Saturday, July 30, 2011

Saturday, July 30, 2011

Tonight's picture was taken in May of 2007 at Dutch Wonderland in Lancaster, PA. This picture completes the series of photos I have been displaying on the blog from that family trip. As you can see Mattie and Peter went on a water ride that happened to go up and down steep inclines. Mostly definitely NOT a ride for me, but as you can see Mattie loved it!

Quote of the day:  It seems the misfortune of one can plow a deeper furrow in the heart than the misfortune of millions. ~ Kirby Larson 

This is actually a very interesting quote, because I do think on some level this is very true. We are definitely moved and our hearts ache when tragedy strikes a group of people whether it be for example from the massive devastation of September 11th, the Oklahoma City Bombing, the bombing and shootings in Oslo, Norway, or the earthquake in Japan. Nonetheless, I do think that the impact on each of us seems to be magnified when a misfortune hits someone we know. I have seen how Mattie's cancer and his death has impacted our friends and family, and this loss (though perhaps not talked about each day) has become ingrained in so many. So much so that Mattie's battle and death have affected how people live their lives, how they evaluate a problem, and the time they spend with their children. I have to believe that we are all taken aback when something happens to someone we know, because in our minds we realize this could have happened to us. It makes the tragedy more real, more tangible, and far more daunting. Which is why it is so memorable and remains etched somewhere in the recesses of our minds and hearts. Pediatric cancer is a worldwide tragedy and impacts families daily. Yet most of us will not reflect on this fact, but Mattie's community I have a hunch will never forget that kids do get cancer. Mattie made pediatric cancer real for all those who touched his life.    

Peter went for a walk this morning on Roosevelt Island. Along his journey he snapped a picture of this sight! Basically a snake shed his skin and left it on a tree stump. I STRONGLY dislike snakes!!! So Peter did not take this picture for my benefit, but this would have been a sight Mattie would have absolutely LOVED! Also along Peter's walk he found a kid's pretend gold coin. Peter brought it home with him, and both of us seemed to immediately think of Mattie! Mattie loved collecting coins and it seems to me Peter had his own Mattie signs today.

For two days now I have visited Mary, Ann's mom. Yesterday Mary announced to me that she got married. However, it was a secret and no one knew about it! Particularly me and her daughter. She wanted to break the news to me because she wanted my opinion on how to tell Ann. Honestly at first, I thought that Mary was serious. But I am good at playing along, and sifting through information to determine if something is real or a delusion. What I assessed after a few minutes was Mary was pulling my leg. She was having fun with this made up story, and knew it wasn't real. But she had me going for a while. The story however makes her laugh, smile, and talk! We talked about it for over an hour yesterday, and it continued today. We are having a grand old time imagining a wedding, her new house, and so forth. What all of this tells me is Mary has a good sense of humor and isn't afraid to be creative. She just looks at me and smiles now, and I know that means she wants to talk about her "wedding." Personally I find this form of creativity to be a wonderful coping mechanism. It makes us talk, laugh together, and imagine a world beyond her four walls. It fascinates me that I have known Mary for two and a half years and I never saw this side to her before. But I simply love it because it passes the time for us quite quickly.

I would like to end tonight's posting with a facebook message we received from our preschool mom friend, Kathy. Kathy is an ICU nurse, and I really appreciated her comments. So I am sharing them with you tonight. Kathy wrote, "I have been thinking a lot lately at work about how we interact with patients and families. I think that especially in the ICU where I work, people become sooo task oriented and forget about that they're working with people. We have so many new nurses at this time of year (and Drs) and they become so engrossed with getting things done and finding out what's going on that they forget about the patients. At GW now, how we interact with people has become a large part of our evaluations and our supervisors actually round and ask very pointed questions about that. Luckily for me, that is something I'm good at. :) One quote that I have come across lately is "You will always be remembered for your kindness". That is so true and especially true with the caregiver you talked about today and all those wonderful nurses and Drs that took care of Mattie. It was very nice of you to validate the kindness of Mary's caregiver. I'm certain that she will always remember YOUR kindness."

Friday, July 29, 2011

Friday, July 29, 2011

Tonight's picture was taken in May of 2007 outside the entrance to Dutch Wonderland in Lancaster, PA. Peter took this picture of us after a long day within the park. Mattie had a great day and for us it was a day of many firsts. I found out that my son loved fast rides and had absolutely no issue with motion sickness. He loved the rides SO much that he went on them multiple times. I think the goal Peter and Mattie had, was to find out which parks around the country had the best roller coasters, and then ride them in the future. But naturally for us the future wasn't meant to be.

Quote of the day: Even his griefs are a joy long after to one that remembers all that he wrought and endured. ~ Homer


I have always been fascinated by Greek Mythology and the moral lessons that seem to be intertwined within each tale. Tonight's quote, written by Homer (one of the greatest ancient Greek epic poets, most famous for the Iliad and Odyssey) had me thinking and THINKING!!!! At first I simply didn't get it, because to me a grief can never be a joy. So I just kept reading and re-reading it, and then pulled Peter into my debate.  The word in this quote that confuses me completely is "one." I have read this quote with "one" referring to the first person and then "one" referring to the third person. In the first person, this would naturally mean that over time, one reflects on what he/she endured and can find joy from this grief. However, in the third person, I interpret this as perhaps a friend of mine, who can clearly remember what Peter and I went through as Mattie battled cancer, now looks at these griefs with joy. Joy because the third person can objectively see that through this cancer battle the beauty of love, a community, and the meaningful priorities of life have become clearer. So in essence a tragic grief has established an inner joy, a revelation of reality. Of course I cognitively see this reality, but emotionally as the parent who lost her only child, I see NO joy in this grief. Therefore, depending upon how I intepret the word, "one" my feelings about this quote change.

It was a day of chores and Foundation paperwork. At lunch time, Peter asked me if I wanted to meet him near work and have lunch together. So despite the heat, and it felt like 110 degrees out, I walked to meet Peter. We chatted about each other's day and then went our separate ways. I spent the afternoon watering and reviving my garden and Ann's. In this heat, plants can wilt and die very easily, and I am determined to keep them going.

Later in the day, I spent time with Ann's mom, Mary. One of the caregivers who works in the assisted living facility, who we all happen to love, was leaving today. She will not be working at this facility any longer and frankly it is hard to believe this was her last day. Over the last several months, I have come to truly appreciate this caregiver, admire her love for her patients, and in the process we have gotten to know each other. I feel strongly about this individual and there was no way I was going to let this caregiver leave this facility without giving her a gift. Sometimes you meet such a rare individual who simply loves people and life and makes even challenging situations more tolerable..... well Mary's caregiver is such an individual. This woman led a hard life, and yet, you could never tell this from her demeanor. I remember one day talking to her about how she spent her weekend, mind you she worked every other weekend at the facility. That particular weekend she had off and got to spend it with her husband and her family. She was so happy and talked about how much she loved gathering with her family for coffee and treats. However, she couldn't afford to go out for coffee and treats, and therefore landed up staying at home making them herself. That comment lingered with me, and therefore it was easy for me to determine that the perfect gift for her would be a gift card to Starbucks. When she received it, she was beside herself and gave me a big hug. She remembered our conversation and was touched that it made an impression on me. In reality she as a person has made an impression on me and I wanted her to know that her position maybe replaceable, but the type of love, character, and quality she brought to her job was NOT replaceable.

Naturally I did not need to give Mary's caregiver a gift and perhaps I do not even need to be writing about this. But I am writing about it because it speaks to the importance of connecting to others and how much I value these connections. I also think holding back and not verbalizing feedback and feelings not only is disingenuous but it also prevents others from knowing how much they mean to us or have impacted us. I feel happy tonight knowing that Mary's caregiver understands quite well that she matters, we will miss her, and that we love her as a person.

Thursday, July 28, 2011

Thursday, July 28, 2011

Tonight's picture was taken in May of 2007 at Dutch Wonderland in Lancaster, PA. As you can see, Mattie and Peter were riding on a roller coaster. Mattie's first roller coaster experience! While they were enjoying the ride, I was running around trying to take pictures from different angles. In this picture the ride had just begun, and you can see that Mattie was happy and smiling about it! In this respect, he and I were polar opposites!

Quote of the day: Grief is a tidal wave that over takes you,smashes down upon you with unimaginable force,sweeps you up into its darkness,where you tumble and crash against unidentifiable surfaces,only to be thrown out on an unknown beach, bruised, reshaped...Grief will make a new person out of you,if it doesn't kill you in the making. ~ Stephanie Ericsson


Peter and I had lunch today with a professor of Peter's from Georgetown University's business school.
Bob Bies is a professor of management and founder of the Executive Master’s in Leadership Program at the Georgetown University’s McDonough School of Business. He holds a B.A. and M.B.A. from the University of Washington and a Ph.D. from Stanford University.  In addition, Bob is a co-author of the book, Getting Even: The Truth About Workplace Revenge—And How to Stop It, which was published by Jossey-Bass. Bob's current research focuses on leadership, the delivery of bad news, organizational justice, and revenge and forgiveness in the workplace.

Though I had never met Bob before, I certainly heard a lot about him while Peter was in school and I remember the business project Peter created in Bob's class. We still have the tangible product in our home from this creative business endeavor. There are some topics that I can clearly admit that I don't know much about, but higher education and surviving in such an environment are things that I am very familiar with. I have interacted with many educators over the years, and am able to decipher those with an agenda and those who are truly trying to impart knowledge and make a difference. Clearly Bob is one of the latter. What I love about his teaching philosophy is the incorporation of service learning into all his classes. In essence service learning enables students to improve their academic learning and develop personal skills through structured service projects that meet community needs. Students take knowledge captured within the classroom and operationalize this information in the real world. This is not a philosophy that every educator embraces, most likely because it requires MUCH more time, effort, and attention to detail and community connections.

We learned today at lunch that Bob has adopted the Mattie Miracle Cancer Foundation as the non-profit of focus for his undergraduate Organizational Behavior Course. His 30 students will be introduced to us on September 8 (the second anniversary of Mattie's death), when we make a 30 minute presentation in his class and tell our story. Some of the tangibles the students maybe able to help us with are revamping our website and making it more timely and interactive, enhancing our social networking presence, as well as strategies to fund raise. I was very honored to hear of Bob's interest in Mattie Miracle and in essence by selecting our non-profit he is saying that he views our Foundation as a valuable organization to invest time, attention, and human resources. As Bob told me today over lunch, we are his CLIENTS and that this Fall we will be making history together!

When I got home today after lunch, I was greeted by the same beautiful black butterfly that fluttered by us at dinner last night. I did not mention it in last night's blog, nor did I take a picture of this butterfly because we were eating dinner. But today, as soon as I opened our deck door, I was literally greeted by this butterfly. It floated around my head and it also likes to flutter by Mattie's bedroom window. So this is two days in a row with an encounter by this same unique butterfly. I googled this butterfly and found out it is a Female Black Swallowtail. In a way, I was a little disappointed to learn the butterfly was female, but nonetheless, I welcome all signs! If you look closely at my flower boxes, you will see that she was fluttering around my Lantana plants!

Wednesday, Julyl 27, 2011

Wednesday, July 27, 2011

Tonight's picture was taken in May of 2007 at DutchWonderland. Mattie rode his first roller coaster at this theme park. It was love at first ride! He absolutely fell in love with the excitement of it! In this picture, Mattie and Peter were sitting in the fourth car from the top. Peter was on the right hand side wearing a white shirt and Mattie was sitting close to him most likely not sure what to expect!

Quote of the day: I walked a mile with Pleasure; she chattered all the way. But left me none the wiser For all she had to say. I walked a mile with Sorrow And ne'er a word said she; But oh, the things I learned from her When Sorrow walked with me! ~ Robert Browning

Today I attended my second Pilates class with my friend Christine. It literally took me about four or five days to recover from the last class. Last week after class if felt as if someone punched me in the stomach. I used muscles I never even knew existed. However, despite the intense workout last week, I wasn't in so much pain that I couldn't function or continue my walking routine a day later. So I viewed that as a positive sign. Today we worked with an apparatus called a Pilates Chair. If I thought the reformer was challenging last week, the chair was over the top. One would think how complicated could a CHAIR be!!??? Well something so simple is actually very physically demanding. By 45 minutes into the class my legs and abdomen were shaking from use. However, I have noticed big changes already with Pilates exercises. I no longer have lower back pain and as I travel throughout the day, I am more cognizant of my posture and my hunched over spine. If I correct these positions throughout the day, I land up feeling better at the end of the day. Pilates works your core section to try to lengthen and stretch that area and for me in the process it makes me more aware of my entire physical body and space. My biggest challenge last week was motion sickness. I have never been able to do floor exercises that involve lying down. There is something about my head being flat on the ground that disorients me. So today I took Dramamine before the class, and it worked like a charm. The teacher told me there are other students like me and those who also get vertigo from these exercises.

After the class, I went to meet Ann, Mary (Ann's mom), and Shayla (Mary's caregiver) at the salon. Mary was getting her hair done today, which is an outing of grand portion. Transferring Mary from her wheelchair into the car is a process that requires great skill and strength. Most people would have given up trying this adventure a long time ago. But Ann continues to work great efforts to get Mary out and about. By the end of the morning, Mary's hair looked lovely and she was happy to see her new style in the mirror.

I had the opportunity to collect at Ann's house all the chocolate that my friends donated to the snack cart on my birthday. When I got it home, I decided to organize and itemize it. Below you will see a picture of all the chocolate and the incredible listing of items. My friends were very generous with their gifts and I know these chocolates will make many family members living in the hospital happy. Or as happy as one can be while worrying and caring for a sick child 24 by 7.

Item	Quantity
snickers (2.07 oz each)	70 bars
almond snickers (2.07 oz each)	3 bars
mini snickers	10.50 oz bag
fun size snickers (.57 oz each)	16 bars
Hershey milk chocolate bars (.49 oz each)	16  bars
Hershey dark chocolate bars (.49 oz each)	16 bars
Hershey milk chocolate bars (1.55 oz each)	66 bars
Hershey milk chocolate with nuts (1.45 oz each)	36 bars
Hershey dark chocolate bars (1.45 oz each)	3 bars
Hershey milk chocolate bar (7 oz each)	2 bars
M&Ms (1.69 oz each)	48 packs
M&Ms (.52 oz each)	8 packs
milky way midnight	10.50 oz bag
milky way  (2.05 oz each)	42bars
Twix (1.79 oz each)	44 bars
assorted M&Ms, Hershey, and Nestle bars	150 pieces/5.6 lbs
Kit Kat (1.50 oz bars)	39 bars
Musketeers (2.07 oz each)	3 bars
Reese's peanut butter cups (1.50 oz each)	18 bars
Reese's peanut butter dark choc cups (1.50 oz each)	3 bars
Rolo (1.7 oz each)	3 rolls
York peppermint patties (1.4 oz each)	3
Heath Bars (1.4 oz each)	3 bars
Hershey Nuggets assortment (19oz or 1lb)	1 bag
Hershey Nuggets with Almonds (12 oz)	1 bag
Hershey Bliss (9.6 oz)	1 bag
Hershey special dark miniatures (11 oz)	1 bag
Hershey miniatures (12 oz)	2 bags
Ferrero Rocher Hazelnut chocolates (5.3 oz net weight)	12 pieces
Ghirardelli Squares Dark & Raspberry (5.32 oz net weight)	1 bag
Lindt Lindor Assorted Truffles (21.2 oz net weight)	1 bag
Dove Bars (1.16 oz each)	10 bars
Dove Milk Chocolate Promises (9.50 oz net weight)	4 bags
Dove Almond Dark Chocolate Promises (8.50 oz net weight)	1 bag
Dove Dark Chocolate Promises (9.50 oz net weight)	2 bags
Dove Peanut Butter Chocolate Promises (9.80 oz net weight)	2 bags
assorted chocolates	1 gallon Ziploc

Tuesday, July 26, 2011

Tuesday, July 26, 2011 -- Mattie died 98 weeks ago today.

Tonight's picture was taken around my birthday in 2009. Linda, Mattie's childlife specialist, got this cake for Mattie, so that he could give it to me and celebrate my birthday. As I look at this picture, I can see that I am very tired and barely can keep my eyes open. At the time I thought life was extremely challenging and fatiguing, which it was. However, I had no idea what was in store for us just two months later when Mattie died.

Quote of the day: Mourning is not forgetting... It is an undoing. Every minute tie has to be untied and something permanent and valuable recovered and assimilated from the dust. ~  Margery Allingham

I began my day by receiving this beautiful picture from my friend Ellen. In June, Peter and I planted some flowers in Ellen's flower baskets at her beach house. It was one of our thank you gifts to her for giving us a week's vacation at her house. But anytime you plant flowers you just never know if they will take and thrive. Clearly as you can see they not only took but they are looking beautiful. It was a lovely sight to see this morning! Friends sharing pictures while away is a special way to stay connected, and as I looked at this picture this morning, it reminded me fondly of our time on Ellen's deck listening to the ocean waves.

This morning I decided to go for a walk despite the incredible heat. It was nice to walk in silence and also listen to music and see greenery around me. I had a dragonfly following me around for most of my walk, and I couldn't help but think of Mattie. The irony is I was working in my garden this afternoon, and out of no where came a beautiful butterfly fluttering near me. I literally said to the butterfly, "hi sweetheart." As if the butterfly was my Mattie. Rarely do we get butterflies in our garden, right in the middle of the city. So to me this was a very special sighting!

After my walk, I went by to see Ann's mom and her caregiver, Shayla. Shayla was having a bad day, and I decided to go visit to lend support. Shayla and I have been working quite closely together during the month of July, and we have gotten used to checking in with each other throughout the day about Mary. So old habits are hard to let go. However, what I have found is in the midst of us working together, we both have come to appreciate each other and develop a friendship. While Mary was having lunch, I sat with her and our mutual friend, Catherine, came over to join us. So lunch was lively.

While visiting Mary, one of the aides began talking with us. She told us she believes that "God has a reason for everything." She truly believes this statement and she feels that during her ups and downs in life God has been with her. Even when God throws at her things that are unexpected. I listened to her beliefs, but I couldn't help but say that some times I do not understand God's reasons. She had no response to me, she kept on talking. If one truly believes that God has a reason and purpose for everything, then one has to ask the question.... what was the purpose of Mattie developing cancer and dying? Well I could come up with some responses, but NONE of which I find at all comforting or satisfying. Developing pediatric cancer defies explanation in my book, and no amount of reasoning seems to help me make sense out of it. Why do children get life threatening illnesses, suffer, and die? When one ponders this notion, one can't help but want to rethink the cliche..... God has a reason for everything!

So in addition to seeing the dragonfly and butterfly today, there are two occurrences in our home that I can't explain. When I entered our hallway this afternoon, and I looked at Peter's grandfather's clock, I noticed Patches rainbow Mouse toy right on top of the clock. I took a picture of this strange occurrence! When I saw this, I text messaged Peter to see if he happened to put the mouse there. He said no! Frankly I don't think Patches is skilled enough to fling it up there, so therefore I am left wondering how on earth this mouse got on the clock?! I have had other mysterious things like this happen in our home, and during these weird moments that defy explanation, I say that Mattie is playing a trick on me!

In our dining room, I keep Mattie's ashes in an Italian made jewelry box. On top of the box, I display things of Mattie's. However a few weeks ago out of NO WHERE a blue hotwheels car appeared on top of the box. Again I questioned Peter, who had NO idea where the car came from. These types of occurrences make me believe that Mattie is with us and in his own way is sending us messages!

This evening Peter and I went out to dinner with our friends Marisa and Denise. Denise and I are graduates of the George Washington University and I met her daughter when Mattie was battling cancer. Marisa helped me care for Mattie in the summer of 2009, which was no easy task. Yet she handled Mattie's battle with cancer with courage, great patience, compassion, and determination. Marisa will be working with the Mattie Miracle Cancer Foundation as an intern over this next month. Marisa is a business major at NYU and we are lucky to tap into her knowledge and skills with social media and networking. So stay tuned for more exciting information!

Monday, July 25, 2011

Monday, July 25, 2011

Tonight's picture was taken on my birthday in July of 2009. This was the last birthday I celebrated with Mattie. Sitting in front of us was a lighthouse birthday card that Mattie created with Peter's parents. I still have this card! As I look at our living room back then, it certainly looks very different than our living room now, which is devoid of toys and Legos. It is hard to believe this was just two years ago. There are moments when I stop and try to remember what it was like to have Mattie physically present in my life and be his mom. Most of us do not give birth to children and have such a finite time with them. But for me, all I have remaining is memories. Sometimes memories are NOT enough.

Quote of the day: Mourning is love with no place to go. ~ anonymous

Today felt like I was living in the land of the lost. I spent the entire day at home and in my pajamas. I just did not feel up to getting dressed. I received a phone call from my parents and lovely emails from my niece and nephew, which perked me up. But that feeling of it being my birthday did nothing for my mood or my spirits. In fact, with my migraine the notion of going out of the house and making lively conversation with friends tonight seemed more daunting than happy. But since I know others arranged and planned their schedules around this dinner, I felt compelled to go.

When Ann planned my birthday dinner, I requested that attendees not bring gifts. The only thing I suggested was for my friends to bring chocolate. Not for me, but for the hospital. As many of our readers know, The Mattie Miracle Cancer Foundation last month began funding a snack cart on the inpatient pediatric units that visits families twice a week. The snack cart offers nutritional and fun snacks to families at NO cost to them. When we were deciding on the snacks to place on the cart, I told Linda (Mattie's childlife specialist) that chocolate was a must! I realize that isn't considered nutritional, but for me, chocolate was a food of survival within the hospital. However, the food cart supplier doesn't stock chocolate! So Linda and Alice (a pediatric nurse administrator) have been purchasing chocolate out of their own pockets to stock the cart. I am not happy about this scenario, and I am working with Tamra, our board member, on finding other sources to supply this cart! In any case, in the meantime, I am collecting chocolate so that I can visit the hospital and provide them with a supply for the cart.

But here is the interesting fact about all of this! The snack cart has been a huge success so far. Families are incredibly appreciative of this free service, and feel as if others care about them while they are in the hospital and dealing with their child's crisis and health condition. I remember how impossible it was to leave the inpatient unit even for a second while caring for Mattie, and if I did not have Team Mattie bringing me food, I may never have eaten. So in a way, this cart was created based on my own experiences, needs, and observations. However, guess what the MOST requested item is from parents? If you guessed chocolate, you get a gold star!!! I am happy that the cart is a great addition to the hospital's services and I am also happy that on my birthday, I can find a way to support this service.

Pictured: The snack cart with hospital staff and a grateful pediatric unit parent!

We took some pictures at tonight's dinner which was held at Mattie's favorite restaurant! These are bags and bags filled with chocolate that my friends are donating to the Hospital snack cart. A cart that Mattie Miracle is funding. In my perspective this gift represents mothers helping mothers!

There was a wonderful turnout of friends tonight. From left to right are: Tina, Ann, Jane, Vicki, Rebecca (Clyde's at Mark Center's executive chef), Marisa, Denise, Mary, Christine, Julie, Margaret, and Michelle

Rebecca was kind enough to come out of the kitchen and greet all of us! As many of my readers know, Rebecca is the chef who graciously grilled all the food at this year's Walk! Thanks to Rebecca, food was a very profitable item at the Walk.

My friend Tina captured a picture with Junko and I. My loyal readers most likely remember that Junko was my friend who would visit me in the hospital and massage my hands, neck, and back. Junko is a friend who understands my sadness and is not uncomfortable in the least sitting with me in it. She will cry right along with me. In fact, I cried various times through dinner tonight, and Junko never changes the subject or flinches away from these real feelings. Which is needed. Crying is sometimes needed and it wouldn't be normal from my perspective to survive what I have been through without having these intense emotions now. Birthdays tend to evoke strong feelings, and in so many ways one of the reasons I did not want to go to dinner tonight was to me there was nothing to celebrate.

Tonight I was surrounded by moms. Naturally moms talk about their children. A conversation I clearly can't participate in. Nonetheless I absorb it. Tina took a picture of me with my friend Grace. Grace was the first mom I met at Mattie's preschool. She knew that Mattie had a horrible previous preschool experience and she said one day in front of the rest of the moms in 2005 that things would be different now. That Mattie was in the right place. She was correct. Resurrection Children's Center was a very special place for our whole family. Tonight during dinner, Grace handed me her phone. On the other line was her son, John. John and Mattie went through two years of preschool together. John and I always got along splendidly. However, though Mattie isn't alive, John still feels a connection to me. He wanted to wish me a happy birthday and to tell me he "loves me!" In Mattie's second year of preschool, the children went every monday to the assisted living facility across the street to visit and entertain older adults. I volunteered in the classroom EVERY Monday and assisted the teachers in taking the children on this adventure. Mattie had his buddies and therefore he really wasn't interested in connecting with me. So instead, on EACH trip, I had John on my right hand and my buddy Nora on my left. These children were glued to me each week and it was mutual admiration. I have to imagine that on some level John remembers these special times. Hearing his voice tonight and how sensitive and caring he was on the phone was a special gift!

You may also have observed in the picture that I was wearing a beautiful pink butterfly necklace. Mattie helped me pick out this necklace when we went to butterfly world in Florida. So to me it was appropriate to wear this symbol today.

I would like to end tonight's posting with two messages. The first message is from my friend, Christine. Christine wrote, "I have been thinking of you all weekend. I know this time of year must be among the toughest especially with Mattie's diagnosis so close to your birthday. It's so unfair and unnatural to experience these two extremely different events at the same time. I wonder how can you feel happy or celebrate when you carry such a burden. I think back to July 2008 with very vivid memories; it's hard to believe that it's now 2011---it doesn't seem like that much time has passed. I would love to say Happy Birthday tomorrow and wish you a wonderful year, but it seems disingenuous. Of course, I really do wish you a wonderful year anyway and would do anything for you to help make that happen. Look forward to seeing you tomorrow night."

The second message is from Mattie's oncologist and my friend, Kristen. Kristen wrote, "Just thinking of you today and sending you a hug over the airwaves! Happy Birthday!!! Enjoy the day...I think you will find birthday wishes from Mattie scattered throughout your day!"

Sunday, July 24, 2011

Sunday, July 24, 2011

Tonight's picture was taken in May of 2007 at Dutch Wonderland in Lancaster, PA. As we entered this theme park there was a train that gave attendees a ride around the park. Mattie and Peter realized this would be my kind of ride, so they entertained me by selecting to do this ride first. All the other rides they did that day, I simply observed and took pictures of them having fun together. I was actually fine with that because one of my favorites things to do is people watch.

Quote of the day: Love is a fabric that never fades, no matter how often it is washed in the waters of adversity and grief. ~ Anonymous

It was another very hot day in Washington, DC and Peter and I planned to go to the shopping mall today. Though I do not feel like celebrating my birthday, my friend Ann is having a small dinner with a few friends tomorrow in my honor. So Peter and I went out in a way today to acknowledge the occasion. We didn't talk about my birthday or celebrating, which is just fine with me. I don't feel like celebrating and on some level Peter must know this. He did surprise me with a wonderful birthday gift yesterday. Something I very much needed, but had no idea I was getting. Needless to say, this gift will inspire me to do more typing and thinking as I try to tell Mattie's story in a book format.

We had a lovely lunch at my favorite restaurant at the Mall, Seasons 52. Seasons 52 is a special place to me, because it reminds me of all the trips we took to Florida with Mattie. It was in Fort Lauderdale, that we were all introduced to Seasons 52. Mattie loved the restaurant and the food! The restaurant is described as "Seasonally-inspired dining choices expertly designed to excite and surprise the palate." I would say this is quite accurate and if the food doesn't amaze you, the desserts certainly will. They offer mini indulgences, which are shot glass sized desserts. Somehow these indulgences always make me smile. Over lunch we talked about many things, but of course Mattie. When we both landed up in tears, we realized we had to change the subject otherwise neither of us was going to be able to eat.

Later today I went to visit Ann's mom, Mary. Mary and I have spent every afternoon and evening together for the last two weeks. I brought her a piece of the chocolate cake I made and she devoured it. I wasn't sure if she was going to like it since I wasn't sure I liked it myself. But I promised her a piece of cake the day I baked it, and though she may not remember this promise, I do. To my surprise she liked the cake! During this two week time period, I have also gotten to know Catherine, one of the residents on Mary's floor. Catherine is actually much younger than most of the other residents, perhaps in her 60s. So adjusting to this new living environment for such a young person is very challenging. I know she has appreciated my visits and being able to dialogue with someone daily. This weekend, I met Catherine's sister who was visiting. It turns out Catherine, her sister, and I all like reading the same books. So today we did a book exchange, which I thought was a very nice and thoughtful gesture. Catherine's sister is reading the same book that I am right now, and we had a great time talking about it. I actually HATE the book and one of the main characters. It was good to know that I am NOT alone. I would really like to stop reading the book but the topic of euthanasia interests me.

As I left the assisted living facilty this evening, I explained to Mary that she wouldn't be seeing me tomorrow. Since Ann returns on Monday. Mary absorbed that information and though she is thrilled to be able to see her daughter, I can tell she has gotten used to our routine. However, no matter how much one loves a family member, a break from caregiving routines and tasks is VERY needed. Caring for an impaired older adult is fraught with many challenges that can take a large physical and emotional toll on the caregiver. Without a break and change of perspective, one can easily burnout. I know this firsthand, but I also know this from years of psychological caregiver research that I have read and conducted. So though Ann doesn't ask me to give her a break, I on some level am happy I can do this to hopefully give her some sort of peace of mind while she is away.  

Saturday, July 23, 2011

Saturday, July 23, 2011

Tonight's picture was taken in May of 2007. This ride-on Thomas Train was located right near the Strasburg Railroad Museum. Typically when Mattie saw Thomas he was totally engaged and in this case he couldn't wait to have a turn to ride on this train. However, this little girl in the picture also wanted to ride the train desperately and what I loved was Mattie decided that they should ride on the train together. When your child learns to share and care about someone else's feelings, it is a memorable moment. It was that kind of moment for me.

Quote of the day: To rejoice in another's prosperity is to give content to your lot; to mitigate another's grief is to alleviate or dispel your own. ~ Tryon Edwards


I began my day in a funk. It isn't easy to know that just three years ago, Mattie was diagnosed with cancer. Peter and I started talking about this, and then we had to change the subject. The topic at times is too surreal and too raw to process. This morning, I received an email from my lifetime friend, Karen. I realize for many people in my life, they think that it is better NOT bringing up the subject and acknowledging this three year anniversary. I find this realization very upsetting. Not talking about Mattie or our grief is not natural to me regardless of how many days, weeks, months, or years pass us by. Mattie will always be a part of our lives and I am deeply saddened that others can't appreciate my feelings. Karen's message to me today was only two sentences long, but to me it said everything. It meant a great deal to me, because to me it said..... I haven't forgotten you today, I haven't forgotten what the day means to you, and though there are no words, I remember. Karen wrote, "I know what today is. I know there are no words so I won't try."

Peter and  I had a friend over for dinner tonight. He brought me two of my favorite flowers... sunflowers and stargazer lilies. I recall when Mattie was battling cancer, someone from team Mattie sent me a bunch of sunflowers. From that gift, my love of sunflowers developed. From that very point in time, these flowers became my symbol of hope, and when I look at their flower face, it causes me to reflect on the sunny smile and bright face of my Mattie. The vase is sitting on a green and brown piece of pottery as you can see. If you know me, you know that I do NOT like the color green. However, when I was in Bethany Beach in June, I admired this handmade piece because of the beautiful sea turtle etched into it. So I bought it. Sea turtles remind me of Mattie and his adopted sea turtle, Roxana!

Our friend also brought me this beautiful resin plaque of St. George. He bought it on his trip to Bulgaria in 1989. He wanted me to have this plaque because he said to him I am just like St. George. Or as he said, I am his St. George. St. George was known for his courage and his ability to do battle. St. George slayed a dragon, and I suppose my dragon is pediatric cancer. I am deeply honored to be compared to such a venerable saint.