Mattie Miracle 2021 Walk was a $125,000 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: 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

November 5, 2010

Friday, November 5, 2010

Friday, November 5, 2010

Tonight's picture was taken in September of 2006. Mattie was about four and a half years old, and was VERY much into trains and playing with Thomas the Tank Engine. What you can't see in this picture, was that Mattie was wearing his favorite t-shirt on this nature walk. His Thomas the Tank Engine shirt. In fact, Mattie and Zachary (Mattie's close preschool buddy) loved the whole Thomas train series so much, they would act out episodes and pretend to be the trains. I recall those days vividly! The picture before you was taken along one of our weekend nature walks together. The walks were unstructured, and the beauty of that is there were no expectations for any of us. We would walk, talk, and discover things along the way. Mattie was all about exploration, observation, and activity. Which is why walking in the woods and water were so stimulating for him. Peter and I logged many hours walking with Mattie, and over time Mattie really became a good walker. He could walk for miles. Then of course, like any child, he could also get tired out, and in those moments, what you see in this picture would happen, Peter would carry Mattie. Check out the smile and look on Mattie's face in this shot. To me it is priceless.

Quote of the day: What we call the end is also a beginning. The end is where we start from. ~ T.S. Eliot

Indeed, the end is where Peter and I must start from, in order to find a new beginning. The quote itself sounds very meaningful and existential, until you actually have to live it. Or experience it the way we have through the loss of Mattie. Tonight Peter and I went out to dinner. While eating we reflected back on a story Peter told me last night. Peter, from my perspective, performs many acts of kindness on a routine basis. One of his acts of kindness is typically giving strangers who are lost directions. Regardless of where Peter is, city, state, or even country, he gets stopped for directional help. We debate about why this happens to him. I feel that people stop him because he looks trustworthy and knowledgeable of his surroundings. He however, has a different take on it. Nonetheless, last night's act of kindness has stayed with me, and also Peter. I am telling you about this, because it is through these simple gestures that Peter and I are learning to find a beginning for ourselves. Ironically, the meaning or purpose now in our lives is usually defined and captured through helping others. So random acts of kindness for us are instruments to help us feel alive and connected to the world around us.

Last night, as Peter was walking home from work (and it was dark by that hour), he noticed an older woman walking with a cane on the sidewalk. She stood out because the sidewalks were filled with college students bustling around. She was moving slower, but as he was observing her, she seemed disoriented and unsure of where she was going. Peter typically is approached by people for help, but last night, Peter took it upon himself to go up to this lady, introduce himself and asked her if she needed help finding something. It turns out she lives in the nursing care facility right near our home. She was clearly disoriented in the dark and couldn't find her way home. So Peter showed her and stayed near her until she crossed the street and made it to the entrance of her building. What captured my attention about this story is that this woman was surrounded by students and NO one helped her or even noticed she needed help. Peter, after a full day of work, and with a lot of emotional baggage, observed this woman and offered his help and concern. From my perspective this is a simple and random act of kindness, but when reflecting upon it deeper with Peter, I have learned that he not only felt good about himself for helping her, but also felt a connection and appreciation from someone. So sometimes starting over again in life, means taking the time to understand the impact we have on others in a given day.

I decided to start up my walking routine again today. But was less aggressive and moved at a slower pace. I figured walking was better than not walking at all. It was rather chilly today, but the sun was out, and as I began walking I was distracted with other things and did not focus upon the cold. After walking, I met up with Ann and we went to visit her mom together. We joined Mary as she attended mass at the assisted living facility. I have been to mass before with Mary in church, so this was not a new experience for us. If you get to know Mary, you immediately realize that one of her protective factors in her life is her religion. She is a very spiritual person and turns to God to help her through many things, even the death of her son. This is the one area where Mary and I diverge greatly. As I was attending the mass today, I couldn't help but observe the priest, his disconnection from the older adults in front of him, and his homily that left a great deal to be desired. In a world with so much heartache and pain, people look to their religious leaders for comfort, spiritual guidance, and hope. Unfortunately I no longer find this solace in church, and I suspect I am not the only one.

Keep in mind that this priest was delivering a homily to a group of older adults who are dealing with all sorts of issues from physical to cognitive impairments. These are people who were vibrant at one time, but at the moment just managing their activities of daily living in a given day takes a lot. Which leads me to his homily. His homily centered on how we as human beings, who strive to eventually earn our way into heaven or God's house, must think about how we live our lives on this earth. Instead of focusing on making money and other skewed priorities, we need to dedicate our lives to helping others and making sacrifices that will make us worthy to live an eternal life. I am not necessarily disagreeing with what he is saying, having grown up Catholic. What I take issue with is, is this message really relevant to this older audience? After all, these people have lived their lives already, and they are struggling to keep living life with as much dignity as possible until the end. So having them reflect today on the ways they can help others and reflect upon the sacrifices they should be making seems inappropriate (and perhaps NOT feasible). In fact, I strongly believe that God looks down on sick children and impaired older adults and feels their pain and understands the self sacrifices they are making, God is not looking for them to prove themselves at this point in their lives to earn a place in his kingdom.

As we head into the weekend, a wonderful Mattie Miracle Cancer Foundation fundraiser, being organized by the VP 26 Tridents Officers Spouse Club, is taking place tomorrow. Whitney, one of Mattie's favorite childlife interns at the Georgetown University Hospital will be attending this event in Florida and representing us. Peter and I wrote a message to the group, which Whitney will be reading on our behalf tomorrow. We are so grateful to Palen (Whitney's sister, and the Vice President of this Club) for recommending our Foundation as the beneficiary of her Club's auction this year. As pictures and other information come our way from this event, I will be sharing it with you.

November 4, 2010

Thursday, November 4, 2010

Thursday, November 4, 2010

Tonight's picture was taken in November of 2006. I am not sure whose eyes intrigue me more in this picture. When I look at Mattie's eyes, I see my own eyes. In many ways, Mattie physically looked like me but personality wise we were very similar. We understood each other and when we teamed up together, watch out! United we were a force. But tonight I also turn to Peter's blue eyes. One of the things that caught my attention with Peter in college was his eyes. I found his blue eyes to be a beautiful color, the color of the sky. When I see this picture, I see a dad with happy eyes. However, four years later, Mattie's death has impacted Peter's eyes and my eyes. Our eyes may be the same color, but they do not have the same spark they did before cancer devastated our lives. I have had complete strangers tell me recently that I have "sad" eyes. Perhaps, eyes don't lie, and seeing this picture of Peter tonight got me reflecting on our physical changes as a result of Osteosarcoma.

Quote of the day: I talked with mothers who had lost a child to cancer. Every single one said death gave their lives new meaning and purpose. And who do you think prepared them for the rough, lonely road they had to travel? Their dying child. They pointed their mothers toward the future and told them to keep going. The children had already accepted what their mothers were fighting to reject. ~ Erma Bombeck

As I read Erma Bombeck's quote, I felt mixed reactions toward it. I completely agree with her statement that "children had already accepted what their mothers were fighting to reject." Absolutely! Mattie understood he was dying, and even in his garbled speech toward the end, he told us in no uncertain terms that he was "dying." Not a word you expect a seven year old to use much less understand. But Mattie understood much more about the cancer that raged inside his body than all of us. When I say us, I really mean US. Not just Peter and I, I include his doctors in this mix. NO one thought Mattie's cancer was going to come back six weeks after his chemotherapy treatment ended. The only one who registered he was sick, and really sick, was Mattie. Mattie did not want to talk about his death, or what was happening to him, and sometimes I step back and wonder if Mattie decided this for his benefit or ours. Mattie knew and felt our love for him, and even in his death, he made his love for us very clear. He was not leaving this earth without our permission. In a way, by us agreeing to the administration of propofol, we helped him die peaceful. I assure you the five hours prior to the propofol administration was hell on earth for Mattie, for us, and for Sarah Marshall (his HEM/ONC nurse, aka our angel of mercy). As Mattie was dying, his room looked like a battlefield and our weapons of mass destruction were syringes FULL of narcotics. Hundreds of THEM!!! However, the effects of the syringes lasted only minutes, before Mattie was screaming in pain, and gasping for breath. Mattie's death will remain with me forever. I can see it, hear it, and feel it. Time doesn't heal that experience. It may help me put it into context, but it is a part of me.

The first part of Bombeck's quote is what I take issue with. She said that moms who lost their children to cancer, had new meaning and purpose in their lives. Certainly you can't go through a life and death experience without life's meaning being altered. This maybe different for each cancer survivor, but I have no doubt the person I was prior to cancer is no longer the person that stands before you now. My issue though is with her word, "purpose." I think it is much harder to come to terms with one's purpose after your child dies. After all, when you have a child, the thinking is that your most important purpose is to raise this being you created. In today's society, raising a child doesn't end at age 18. We live in a complex world and more is required of parents today, not only in terms of financial support but emotional and social support as well. Peter and I were united on this commitment, a commitment that had a future. With Mattie gone from our world, our purpose is much more gray. You could say that we are now back to what our lives looked like before Mattie was born. In essence, yes, but the one problem is we have seven years of parenting a child under our belt and in our minds and our hearts. So I guess I agree that Mattie's death has altered our purpose, but I freely admit to the fact that I have NO idea what that purpose is, I suppose it is evolving. Or perhaps I am hoping for divine intervention to help me have a vision of what a future looks like without Mattie. Not my current existence, I certainly know what that feels like, but a future. A future where I have some understanding of what the next day holds for me, a future where there is a purpose to getting up each day, and a future where sadness doesn't prevail over everything else.

Today was a rainy day in Washington, DC. I haven't been feeling well for the passed couple of days, therefore my walking routine isn't happening. However, I did meet Ann at the Mall. She is working on planning a birthday party for her oldest daughter, and I met her there to hear some of her ideas. While I was talking to Ann, she mentioned that a pair of pants she bought with me last week had shrunk after being cleaned and was upset about that but really did not have the time to focus on that problem. I registered the concern and we kept talking about the party and also about the book, Saving Henry, that I am reading.

When I began reading the book, I made the assumption that Henry had cancer, since he was treated at Georgetown University Hospital, like Mattie. However, Henry did not have cancer, he instead was born with a genetic disease that would require him to have a bone marrow transplant in order to survive. The disease is called Fanconi Anemia. Both of Henry's parents were carriers of this disease, and the only known way to cure this illness is to receive a bone marrow transplant from a PERFECT donor match. Such a match can only come from a sibling. Because both parents are carriers of this disease, the chances of them having another child with Fanconi Anemia was high, and also this child would need to have antigens that perfectly matched Henry's in order to be the perfect bone marrow donor. So this couple debated and struggled with how to save Henry. Until a medical procedure came to their attention, in which science could intervene and help this couple have a baby using in vitro fertilization paired with a procedure called PGD (Preimplantation genetic diagnosis). If the technique worked, then Henry's mom could be implanted with a viable embryo that was guaranteed not to have fanconi anemia and also guaranteed to have the exact antigens needed to make the sibling a perfect bone marrow donor for Henry. It is a complicated scenario with MANY ethical implications, and I am finding it fascinating to read Laurie's (Henry's mom) thinking process and naturally understanding her level of desperation to save her child's life. Though Laurie's story is different from my own, I can relate to her feelings about knowing your child is so ill that he could die. I also find that after going through Mattie's battle with cancer, I look at some of the controversial choices Laurie had to make quite differently. When it is your child you are aiming to save, it is amazing what moral principles you may think twice about if it provides a viable solution for your child.

After Ann and I had lunch together, we parted company, but I felt compelled to visit the store she bought her pants in last week. Having worked in a retail store myself in years past, I know that if you want to get something done quickly, you have to talk to the manager, who has the authority to make decisions. I explained Ann's story to the manager and I told him I am surprised that her pants shrunk and I expect his store to stand behind his merchandise. He agreed with me, and was willing to exchange the pants right there and then. The only problem was the pants were on Ann, and Ann was driving away. Just another episode in our Lucy and Ethel show! The manager was very kind and held the new pants for me, and I eventually met back up with Ann, got the pants, and got them exchanged. Some how I felt vindicated!

When I got home today, my friend Charlie sent me an uplifting story about a young woman who helped a family by giving them an unexpected gift. As I was reading the story, the story mentioned something called a "smile card." I honestly had NO idea what that was, and assumed the story took place in a different culture. Charlie then sent me the link below to an organization called, where the story she sent me was posted. Helpothers is an organization that encourages people to do random acts of kindness each day, and when you do these random acts, you can hand your recipient a smile card, in hopes that this will inspire him/her to perform a random act of kindness to someone else. In essence to keep the chain of kindness going.

The reason I bring up this website and the notion of acts of kindness is that I received many today. From Ann giving me chocolates and lunch to our friend Tamra, making and delivering us dinner. I expected none of these things today, and yet, as the recipient I felt very grateful and happy to be thought of in this way. It is certainly wonderful when you are not feeling well to have someone cook you dinner, and Tamra knows just how much I love stew, bread, salads, and of course OLIVES and CHOCOLATE. Unexpected acts of kindness, even among friends, are powerful gifts, and you never know just what a positive word, note, or gift can do for someone. I speak from over two years of experience with Team Mattie.

November 3, 2010

Wednesday, November 3, 2010

Wednesday, November 3, 2010

Tonight's picture was taken in October of 2006. We took Mattie to a fall festival, and that particular year Mattie wanted to try to go down the long slides on the hill. In past years Mattie found these slides intimidating. As you can see, sitting on Peter's lap, Mattie thoroughly enjoyed the whole ride down hill. In fact, Mattie spent a good portion of the day running up the hill, waiting on the line to go on the slide, and then sliding down. It was a special moment in time, because it captures Mattie's achievement of conquering his fear about slides. This was an example of Mattie's bravery, but bravery on a small scale in comparison to his ultimate challenge of fighting cancer.  

Quote of the day: Did I love you? Surely yes. Did you know? Absolutely. Was it enough? Never. Is it over? Yes, forever. Will it end? Not ever. I bid you goodbye and love you still, dancing in the joy of what we had. Crying in its loss, praying for your soul. Not knowing if you need it. But believing it is a link. ~ Clarice Hausch

I had a slow start to the day, as I am fighting off a terrible head cold. It certainly did not motivate me to get up and moving. Instead, I spent the day at home resting and reading. The combination of how I was feeling physically and emotionally resulted in my desire to want to spend the day alone.

A couple of days ago, Mattie's preschool teacher and my close friend, Margaret invited me over to her house for tea and chocolate. So as the day wore on, I pulled myself together and headed over to see her. When I first met Margaret (back in 2005), it was an instant connection. I could tell she was going to be a great teacher for Mattie, and I simply loved her teaching style, her energy, and her understanding of people. When Mattie entered Margaret's classroom, the only expectation I had was for him to have a positive and enriching year. That expectation was met and then some, but the outcome which I hadn't expected was in the process I found a wonderful friend. Sometimes life can bring you unexpected things that can change your life for the better.

When Margaret and I get together time has a way of just slipping by. We spent over four hours chatting and having wonderful treats, and Margaret has a particular china pattern with thistles on it that she knows I love. It makes having tea and cake very special, because in many ways I feel transported to an English tearoom. Visiting her today was a much needed break from my everyday sadness and thoughts. We talked about so many things from our most recent travels, family, Christmas, and of course Mattie. Margaret and I also discussed my thoughts for writing a book, and before I even said anything, she understood immediately why this is a daunting and difficult task for me. I also was telling Margaret that this holiday season seems even more challenging than last year. The reality of Mattie's loss seems much more real and pronounced now, whereas last year, I only understood this reality on a very shallow level. Shallow because I was numb, which was my coping mechanism that I adopted for the first three to four months after Mattie's death. However, this year, I can't avoid our reality, and as Margaret said to me today, my reality isn't just for today it is for a LIFETIME. Absolutely! I couldn't have said it better.

Mattie is no longer physically present in our lives, but Margaret is another example of the connections that Mattie helped establish for me. In essence, Mattie's memory lives on through our friendship, and I can't help of thinking about Mattie when I am in Margaret's presence. When I look at Margaret, I remember her sweet e-mails she sent me on the first day of preschool. E-mails, which by the way, I have saved! I remember her thrill of reporting to me that Mattie went down the playground slide with him in her lap (a major feat, since Mattie was deathly afraid of slides), I remember her telling me that Mattie made a connection on his very first preschool day with Zachary, and I remember her telling me that Mattie was artistic. She showed me two leaf paintings he created in class, of which I proudly framed and they are still in his bedroom today. With Margaret there were many firsts for Mattie, positive firsts, and these are memories I will never forget. Margaret was good for Mattie, but she was also good for me as a mom. So though the day started out poorly, interacting with Margaret helped me feel a bit more connected with the world and my feelings.

November 2, 2010

Tuesday, November 2, 2010

Tuesday, November 2, 2010 -- Mattie died 60 weeks ago today.

Tonight's picture was taken in October of 2006. Mattie was four and a half years old. Peter and I took Mattie to the Monocacy Valley of Maryland to ride on the Walkersville Southern Railroad. This track was built in 1872 and the trains were vintage 1920's passenger cars ( Mattie had a wonderful time seeing the Maryland countryside and riding on the train. He ran between the train cars, and at one point Peter and Mattie were riding outdoors, in the cold. It is hard to believe looking at the face in this picture, that Mattie developed cancer and died. To me, he looks like the picture of health! Weekends with Mattie were busy, as I always tried to find fun and interesting things for us to do together. Peter and I had many interests, and we always tried to expose Mattie to many different things in order to stimulate his curiosity and excitement to learn and see more. This strategy seemed to work for Mattie.

Quote of the day: Danny, our only child, passed away at the age of twelve. His death was unexpected, and the pain almost unbearable. Our pastor told us that yellow is the color of life. What then could be more fitting than yellow roses? To ensure these symbols of life for years to come, I bought a rose bush for my wife. After all, she was still Danny's mom and needed more than ever to be reminded of that. I planted the bush on Mother's Day. On the day before Father's Day, the roses bloomed - three of them, to be exact. They were arranged in size order, just as our family had been in life. When I bought the bush, there was no way to know that there were to be only three roses. I have no doubt this was a sign from Danny. He wanted us to know that he still lives, and that there are still three roses.  ~ John Carlsen

For all of you who contacted us on Facebook today and congratulated us on our one year anniversary of the incorporation of The Mattie Miracle Cancer Foundation, we THANK YOU! On November 2, 2009, The Mattie Miracle Cancer Foundation was born, almost two months after Mattie's death. Within one year's time, the Foundation has donated hundreds of toys to Georgetown University Hospital, we hosted a first annual pediatric cancer walk (with 400 people in attendance), we brought Sean Swarner (first cancer survivor to climb Mt. Everest) to the Georgetown University Hospital to meet the children and their families (both outpatient and inpatient), we participated in CureSearch's Reach the Day lobbying event for pediatric cancer as well as participated in Hyundai's Hope on Wheels Program and Reception announcing September as “Childhood Cancer Awareness Month.” Also within one year's time, we established a website, a Facebook page, and electronic newsletters to our support network! For all of you who make the Foundation possible and for helping us have a solid first year, THANK YOU!!!!!

It is hard to believe that today marks the 60th week of Mattie's death. As more time passes and as this weekly count increases, I am not sure what I am expecting. Am I expecting life to get easier? For this loss to mean less to me, or to feel less pain? Maybe I am expecting that I will wake up one day and feel completely different, different about life, the future, as well as our past! All I know is that none of these things are happening now or most likely any time soon.

I ventured to one of my favorite stores today, AC Moore, and started getting supplies for a project I am working on. As I entered the store, I was HIT with Christmas music. Not to mention rows upon rows of Christmas items. Honestly! It is the beginning of November! All that this holiday stimulation proceeded to do was to make me further depressed. Christmas and big holidays like this, can certainly be a happy and joyful time, but they can also be emotionally laden for so many. They can serve as a reminder of what is missing in your life and the degree of pain and unhappiness you feel. There were many young children with their moms today in the store, and they were aglow over seeing the Christmas aisles. Overall it made for a very overwhelming sight.

Later in the day, I visited Mary, Ann's mom. Visiting Mary and her facility are always a reality check for me. Naturally Mary is an older adult, however, in this care facility there are several young people who are patients. On occasion, I see one young girl, maybe in her 20's, who is visited by her mom. The twenty year old is paralyzed and in a wheelchair, and can't really talk. Yet despite her condition, her mom visits, talks to her, and fills her in on the family happenings. My point to telling you this is despite my saddened state, and moments of depression, I am VERY well aware of the fact that there is a lot of pain and suffering going on around me. I do not corner the market on this, nor do I think I do. Regardless of how I am feeling personally, I am never too absorbed however to take in what is happening with those around me. Which leads me to my next point, and I apologize already for what may appear to be a rant!

At Mary's facility, there is a woman who is in her 90's living there. This woman is mobile and can do many of the activities of daily living that so many others much younger than her are unable to do. She can somewhat dress and feed herself for example. However, this woman is severely impaired cognitively. I naturally do not know her diagnosis, but I suspect she has the late stages of Alzheimer's Disease. In the later stages of Alzheimer's you will see a person who is disoriented, has mood and behavior changes, deepening confusion about events, time and place, unfounded suspicions about family, friends and professional caregivers, and more serious memory loss and behavior changes.

While visiting Mary, I could see this woman was very upset. This is not unusual for this woman, she spends a good portion of her days wandering around, crying, and in fear. Perhaps it was the state I came into the facility today, or perhaps what I observed was just WRONG and speaks to the hateful way impaired older adults are treated in this country. As this woman was crying and clearly showing extreme forms of paranoia this afternoon, I tried to rub her arm and comfort her. She was crying and desperately wanted to leave and go home. So I handed her a tissue and continued to listen and reassure her. While I was attempting to talk to her one of the nursing aides observed what I was doing and told me and Ann that what I was doing would only make the situation worse. According to this aide, the best thing to do for this older woman would be to IGNORE her. You heard me correctly, IGNORE her! When I tell you that it took every fiber of my being to bite my tongue and not respond, I am not kidding. It would be contrary to my helping profession to IGNORE someone in need, putting that aside, even if I had NO skills whatsoever, as a human being, ignoring the pain expressed in another human being is NEVER the right thing to do. This woman is NOT in control of her thoughts and behaviors, she isn't purposefully acting this way to seek out attention. She has a disease that is eating away at her mind, and this leaves her frightened, scared, alone, and sad. How ignoring this situation is going to improve her symptoms is beyond my comprehension! IGNORING her instead is the easier thing for the staff to do, and by ignoring the problem the problem can therefore not affect one emotionally. I suppose that is a coping mechanism many workers adopt who work in assisted and nursing care facilities. So the two main ways the staff works with this woman is either to remove her from her room and have her sit in the hallway or to ignore her altogether. As I saw her sitting in the hallway by herself today, my heart was breaking. I get the fact that the aides have numerous people they are responsible for, but all I could think of is....... imagine if I were this woman. How on earth would I feel?

This woman at one time was vibrant and productive, just like us. Now because of her disease she is quite impaired. But is it okay, or would we be happy with the fact that in our old age, people around us would want to IGNORE us, because this will remedy our ills? All I know is after seeing this horrible picture today, it made me very upset. So what is the answer to all of this? I am not sure, but clearly (and I don't know when it is going to happen) at some point qualified professionals will have to eventually begin working in our assisted and nursing care facilities. People who are trained to work with the mental health needs of the older adult. I continue to be saddened with my own profession, who turns away from aging issues, as well as death and dying issues. These are natural developmental issues, and in a society which is ultimately greying with the baby boomers getting older, I am not sure what we are waiting for. All I know is if this happens to me when I get older, I hope someone either talks to me and reassures me or just gives me a pill to make me sleep the day away. But ignoring a mentally ill older adult is disrespectful and not a viable option to establishing any quality of life.

In the midst of this visit, I had some time to sit with Mary and chat. She was taking a few cat naps, but between naps, she would open her eyes to see if I was still there. Mary let me know that she is worried about me and thinks of me often, and when she can see I am not doing well, she sensitively expresses that I should go home. Which is what I landed up doing. Seems to me friendship has no age limits, and Mary and I are a good example of this!

November 1, 2010

Monday, November 1, 2010

Monday, November 1, 2010

Tonight's picture was taken in October of 2006. Mattie was four and a half years old. We took Mattie to Butler's Orchard in Maryland to pick a pumpkin from the pumpkin patch. This was always an adventure for Mattie, and as you can see from this picture, Peter and Mattie were dragging a wheel barrel to the patch to help transport the pumpkins we picked. Mattie loved being Peter's helper. If Peter was working on something around our home, Mattie wanted to be right beside him to find out what he was doing and how he was doing it. Mattie was curious and he always wanted to be a part of what we were doing, needless to say Peter always had an assistant to help with chores, and I always had my side kick to help with gardening, painting, and even cooking.

Quote of the day: I cant say when the turning point came, but I think it must come for each of us if we let it. Every child who touches our lives, whether for a moment or for decades, has significance. We may have to search deeply for them, but the essential blessings are there - these treasures and gifts from our children. A part of them lives on when we dare to let ourselves remember, because however brief their journey through this world, our memories are proof of their existence! ~ Dana Gensler

I decided to spend the majority of the day outside. I started the day by walking 3.4 miles. However, the first mile was SO incredibly painful to walk. I felt as if I was walking with 10 pound bags of sand attached to each leg. As I continued walking thankfully this pain went away, and I was instead able to focus upon the trees, people walking their dogs, and the birds around me. After walking, I figured with the sun shinning it would therefore be the perfect day to plant daffodil, tulip, and crocus bulbs. Now that it is getting cooler and we could be getting a frost at night this week, I needed to get all the bulbs in the ground before I missed this window of opportunity. Peter planted tulips and daffodils for us and I did all my planting today in Ann's garden. In order to prepare her flower beds for the bulbs, I unfortunately had to pull out some of the wonderful flowers I planted there in the summer. These particular flowers would never have survived our winter, because eventually they were going to freeze and die, nonetheless I am sorry to see some of them go. I planted about 150 bulbs today, and I am hoping that in the spring, after a long winter, these bulbs will surprise us. There is something wonderful about seeing things sprout out of the ground in the spring, and somehow these few spots of greenery after living with months of cold weather restores your spirit.

Ann's garden has been a wonderful restorative place for me to escape to this spring and summer. I spent many a day and hour out there, and as it is getting cooler, I will miss being able to do this. Initially I began planting in Ann's garden because she asked me to assist her with picking flowers for the spring. One simple request landed up taking on a life of its own, so yes I began this project because my dear friend asked for help, but I continued the project because something inside me needed to do this. I have given my involvement in Ann's garden a great deal of thought, and perhaps being able to plant and nurture something after just losing Mattie was healing. It got me outside, moving around, seeing beautiful colors, and connecting to nature! But beyond that it gave me the opportunity to care for something, to watch it grow, and to respond to my care. I certainly could have done that with my own flower boxes at home, but it wouldn't have the same meaning. Ann's garden was NEW territory to me. I wasn't sure what was going to grow there and what was going to be rejected by her soil. It was a challenge that I apparently wanted to take on, and  I was determined to be able to get things to grow and live. So that is part of my reasoning, however, another explanation for spending time in Ann's garden is most likely connected to my friendship with Ann. As my readers know, Ann was our Team Mattie coordinator while Mattie was fighting cancer. She mobilized an entire community around us to help and support us, and the skills and care she shared with us are too numerous to mention here. So it is quite possible on a subconscious level I have the desire to give back to Ann, or to share a skill with her, in thanks for all the many ones she shared and gave to us. So in essence I do think that tending to her garden has become a symbol of our friendship, and not unlike a garden, important friendships also need to be cultivated and cared for. All I can say is in the process of caring for Ann's garden this summer, I saw hundreds of monarch butterflies, chipmunks, crickets, a praying mantis, birds, hummingbirds, and worms. All things that made me pause and think about Mattie.

I find after several days of not sleeping well and being outside for most of the day, I am tired tonight. Which is one of the reasons I decided to write the blog earlier in the evening. As I end tonight's posting, I would like to share a poem I received from my friend Charlie about my most recent dream.

The Dream by Charlie Brown

Last night you spoke to me,
You wanted me to know,
That it is now time for me
To let my sadness go.
I woke up all confused
About whether you were there;
I just can't stop my missing you
It would feel like I don't care.
My son, my little one
I can never say goodbye,
And every time I think of you
I still start to cry.
Maybe someday I'll find joy
In the time you spent with me.
But for now I'm still regretting
How short that time was to be.

October 31, 2010

Sunday, October 31, 2010

Sunday, October 31, 2010

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

Quote of the day: I knew you for a moment, a blest and hopeful while. Now off you go, and yet you'll stay forever, my innocent child. Hush-a-by, hush-a-by....bye. ~ Charlene Nelson

In light of today being Halloween, I decided to find pictures from 2002 to 2008 to share with you. For those of you with children, I am sure you would agree with me, that when you got your child dressed in his/her Halloween costume tonight and took pictures, the thought of this being your child's last Halloween never came to mind. As a parent we just don't think in these terms. We take pictures most likely to capture memories that we can relive and share with our children as they get older. Pictures that can be shared through the generations. Unfortunately for Peter and I, pictures are all we have left, and I am so thankful I took plenty of them!

In 2007, Mattie was an air force pilot. He and I went together to pick out his costume that year, and he immediately gravitated to it! Mattie always loved airplanes and the thought of flying and being in control of a plane fascinated him. In 2007, Mattie was 5 and was in kindergarten.

In 2006, Mattie was a calico cat. Just like his cat, Patches! In fact, I made this costume myself for Mattie in 2005, however, he never wore it until Halloween 2006. Mattie loved Patches and when I couldn't find a calico cat costume, I decided to make one myself! In 2006, Mattie was in his last year of preschool.

On Halloween 2005, Mattie was hospitalized at Virginia Hospital Center with sepsis. I brought Mattie in to see his doctor earlier that week, because I suspected he had an ear infection. The doctor dismissed us, saying that his ears were fine. Sure enough, Mattie did not get better and the day before Halloween we took him to the emergency room. He was severely dehydrated and his blood work was all over the place. So he was admitted to the hospital. This was our first experience together living in a hospital room for two days, and I recall Mattie was so upset that he was unable to wear his cat costume and celebrate Halloween. Unlike Georgetown, Virginia Hospital Center at that time was not set up well for children, and certainly there was NO one like Linda (Mattie's Childlife Specialist) around to help ease family tensions and to help the children celebrate holidays in the hospital. Mattie's nurse felt badly for him and I remember she came in and brought him some Halloween pencils and a lollipop. Mattie was so sick however, that I am not sure this made much of an impression on him. However, I got a crash course for hospital living back then, and I did my fair share of screaming then as well. It was a hard two days, surrounded by medical personnel who were not well versed in caring for children, so much so, that the techs did not know how to take a child's temperature, and when they wanted to examine Mattie, they wanted me out of the room (because his nurse felt he wasn't going to comply with her wishes with me in the room!!!). Needless to say, I flipped out with that nurse and reported her immediately.

In 2004, Mattie was Winnie the Pooh! Mattie was two and a half years old in this picture!

In 2003, Mattie was an adorable pumpkin. Mattie did not like the idea of wearing a costume at all. He found it scary and also did not like the texture of things against his skin. However, when he saw this option, he liked it a lot. Mattie was a year and a half in this picture.

On Halloween 2002, Mattie was 6 months old. Mattie did not wear a costume that year, nor did he go trick or treating. However, you can see him in this picture in his favorite form of transportation, "tot wheels." Mattie never crawled, however, he had strong legs, and when we put him in this walker, he would literally race ALL over the first floor of our home! I still have the track marks on our wooden floors to prove it!

Peter suggested we go out today and take a walk by the Potomac River and have lunch outside. For me it was a cool day, but the idea of fresh air and being outside sounded like a good plan. While we were having lunch outside (mind you I was wearing a coat to do this and Peter was in SHORTS!!!!), Peter took some wonderful pictures. This light post caught his attention because it reminded us of a person blowing in the wind.

In honor of Mattie, Peter snapped a picture of this black squirrel today. Unlike me, Mattie loved squirrels, and some how seeing this fellow seemed very halloweenish. You don't always get to see a black squirrel around. The funny part about Mattie was he also loved collecting acorns, and some how he and the squirrels would compete for these nuts. Mattie had quite an acorn collection at one time!

For those of you who e-mailed me today, shared pictures of your children in costume, and just reached out to say you were thinking of us, we THANK YOU!

Saturday, October 30, 2010

Saturday, October 30, 2010

Tonight's picture was taken on Halloween of 2008, Mattie's last Halloween ever. It is hard to write this statement and even harder to believe it. Thank goodness when I took this picture that I had no idea what was in store for us in the months to come. Mattie spent Halloween 2008 with his best preschool buddy, Zachary. Mattie and Zachary basically grew up together. They met each other at a time when both of them were learning about themselves as well as the art of being a good friend. However, their friendship just happened, as if they were drawn to each other. There was mutual respect, mutual fondness, and mutual understanding. A friendship that in many cases takes a lifetime to find. For Mattie it happened on his first day in preschool! Looking back on preschool and even his kindergarten year, friendships just happened with Mattie. Partly it was his personality, but a part of me can't help but wonder whether these special friendships happened instantaneously for him because time was NEVER going to be on his side. Mattie and Zachary were inseparable friends in preschool, and though they went to different schools for kindergarten, their connection was powerful and they would pick up their friendship where they left off whenever they met. So on October 31, 2008, understand that Mattie and Zachary were attending different schools, yet they both wanted to trick or treat together. We went over to Zachary's house and as you can see from Mattie's mummy costume, his right arm was bandaged from his first limb salvaging surgery (which happened only weeks before Halloween). That evening, Zachary's neighbor also joined us as we went trick or treating. Zachary's neighbor wanted to run with Zachary from house to house to collect candy, but Mattie couldn't run. It was hard and UNSAFE for him to do this with his "bionic" arm, as we called it. He just had surgery and honestly I was a nervous wreck as Mattie was out walking on the dark sidewalks. I envisioned him tripping and falling on his arm. However, despite my fears, I wanted him to have fun, to be connected to Zachary, and to be a kid. I tried to explain to Mattie that it was okay if Zachary ran ahead with his neighbor, because we would catch up. But I could tell Mattie was upset. The next thing that happened however, remains with me today. Zachary spoke to his neighbor and told him that Mattie was his friend, and Mattie was unable to run, and therefore he wasn't going to run either. The neighbor basically had Zachary choose between him or Mattie. Zachary chose to stay with Mattie and he told this to his neighbor in no uncertain terms. That night I looked at Zachary quite differently. He was no longer the little four year old I once knew, instead, at age 6, and was mature, loyal, and a compassionate friend. A friend, I will never forget. It was that thoughtful gesture Zachary made that evening, that made Halloween 2008 special for Mattie. Zachary made Mattie feel important, special, and yet NORMAL..... A Halloween NOT to be forgotten.

Quote of the day: There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning. ~ Thornton Wilder

Sometimes things happen to you while grieving the loss of a loved one that makes no sense. Or perhaps you have no rational explanation for them, other than you feel that they have happened. Last night I had a dream. A dream in which Mattie was talking to me. This is the first dream I have had in which Mattie appeared to me. I could see his face and hear his voice clearly. Without a doubt I felt it was Mattie. I chose tonight's quote because my dream helped me connect the land of the living with the land of the dead.

As many of my readers know, I have had a week of great struggles. Not that these issues aren't a part of my previous weeks, they are, but this week all these issues were heightened. They were heightened, overwhelming, and I have found myself crying a lot. I have been reflecting on sadness, guilt about Mattie's death, and the unwillingness to live and be happy at times because Mattie is no longer in our lives. I am telling you this because it sets the stage for my dream. In my dream, I am in Peter's car and he is driving. I am sitting in the passenger seat and we are talking. As we are talking, I am hearing whimpering noises. As if someone is crying. Clearly it isn't Peter or I. So I begin to look around the car to locate this noise. When I turn around and look over my shoulder, who do I see, but Mattie. Mattie was sitting in his toddler car seat (note that this was not Mattie's most recent car seat, which instead was a booster seat). Mattie must have been around age 4 in my dream, and I can see him crying. In the dream I feel confused, and I ask Mattie why he is crying. He lets me know that he is crying because I am SO sad and that I feel guilty that he died. Mattie then says to me that he doesn't want me to feel this way. With that, I was startled awake, and as I was coming into consciousness, I frankly was disoriented. I did not know if I really dreamt what I was reporting to you or what. Most likely I was just stunned that I would have such a dream based on the horrible week I have had.

Looking at this from a very scientific stance, I could explain the dream as my mind trying to help me resolve the inner turmoil I am living with, and naturally the only way to relieve these feelings would to hear from Mattie directly. However, as I was telling Peter about this dream tonight, he started laughing. He was laughing because he felt that Mattie was communicating with me, and it was just like Mattie to be looking out for me even from beyond. I don't know what to say about the dream, other than it has been on my mind all day today. Hearing Mattie crying and seeing him talk to me seemed so real, that it actually shook me awake. Do I think it is possible that Mattie is sending me a message? That Mattie is reaching out to me to tell me he can see me, and that he doesn't like what he sees? My answer is MAYBE! This is as far as I have gotten with processing this dream, but I have replayed it in my mind today numerous times, like I was watching a movie clip.

I spent the afternoon with my friends Katharina (my 10 year old friend) and Tanja. Katharina had a Halloween party today, and she personally invited me to attend and be a part of it. I got to their house before the party started to chat and help with any last minute items. I had the opportunity to meet Katharina's pet guinea pig, Jo Jo, and to hear about some of the activities they were going to be doing at the party. As Katharina's friends arrived, I had the opportunity to meet all of them. One of the young girl's came up to talk with me because she liked my necklace. It happened to be a Halloween necklace that Mattie created for me. She liked the beads Mattie selected such as bats, ghosts, etc..... The girl asked me if I was at the party because I was a mother? Great and realistic question! I answered her by saying I "was a mother." She then asked me who my child was at the party. I told her that my son "wasn't here." She then asked me where he was and why he wasn't at the party. My response was because "he was sick." This young girl caught my attention, mainly because I found her observations interesting, and her desire to know who I was. Her questions were asked in an innocent way, and I had no time to think about my answers. However, would my answers be any different now, since I have had all night to think about her questions? Most likely NO! My answers to her were truthful. I was a mother and Mattie wasn't at the party because he was sick. I did not feel it was important for this young girl to know that Mattie died and that I was dealing with grief.

As the party continued on, I was looking outside into Katharina's backyard and observing all the children. As I was absorbing all of this, Katharina came inside to talk to me. She put her arms around me to specifically ask me if I was okay. I told her I was okay, but she did not buy that answer and instead she said she came in because she felt that I looked sad. I thought that was a very kind, sensitive, and mature gesture. In many ways, though I have not known Katharina for very long, I sense that we have a special bond with one another. She text messages me almost every day, and I find that on some level she understands what life must be like for me without my only child in it.

Tomorrow is Halloween, and I just do not know how to greet or deal with the day. In a way, this Halloween is much harder that the last one. The last one I was TOO numb from Mattie's death to feel anything. This Halloween, I am much more raw and much more emotional. I don't know what the answer is, to spend it alone, or to spend it with Ann and her children. With the Marine Corp marathon falling on Halloween this year, it practically shuts down the city and most of the means of getting out of the city. So in a way, based on practicality and how we are feeling emotionally, it is most likely a day we will spend alone.