Friday, July 22, 2011

Friday, July 22, 2011

Tonight's picture was taken in May of 2007 at DutchWonderland in Lancaster, PA. Though the picture is blurry, you can get a sense for the fun and adventure Mattie liked to have. The irony about this picture is Mattie HATED slides, all kinds, when he was a toddler and into his preschool years. Over time he got used to the motion and movement, and as you can see, he not only liked slides, he grew to love them. Slides are just one of many examples in which Mattie took things at his own pace, and when he was ready to try and do something, then there was no stopping him. But the inspiration and desire had to come from HIM, not us! That was a hard thing to learn as a parent, because it wasn't easy to see your child as "different," as not being like the other children. However, over time I realized the beauty of Mattie and appreciated him for his amazing talents, skills, and insights.


Quote of the day: An important way to cope with grief is having an outlet, be it interpersonal, be it artistic, that will allow you to not have to contain your grief, but will give you an opportunity to express it, to externalize it to some degree. ~ R. Benyamin Cirlin

I like tonight's quote very much because I do agree that an outlet is very important to help one cope with grief. My outlet today was baking a chocolate cake from scratch. The finished product is in this picture. Tomorrow night, Peter and I are having a friend over for dinner. Since Mattie died, I have had my parents here and my lifetime friend Karen, but other than them, no other visitors to entertain. So in a way, having dinner with a friend in our home is a novel yet special concept for us.

Saturday is July 23, which marks the third anniversary of Mattie's diagnosis with Osteosarcoma. It is a day we will never forget. It is a day that I can still physically feel! It seems ironic that I would make a chocolate cake to commemorate the day, a flavor that Mattie absolutely HATED. I view this cake as an outlet and just like Mattie, this cake has many surprises inside..... like chocolate chips and other chocolaty things that make it live up to its name, "decadent fudge cake."

This evening I went to our complex's laundry room. I was the only person in the room. When I went back to the room to transfer my laundry from the washers to the dryers, I noticed sitting on one of my machines a lone penny. There was NO one else in the room doing laundry and I did not leave this penny on the machine. Therefore when I entered the room and saw the penny, I stopped in my tracks. As many of my readers know, pennies were special to Mattie. My parents introduced Mattie to the "penny fairy." This fairy would leave pennies in various locations for Mattie to find, and he simply loved the thrill of finding one of those copper colored coins! So tonight I couldn't help but think that Mattie was sending me a message, as we approach his third anniversary. The penny was tails up, which Mattie and I both associated with "bad luck." Who would have thought that I would be receiving messages from beyond this world through our US currency, but to me this penny tails up was Mattie's way of telling me he knows tomorrow is a hard day, he knows we miss him, but not to forget that he is ever present.

Thursday, July 21, 2011

Thursday, July 21, 2011

Tonight's picture was taken in June of 2007 in Lancaster, PA. As you can see, Mattie and Vicki found a cut out to stand behind that will always be a reminder of our trip to Amish country. Mattie loved the notion of posing and pretending to be holding a puppy. A puppy that looks just like JJ, our resident Jack Russell Terrier, who practically grew up with Mattie.

Quote of the day: When he shall die, Take him and cut him out in little stars And he will make the face of heav'n so fine. ~ William Shakespeare


Good evening everyone, it is Pete who is writing tonight.  Oh brace yourselves, as I am not nor ever could compare to Vicki....

Given that it is presently past 9pm at night and it is still 97 degrees outside (without factoring in the humidity, which would put it well over 100 degrees on the heat index) and Vicki is planting, yes planting, outside, I am taking a shot at writing the blog tonight (in air conditioning of course).

So, today is day 681.... it has been 681 days since I last held my son in my arms, and said goodbye to him.  It's the kind of number one doesn't need to think about nor ever forget.  I am back from a world wind global tour of travel for work.  Seven days in Nigeria, then back for a day and a half, then off again to Seattle for three days.  All of this activity sounds very sexy and exciting, and while some who observe me think this is a sign of productivity, I see it as a sad sign, as a signpost marking a life of emptiness.  Yes, it sounds depressing, but it is true.  I had a wonderful life once... one filled with boundless energy, new experiences and most importantly, the promise of what tomorrow could be.  I had a son, a smart boy, a charismatic person... a unique and special individual who could dazzle you with a blink of an eye and at the same time shake you to the core with his brilliance and depth.  I miss him, so very much.... 

But that life has ended, and abruptly, such that I was and I am left with a feeling of utter emptiness. . . a felling I wouldn't wish on my own enemy.  Although we go about our day to day activities, Vicki and I are but a shadow of what we were, or what we might have been... and it is that sense of loss, the appreciation of what might have been and now will never be, that casts us into our demure and ever-persistent state of depression.  I love my son and I am so proud of him that I still, to this day, introduce myself as "Peter Brown... Mattie Brown's Dad," a title that I will never forget nor relinquish....

Time is never a close friend, but rather an adversary... one to keep a close eye on yet one we never want to yield to in its unending and inevitable march.  I reflect on myself and my life, and all I can think about is the past.  It is a wondrous past filled with incredible memories that I enjoy as often as I can.  However, it is the past, and not the future and that, alone reminds me that I do not live in the past, but I am here now, only without a very important part of me.

So, I wake up each day, get washed, put my clothes on and go about my day.  Although I do this each day, all 681 one of them, I do it without a piece of myself, a part of my heart, a part of my soul that forever is a part of me but forever is lost to me. 

So to those of you, who have your "parts" surrounding you, which for me is my Mattie, please give them a hug, tell them you love them, and hold them tight, and remember, there are those of us, who can no longer do that nor will we ever get a chance to hold the "parts of us" ever again.

Wednesday, July 20, 2011

Wednesday, July 20, 2011

Tonight's picture was taken in June of 2007 in Lancaster, PA. Outside one of the shops were these lovely shaker rocking chairs. I was the only one in our family who liked to shop, so while I was browsing these two fellows were rocking away. When I came out of the store, you can see Mattie was thrilled to see me. Most likely so we could move onto our next adventure. However, the look on their faces, in my opinion, was worthy of a picture!

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


Today I had a workout to remember! My friend Christine introduced me to Pilates. I have heard a great deal about Pilates over the years, but this is not something I would have signed up to do by myself. It would have to be something I would do with a friend. As many of my readers know, I have established my own walking routine. Fortunately I have because if I hadn't been exercising, I could never have completed a Pilates class today. I grew up and spent a great deal of my life studying the art of dance, ballet to be specific. Dancing has always been an exercise that interested me. Well moving around to music in general was right up my alley. I LOVED step aerobics (which needs to make a come back!), and my mom introduced me to country line dancing, which I like too. So I mention this because the notion of Pilates was not something that would be a natural fit for me. Mainly because with Pilates you are exercising in one place and not to music.

Pilates is a form of exercise, developed by Joseph Pilates, which emphasizes the balanced development of the body through core strength, flexibility, and awareness in order to support efficient, graceful movement. One of the best things about the Pilates method, or so it is advertised, is that it works so well for a wide range of people. Athletes and dancers love it, as do older adults, women rebounding from pregnancy, and people who at various stages of physical rehabilitation.The top benefits of doing Pilates exercise that people report are that they become stronger, longer, leaner, and more able to do anything with grace and ease.

Christine and I had an hour workout today using an apparatus called a REFORMER. I included a YouTube video of a brief Pilates Reformer class so you could see what this is like if you are not familiar with it. It may look easy, but I assure you it isn't. I discovered muscles I never knew I had today, and in a way the exercises get you to stretch your body at the core. So I could see over time this would help someone develop better posture and less back and neck problems. After an hour though I had had it! The true test will be what I feel like tomorrow morning trying to get out of bed.

I enjoyed learning a new technique, I enjoyed being able to connect with Christine, and I look at this experience as doing something positive for myself and my health.

http://www.youtube.com/watch?v=ybaFLXy5bSg&feature=related

I want to introduce you to my newest friend. He is a cute white and brown guinea pig named JoJo. Each day this week, I visit JoJo around lunch time. JoJo belongs to Katharina, who is away with Tanja visiting family. JoJo hasn't been feeling well and while they are away I have the opportunity to get to know this furry friend. My lifetime friend, Karen, had a guinea pig growing up. She was attached to him. His name was Oreo, since he was black and white just like the cookie. I did not share her love for this furry creature at the time, but after Mattie I have mellowed. He appreciated all animals, and as I am getting to know JoJo, I find he is a very sensitive and cute fellow. A fellow who LOVES cucumbers. I have nicknamed him the cucumber monster! Despite not really knowing me, he trusted me enough to come out of his tunnel to eat a piece of cucumber (which I am holding in the picture).

It is 10pm, and I just received a text message that Peter landed safely in Washington, DC! I know he is exhausted and will be working hard to get back to living in the Washington, DC time zone again!

Tuesday, July 19, 2011

Tuesday, July 19, 2011 -- Mattie died 97 weeks ago today.

Tonight's picture was taken in June of 2007 at Dutchwonderland in Lancaster, PA. This was Mattie's first theme park visit where he rode on a roller coaster. The whole notion scared me, especially since I can say as an adult that I have NEVER been on a roller coaster. Don't feel bad for me, I am VERY happy with that decision. Fortunately Mattie had a great time with Peter that day, and I literally lost track at how many times they rode on the roller coaster together!

Quote of the day: There are places in the heart that do not yet exist; suffering has to enter in for them to come to be. ~ Leon Bloy

Peter had another productive day in Seattle and will return home tomorrow at 10pm! He is exhausted and I think still on Nigeria time!

It is hard to believe that it is yet another Tuesday. The day that marks Mattie's 97th week gone from our lives. This is also a particularly hard week because July 23rd is fast approaching. Before 2008, July 23 simply meant that it was two days before my birthday. Now instead, this date signifies the 3rd anniversary in which Mattie was diagnosed with cancer. This is a day I will NEVER forget. I remember where I was and how I heard the news. In fact, when I flashback to that time, I can still recall the physical feelings I had when the radiologist told me the results of Mattie's xray and naturally the utter shock for the entire month after diagnosis. I am not sure this type of shock and feeling ever goes away. In so many ways, cancer consumed and devoured Mattie's life, and despite Mattie being gone, the ramifications and after effects of pediatric cancer are alive and well within Peter and I. They did not die with Mattie. The current trauma research suggests that our emotional response to trauma is experienced at the cellular level. Almost as if our cells have a memory for the trauma and that the trauma leaves our cells altered. I am not sure I would have believed any of this if I hadn't experienced it for myself. However, my fuse and tolerance for things now is short, and there are certain cirumstances now which automatically send me into a hyper alert and anxious state. A state that would never have arisen pre-cancer.

It was another incredibly hot day in Washington, DC, and despite the heat I walked about an hour round trip on the city pavement to go get my hair cut. Most people despise this heat and humidity, whereas I love it. For the most part it makes me feel good and if it could be like this year round I would be much happier at least physically. Mattie's battle with cancer and living in the hospital has even affected my hair. I did not pay much attention to these changes but my stylist, who I have worked with for years, noticed. Not unlike other aspects in my life, I am loyal to the same stylist because we connect on a personal level. She knew Mattie, was aware of my cancer battle, and also volunteered at this year's Foundation walk. These things mean a lot to me.

The first person to notice that my hair was 3 inches shorter was my new pal, Catherine. When I went to visit Mary, Ann's mom, today, I noticed that Catherine did not come to visit with us. So after I helped Mary with her dinner, I went to go find Catherine. Catherine decided to eat her dinner in her room this evening and when I came in to greet her and to tell her I was thinking about her, her eyes lit up and was beaming. She said I made her day, and frankly I believe there was some truth to what she was saying. I came bearing cookies as well, and even during the hardest of days it is hard not to smile over a cookie.

When I left the assisted living facility this evening, Mary looked at me and I could tell she had something to say. In these moments, I realize that being patient, and giving her the time to verbalize what she wants to say is crucial. Mary did not want me to leave without telling me how much she appreciates me, how much she values our visits, and that she thinks I am a caring person. She wanted to know how she could repay me. It was very cute, but clearly in my mind not necessary. Would I feel as compelled to help Mary if she hadn't lost her son to cancer? I don't know the answer to that question, but I do think the death of our sons is a powerful unifying factor.

Monday, July 18, 2011

Monday, July 18, 2011

Tonight's picture was taken in June of 2007. This was once again during our Lancaster, PA trip. My most recent blog pictures have focused upon that trip. It didn't take us long to plan this trip, which for me was unusual. Since I research everything I do before doing it! I have lived my life planning everything, even vacations. Down to the details on what we should visit and where we should eat. I am a creature of organization and I do not like surprises. Peter is a bit more free flowing and likes adventure. So the Lancaster trip was a bit of both, and I found it was the things we did not plan that were actually the most memorable. Like finding a trampoline in the middle of a field while driving along the road (I posted that picture a few days ago)!

Quote of the day: Sorrow makes us all children again - destroys all differences of intellect. The wisest know nothing. ~ Ralph Waldo Emerson

Some days I wake up and I realize I feel a bit lost. On those days, I know I definitely need to walk. However today was as hot as blazes in Washington, DC. Needless to say, I was still outside and walked over three miles. After which I worked in the garden. Peter and I joke all the time because he can weather the cold and I can weather the heat. Together, we have all climates covered!

Peter was up before 5am to get to the airport to head to Seattle. He has got to be so confused time wise and tired. Nonetheless, he sent me pictures of Pike's Place in Seattle and gave me updates about his day. Of course my two days of living with a calm and happy cat have come to a screeching halt now that Peter is gone again. Patches is howling at me as I am typing tonight's blog. She is pining for Peter and is waiting by the front door for him.

Later on today, I went to visit Mary, Ann's mom. We had a good conversation with each other. I have noticed at around 4:30pm each day, we get a visit from another resident who has befriended us, Catherine. Catherine spent over 30 minutes in Mary's room tonight. She needed a friend and wanted to talk with Mary and I. The isolation of living in a facility can be very challenging, especially when you do not have family and friends around to visit you and provide companionship. Catherine is the type of person who other residents in the facility turn to for help and to talk to, however, that leaves Catherine without someone to share her thoughts and feelings with. She asked me whether I thought her wining meant that she was selfish. My response was NO! I told her she was HUMAN. We all need an outlet, someone we are close to, who genuinely wants to connect with us and share our feelings. I feel for Catherine and through this conversation Mary was listening intently and at times said she could relate. I am absolutely thrilled that Mary and Catherine have this connection, because it helps to know that you are not alone, that your feelings are shared by someone else, especially a person living under the same circumstances. Needless to say, the whole dialogue with Catherine this evening, which I am not sharing here, keeps playing in my mind. It has further confirmed for me how fragile life is and how out of OUR control life really is. Those of us who live in the FREE world, and by that I mean NOT in a hospital or institutional setting, some times forget how lucky we are. But for people living in an institutional setting, they do not know what it feels like to select their own meals, to dress themselves, to get fresh air, and the list goes on. All I can think of right now is this..... Don't take these things for granted, because being healthy and free to live your life the way you want to live it are NOT guaranteed to us.

Sunday, July 17, 2011

Sunday, July 17, 2011

Tonight's picture was taken in June of 2007. We took Mattie to a wonderful train museum in Lancaster County, PA called the Strasburg Railroad Museum. Mattie was always fascinated by trains and all things MOVING and this seemed like the perfect day trip for him. Outside the museum were many train like structures for kids to play on. The irony is I was NEVER interested in trains, cars, planes, or boats until Mattie. Mattie opened up the whole world of transportation for me, and when we went to see trains, I too was enamored by them most likely for different reasons. Mattie loved the sheer engineering and technology associated with movement, where as I was good at imagining how these forms of transportation connected people and changed their lives in the process. Peter and I miss these adventures and new experiences with Mattie, but most of all we miss seeing the world through a child's eyes.

Quote of the day: Beauty is ever to the lonely mind a shadow fleeting; she is never plain. She is a visitor who leaves behind the gift of grief, the souvenir of pain. ~ Christopher Morley

I am so happy Peter was only gone for a week and was able to come home prior to his next trip. Besides spending time with him, I needed him as a buffer between myself and our cat. For over a week I haven't been able to get a decent night of sleep because of Patches anxiousness. Even with Peter back last night, she was up at 2am and 5am. However, Peter has a way of calming her down and putting an end to this bad behavior quickly. A night of sleep was more than overdue for me!

Peter and I spent the day catching up, repacking, and also went out to lunch together to just reconnect. It is hard to believe he will be on a plane again on Monday at 8am! He is on a completely different time zone, and now that he is going to Seattle this will only compound the problem. For Peter, it will feel like he is NINE hours behind what he has been used to in Nigeria.

This afternoon, I went to visit Mary, Ann's mom. To help orient Mary to Ann's absence, I have made a LARGE countdown chart for her so she can see for herself when her daughter is returning. I want Mary to feel empowered to answer this important question (when will Ann be back?) for herself. Though it is nice to see print in color, I have determined that Mary can only see black and brown print well. So for now the chart is working beautifully! With a font size of 100 is it too large to MISS it. In addition, each day, Ann emails me pictures of her family on vacation. I then print out these pictures, share them with Mary, and then post them on her wall by her bed. She is loving this visual connection to her family. I call her wall "The Hawaii Wall of Fame." Pictures are valuable therapeutic tools. They help orient one to the present and they also HELP caregivers relate to Mary. It would be pretty hard to enter Mary's room now and NOT notice these pictures. The pictures give people a natural segway into conversation with Mary. Conversing and connecting are vital to a person who lives in an institutionalized setting, because in all reality each hour and minute looks exactly the same, and therefore we rely on our visitors and caregivers to help ground us. Though I haven't lived in an assisted living facility, I have lived in a hospital, and know quite well for which I speak. Mattie is NO longer physically with me, but the lessons I learned from caring for him will last a lifetime!

Saturday, July 16, 2011

Saturday, July 16, 2011

Tonight's picture was taken in June of 2007 in Lancaster, PA. We took Mattie to Dutchwonderland. A theme park really geared for younger aged children. Mattie had a great time that day and it was on this trip that he rode his FIRST roller coaster. Mattie LOVED roller coasters. The irony is Vicki has NEVER been on a roller coaster, not even a kiddie one. The notion of that kind of movement makes her sick. As you can see from this picture, Mattie met up with a park character and stopped to take a picture with this purple dinosaur. This is yet another way Mattie was different from his mother. Vicki was deathly afraid of these types of characters as a kid and most likely would have run the other way, hid, or simply panicked. The beauty of Mattie!

Quote of the day: One cannot be deeply responsive to the world without being saddened very often. ~ Erich Fromm

I decided to write tonight's blog and give Vicki a break. Being away from that which is most important to you, gives yourself the gift of being able to reflect on what makes each day important, and why that is the case.  The mind will wander, looking for an answer or a resolution, but in reality, connecting in a relationship, binding your thoughts and his/her thoughts into a single context, forever establishes a link between these two individuals, which over time can help them, help you, and all the others impacted by this.

When I travel, I sometimes feel it gives me the gift of clarity. It enables me to see what is truly important in this life. Although there may be fancy and extravagant things to do and give one another, I am simply reminded of the famous quote from Maya Angelou: "People will not remember what you did for them. However, they will forever remember how you made them feel."

So I returned from traveling for almost 24 hours, and I have to admit: the prospect of having to repack Sunday night and race right back to the airport that granted me my freedom today, only to board another plane, and still be separated from that which is essential to my life, is not something I would ever choose.

So in summary: I missed Vicki in an unfathomable manner, I have been through changes, and I will endure. But remember this: most people only have one chance at this.  Your child is growing so very fast and being a parent means validating your child's needs, and thereby unlocking the wonderful gift of ever-lasting learning and development.  There is no greater gift!

Friday, July 15, 2011

Friday,  July 15, 2011

Tonight's picture was taken in June of 2007, in Lancaster, PA. We took Mattie to Cherry-Crest Farm and I couldn't resist snapping this picture. Mattie was our ram that day and Peter our sheep! No one wanted to play the cow, my favorite farm animal! In retrospect I am so happy we took Mattie on all sorts of adventures and trips, because clearly it doesn't make sense to put something off to the future. Since I have learned the future is not guaranteed!


Quote of the day: Joy and sorrow are inseparable. . . together they come and when one sits alone with you . . . remember that the other is asleep upon your bed. ~ Kahlil Gibran

I had lunch with my friend Tanja and her daughter, Katharina today. They are leaving this weekend for their annual family visit to Germany. I am happy we got together today because Katharina has had some special summer adventures and it was nice to catch up with her and hear about them. She even showed me some of her pictures from camp as well as their recent trip to Alaska. Katharina thought about me while in Alaska and brought me back several gifts. Gifts she said Mattie would have approved of, which is most likely very true. I enjoyed our visit and appreciate this connection that Mattie helped to create for me.

When I arrived this afternoon in Mary's room I found a Happy Anniversary Balloon and card awaiting me. Earlier in the day Shayla, Mary's caregiver, text messaged me and wished me a happy anniversary. I wasn't sure how she knew it was my anniversary since I hadn't mentioned this to Shayla or Mary. However, when Shayla knew it was my 16th anniversary, I quickly deduced that Ann must have told her. Shayla confirmed with me the number of years I have been married, because she couldn't picture me married more than six years. She said I look too young to be married 16 years. I LOVE her already! The irony is 16 years goes by fast, and time has only slowed down for us now after Mattie's death. In many ways, without Mattie as our bench mark everyday seems like living in limbo. Children have a way of quantifying our time and existence. I thanked Mary for the lovely card and her sentiments. She said that 16 is a lucky number for her since she was married on May 16th. But she also said that she wanted to acknowledge this day because she feels it is important for me to know how much she appreciates me for the care that I give her. Naturally I do not expect Mary to say these things to me, since we are two moms who lost our sons to cancer, and that alone allows us to understand one another quite well. However, it is always nice to be appreciated verbally and told where you stand with someone.

As I write tonight, Peter is on a flight from Nigeria to Frankfurt. His flight from Frankfurt leaves at 3:45am (DC time) on Saturday, and he lands in Virginia at 1pm. So I imagine Peter is going to be out of it, and I will have to help him turn it around to leave again on Monday for Seattle. Though I haven't traveled, I am thoroughly exhausted this week. When Peter is away, our cat drives me crazy. She has awoken me every morning this week at 2am, 3am, 5am, 6am, and finally by 8am I have had it. I am not suggesting that she is just moving about our home during that time. NO! What I am saying is she is howling like a banshee and nothing calms her down, other than me getting up and feeding her or paying attention to her. I am living with a very strung out and anxious cat, and as I say to Peter it is no wonder her former owner shot her with a bb gun and threw her out on the streets of DC. We have had Patches for over 12 years and I have truly noticed that her behavior has gotten MUCH worse since Mattie's death. It is hard to say whether this behavior is a reaction to Mattie's death and the feelings she is absorbing from us, or whether her physical ailments provide an explanation. Either case, I need a night of sleep ASAP and I am thrilled to have Peter back over the weekend.

I would like to end tonight's posting with a letter my mom wrote to Peter and I for our anniversary. My mom wrote, "You have reached your sixteenth anniversary and have plenty of miles left to travel to reach our number on August 14, though time goes more quickly the older you get. You have accomplished miracles in your years of marriage and tragedy has only made you closer because you were a great team from the start, full of heart, courage and high ideals. July used to be a month of high points in my life because you were born in that month and later married in the same month. Unfortunately and sadly, when I received that infamous call on July 23, 2008, it changed my perspective forever and I can no longer have tea at Priscilla's because that was where I was when you called. In regard to how you and Peter handled the nightmare of recent events, I congratulate you both for having taken a tragedy and transformed it into a miraculous Foundation for the benefit of sick children. You have taken the high road setting an example for other married couples facing tough problems! Your marriage has made you stronger so that together you can search for a new definition of happiness, although granted it will be subtly changed forever. It is apparent to all who know you that your journey through hell with Mattie gave you the fortitude to rise again and jointly reach for the moon in the remembrance of your dear precious son. Happy Anniversary and many more!"

Thursday, July 14, 2011

Thursday, July 14, 2011

Tonight's picture was taken in June of 2007 in Lancaster, PA. We took Mattie to a pretzel factory, and in the factory we all learned how to roll out dough and form it into a pretzel. This was a comedy show in and of itself, because it was easier said than actually done. Mattie figured it out one, two, three, while the rest of us were twisting the dough in all sorts of ways. I love this picture because Mattie's expression was really saying..... what is the big deal, I just did it!

Quote of the day:  Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad. ~ Henry Wadsworth Longfellow

Longfellow's quote is very meaningful, because it is easy to misinterpret someone else's behaviors and actions. In fact, sadness is an emotion that is so powerful it can take over one's mood, one's thoughts, and how one relates to the world. Rather than observe, listen, and understand someone else's sorrows and sadness, it is just easier for us to label that person as cold. Since this will enable us to WALK away without investing the time to uncover the heart of the problem. A problem which we may feel ill equipped to handle.

This morning I met my friend Christine and we took a 4.5 mile walk together. The irony is we talked the whole way, that it did not feel as if we covered that much territory. However, when Mattie died, one of our preschool friends mailed to us pedometers. So I have my pedometer clipped to me whenever I walk. There is some sort of satisfaction or need to know the distance I cover. I think it is a psychological thing... I have to know I am moving and accomplishing something, which seems very symbolic of the internal struggles I face.

Christine and I talked a lot about the Foundation and I shared with her my thinking and some of my goals for this year. Christine and I used to talk and interact a lot with each other at Mattie's school. So now that Mattie is gone, we miss this time together. Though our boys no longer have play dates, we still appreciate our time connecting, and I realize our friendship went beyond our boys just being friends. Though I always felt this way, it is nice to know that this is a reality! Christine introduced me to a restaurant I haven't been to before, and over lunch we chatted about so many things. I am happy to say that we concluded that we will be taking an exercise class together. This isn't only good physically for us, but it will be a wonderful way to see each other weekly. 

Tomorrow is July 15. Which is my wedding anniversary. Peter will be in Nigeria and boarding a plane to come home. He arrives back home on Saturday and then Monday morning he gets on another plane for Seattle. Talk about time zone confusion. It will be a whirlwind between laundry and dry cleaning, to get him repacked to head for Seattle! Celebrating a wedding anniversary for a couple who lost a child is rather complex. Complex because it is only natural on anniversaries for a couple to reflect on their accomplishments together, and typically one of the greatest life accomplishments is that of a child. What happens when the child dies? What happens to the relationship? For seven years of our marriage we focused on raising Mattie and planned our future accordingly. Now Mattie is not part of that future, and we are being forced to redefine ourselves and our relationship. Not by choice. Marriage in and of itself requires compromise, understanding, communication, trust, and respect. These are just words, but actually implementing them can be challenging under the best of circumstances. Now add one of the worst circumstances, a death of a child, and suddenly compromise, understanding, communication, trust, and respect are NOT enough. Much more is required, but one's emotional bank account is simply empty from seeing your child die from cancer. So how does one restore one's emotional bank account and continue to build a solid marriage? I have no answers really, but I do know that another factor has become crucial to our marriage, and that is Peter and I have learned to instill hope into each other when the other is down or lost.

Wednesday, July 13, 2011

Wednesday, July 13, 2011

Tonight's picture was taken in June of 2007 in Lancaster, PA. We took Mattie to a restaurant called Plain & Fancy, because we wanted him to experience Amish food. Mattie and I both got a kick out of the traditional dessert called Shoo-Fly Pie. This naturally intrigued Mattie because he wanted to know if the main ingredient was flies!!! Fortunately this gooey mixture of molasses, brown sugar, and spices only attracts flies.

Quote of the day: It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had. ~ Elisabeth Kubler-Ross

I find it absolutely fascinating that with the power of one's cell phone you can be connected instantly to people all over town and the world. Peter and I exchanged messages today and he is holding his own despite working incredibly long hours.

An amazingly scary storm hit the DC area this afternoon. I was out and not home. Since I learned to drive in California, I am very cautious about driving in torrential rains and forget about snow. So I actually waited out the storm in a restaurant for 30 minutes. I wasn't going out with the winds and lightning. While watching the rain, I wasn't alone electronically, I had Peter in Nigeria with me, Karen in New York City awaiting a report, Tina in Alexandria trying to figure out if I was in a safe place, and my 11 year old buddy, Katharina text messaging me. When I think about this, it is pretty amazing!

This evening Peter and I were invited to a Children's Cause for Cancer Advocacy (CCCA) event. CCCA is the leading national advocacy organization working to achieve access to less toxic and more effective pediatric cancer therapies; to expand resources for research and specialized care; and to address the unique needs and challenges of childhood cancer survivors and their families. CCCA leads efforts to ensure that these needs and perspectives of children with cancer are integrated into the highest deliberations on health care and cancer policy at the Federal level.

CCCA is very supportive of The Mattie Miracle Cancer Foundation and promotes our House Resolution on their website: http://www.childrenscause.org/

As I entered tonight's event, there was this very special tree filled with pictures of children battling cancer and those, like Mattie, who lost their battle. You can see Mattie's picture on the right side of the tree. This is one of my favorite hospital pictures of Mattie. He had just spent hours digging mock dinosaur bones out of clay and had assembled the dinosaur on the table (his hand is on top of it). It was a proud but tiring moment! To me this picture illustrates his beautiful eyes and his captivating nature.

At the event this evening, I met Marilyn. Marilyn's daughter was treated at Georgetown University Hospital, like Mattie. They weren't there at the same time. Marilyn's daughter (one of our FACES OF HOPE) was diagnosed when she was 11 and she is now 26 and is an art therapist working with children who have cancer. Marilyn was one of the first moms I met at Georgetown, since she runs a parent outreach program at the Hospital. I had met other parents of childhood cancer survivors during my tenure at Georgetown and unfortunately I was never in a good frame of mind to interact with them. To me they represented the unobtainable, I did not find their camaraderie helpful at all. No fault of their own, they were all sincere and delightful. But I understood the gravity of Mattie's condition from the beginning and hearing success stories only aggravated me.

Marilyn and I had a great conversation tonight and I look forward to working with her to enhance support services to families at the Hospital. In addition, while talking to Marilyn I learned more about the complexities of having a teenager battling cancer and especially the long term physical and EMOTIONAL effects that occur post treatment. I learned that many siblings of cancer patients are diagnosed with eating disorders. This is NOT at all surprising considering the fact that siblings feel powerless, NO control in their lives, and also are unable to get the attention and support from parents (who are focused upon the child with cancer) to help them learn to cope with stress and emotions. This is the perfect breeding ground for the development of an eating disorder. It also dawned on me that when a child or teen develops cancer, that developmental time period for them is lost. During each stage of development children/teens gain knowledge and life experiences. However, when struck with cancer patients are no longer learning and interacting with their peers, and therefore to some extent that growth opportunity is stunted.

I learned a lot in my interactions tonight and I find listening to cancer stories a very powerful and enlightening process. These stories further confirmed to me that my ideas for next year's Cancer Walk is right on target. Typically I do not work with Peter on a theme for the Walk until the fall, but this summer, an important idea for a theme has hit me.

When I came home from the event, I found that my front door key literally broke in the lock. I couldn't get inside and Patches was howling by the door. Fortunately since Peter and I have lived in our complex for 15 years, everyone knows us. I can't thank our front desk personnel enough for mobilizing forces to get the key out of my lock and locating another key to get me inside.