Saturday, January 26, 2013

Saturday, January 26, 2013

Tonight's picture was taken in February of 2003. Mattie was 10 months old and one of the things he absolutely loved was nesting cups. Mattie loved to stack them or fill them with water, rice, beans, and sand. These cups got around (floor, tub, sandbox) and they went on many car trips with us.


Quote of the day: Find out where joy resides, and give it a voice far beyond singing. For to miss the joy is to miss all.  ~ Robert Louis Stevenson


I began my day with a text message from my friend Tina. Tina is a faithful blog reader and read a few days ago that I was having some set backs planning this year's Foundation Walk. When she read this she emailed me and wanted to know what I was contending with. So I told her. Her text message today was a follow up from our previous exchange. However, what I did not know was that Tina listened to my issue a few days ago and then took it upon herself to try to reach out to others to get me the help I needed for planning the Walk. What a gift! There are aspects of planning such a big event that are daunting and having someone try to help me without me directly asking is a huge gift! Tina wanted to update me on the feedback she received and asked whether we could talk live about it today. Like my faithful readers know, I strongly dislike talking on the phone. I am still unpacking what this is about, because prior to having Mattie, I could talk to people on the phone for hours. But after Mattie was born, he seemed to get more agitated with me on the phone and most definitely when he was battling cancer, phone conversations would make him very, very upset. Toward the end of Mattie's life, hearing any verbal communication was impossible for him. Which is why Peter and I learned to communicate to each other (even in the same room!) through text messages for the last several months of Mattie's life. I realize my lack of using the phone is a major issue for those in my life who want to talk with me, but I have been conditioned to have averse feelings to the phone.

Any case, when Tina asked to talk, I did pick up the phone. I appreciated her desire to help me. She had me laughing though because she acknowledged my discomfort with the phone and said that if I grew tired of being on the phone today, I should just hang up on her, or press a number and she will get the fact that she had to stop talking. A total riot!!! Naturally I did not hang up or press any buttons but instead I felt grateful that she wanted to help me and the Foundation. Helping the Foundation is equivalent to me helping someone else with a task for their child. The Foundation is my child and when I have a friend who reaches out to help, offers their time, and is committed to its success, it catches my attention, appreciation, and respect. The Foundation is not only my full time job, but it is personal. Everything about it is Mattie! When you help the Foundation, in my mind it is like you are nurturing Mattie.

Peter and I went out to lunch together today and we chatted about upcoming Foundation activities and plans. Our biggest push right now is the psychosocial think tank we are planning in Huntington Beach, CA in February. Taking this on and the Walk are huge endeavors individually, together, if not managed correctly they could be overwhelming. I am also lecturing at the George Washington University on Tuesday evening, so I am working on PowerPoint slides as we speak. I will be addressing counseling students and discussing the psychological impact of losing a child to cancer. So we are quite busy, and busy has its advantages for me!
 

Friday, January 25, 2013

Friday, January 25, 2013

Tonight's picture was taken in January of 2003. Mattie was 9 months old and very full of life. For my faithful readers, I bet you know exactly who Mattie was smiling at in this photo! This fact really did not register with me until Peter pointed it out years ago. Mattie apparently always beamed when looking at me.



Quote of the day: It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change. ~ Charles Darwin


My dad sent me tonight's quote. Darwin was very insightful about what it takes to survive in this world. Certainly strength and intelligence helps, but when you think about all that life can throw at you, in the end being adaptable is key. I look at Darwin's quote in the context of Mattie's battle with cancer and death. My biggest joke is I have four degrees and all these diplomas which signify some sort of intelligence in our society couldn't help Mattie in the least! As for strength, I am not physically strong, but I am a force nonetheless. If I sense a wrong or someone who needs an advocate, watch out, because I can be relentless. I do not discount that these skills helped with Mattie's care, but they couldn't save Mattie, nor can they help me in, out, and through grief. Having the skill to adapt to change, or in our case, one of the hardest changes a parent will ever have to face..... the death of a child is vital for survival. It is hard to make sense of our world now without Mattie and the only thing I can say about time is that it doesn't heal all wounds, but it forces us to live day to day and thereby find a reason, purpose, and will to live. Some days it is easier to adapt and cope and other days even three years later, I want to retreat from the world.

I had the opportunity to visit with my friend Charlie today. Charlie is a former student of mine and in fact she was in one of the first cohorts that I taught after obtaining my doctorate degree. This seems like a lifetime ago! Over time Charlie and I became friends and she was very supportive of us while Mattie battled cancer. She wrote to me every day with supportive messages and reflections! Charlie also wrote to me every day for an entire year after Mattie's death. We remain in contact weekly now and when I heard she fell and landed up in the hospital I felt saddened by this news. I was happy that I could reconnect with Charlie today, see her progress, and meet her two adorable cats! Like Patches, Charlie has a cat that stays close to her and is a wonderful companion to her while she is recovering. The beauty of a cat!

Later in the day, I visited my friend Mary in her assisted living facility. I had something to drop off to her, and decided to stay and visit for a bit. Mary's caregiver was with her, so Shayla and I chatted and Mary listened. I recounted to Shayla the night that Mary's husband died. Mary, though mute, was glued to my every word and was taking it all in. As Mary was watching me, it reminded me of the way Mattie used to get wide eyed as I retold the story of his birth. Mattie loved hearing my rendition of this story, and though no words were spoken by Mary today, it was clear by looking at her eyes that hearing about her husband and the connection they had together meant something to her. For you see Mary's husband did not die until she held and kissed his hand. Then literally 15 minutes later, he died. It was a powerful and emotional moment which I will always remember.
 

Thursday, January 24, 2013

Thursday, January 24, 2013

Tonight's picture was taken in January of 2003. Mattie was 9 months old and on a walk with us of Roosevelt Island. Mattie's love for the Island started early and as you can see here, Mattie loved traveling on Peter's back. This backpack gave us a new lease on life because prior to the backpack there was nothing we could put Mattie in that he liked. Mattie despised his stroller, looked like he was in pain in a baby bjorn or front carrier, and wouldn't stay long in a car seat.



Quote of the day: It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no real security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power. ~ Alan Cohen

The day began with snow but fortunately there was no accumulation on the main roads and only about a half of an inch on side walks and side streets. I learned to drive in Los Angeles, therefore I have NO concept at all for driving in the snow. My lack of experience is bad enough, but the absolute chaos and frenzy that develops in the DC area over snow, breeds panic! So I am not a person who loves to see snow, mainly because when it snows in DC I feel trapped and even more isolated. I do not find the white stuff beautiful, peaceful, and it instills no sense of nostalgia in me.

My plan was to go to my zumba class today. Starting the day by exercising makes me feel better. However, when I saw the snow, I knew that the class would either be cancelled or delayed. Fortunately it was only delayed and that got me up, moving, and interacting with others. Peter has tried to encourage me to work out in our complex's exercise room because he knows I feel better moving around. But for me the moving around must involve music, dancing, and seeing other people. I am not disciplined or interested enough to get on a piece of equipment and walk, run, etc. What I love about this particular zumba class is it involves dancing and to me dancing is fun and not necessarily exercise.

I haven't been feeling well and today after class in the freezing cold, I went to fill my car up with gas. During the process I landed up slipping in snow and getting gas all over me. It was a horrible feeling and smell, but I managed through the day somehow. I am signing off for today, am plugging away on Foundation items, and hoping tomorrow is a better day.

Wednesday, January 23, 2013

Wednesday, January 23, 2013

Tonight's picture was taken in May of 2005. Mattie loved his frog sandbox. All sorts of things landed up in this box, from hotwheel cars, toy boats, pieces of legos, and the list goes on. You would be amazed by the play schemes Mattie created in this box. At one point he even took some of Peter's scrape wood pieces and used them in the box as ramps for his cars. Despite the frigid weather we are having in Washington, DC, when I got home yesterday I found a little girl and her grandfather playing in Mattie's sandbox. This frog box sits in our common space and no matter how many times I see others playing in the box, I still have trouble accepting it. I am happy Mattie's toys (which I left in the box) are being played with and enjoyed, but deeply sad for the reason the box sits in our common space.


Quote of the day: Those who love you are not fooled by mistakes you have made or dark images you hold about yourself. They remember your beauty when you feel ugly, your wholeness when you are broken, your innocence when you feel guilty, and your purpose when you are confused. ~ Alan Cohen


I had the wonderful opportunity today to visit with my friend Mary as well as meet her mom for the first time. I met Mary in 2007, when our children were in preschool together. In fact, we sat next to each other one night at a moms dinner and that was our first real interaction. At that dinner I learned where Mary lived, and to me it was too ironic. It was ironic because Peter and I had looked at Mary's house when it was on the market and we liked it very much. I am happy Mary is the owner of this beautiful house. I have watched Mary transform the house over the past several years and like myself, Mary LOVES plants. I love passing her house in the spring and summer when things are blooming and typically Mary sends me a picture so I can see close up shots of what is in bloom!

Mary came to the luncheon I held for Ann last week at Tina's house. Mary shared with me her reflections on the day and loved the attention to detail. It was so special to hear her recount of the afternoon because sometimes you just don't know whether your labor of love was successful without such feedback. Mary spoiled me today to a lovely tea and treats at her dining room table. I felt like I was attending a high tea and I loved the elegant way she presented everything, but more importantly she made me feel special. I know the work that is involved with getting out one's good china and linens and this effort did not go unnoticed or unappreciated by me. 

I had a lovely three hours with Mary and her mom, we talked about all sorts of things, and even Max (the dachshund) seemed to take a liking to me. It was a lovely way to start off a cold and depressing day.

The next several months are very intense for me as the Foundation has a Think Tank scheduled in California in February and its annual Walk in May. I have experienced several set backs already regarding the Walk and with each I try to regroup and continue on. But the Walk is a daunting task and though it may look simple to plan it is a monumental effort which involves city permits, coordination of people, developing logos, designing the walk website and the list goes on! This is just the tip of the iceberg, because we also run a raffle at the Walk which could be a full time endeavor in and of itself. I feel very fortunate that Carolyn, my friend and raffle chair, remains committed to our cause, working with me, and I appreciate the energy, focus, and dedication she brings into her role. Given the set backs I have recently had, I was afraid that perhaps Carolyn wouldn't want to take on this role again this year. After all it is a large time commitment, needless to say I am thrilled to work with Carolyn for a FOURTH year in a row. As I said to her, I couldn't imagine doing this without her!
 

Tuesday, January 22, 2013

Tuesday, January 22, 2013 -- Mattie died 176 weeks ago today.

Tonight's picture was taken in October of 2004. That Fall, Mattie was enrolled in a preschool in Washington, DC. It was a short lived experience, less than one semester. After two months of preschool, Mattie was pulled out of the school and remained home with me for the rest of that year. In all reality, I should have exposed this school and its very dysfunctional director! However, on this particular occasion, the preschool went on a field trip to a farm in Maryland. Since I had hesitation and concern about the director's abilities, I found a way to go on the trip as a parent chaperon. Despite the school's poor leadership, Mattie had a lovely time picking a pumpkin, and I am happy I captured him in motion that day!


Quote of the day: One small cat changes coming home to an empty house to coming home. ~ Pam Brown


I started my day by going to my zumba class. I haven't been to class in WEEKS! It was a frigid 20 something degrees in Washington, DC, but I was motivated to get up and out. I am glad I did because moving around and hearing music always makes me feel better. I saw my friend Heidi in class today and she surprised me with a welcome home gift. She gave me a beautiful green butterfly ornament. When I got home today I clipped this cutie to my curtains. As Heidi knows butterflies are special to me and they symbolize my love and connection to Mattie. So this gift means a lot to me on many levels!


After class, I went to visit my friend Mary who lives in an assisted living facility. Mary's caregiver was unable to spend the day with her, so I decided to help break up her day by sitting with her for a couple of hours. Mary was unable to say ONE word to me today. Yet I talked to her non-stop for about 90 minutes. I basically recounted her daughter's birthday parties to her, my reflections and observations from the parties, and I also shared with her from my memory the many wonderful notes I placed in her daughter's birthday memory book that were written by family members and friends. Mary was wide eyed and taking everything I was saying in. On occasion she nodded in response to my questions and after I spoke, she literally fell asleep. As if the stimulation for the recounting of so many wonderful tales wiped her out!

After I left Mary today, I reflected on the beauty of being able to sit with someone and to know her well enough to be able to direct a one way conversation for almost two hours straight. Mary and I are from two different generations, yet we came into each other's lives at a time that was vulnerable for both of us and yet similar. Somehow these similarities cut through the differences, even the differences that exist within us today with one of us being able to talk and the other being mute.

When I got home this afternoon, Patches was thrilled to see me. She greeted me and actually ate food. I can certainly see she is dwindling away, but not suffering. To me that is key. So far we are going into week three, after she was officially diagnosed with cancer. I am happy I did not put her to sleep three weeks ago. As long as there is life inside this girl, with an emphasis on her quality of life, she will remain with us.
  

Monday, January 21, 2013

Monday, January 21, 2013

Tonight's picture was taken in April of 2005. Mattie was three years old in this photo and he was in love with anything that had wheels. In fact, under our staircase he parked several wheeled vehicles. At times our home looked more like a parking lot for cars, trains, and bicycles. But it was all okay. I learned early on with Mattie that sounds from toys and objects did not bother me in the least. What got me on edge was crying and tantrums and we certainly survived many of them together. Once Mattie was able to talk, the tantrums subsided and logic and reasoning could be applied to our conversations. Mattie believed in the art of negotiation and his famous line which Peter reminded me of last night was.... "talk about it!" Mattie was like my little parrot. He adopted many of my words like "apparently," "let's talk about it," "plan," and "process."



Quote of the day: You don’t get ulcers from what you eat. You get them from what’s eating you. ~ Vicki Baum

Despite it being a National holiday, Peter had to work today. I figured I would spend the day at home catching up on a ton of Foundation work that I let lapse because I have been focused on party planning for weeks. However, last night my friend Tanja asked if I wanted to get together with her and her daughter today for lunch. I have found that getting out of our home even periodically during the day is very important for my mental health. But today was inaugural day in DC, and with that chaos ensues. Chaos on the roads. Roads were blocked everywhere near us and the usual bridge I take to cross from DC to VA was closed. My driving to Alexandria is like driving on auto pilot. I have been doing it almost daily since 2005, when Mattie entered Resurrection Children's Center. Therefore, I know all sorts of alternative routes to get from DC to Alexandria!


For the majority of residents in my region crossing over from one place to another is not only unheard of, it isn't done! But for Peter and I, we freely drive from DC to Virginia and Maryland. But I am always amazed at how unusual this seems to others. Nonetheless, I have to tell you it was rather daunting to see police cars everywhere around us and not to mention military Humvees. Near where I lived was this sight! It was eerie driving on the roads, because it seemed like an abandoned city!

Despite it being freezing today, it was nice to get out, to have lunch and chat. I enjoyed hearing what my 12 year old friend is doing in school and how she enjoys to spend her time on the weekends. She is an animal lover like myself, as well as an only child, so I find we share many things in common despite our age difference.

As I was driving in the car today, there was a commercial on the radio for migraine and headache sufferers. The announcer encouraged us to keep a diary of headache triggers. I started laughing! I do not need a trigger. As soon as I open my eyes in the morning, I have pain, and when I go to bed, I have pain. There would be NOTHING to record! I know people can't believe it, but I haven't known a headache free day since April 4th of 2002. I am going on 11 years straight! I am signing off for today since I have the start of a migraine and the less computer time for me the better.
 

Sunday, January 20, 2013

Sunday, January 20, 2013

Tonight's picture was taken in May of 2005. We took Mattie to a butterfly garden that just opened up as part of the Smithsonian. Someone recently asked me why I always wear butterfly pendants and pins. My answer was that butterflies loved Mattie. They always landed on him! They were attracted to him, which I found interesting since butterflies are such delicate creatures whose wings can't be touched. Yet they enjoyed Mattie and he understood NOT to touch them but to let them land and then fly away. When I see these creatures out in nature now, they make me think of Mattie. They come into our lives and bring us beauty, but this beauty is temporary and must be appreciated in our memory not unlike Mattie.


Quote of the day: The only person who is educated is the one who has learned how to learn and change. ~ Carl Rogers


Nineteen years ago today my maternal grandmother died. When I woke up this morning, and saw that it was January 20, I knew exactly the significance of the day. My grandmother was a key person in my life and I remember the day she died as if it were yesterday. I was living in Boston at the time and literally that morning as I woke up I recalled a dream I just had. In my dream, I was with my grandma and I vividly recall that we were talking. She then handed me a dozen red roses. When I reached out to grab the roses and hold them, each rose shriveled up and died. At that point I woke up and soon there after the phone rang and I learned that my grandma had died. I believe this dream was almost like a premonition.

I woke up exhausted and in a funk today. Many people I saw yesterday told me that I most likely would feel this way after weeks or planning for my friend's birthday party. An emotional let down in a way. Perhaps, but I can hardly keep my eyes open and feel depressed. Peter and I went out to lunch, as Peter wanted to change my environment. We walked around the mall for a bit and we landed up walking through Pottery Barn. At one point we sat on one of the couches and we started talking about Mattie's room. This is the first time we talked about what to do with Mattie's room. I think we both know that we have to make this a usable room again. I know this in theory but emotionally I am not sure what to do with ALL of Mattie's things. The room is set up just like Mattie left it. As he left it when he was healthy, not what it looked like as he was battling cancer. When he was battling cancer, his room was a nightmare, and when he died, I stored boxes, gifts, and all sorts of things in the room. I couldn't even walk in the room. It took months to go through the boxes and return the room to some sort of sense of normalcy. A task that I basically took on alone. But the room is in tact, as if I expect Mattie to walk back into it and use it one day. Needless to say, this was too much of a conversation for me to handle with a headache and feeling emotionally fragile. So after tearing up through Pottery Barn, we had to change the subject.

This afternoon, Patches found her way to the couch and literally walked on top of Peter and sat with him for hours. Peter couldn't move and I just laughed over this. Patches is very attached to Peter but Peter feels she is sticking close to him because she doesn't feel good. Which is quite possible since Patches is NOT a couch, lap, or cuddly type!