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 helpothers.org, 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. http://www.helpothers.org/index.php

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.

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.

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 (www.wsrr.org/). 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!

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.

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.

Friday, October 29, 2010

Friday, October 29, 2010

Tonight's picture was taken during Halloween week of 2008. Mattie was trick or treating at the Hospital, dressed in his mummy costume. Pictured with Mattie was one of his favorite volunteers, Sally the Story Lady. My mom and I LOVED Sally! Sally had a way of making a story come alive. She would have all of us participate in the story and act out a role. Mattie usually did not participate, but would get a kick out of watching me make a fool out of myself as I was playing a part. He enjoyed that immensely! Sally came to the Hospital each week, and each week she came dressed as a character from the story she was going to perform. Sally was a true talent and she saw potential in Mattie. She told me early on that she found Mattie to be very intelligent and creative. I remember one day, I took a break and went into the hallway. I left Mattie with Linda, Mattie's childlife specialist. When I came back in the room, I found Sally in there with all her students. Students who were studying acting under her tutelage. Needless to say, she had Mattie up, engaged, and I could tell Mattie was directing things, and the students seemed enthralled by the instructions he was giving them. It was a sight to see! I did take a picture of that scene and will try to track it down to show you one of these days!

Quote of the day: I'm loving you, I know you're there yet I'm not sure where you are. Are you sitting here beside me, or were you the bird that flew? I feel the wind blow in my ears, and I'm wondering if it's you. Are you reading over my shoulder? Are you holding my hand right now? I want to tell you I love you, I'm not sure if I know just how. I can feel you wiping my teardrops, and asking me, please, not to cry. But I'm missing you, loving you so much. And I'm wondering why you had to die. ~ Brandy Sively Portera


In line with the rest of the week, today began with a difficult start. The kind of start where I saw no reason to get up. I have days like this, and frankly it has been one of those weeks. As I continue to write the blog, I struggle with what to report to you each day. I could certainly sugar coat the day for you, and I found myself subconsciously doing that for the past couple of days. Until, I finally asked myself why I was doing that? Was I doing that to protect myself or because I thought that this is what my readers would want to hear? That things are improving and life is "moving on" for Peter and I! Of course, my faithful readers will know that even on a GOOD day, I would never use the terminology "moving on" to describe my current feelings or state. I despise that term, almost as much as the "new normal!"

Then out of the blue, I received an e-mail from someone I did not know last night. She contacted me professionally to ask me questions about graduate school. Typically when I respond to these inquiries, I make sure I take Mattie's blog website off the footer of my e-mail. However, yesterday, I must have accidentally forgotten to do this. So this student wrote back to me thanking me for the information I gave her about graduate programs, but the basis of her e-mail was to thank me for writing the blog. She apparently read quite a good portion of it, and wanted me to know that it was timely that she connected with me since yesterday was the seventh anniversary of her youngest brother's death. I was very touched by her e-mail and what she quickly surmised from reading the blog is that we have quite a community supporting us. I found this young woman's observations of our story simply fascinating, and I guess the conclusion I came to is that the majority of people who come to read the blog do this because of my honesty and openness. Therefore, sugar coating things and also not being genuine serves no purpose to you as the reader or to me as the writer trying to express my thoughts and feelings through this difficult lifelong journey of grief.

As is typical, I received a text message from Ann this morning, but I did not respond. However, she is persistent especially when she senses that I am not in a good place. So she finally called me. We talked about various things at first, and then she started to ask me what was going on with me. She knew I was still in bed and really had no prospect of getting up. I talked and cried and Ann listened. There are days where I struggle with my purpose and lack of direction. I struggle with the fact that things that once interested me, no longer do, and I struggle with missing Mattie. I also struggle with giving myself permission to continue living without Mattie and to find happiness. There is a great deal of guilt one experiences, especially a parent when you realize you were unable to save your child from such a horrific disease and death. So allowing oneself to feel joy and happiness produces guilt. As we continued on talking, it became clear that I had to start working on a goal, a goal that would help me capture Mattie's life and memory. That goal is to write a book. That is a daunting goal, even under the best of circumstances. I know others have urged me to consider this, but with me, writing has to be on my own terms and when I am ready. I have to develop a certain mindset to do this, and there are things I can begin to do to get there. My philosophy that worked when I wrote my dissertation, was that I would do something each day toward  the writing and completion of this major research endeavor. Some days the something was big and other days it was small, but the point was to have it always in my consciousness! So I am trying to adopt this proven strategy for Mattie's book.

One of the things I began to do today was to read a book written by a mom whose son was also treated at Georgetown University Hospital. I find reading another mom's perspective is helpful for me, as I start brainstorming my own thoughts. The book is entitled, Saving Henry, by Laurie Strongin. Laurie started the Hope for Henry Foundation, which is the Foundation that donates Halloween costumes to children at local hospitals (in fact Mattie's mummy costume came from this Foundation!). Her Foundation does many wonderful things for seriously ill children, of which Mattie benefited from this generosity. I read the first four chapters of Laurie's book today, and as soon as I picked it up and read her acknowledgements, I began to cry. She wrote how Henry's diagnosis impacted her marriage, her life, and her future. As she elaborated on this, I found that I deeply related to what she was saying. We have two very different stories, and yet we share commonalities.

This evening, Peter and I went out to dinner with Nancy, my friend and colleague visiting from New York. We introduced Nancy to Mattie's favorite restaurant and chatted for many hours. Nancy lovingly created a beautiful scrapbook filled with all the poems she has written to us over the year since Mattie died. This is a very special and thoughtful gift, because I know this took time, love, and creativity to put together. Nancy has scrapbook pictures on each page of things Mattie would have loved, like bugs for example! The second gift Nancy gave us was a book entitled, Hug! Nancy collects things with hugs or things that show or discuss hugs (such as books, book markers, photos, etc.), and she shared one of her pieces from her hug collection with us. Within the Hug book, she wrote an inscription poem..............

For Mattie - The Power of a Hug by Nancy Heller Moskowitz

A hug warms the body.
Each of us seeks its solace.
Some come easily.
Others, a distant wish,
an inconvenience, a threat, no longer possible.
The hug between a parent and their child
Heaven.

Nancy got Peter and I to talk and elaborate on some of our feelings tonight. We had laughs and we also had tears. Since Mattie's death, I have many irrational beliefs, and as I was elaborating on two of them tonight, Nancy said that this alone should be a chapter in the book. Mainly because these are beliefs others who are grieving have in one way or another, and they have to be dispelled. For example, at times I blame myself for Mattie getting cancer. When I was pregnant with him I was working on my dissertation, and it was a highly stressful time in my life. I blame the stress for his illness. Naturally I know this serves no purpose nor is logical, however, parents of children with terminal illnesses struggle to find meaning and reasons for why things happen, and the natural person to blame is one's self. If you think this belief is over the top, I have many others. Needless to say, I am happy Peter had the chance to meet Nancy, and I am happy we had these moments to share our thoughts without the fear of being judged. As we completed dinner, we bumped into our friends Debbie and Peter at the restaurant. It is a small world, and I am finding that Mattie's favorite restaurant, is a favorite by many of our friends. Debbie is a daily blog reader, and she and her husband have been so incredibly supportive of us throughout this ordeal. Somehow seeing them at the end of the night was symbolic. It was symbolic of what Mattie left for us, an amazing community of loving people supporting us still.
I would like to end tonight's posting with a poem I received from my friend Charlie. She wished me "enough," and I most certainly wish this to all my readers.

I wish you enough...................

Recently I overheard a Father and daughter in their last moments together at the airport. They had announced the departure.
Standing near the security gate, they hugged and the Father said, 'I love you, and I wish you enough.'
The daughter replied, 'Dad, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Dad.'
They kissed and the daughter left. The Father walked over to the window where I was seated. Standing there I could see he wanted and needed to cry. I tried not to intrude on his privacy, but he welcomed me in by asking, 'Did you ever say good-bye to someone knowing it would be forever?'
'Yes, I have,' I replied. 'Forgive me for asking, but why is this a forever good-bye?'..
'I am old, and she lives so far away. I have challenges ahead and the reality is - the next trip back will be for my funeral,' he said.
'When you were saying good-bye, I heard you say, 'I wish you enough.' May I ask what that means?'
He began to smile. 'That's a wish that has been handed down from other generations. My parents used to say it to everyone...' He paused a moment and looked up as if trying to remember it in detail, and he smiled even more. 'When we said, 'I wish you enough,' we were wanting the other person to have a life filled with just enough good things to sustain them.' Then turning toward me, he shared the following as if he were reciting it from memory.
I wish you enough sun to keep your attitude bright no matter how gray the day may appear.
I wish you enough rain to appreciate the sun even more.
I wish you enough happiness to keep your spirit alive and everlasting.
I wish you enough pain so that even the smallest of joys in life may appear bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish you enough hellos to get you through the final good-bye.
He then began to cry and walked away.
They say it takes a minute to find a special person, an hour to appreciate them, a day to love them; but then an entire life to forget them.

Thursday, October 28, 2010

Thursday, October 28, 2010

Tonight's picture was taken during Halloween week in 2008 in the childlife playroom of the Hospital. You can see Mattie's mummy costume that he selected for himself, and next to Mattie was his big buddy, Brandon. Brandon was receiving treatment that week within the Hospital, however, despite being in-patient, Brandon participated in the festivities and was quite creative with his costume. He was a great pumpkin!  It is ironic in a way that a six year old and an 18 year old could be such good buddies, considering their vast age difference. But they were good for each other, and as Mattie told Toni (Brandon's mom) toward the end, "Brandon is my best friend!" While fighting cancer Mattie needed a friend who understood, who lived the process, who knew what it was like to feel sick from chemo, to not want to be around people, and to just accept him for however he looked and felt. Brandon was that friend. In all reality, I learned amazing life lessons that 15 months in the Hospital.

Quote of the day: I heard quite often men don't cry, though no one ever told me why. So when I fell and skinned a knee no one came to comfort me. And as I grew to reasoned years I learned to stifle any tears. No pain or setback could there be could wrest one single tear from me. Then one long night I stood nearby and helplessly watched my son die. And quickly found to my surprise that all that tearless talk was lies. And still I cry and have no shame I cannot play that big boy game, and openly without remorse I let my sorrow take its course. ~ Ken Falk

I selected this quote tonight based on some commentary I heard on the radio this morning. The radio host was telling her audience that a well known country singer is dressing up for Halloween. He is dressing up as Batman and his son will be Robin. She was clearly impressed that this singer was spending this time with his son and was truly enamored by this notion. She literally proclaimed him as a "great dad" on the radio! I listened to this hype and simply laughed. I am not downplaying this gesture, sure, a parent doing something fun with a child, and participating in such an activity are important for the relationship and the connection. But that alone doesn't qualify one as a "great" anything, much less a great parent! Which brings me to tonight's quote.

Men are socialized in our society to be the solid ones, the tough ones, the one's who show NO emotions (especially crying), and the even keeled ones. I am not sure who this stereotype is helping in all reality. I do think that men and women are naturally hard wired differently, but it is also difficult to distinguish the origin of these differences when societal forces condition boys and men to be a certain way. I do think that cancer however evens the playing field. Whether you are a man or a woman, when your child has been touched by cancer or a life threatening illness, crying, anger, rage, guilt, and sadness happens! The reactions to having cancer are gender neutral and instead they are simply HUMAN.

I received an e-mail from Kristen today. As many of you know, Kristen was Mattie's oncologist and through this ordeal has become our friend. Kristen forwarded me the link below and wanted to alert me to the fact that the Food and Drug Administration (FDA) has advisory committees, and these committee meetings are open to the public. Of particular interest is the pediatric oncology subcommittee on the oncologic drugs advisory committee. The next meeting is on November 30 and runs from 8am until 5:30pm. The public is welcome to attend and to make oral presentations (if you notify the committee prior to the meeting).  Kristen is aware of the Mattie Miracle Foundation's desire to become advocates for more effective treatment options for children fighting cancer. Keep in mind most of the current pediatric cancer drugs are over 25 years old, and only one new drug has been FDA approved in the last decade for children. Frankly I am not sure it is common knowledge that these meetings are open to the public.
http://www.ofr.gov/OFRUpload/OFRData/2010-27322_PI.pdf

This morning, I headed to the train station to pick up my friend and colleague, Nancy, who is in town for a conference. Nancy found me right away and we talked for 45 minutes straight as I brought her to the conference hotel. Nancy began the conversation by telling me how much my writings and blog means to her, and then she wanted me to know that she is in "awe" of me and what I have accomplished. Nancy had me reflect on my days in the Hospital and just how overwhelming those days were. But this cancer fight wasn't for just day or so, this was for 24 by 7, for over a year. I naturally know this on the physical level, since I feel the ramifications still of living life like this, but to emotionally reflect upon this devastation is overwhelming. Nancy is getting together with Peter and I for dinner tomorrow night, and this will be her first time meeting Peter. She never met Mattie, yet through the blog she feels as if she always knew him.

I met up with Ann and her mom, Mary for lunch. This was Mary's first time out of the assisted living facility since she was transferred there last week. It was a beautiful weather day, and I know that Mary appreciated being outside and to feel the warmth of the sun. These are things we take for granted, until you live in an institutional setting, and live with only climate controlled air! Toward the end of the lunch, Mary and I had a chance to chat together, and Mary said life is hard enough, but it is too hard when you lose a son! I couldn't have said it better myself!

After lunch, I was walking back to my car, and ran into a homeless woman asking people for money. The majority of people who passed her did not acknowledge her nor did they give her money. For the most part, Peter and I contribute to different charities, and I rarely give money to homeless individuals that pass me. However, this woman caught my attention. She held up a sign that she was trying to support four children, and had a very haggard look on her face. So when she approached me, I stopped to talk with her. I did land up giving her money. She said that she hoped God blessed me, and I wished her the same. However, as I left her, a manager from one of the stores in the complex came out and was screaming at her. He told her she couldn't be loitering around and if she did not leave, he was going to call the police and have her arrested. I tried to understand his point of view, but what I did NOT understand or condone was the rude and disrespectful manner he was talking to this woman. She was naturally embarrassed, as anyone would be if yelled at in this manner, and I left that scene feeling disgusted. Disgusted because of the heartless way human beings can sometimes treat one another. This whole episode bothered me on the way home, and I told Peter all about it. His one response was.... I did the right thing. Not sure, since a part of me felt like I should have stayed around to advocate for this woman.

Between this scene with the woman and feeling particularly down this week, I decided to try to walk. I walked 3.4 miles, however, I did not feel much better after the completion of that routine. So when all else fails, I rest. It is Thursday, however, in all reality I have felt this way all week. I suppose it is only getting worse as the week continues, and knowing that Sunday is Halloween only compounds the problems. Wherever I go I see Halloween decorations, cards, candy, and costumes. Halloween is about children, and in our case it only further illustrates the amazing loss in our lives.

Wednesday, October 27, 2010

Wednesday, October 27, 2010

Tonight's picture was taken in our living room during the week of Halloween in 2008. Mattie chose to be a mummy that year, and it was an excellent choice, because his right arm was bandaged up from his limb salvaging surgery. However, with this costume you couldn't tell that Mattie had an operation nor could you tell that he had NO hair. Mattie loved this costume for just these reasons! The costume made him feel normal, because he was able to dress up like the other kids. Mattie was the first one to pick out his costume at the Lombardi Clinic. Each year, a wonderful local organization, donates hundreds of Halloween costumes to the clinic. Mattie originally went into the clinic thinking he wouldn't find a costume that would work for him! To his surprise, he found this mummy costume. It was the ONLY one like it, and it fit him perfectly. It brought a smile to his face. In this particular picture, my mom took a picture of Mattie and I (I was a black cat!) dressed up to go to the Hospital Halloween party. Halloween is a big deal at the Hospital, with parties both in the clinic and the inpatient unit. The children are also escorted (with parents, a childlife representative, as well as a nurse) around the Hospital to collect candy from all the offices! Mattie walked around for over an hour that day, and seemed fine during the walk, however, once the walk was over, he was very depressed and needed time away from the crowds.

Quote of the day: The world will little note, nor long remember, what we say here, but it can never forget what they did here. It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us - that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion - that we here highly resolve that these dead shall not have died in vain. ~ Abraham Lincoln, The Gettysburg Address

Lincoln's address is VERY moving. However, what if I did not tell you that Lincoln spoke these words, or that these words were part of the Gettysburg Address, then what? What would they mean to you?! Well frankly when I read these words, what struck me was that this speech could very well apply to Mattie and all the children who have lost their lives to cancer. Those of us who remain behind after such a tragedy are left with an "increased devotion" to the cause. The cause being to eradicate pediatric cancer, and to make sure that our "dead shall not have died in vain." Seems to me that Lincoln's words were poignant not only in 1863, when he delivered this speech at the dedication of the Soldiers' National Cemetery in Gettysburg, Pennsylvania, four and a half months after the Union armies defeated those of the Confederacy at the decisive Battle of Gettysburg, but even TODAY!

Being a cancer survivor, which is a title I think Peter and I have earned, evokes one of two reactions in a person. The first reaction could be that of needing distance from the disease, distance from hearing about the disease, and seeing others contending with cancer. The other reaction, would be the exact opposite. Wanting to advocate, help, and participate to make a difference. I am not implying that one reaction is better than the other, I am just saying I have noticed within the survivorship community these two stark contrasts exist. Both of which are very understandable to me!

My initial plan this morning was to get up early and walk. However, when I woke up, it was dark and pouring. So I jumped back into bed, and stayed there for a while. On these kind of days, I do struggle for a reason to get out of bed. I am involved in a couple of projects now that require research before I can procced. One of the projects you already know about, it is the project for one of the kindergarten classes at Mattie's school. I spent a portion of the afternoon at the library looking up the lives of Matisse and Picasso. I found some wonderful books geared toward children, and then also checked out some biographies on these artists so I can get more indepth information on their lives, artistic styles, and creations. I haven't spent much time in a library recently, so today's visit was special. It reminded me of all the days I have spent in the library over the years as I was trying to obtain my degrees. A library is like a second home to me, and even when Mattie joined the St. Stephen's and St. Agnes School, I became a library volunteer. I worked in the library every other week, for 4 to 6 hours at a time. Today, I chatted with most of the librarians, I had them help me search and find materials, and by the end, the stack I checked out was half my size.

When I got home, the test was how to carry all the books, dry cleaning, and other items upstairs to our home in ONE trip! Fortunately, the answer was to use Mattie's stroller. Mattie's stroller remains in my trunk at all times. In fact, many of Mattie's things are in my trunk. I naturally know Mattie isn't coming back to use them, but having his things with me are symbolic of his place in my life. Today I needed an extra set of hands to carry everything, and in some way, Mattie (through his stroller) was there to help me.

I was unable to do my walking routine today, and that definitely affected my mood. As the evening wore on, I got a phone call from Ann's cousin in Boston, JP. Many of you may recall that JP came to visit Ann in August, and during that time, I had the chance to spend time with him. The first thing that JP said to me on the phone was... "I miss Mattie!" JP met Mattie only once, in July of 2009, two months before he died. Yet JP understands the pain of losing someone very special, and I admire his courage to be able to verbalize his feelings and not worry how I will react to his comments. I couldn't have said it better....... WE miss Mattie!

I would like to end tonight's posting with a message I received last night from Mattie's oncologist and our friend, Kristen, Kristen wrote, "I hope you are doing well. I think of you often...which you may or may not know. Last year, about this time, I planted bulbs which came up several weeks later. They didn't come up this summer but I thought they would sit around until next summer. Well, would you believe that out in our flowerbed the same bulbs are coming up again this year?? There is a single tiny purple flower which has also come up. It's really the strangest thing. And of course, it reminds me of Mattie...because he would find it so magical. Thinking of you both this Tuesday and every day."

Tuesday, October 26, 2010

Tuesday, October 26, 2010 -- Mattie died 59 weeks ago today.

Tonight's picture was taken around Halloween of 2008. Mattie was home recovering from his first limb salvaging surgery, and he built "Mattie's Haunted Mansion." He used tinker toys, ghost and pumpkin cut outs, spiders, and what you can't see in this picture were the Halloween lights he eventually wrapped around this structure. At night time, this mansion had an amazing glow to it. Notice also that Mattie placed a pumpkin right in the middle of the mansion. In fact, as that week went on, more and more things were added and attached to this structure! By the time he was finished it was definitely a conversation piece. 


Quote of the day: The heart hath its own memory, like the mind. And in it are enshrined the precious keepsakes, into which is wrought the giver's loving thought. ~ Henry Wadsworth Longfellow


On the 59th week that Mattie has been gone from our lives, Longfellow's quote seems to capture the sentiments Peter and I feel. The heart may not have a memory, or a memory like we associate with our minds, but the heart can most definitely recall feelings instantly. The heart's recall is so vivid, that in many cases these memories can transported right back in time, to a time where that feeling was first captured. Feelings can be evoked from a sight, a fragrance, or the sound of a musical note. I have found these are all very true for me since Mattie's death.

It is ironic that Mattie began his life with difficulties understanding and processing his sensory environment. Here are some examples, Mattie did not like wearing certain clothes because of the texture, all clothing tags were a major issue, he had a huge physical space issue, so much so that if you came within 5 feet of him, this would make him upset and sometimes provoke aggression and biting attacks, Mattie had issues swallowing certain foods, he did not like the feeling of water against his skin, nor did he like sand or anything with a texture against him. Noises also induced fear. There were other sensory issues as well, but I wanted to give you a few examples so you understood what I was talking about and also understood the amazing work Mattie and I put into his occupational therapy sessions for two and a half years. He worked very hard to overcome these issues. Mattie was a trooper, his occupational therapist was a God sent, and in this learning process Mattie and I became even closer. In many respects, Mattie was like me. We are both overly sensitive to our environment, and therefore, many of the things I see, hear, and smell stimulate my feelings and memories of Mattie.

I went to the mall today with Ann, and one of the kiosks there was selling products that were scented with natural herbs. I quickly deciphered the smells of lavender and chamomile. Two fragrances that bring me back to the days when Mattie was a baby. Mattie had to be taught to go to sleep. Sleep did not come natural to him, and some of you may recall that by 16 months of NO sleep, I finally broke down read Richard Ferber's book, Solve your child's sleep problems, and within two days, Mattie was sleeping like a charm! Ferber became my first hero while raising Mattie! But prior to Ferber, I tried music, special lights, blankets, and of course baths with lavender and chamomile. Forget it! Nothing worked, other than I have associated lavender and chamomile with training Mattie to fall asleep!

I began my trip to the mall however, in a very fragile state. When Ann got to the Mall, I was sitting on a bench crying. Moments can hit me at certain times, and this morning was one of them. Ann and I have different styles. I am typically a very touchy feely person, and Ann may be perceived as the opposite. However, she understood how I was feeling and worked very hard at getting me out of my funk. Needless to say, when in a funk, shopping can be very good medicine. We went into Ann Taylor, and I learned about Miracle Pants today. What a NAME! Any case, they feel and look lovely and before I knew it, funk and all, I bought pants. We bopped around to different stores, and landed up in a tea store. Ann bought me jasmine tea, which is a fragrance that takes me back to the days I lived in California. I remember the first time I tasted jasmine tea with my parents on a vacation. So in essence today was a VERY sensory filled day for me, that reminded me of various points in my life.

When I got home, I decided to go walking on a treadmill. While in our complex's exercise room, I bumped into Maria, a big Mattie supporter, who runs our rental office. Maria follows the blog each day, so while I was walking, I began chatting with her about my visit to see my parents. We exchanged vacation plans and caught up with each other since we last saw each other. I landed up walking 3.78 miles and I find when I am bothered by things, I walk. The longer I walk, the greater the problem. Needless to say, I am all aches and pains tonight.

I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy lives in New York and is coming into town on Thursday for a conference. I haven't seen Nancy in over a year, so it will be nice to have this opportunity to reconnect with a friend who has been so supportive through this journey! Nancy wrote, "I was so interested in yesterday's blog as it spoke on a very personal level. Not that others haven't , but, this one seemed more intimate. I am so proud of you for continuing to write and think that this account of your journey provides hope even when hope is dwindling within a family and this diagnosis. I believe children concentrate on what is in the moment, that's what becomes so frustrating for parents. They tend to project and worry about other consequences. Children see what they want and go for it, if allowed. I am so taken by Mattie's desire for creation and inventiveness during his illness. He wanted to experience everything he could. Peter and you gave him the tools by spending time and energy with him, no matter what the circumstances. I remember your feelings of frustration when times were tough and you gave of yourselves anyway. That behavior is what separates wonderful, caring parents from those that see their children as a symbol of their competence. I continue to be in awe of all the pictures you have of Mattie. What a history, although, one that ended too soon."