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!