's classmates are headed back to school this week and as each new school year comes and goes, I can't believe or rationalize that Mattie never experienced first, second, third, or NOW fourth grade.


Quote of the day: At some of the darkest moments in my life, some people I thought of as friends deserted me-some because they cared about me and it hurt them to see me in pain; others because I reminded them of their own vulnerability, and that was more than they could handle. But real friends overcame their discomfort and came to sit with me. If they had not words to make me feel better, they sat in silence (much better than saying, "You'll get over it," or "It's not so bad; others have it worse") and I loved them for it. ~ Harold Kushner


Peter received a call today from one of our friends and former neighbors. I did not realize that our friend is still a faithful blog reader and I was very touched to hear that he considers it his "lifeline" on his most difficult and challenging days. It is nice to get such powerful feedback and to know that my thoughts and feelings could potentially be helpful and helping others. Our friend's phone call was a gift, because to me the ultimate gift is when someone takes the time to listen and share feelings with me.

Before I tell you about our day, I want to introduce you to our newest friend on our deck, a Grasshopper! This grasshopper was sitting on top of our deck door the other day as I was watering our plants. Today he jumped out at me again, and clearly has made a home in our flower boxes. Mattie would have absolutely LOVED this fellow!

I suggested to Peter that we take a drive to Calvert Cliffs State Park today. From DC, it takes over an hour to drive to this park, because it is along the Chesapeake Bay. We took Mattie to this park at least three times and though it was an aggressive trip for Mattie, he always enjoyed it. It is aggressive because it involves a lot of walking before you actually can get access to the beach. Try two miles there and two miles back to the car with a preschooler! But the beach is quite secluded and if you dig in the sand correctly you can usually come home with a fossil.

Here are some specifics about the Park..... Calvert Cliffs State Park (located in Lusby, MD) is a day-use park featuring a sandy beach, unique fossils, a freshwater and tidal marshland, and 13 miles of hiking trails located in Calvert County. The massive cliffs from which Calvert Cliffs State Park was named dominates the shoreline of the Chesapeake Bay for thirty miles in Calvert County and were formed over 15 million years ago when all of Southern Maryland was covered by a warm, shallow sea. When the sea receded 20-25 million years ago, marking the end of the Miocene period, cliffs were exposed and began eroding. Today these cliffs reveal the remains of prehistoric species including sharks, whales, rays, and seabirds that were the size of small airplanes. A hike of 2 miles is taken from the parking lot, along an unimproved trail to the cliff's beach area. Over 600 species of fossils have been identified from these cliffs, with the teeth of various species of shark as the most abundant fossils.

As we began walking in the woods to head to the beach, we came across this wonderful lizard. He is camouflaged so well with the ground it is almost impossible to see him in this picture. Based on the pictures I am showing you this evening, it should be NO surprise to see why Mattie loved Calvert Cliffs State Park.

This is a sight I could have done without. I despise snakes and yet I am always the first one to spot one! This Black Snake freaked me out and I did a pretty good job on scaring him as well. He couldn't wait to get away from me. Meanwhile, as I was having a fit, Peter was snapping a picture of the snake.

The walk in the woods is quite beautiful and serene and the trail eventually opens up onto a marshy area. As you can see the water was covered with waterlilies, which always remind me of the impressionist painter, Monet.

At the end of the two mile walk is Calvert Cliff State Park Beach. The sandy portion of the beach is quite small and today the shoreline was filled with families and children, all searching for fossils. I packed a picnic lunch and we sat and ate. However, I could tell Peter wasn't happy. It was hard to be back to a place he had played with Mattie, and what didn't help was we were surrounded by children. It is a sad commentary when we are outside, by the Bay, and in the sunshine and even that can't bring us happiness.

As we walked two miles back to the car, we came across a Green Snake. Now I don't like snakes, but even this green fellow did not scare me. He seemed like an extension of a plant. Weekends in general are complicated for us, but long weekends are almost impossible. We support each other and at the same time we can bring each other down. It is a fine balance surviving grief with a spouse, and some days we do it better than others.

Friday, September 2, 2011

Friday, September 2, 2011

Tonight's picture was taken in September of 2007 outside one of Mattie's favorite restaurants. Eating and Mattie did not really go together. Mattie was about movement, being active, and creating. Sitting still, listening to people talk, and eating were extremely painful for him to do. Which is why we always went to a restaurant armed with a ton of things for him to build and create with. Mattie and I may have been exactly alike temperament wise, but we differed in the joy of eating. I am told that when I was a child, I could sit quietly, listen to adults talk, and entertain myself. Despite this specific difference, our personalities and emotions were usually in sync.

Quote of the day: Grieving is a journey that teaches us how to love in a new way now that our loved one is no longer with us. Consciously remembering those who have died is the key that opens the hearts, that allows us to love them in new ways. ~ Tom Attig

Next week, on September 8, Peter and I have to face yet another milestone, the second anniversary of Mattie's death. I imagine some people think that with time, the pain becomes less raw and the memories become sweeter. These are major cliches! For a parent who lost a child, time is irrelevant. It could be 10, 15, or 20 years from now. The plain and simple truth will always be that we lost our only child to cancer, his battle with cancer was beyond heroic, and his death was absolutely traumatic. Watching Mattie die in his hospital bed, choking from the fluid in his lungs, and in agonizing pain are almost too much to focus upon. Yet these are our memories, these are the visions that fill our heads, and if you think time will erase these visions, then all I can say is you are very wrong.

Last year, on the first anniversary of Mattie's death, Peter and I gathered with friends by Mattie's tree, hung origami cranes on the tree, and also shared cupcakes (Mattie's favorites) with friends. This year such a gathering just doesn't seem right. I am not suggesting that others do not remember Mattie, they do, but the depths of our pain is very different from others. For me, it is hard to gather with friends and then know they are leaving me to reunite with their families and carry on with their busy day. So this year, I am not planning a group event to remember Mattie. Perhaps that is selfish, and perhaps Mattie would be disappointed in this decision. I simply do not know, but I do know that this is a very challenging time for us. Compounded by the fact that summer was hard for us without Mattie. It actually seems like every season of the year is fraught with issues and reminders.

This evening, I received the following email from my sister-in-law's friend, Lesley. Lesley lives in Massachusetts and what you need to know is that Lesley and I both gave birth to a son in 2002 who were only weeks apart from each other. We both raised only children and both of our boys had similar challenges. Though I never met Lesley, my sister-in-law would tell me about Lesley and her son Max, and in a way I felt we knew each other without ever meeting. When Mattie developed cancer, Lesley began reading our blog. She was a loyal blog reader and began to write to me on a regular basis. The first time I met Lesley was when she took the train from Boston to Washington, DC to attend Mattie's funeral. She literally came to DC for several hours and returned home the same day. But her motivation was to come and meet me and give me a hug at the funeral. Lesley made an impression on me that day and really showed me how Mattie's story changed lives! Today Lesley wrote and said, "As the school year begins, my thoughts are with you. Today, I got a note from Max's teacher. They were doing an "All About Me Poster." One question was, "who would you like to meet?" Max wrote about Mattie and actually began to cry. I just want you to know he is remembered...."


As I told Lesley, I was saddened to read the note from Max's teacher (which she sent to me). Obviously Max has connected with Mattie on a deep level, whether that is because they are the same age or they both love Legos. I am simply amazed how one child can be moved to tears by another, especially when you consider that Max never met Mattie. Don't you find that fascinating? Children seem to understand and feel things in ways that adults are so closed off to and can't express. As we approach the second anniversary of Mattie's death, Max's reaction of this loss is a special sign and gesture to me about the meaning of Mattie's life and just how special Mattie was as a person.


I had a very busy day today with my friend Tina. In a nutshell Tina and I picked fresh flowers from a flower wholesaler (my home is filled with glorious sunflowers and stargazer lilies tonight!), we picked fresh figs off her neighbor's tree, and I learned how to transform a fresh zucchini into zucchini relish. This involves pickling the zucchini and bottling it into jars. Toward the later part of the afternoon, we even helped one of her daughters bake cupcakes. So I think we were thoroughly productive and as I say to Tina all the time she has really christened her new kitchen this summer. It is amazing how much you can cook and do when the space is right. Kitchens of today have become the central focal and gathering place in a home, and that was most certainly true today.

Thursday, September 1, 2011

Thursday, September 1, 2011

Tonight's picture was clearly taken when Mattie was battling cancer. Though I haven't posted cancer pictures of Mattie recently, I felt like this one was appropriate for today. As it is September 1, this signals the beginning of National Childhood Cancer Awareness Month. This happens to be one of the pictures I took of Mattie during his battle that I absolutely love. I am not sure why, maybe it was his beautiful smile, his engaging eyes, or the simple fact that despite cancer he was going to continue doing what he liked, which was building and creating things (minutes before this picture was taken, he had spent hours digging out tiny plastic bones from clay and then put the bones together to form this dinosaur). This picture is about perseverance, love, beauty, and trust. All things that cancer can not take away.

Quote of the day: Those who have suffered understand suffering and therefore extend their hand. ~ Patti Smith

I began my morning with an email from my friend and colleague, Denise. Denise wanted me to know that she looked at the Georgetown University Hospital's Pediatric newsletter and found Mattie and I on the front cover. I copied the first page of the article for you below, so you could see it. Linda, Mattie's Childlife Specialist, sent me an electronic copy of the newsletter today so I could see the article. I remember months ago helping the writer with this article, but what surprised me today was under Mattie's picture it said he battled cancer from 2002 to 2009. That would literally mean that Mattie was born with cancer. Mattie's battle with Osteosarcoma was from 2008 to 2009, and up until 2008, he was a healthy and happy little boy. As always when something upsets me it upsets Linda as well. So we were both equally upset at the same time reading this article, and we weren't even sitting next to each other. I mention this because this tells you the caliber of person Linda is, she is a Childlife Specialist but this is more than a job to her. After all, Mattie is long gone and I am no longer in the Hospital, yet she continues to care and support us. This may help my readers understand why Mattie Miracle stands behind supporting Linda, her program, and the incredible work she does with children and their families.

September is National Childhood Cancer Awareness Month, a time for Americans to reflect on the challenges faced by the thousands of young people living with the disease, and honor the memories of those who have passed. The medical community has made great strides in treating pediatric cancer, but we still have a long way to go. Cancer remains the leading cause of death by disease for all children under the age of 15.

In honor of Childhood Cancer Awareness month I wanted to share with you two things I came across today. The first item is a short video clip of an 11 year old boy name R.J. R.J. was diagnosed with acute lymphoblastic leukemia and as a result he missed almost an entire school year. But after 7 long months of treatment he was finally reunited with his classmates. In this video R.J. reflects on treatment, life with leukemia and what it was like to roll up his sleeves and get back to school. I found R.J.'s smile captivating and I was thoroughly impressed with his Boston school, which embraced R.J.'s return to school. The school's principal caught my attention because he invited R.J.'S nurses and childlife specialist to the school to educate the other children about cancer. The principal feels that learning for the children must take place beyond the classroom and instead of viewing cancer education in fear, he embraced it and in turn is demystifing it for this younger generation. I applaud him!

R.J.'s Story: http://www.youtube.com/watch?v=Fp6Q5ULYLeM&feature=player_embedded

The final item I leave you with tonight is the presidential proclamation from 2010 announcing that September is National Childhood Cancer Awareness Month. I am not sure all my readers are aware of this fact, and though I could talk to you about my productive day and the exciting happenings with Mattie Miracle, I feel my ultimate goal tonight is make sure you know about the importance of SEPTEMBER!

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http://www.whitehouse.gov/the-press-office/2010/09/10/presidential-proclamation-childhood-cancer-awareness-month

The White House

Office of the Press Secretary

For Immediate Release

September 10, 2010

Presidential Proclamation--Childhood Cancer Awareness Month

- - - - - - -

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Each year, thousands of children face the battle against cancer with inspiring hope and incredible bravery. When a child is diagnosed with cancer, an entire family and community are affected. The devotion of parents, grandparents, loved ones, and friends creates a treasured network of support for these courageous children. During National Childhood Cancer Awareness Month, we honor the young lives taken too soon and the survivors who face chronic health challenges, we celebrate the progress made in treatment and recovery, and we rededicate ourselves to fighting this disease so all children may have the chance to live a full and healthy life.

While survival rates for many childhood cancers have risen sharply over the past few decades, cancer is still the leading cause of death by disease for young Americans between infancy and age 15. Too many families have been touched by cancer and its consequences, and we must work together to control, and ultimately defeat, this destructive disease. I invite all Americans to visit Cancer.gov for more information and resources about the symptoms, diagnosis, and treatment of childhood cancers.

Tragically, the causes of cancer in children are largely unknown. Until these illnesses can be cured, my Administration will continue to support investments in research and treatment. The National Cancer Institute, the Federal Government's principal agency for cancer research, is supporting national and international studies examining the risk factors and possible causes of childhood cancers.

The health reforms included in the landmark Affordable Care Act advance critical protections for individuals facing cancer. Provisions in the law prohibit insurance companies from limiting or denying coverage to individuals participating in clinical trials, the cornerstone of cancer research. After recovering from cancer, children can no longer be denied insurance coverage due to a pre-existing condition. It also requires all new plans to provide preventive services without charging copayments, deductibles, or coinsurance, increasing access to regular checkups that can help detect and treat childhood cancers earlier. The Affordable Care Act eliminates annual and lifetime caps on insurance coverage and prohibits companies from dropping coverage if someone gets sick, giving patients and families the peace of mind that their insurance will cover the procedures their doctors recommend.

This month, we pay tribute to the health-care professionals, researchers, private philanthropies, social support organizations, and parent advocacy groups who work together to provide hope and help to families and find cures for childhood cancers. Together, we will carry on their work toward a future in which cancer no longer threatens the lives of our Nation's children.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2010 as National Childhood Cancer Awareness Month. I also encourage all Americans to join me in recognizing and reaffirming our commitment to fighting childhood cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this
tenth day of September, in the year of our Lord two thousand ten, and of the Independence of the United States of America the two hundred and thirty-fifth.
BARACK OBAMA

Wednesday, August 31, 2011

Wednesday, August 31, 2011

Tonight's picture was taken in August of 2007 during one of Mattie's trips to San Diego. This was by far Mattie's favorite spot to visit in San Diego! As my readers know very well, LEGO was Mattie's toy of choice. However, LEGO is more than a toy, in a way it is a tool that helps children learn about space, physics, and mathematical properties. Mattie naturally gravitated to them and during his 15 months in the hospital, we literally built EVERY LEGO kit on the market. To this day, I still have Mattie's assembled Lego Taj Malhal in our living room. Mattie visited Legoland at least three times, and with each visit he was physically able to do more in the park. On his last adventure there he  fell in love with their roller coasters and Mattie and Peter rode on them throughout the day! Since I am deathly afraid of roller coasters, I was simply in amazement over Mattie's courage and thrill for excitement. However, it wasn't until July of 2008, when Mattie was diagnosed with cancer did we learn the true strength of his courage and bravery.

Quote of the day: You give yourself permission to grieve by recognizing the need for grieving. Grieving is the natural way of working through the loss of a love. Grieving is not weakness nor absence of faith. Grieving is as natural as crying when you are hurt, sleeping when you are tired or sneezing when your nose itches. It is nature's way of healing a broken heart. ~ Doug Manning

I began my day by visiting Capitol Hill and the office of Representative Jackie Speier (D-CA). Rep. Speier is one of the 14 co-signers of HR 262, our psychosocial resolution that was introduced on May 13, 2011 by Rep. Chris Van Hollen (D-MD). The Resolution supports efforts to raise awareness, improve education, and encourage research and treatment of the psychosocial needs of children, adolescents, and young adults diagnosed with a childhood cancer and their families. For more information about the Resolution please click on: http://www.govtrack.us/congress/bill.xpd?bill=hr112-262


We met with Erin Ryan, Legislative Counsel to Jackie Speier, as well as Lauren Neff, Children's Cause for Cancer Advocacy's Director of Public Policy. Peter and I first met Lauren last March at CureSearch's Day on the Hill, and we have been connected to her ever since. We appreciate the opportunity to collaborate together legislatively as we try to make a difference in the quality of care children and families receive throughout their cancer battle. When I say throughout I literally mean from the time of diagnosis through survivorship.

It may shock you to know that in our era of modern medicine children with cancer are still treated with drugs from the 1950s, 1960s, and the 1970s. In 2004, the FDA approved, Clofarabine, a drug to treat leukemia. However, you should note that NO NEW DRUGS HAVE BEEN FDA APPROVED since the 1970s for children with cancer other than Clofarabine. As we know there are at least 12 different forms of childhood cancer, and clearly Clofarabine won't help each of them. In addition, because NO new drugs have been developed, physicians are left with no other options but to increase the dosage levels of these chemotherapy drugs to treat different forms of childhood cancers. However, such dosage increases have GREAT consequences. Around two thirds of all children who survive cancer treatment have some sort of long term effect. An effect that is a direct result of the toxicity of treatment. Such long term effects may include sterility, heart issues, neurocognitive issues, psychological issues, and secondary cancers. Therefore, surviving treatment and going into remission are wonderful, but that doesn't mean BY ANY CIRCUMSTANCE, that the child/teen can return to life as he/she lived it before. These children and teens need specialized medical care throughout their life journey to assure their health and well being. Unfortunately however, most children and teens do NOT have access to such services. Mainly because they DO NOT exist at most hospitals. So survivorship issues are the focus of Children's Cause for Cancer Advocacy (CCCA), and as our readers know, the psychological and social needs of children and their families with cancer is central to our mission. As you probably can connect the dots, survivorship issues and the psychological and social issues associated with childhood cancer are very interlinked, which is why Mattie Miracle is happy to be collaborating with CCCA.

Though I can advocate for a cause, I am not skilled or knowledgeable in the language of public policy. Which is why Mattie Miracle is lucky to have Brett Thompson from Mercury, LLC (a high stakes public strategy firm) behind us or perhaps on a day like today in FRONT OF US! Brett and his colleague Greg came to the meeting with me, and as usual provided us with solid input, guidance, and advice. It is hard to believe that our connection to Brett started over a case of his Pork Barrel BBQ Sauce. Some people meet over drinks or coffee, our relationship was established in a much spicier or tasty way!

This afternoon, I met up with Ann and her family. We all had lunch together and then we took a walk through town. In the midst of our conversations, Ann's cousin, Helen, told me that JP (Ann's cousin who visited our home a few weeks ago) left a note in one of Ann's notebooks. Helen found the note by happenstance, but basically JP wrote... Vicki Brown, a special life. Certainly that sentence is up for interpretation, but the way I interpret it is that he and I have a special connection with each other and he enjoys the time we spend together. I certainly wouldn't have felt any differently about JP if I didn't know about his notation, but I suppose why I am telling you this tonight is that hearing this statement made me feel appreciated and special. Regardless of who we are, we are all human and words of kindness and care are needed and are taken to heart.

Tuesday, August 30, 2011

Tuesday, August 30, 2011 -- Mattie died 103 weeks ago today.

Tonight's picture was taken in August of 2007. Mattie and Peter were posing in front of the Coronado Bridge in California. Peter and I reflect on these trips and how much Mattie loved San Diego. His favorite spots to visit were LEGOLAND (naturally!!!), Sea World, Balboa Park, and he even loved the USS Midway (the retired aircraft carrier, which is now a museum).

Quote of the day: Honest listening is one of the best medicines we can offer the dying and the bereaved. ~ Jean Cameron

Today I signed up for ten more zumba classes. So at this point in my mind it is a commitment. Knowing the teacher helps. I met Jenny at Mattie's school. Her daughter and Mattie were in the same kindergarten class. In today's session several other moms from Mattie's school were also in attendance. As some of my faithful readers know, being around other moms is challenging for me. Especially when the natural discussion is to talk about children. Several of the moms were talking about their fear as it relates to their children growing up and eventually going off to college. A natural and logical fear. A fear probably every parent has for various reasons. Many of the moms were saying that it is hard to see their children growing up before their eyes and they are not sure how they will handle saying good-bye as their child heads off to college. At one time, I could have related to this conversation wholeheartedly. However, instead, today I wanted to basically scream out.... you are lucky you have such a problem. You are lucky that your child is alive, healthy, and developing. Though it is hard to say good-bye to your child as he or she ventures off to higher education, this is the natural order of life. As a parent you want your child to grow up to be independent, self-sufficient, and responsible. What we sometimes forget though is a child needs a parent at EVERY age. The relationship changes and evolves, but the love and need will always be there. Well of course unless your child dies, and then there is no evolution. There are only memories frozen in time. In situations like today, I hold my tongue. I listen, but usually don't respond, because most people can't handle the reality that can spew from my mouth.

In the midst of all of this, I met a woman in my class who is a mother of an only child. This woman learned about me through a mutual preschool friend. She has followed Mattie's battle, and is a loyal blog reader. Though I did not know her, she came up to me and gave me a big hug. When she told me her name, I recognized it because she is a Foundation contributor. The irony is we are both married to fanatical Red Sox fans, and we had a great old time talking about that today! She mentioned that she has wanted to write to me and get to know me, but was unsure how to do this and didn't know what to say. Frankly, what she said to me today was absolutely perfect and knowing that she cared and says prayers for me was extremely thoughtful to hear.

When I reflect on what Mattie's oncologist, Kristen and my friend and colleague, Denise, said today, I pause. They understand how hard some days are and aren't sure how I do it. I don't know how I do it either but having others in my life who reflect back my feelings is very helpful. As Mattie was battling cancer for 15 months, we were right along side him in the process. This meant a total lack of freedom, living in a hospital around the clock, not moving much from his side or his room, not getting fresh air, not being able to eat the foods of our choice, and not getting any sleep. All of these things over a prolonged period of time can make one feel very unhealthy, but what needs to be factored into this equation is we also lived under intense psychological and emotional stress. Life and death decisions were made daily about Mattie's care and seeing your child suffer in horrific ways is torture enough. So I guess when I look at our overall picture it is AMAZING that we "do it" each and every day.

After Zumba class I headed to Mattie's school to walk around the track. Somehow I had to keep moving today. So I walked over 3 miles and also ran into one of Mattie's kindergarten teachers, which was a nice surprise. While walking around, there was a football practice going on. I was oblivious to it, since I was listening to music and just walking and taking in the greenery around me. However, something orange caught my attention while walking. What was it? One of the Mattie Miracle Cancer Foundation's drawstring bags that we distributed at this year's Walk. A teen was walking around the campus with the bag. I am not sure what the bag means to her, but to me it is a solid symbol of Mattie's memory. Which made me happy.

I had the opportunity to visit with Ann's cousins today. Her cousin who had a tumor removed yesterday is home and doing very well. He was up and walking about and we even took a walk around Ann's neighborhood together. This is clearly NOT my experience with people who have had surgery the day before. Most people I have cared for who have had surgery weren't doing so well the next day. I am happy that Ann's cousin is progressing so well and has a positive attitude in the process.

I spent the rest of the afternoon at home working on Foundation items. While working, I opened up our windows and turned on Mattie's fountains. They were very pleasant to listen to and made the work go more smoothly.

I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Just a note to let you know that I am thinking of you. When I write friends who I haven't seen in a while I usually say "I hope all is well" and while I think these sentiments to you as well I also know a little bit about how you are from reading the blog.  I admire both of you for trying to function after days without sleep. It's difficult and frustrating that's for sure! Thinking of you this Tuesday and everyday."

The second message is from my friend and colleague, Denise. Denise wrote, "I read your blog post this morning and there are no words for the profound horror and terror of Mattie's illness and his death. While you and Peter were caring for him, you had to literally shove your feelings somewhere so you could care for him both mentally and physically. And it makes sense that those feelings and sensations come up. I so wish there were words. I hold you and Peter in my thoughts and heart."

The third message is from my friend Tanja. As my readers know Mattie died on September 8, 2009. That happened to be the first day of school for most of Mattie's friends. I imagine for friends like Tanja, the first day of each school year will always be bittersweet. Tanja wrote, "I can't even imagine! Summer times, anniversaries, birthdays, diagnosis day and Mattie's passing day approaching... all of this adding up, I don't even know how you can even get out of bed - not to talk about functioning ... and you are still able to help others!!! Amazing. I know the first day of school -- while it is not the actual day Mattie passed away -- I will always remember that day every first day of school and how terrible I felt. Given how bad I feel, I can't imagine how much worse you and Peter feel!"

Monday, August 29, 2011

Monday, August 29, 2011

Tonight's picture was taken in August of 2007 in Coronado, CA. That summer Mattie had made real strides in the pool. He was developing confidence in the water and was showing us, during that moment in time, that he could float.

Quote of the day: For some moments in life there are no words. ~ David Seltzer

I couldn't have stated it better.... FOR SOME MOMENTS IN LIFE THERE ARE NO WORDS! I think words are quite good for explaining tasks, ideas, and feelings. Certain feelings. Some things however, such as the death of a child, are beyond explanation and in all honestly no words could ever explain the inner turmoil a parent is left with. I can certainly try to explain my thoughts and feelings, or at least I have attempted to do this for three straight years now. But there are days when I just can't get someone else to understand the depth of such destruction left behind by pediatric cancer. After all, why would I want you to understand this? I wouldn't wish this upon you, and yet, when I don't share a friend's happiness, a friend's anger about things, a friend's direction and purpose for life, cancer is the culprit and explanation. To appreciate me and to truly be my friend means that you accept that cancer was and is a part of my life.

I spent a good portion of my day trying to help my friend Ann. Her cousin was diagnosed with cancer and he is in town this week to get his tumor removed. Today was his surgery, and while Ann was with him all day, I tried to help her with her children. In the midst of helping her, I would get periodic updates about her cousin.

For me, it is hard not to picture someone going through surgery without thinking of Mattie. Mattie's surgeries were fresh in my mind today. I recall the anxiety of waiting for Mattie through each surgical procedure. Mattie's surgeries were all long, hours and hours and when you lump into it recovery times, most of his surgeries were over 12 hours long. I honestly do not know how someone manages to wait for a loved one going through surgery without having a surgical liaison. I still remember Mattie's surgical liaison, Melissa. Melissa went through every surgery with us, and literally would call me on my cell phone hourly with updates about how Mattie was progressing in surgery. This is crucial because otherwise it is very hard to get real time information. When you are waiting over 8 hours for your child, hourly updates are truly needed.

I went about the day trying to do tasks and chores that would help Ann and this afternoon, I went to visit her mom, Mary. When Mary saw me, she smiled and was happy to see me. She put two and two together and realized I must have been helping her daughter today, at which point she looked at me and said, "you are a very special person." It is nice to have a fan!

This evening, Peter went with me to our car dealership, since something is wrong with my car. On the drive to the dealership, I had a flashback of Mattie in the
post-anesthesia care unit (PACU) at Georgetown University Hospital. The PACU is an area, normally attached to operating rooms, designed to provide care for patients recovering from anesthesia, whether it be general anesthesia, regional anesthesia, or local anesthesia. In any case, in my head tonight I could hear Mattie crying and screaming out for me as he was waking up from anesthesia and in intense pain. Really NO parent should hear their child screaming and writhing in such pain. Mattie's pain was so intense that even the veteran nurses working in the PACU were moved by him. After all he was a beautiful child all cut up, drains everywhere, attached to all sorts of machines and monitors, and he was screaming and crying uncontrollably. One scene of this would be MORE than enough. Peter and I have THREE we lived through (two limb salvaging surgeries and a sternotomy). I think hearing about Ann's cousin tonight in recovery triggered something in my mind, and though Mattie is never far from my consciousness, the pain of his surgeries and recovery process flooded all back.  

I am left tonight feeling very tired, with a migraine that won't go away, and simply with the notion that I can't and won't ever be normal or myself again. As I explained this to Peter, he understood immediately and also commented to me that my intense tiredness and fatigue are grief related. I couldn't agree more. To add insult to injury, they are back to repaving our road outside our bedroom window tonight. So again there will be no sleep, which can only impact my already negative mood.

Sunday, August 28, 2011

Sunday, August 28, 2011

Tonight's picture was taken in August of 2007 on Roosevelt Island. We typically walked the Island on the weekend regardless of the weather. This particular part of the Island is unique, because it is the only beachy portion. Near to this beach portion is where I planted Forget Me Not seeds on Mattie's birthday this year. Mattie loved the Lightning McQueen umbrella that you see in this picture and every time I see that umbrella in the closet it reminds me of our walks together.

Quote of the day: There are three needs of the griever: To find the words for the loss, to say the words aloud and to know that these words have been heard. ~ Victoria Alexander

Fortunately for us, Hurricane Irene was very uneventful. Peter spent part of the morning reorganizing our plants and rehanging our American Flag on our balcony. However, as many of my readers know, Peter walks Roosevelt Island every weekend. This morning was no different! He brought the camera to the Island and at 7am, he was taking all kinds of pictures of the Hurricane damage there. As you can see trees fell all over the place, and one directly on the boardwalk.  

What I love about this picture is in the midst of all the leaves and trees that had fallen from the storm, this one beautiful yellow flower was untouched. Somehow it seems very symbolic and I am happy Peter took a picture of it.

On Friday when Peter came home from work, he surprised me with summer squash that his colleague at work brought in for him. Amy grows these incredible squash in her garden and they are huge. About 3 pounds each, and she gave us about 10 of them. So this morning when I heard my friend Tanja was sick, I decided to make her soup out of some of the squash. It was a good morning project and Peter and I enjoyed working on this together. Ironically my friend Tina and I have been chatting about squash for two days now since she too got several from a friend. However, Tina's squash make mine look minuscule. Each of her squash are about 6 pounds! Any case, we have been exchanging idea on how to cook up these wonderful vegetables. Between the two of us, we have all sorts of ideas. The soup turned out quite nicely and in the end it felt nice to do something for a friend.

Last night as the wind was blowing, two of our plants fell down. So we brought them inside. As Peter was carrying them in, I was in shock. I received these two plants as a gift from my friends Christine and Ellen. They gave them to me right after Mattie died. They were tiny plants two years ago... maybe up to my knees! Now look at them!!! I just can't get over how they have grown (they look bigger when inside rather than outside on my balcony). Christine jokes with me often about my green thumb, I don't know what to say other than they do mark the passing of time for me.








We had a social afternoon of visiting with Tanja, Tina, and then Ann. At Tina's house, she was making homemade jam with her mother-in-law. Peter's mother taught both Peter and I how to make jams and jar them, but I haven't done it in a long time. So today brought back memories! We fortunately arrived at Tina's at the right time, because we were able to taste the freshly cooked treat!


This afternoon, we went back to Roosevelt Island and walked around. The park service cleaned up all the debris, so it did not look like it had when Peter was there at 7am. Any case, along our journey we saw several blue tailed skink. Mattie loved these lizards and therefore I felt the need to snap a picture.

I end tonight's blog with a picture of one of the huge zucchini that Tina gave me. This was one of the smallest ones she received. I love how Peter gave this zucchini perspective by including a pen in the photo. Needless to say, I am becoming an expert this week in cooking squash!