Saturday, March 27, 2010

Saturday, March 27, 2010

Tonight's picture was taken in May of 2005 at the DC Aquatic Gardens. These gardens are one of the District of Columbia's best kept secrets. They are breathtaking, especially in June and July when the water lilies are in bloom. It is almost like being a part of a Claude Monet painting when the water lilies are in their glory. Mattie loved visiting this park and he especially loved looking for great blue herons, beavers, and other wildlife that inhabit this space.

Poem of the day: For Trevor by Kim H

I miss you more than you'll ever know
The world is not the same without you here
Sadness washes over me without a moment's notice
Your presence can be so clear
I wish I could be that Mom again
The one who answered every call
And laughed at all your stories
Who lent the understanding ear
I loved being there for you
I looked forward to all that lay ahead
I wanted the best for you
I lost such a good friend
I still long to see that bright smile
That lit up those Irish eyes
I want to feel the strong hug
I want to hear your contagious laugh
The wait seems so long indeed
Until I can see you again
I just want to be that Mom again
The one who loved you more than you'll ever know

I woke up this morning from another memorable and equally disturbing dream. However, in this dream, Peter and my parents are in it with me. All of them are screaming at the doctors who are in the room with me. I vividly saw three doctors in the dream with me, and I knew one of them was a surgeon and the other was a neurologist. In any case, in the dream, they all concluded that something seriously was wrong with me, but they couldn't agree on the problem or the diagnosis. As I was coming to consciousness, I remember that I was running away from this chaos, and as I exited the hospital, I noticed I was running on cobblestone streets, and there were street car tracks in the road. I quickly realized I was no longer in the year 2010, but in a completely different decade. That is all I recall, but it was enough to make me pause, since I have now had two dreams in which I have some sort of terminal illness.

Peter and I spent the day together at Ann's house. Ann and her family return tomorrow night from vacation. While she is away, I promised we would clean up her front yard flower beds. We had a hard winter, and with that bushes and plants got hit hard. Peter and I have always loved to garden, and to be outside together. Working on this project, was a nice change of pace from our usual direction-less weekends. Between Peter and I, we have enough skills to select, design, and create a garden. It is still a work in progress, but we felt good with what we accomplished today. While we were cleaning up and planting, several of Ann's neighbors came over to say hello or to comment on how nice things were looking.

Later in the afternoon, I went to visit Mary! The first thing I said to her when I saw her was.....ONE MORE DAY (until Ann returns). All of Mary's caregivers started to laugh. Because they said the same thing to her as soon as she woke up today! I helped Mary with her dinner, we chatted about Ann's garden, and how she is looking forward to her granddaughter's first Holy Communion in April. As the evening wore on, Mary was telling me about her sisters and her brother, and this led her to then talk about her son. Mary's son died of cancer two years ago, and she told me that people know she lost her son but that they really do not understand how this really feels. She said I am different, because I know this pain and I also know that this pain won't go away. I couldn't have said it better.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Yesterday was clearly a really tough day for you. Most other folks would have pulled the covers over their heads and refused to go out but you know how much your presence means to Mary and you went anyway. I am so sorry that your day both began and ended in a difficult way but I am grateful that you and Peter have reached that place where you can support each other over the really rough spots. Unfortunately, it is really impossible to predict what will bring them on or where on that road of life, those landmines of grief may be. So all I can say is when you stumble on one, I hope there is always a helping hand and a willing ear available to help you though. I hold you so gently in my heart today."

Friday, March 26, 2010

Friday, March 26, 2010

Tonight's picture was taken in August 2007, in San Diego, California. Each summer, we would take Mattie out to California to visit with my parents, who live in Los Angeles. During our visit, we would always venture down to San Diego for a few days. Mattie loved seeing the sailboats, being by the water, and visiting SeaWorld, Legoland, and the San Diego Zoo. From our hotel window, Mattie could see these bicycles journeying passed him. So he encouraged us to try this experience. I guarantee you, this looks a lot easier to do than it actually is.
Nonetheless, we all had a great time, and Mattie loved the entire bicycle trip. I think his smile speaks for itself.

Poem of the day: I Can Almost See You Smile by Victoria Walker

I can almost see you smile
In the shadows of my mind,
Bringing to me the peace
I have struggled so hard to find.
I can almost hear your voice
Telling me “Be not saddened nor afraid,
Just remember all the good,
How we loved and laughed and played.”
I can almost feel your touch
Wiping away my every tear
As I stand among my shattered dreams
Letting me know you are still near.
I can almost hear you say,
“One day, you’ll be here too.
Live the life you have before you
For I will be here, waiting to welcome you.”

This morning I felt absolutely exhausted and could tell this was going to be a difficult day emotionally. I have my moments when I function quite well, but then there are days where the littliest things will set me off. Seeing Mattie's pictures around our home were thoroughly challenging. In our kitchen, I have many pictures of Mattie, and in these pictures it almost feels like Mattie's eyes are piercing through mine. Maybe I react this way to his pictures because he is my son, but I do not feel the same reaction when looking at pictures of other people. As I began to cry, I heard Mattie's wind chimes twinkling on our deck. All I could think of and say was, "Hi Mattie, I am happy you are with me today."

Despite the mood I was in, I was focused on getting ready because I knew Mary (Ann's mom) was expecting to see me today for our lunch. Shayla (Mary's care companion) and I were text messaging back and forth all morning, as we were confirming Mary's lunch preferences. When I got to Mary's assisted living facility, Mary was sleeping. She was absolutely exhausted, and Shayla let me know that Mary seemed very sad and not herself starting on Thursday. So much so, that Mary was unable to accomplish much with her physical therapist yesterday.

While Mary was napping, Shayla and I had a nice time chatting. Shayla balances school, Mary, and her children. She is studying to become a nurse, a profession that I deeply admire. However, our luncheon party continued to grow when Margaret came by to visit. Margaret was Mattie's first preschool teacher, and she visits Mary on a regular basis. The irony is Mary has been talking about Margaret all week, so the fact that Margaret visited today, was just what Mary needed.

We woke Mary up for lunch and to visit with Margaret. When Mary saw me, her first question to me was "are you okay?" She told me she was worried about me because she did not see me on Thursday, and she missed me (I told Mary on Wednesday that I wouldn't visit on Thursday, but these kind of facts are hard for Mary to keep straight). I was touched that Mary seemed to remember my absence. Each time Mary and I see each other this week, we do an Ann countdown (as to when she is coming back from vacation). We joke about who misses her more, and this usually gets Mary to laugh. The mantra in the entire facility today is..... IT IS ONLY TWO MORE DAYS (until Ann returns)! All of Mary's care providers are seeing just how important Ann is to Mary. This is not something I did not know already, but it is always fascinating to see this through the eyes of others. Mary's care providers at this new facility are lovely, compassionate, and very family oriented. Moving Mary to this new facility was ultimately the right decision. She is less agitated and it is clear that her physical needs are managed better.

Mary was thrilled to see Margaret, and to receive a beautiful plant from Margaret. Mary sat with Margaret, myself, and Shayla to have lunch. I think Mary enjoyed the conversation, the stimulation, and the fact that we thought about her by bringing in flowers and food for her. Mary ate quite well this afternoon, and I think she liked the fact that she got to select what she wanted to eat, rather than being served what others decided upon for her.

After lunch, Mary and I sat together for about two hours and looked at her family photo albums. One book in particular was made by Ann for Mary, on Mother's day. The album was very touching, but I realized after looking at all these photos, that I was deeply, deeply sad. I was sad because I got to see Ann's children grow and progress from infants, to children, to who they are today. I naturally couldn't help but feel heartbroken by the fact that I don't have Mattie in my life. When this feeling comes on, it is hard to shut it off. Instead, I land up spirling down hill, and can get to a very low and confused place. I stayed with Mary through dinner. She thanked me for being with her during dinner, because she said I made it easier for her.

Before I headed home, I went to Target. I had some items that Mary needed for tomorrow. While roaming around in the store, all I could see was one child after another with his/her mom. It was almost like a constant reminder today of what or who is missing in my life. While shopping, I overheard a little girl, maybe 4, talking with her mother. The little girl was curious why this little boy a couple aisles away was screaming and crying. She was particularly interested with how the little boy's mom was responding to him. The line of questioning stopped me in my tracks, because Mattie used to ask me questions just like this. He was always very curious to understand why others were upset, and what could be done to correct that situation. He also was always very interested in knowing how I would have handled such a situation if the child in question were Mattie, rather than the bystander we were listening to. Mattie was an unique 6 year old, because he analytically looked at emotional situations, wanted to understand them, and also wanted to dialogue with me about them. The apple did not fall far from the tree! He was only 6, but emotionally he was on my plane of thinking. Therefore, how on earth couldn't I be devastated and crushed without this special person in my life?

By the time I got home, I was NOT in a good place. Peter could sense that immediately. He just sat down and listened to me. I went from yelling (not at him, but in general) to crying. Despite all the emotions Peter has on this same topic, in these times when I fall apart, he is right there for me, and not turning away from the pain.

While I was visiting Mary, Peter journeyed to Georgetown University Hospital. One of the teenagers who we had gotten to know when Mattie was in treatment, relapsed. She has a long road ahead of her as she fights her cancer, but Peter and I admire her family's love and determination. Peter visited her and her mother tonight and brought them dinner. I supported Peter in this, and I knew this is something he deeply wanted to do. We greatly feel for this special family, and we know how wonderful it was to receive non-hospital food from our Mattie Team supporters, that we want to return these special moments for others battling with cancer. As Peter visited the HEM/ONC unit, he saw two of our favorite nurses, Tricia and Miki. These are two fine women, who devoted a great deal of time getting to know and love Mattie. I most definitely would have been thrilled if I never had to experience pediatric cancer or step foot into a PICU. However, that would also have meant that I wouldn't have met the fine nurses who became part of our treatment family. Experiencing such fine individuals, does restore one's hope in the world. Peter also ran into Brandon (Mattie's big buddy) and Toni (Brandon's mom) at the Hospital. Brandon had to get a colonoscopy today, however, despite the long day of testing, the good news is Brandon is fine. We were thrilled to hear this news. I think Brandon has seen enough trauma from cancer for a lifetime.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "The dream sounds awful and frightening. According to the dream dictionary, dreams of cancer signify grief and loss (no surprise) but if you were being treated for cancer it means there is a change for something positive coming into your life. I hope that is so for you. When I woke up this morning and looked out the first thing I thought was oh, too bad it is raining. I wish the weather were sunny for your lunch with Mary. However, I know that you will bring your own sunshine with you to the visit as you always do. I am very much looking forward to hearing about the visit and seeing a picture of Mary up and around if she is amenable. In spite of the weather, I wish you a day that has emotional patches of sunlight in it. I hold you gently in my thoughts."

Thursday, March 25, 2010

Thursday, March 25, 2010

Tonight's picture was taken in May of 2007, on Mother's day. I remember that day like it were yesterday and particularly recall Mattie's love and excitement. As I approach my first mother's day this year, I honestly can't think of a sadder day. Mother's day will always remind me of the role I only had for seven years. There are times I feel like my situation is so surreal that I am going to wake up from it. But unfortunately never do, instead it isn't a nightmare but my reality.

Poem of the day: Wednesday lost by Shaakiera Schroeder

As "The" day draws nearer
Spirits sink lower
Fears rise, higher.
Not completely sure why,
It's as if we expect something...or
"That" to happen again...
Anything worse...is impossible!
Still so unbelievable _ surreal almost.
Two months short of a year
And we continue to struggle to grasp the fact_
You're gone!
How do you go about planning an Angel Day...?
When you can't believe...
Yet register every Wednesday...
As we stare at the clock...silence engulfs...
We hold our breath...for that moment to pass...
I find myself praying that this Wednesday ...
Wednesday no: 45...I WAKE UP!
The nightmare is over!
When your mom calls ...I hear happiness _
Instead of the emptiness that fills her voice...
Her heart...her soul.
Sorrowfully...it's not a dream,
This is our heart aching reality...
Leaves an unnatural feeling in our souls...
"GOD give us strength to make it through TODAY"
I open my eyes and prepare to face,
The never shifting pain...
Aggravated and worsened...
By the FEAR of every Wednesday!

I woke up this morning greatly upset. I was upset because I had a very vivid dream that I was dying from pancreatic cancer. Naturally I do not have pancreatic cancer, but in my dream I certainly did. This whole vision was truly disturbing to me, and most likely reflects many of the fears and traumas I witnessed Mattie go through. Seeing Mattie suffer and eventually die has had and will continue to have a profound effect on Peter and I. This morning as I was in our kitchen, I saw Mattie's picture on the refrigerator. I see this picture each morning, but this morning it set me off. I imagine I reacted this way because I was so shaken by my dream, and that made me vulnerable to other feelings.

I spent a good portion of my day today visiting Honey at the George Washington University. As some of you may know, Honey is the director of the Human Services program at the University. I have worked for Honey as a part time faculty member for ten years, and it was very nice to be invited back today to spend the day with her. Honey has worked at the University for over 40 years, and announced this semester that she is retiring. This will be a major, major loss to the University and the program. However, the greatest honor those of us associated with the program can do is keep this program strong and vibrant, as a attribute to Honey's lasting legacy. I enjoyed my time with Honey and being back on campus. In a way it seems like I have been away from the University for decades, rather than two years. The University seems to signify life to me. Life because it is filled with energy and the wonderful ideals of undergraduates. It is hard to believe that at one time, I was that ideal, that hopeful, and that positive about the future. If someone would have told me when I was in college that I would eventually survive one of life's greatest tragedies, I most likely wouldn't have believed it.

As Friday approaches, I am looking forward to trying to make Mary's (Ann's mom) day engaging, happy, and stimulating. She knows I am bringing her lunch tomorrow, and in anticipation, she is really giving it great thought about what she would like to eat. So stay tuned. It is my hope that she enjoys her Friday, and that I also get to see her walking again. This time I will capture it on camera!

I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "It is so hard when you have suffered a trauma and you are out of the flow of the world to realize that things have gone on without you. It is almost like being in a coma or a foreign country with no TV or newspapers when major events have taken place and you come back and realize that you have no idea how things got to where they are. Nor does anyone around you understand why you are still "elsewhere" in your mind. Sometimes I want to scream, "stop, something important has happened here" but I realize that it is only important to those of us who are directly involved in what has happened. What you are suffering is not just the loss of Mattie as he was, but Mattie as he would have been and all that went with that went with his life to be. I think those losses are just as hard as the current loss of his physical being in your life since you will have to live forever with those losses. I don't think people always get that and that's why they seem to think there will be a point at which you can "get over" the death of your son. I am someone who was resisting the pressure to practice on my own when I cannot get to class to practice with the group. When I told the instructor this, she said, do it anyway because practice on your own is good for other reasons which she would not name. I think I began to see her point today as I was on my own. I would get to a point where I was out of balance and needed more work and rather than having to move on with the group, I could try it again and get closer to where I need to be. I was able to take it at my own pace and explore the feeling in my head and in my body as I went through the practice changing things if I felt that would be more helpful. I see now what she means when she says you trade group energy for personal attention. So it is with most things. When you are with the group, the energy carries you through the rough spots but you can't stay and focus when that might be helpful. On the other hand you need much more self discipline to go it alone but the ability to test and explore is greater. So it is with grief as well. Friends can carry you over some of the rough spots but much of the work is done alone and with introspection. So I send you the energy I found today to help you through those times when only introspection will work. I hold you gently in my thoughts."

Wednesday, March 24, 2010

Wednesday, March 24, 2010

Tonight's picture was taken in October of 2008, at Baltimore's Inner Harbor. My parents, Peter, and I took Mattie to the water right before his first limb salvaging surgery. I remember this trip all too well, and I remember the fear I felt as I knew Mattie was going to face major surgery. However, despite my worst fears at that particular moment in time, I had no idea that in less than a year Mattie would be dead. I guess as a parent fighting for your child's life, you remove that thought from your head in order to mobilize forces to fight cancer.

Poem of the day: Colors by Sally

The Earth lost all its color the day you went away
I look around and all I see are different shades of gray
If I traveled up to space
and looked in the rear view mirror
The Earth would be as pale as the moon
Without you living here.
The forests dull, fields turning brown
All I know each day is that you're not around.
Bright orange poppies?? Amazing color you might see...
But even they look faded...
insignificant to me.
Where did the beauty go? Why can't I see it?
Why did the world fade away.
It doesn't look the same, you know
Without you here.
Everywhere I look
I see only that you are not there.
Your sparkle and luster gone from my world.
So I wait....
I can't imagine how much brighter Heaven is today
Since you took all the colors from Earth with you...
The day you went away.
Green vibrant and alive
Red full of energy
Yellow bursting with warmth and fun
Blue beautiful and endless and the sea.
All faded without you.
Now...only gray

This poem, Colors, describes how Peter and I see the world now. While everyone around us sees the world most likely as they saw it last year, with trees and grass being green and the sky being blue, the world no longer looks recognizable to us. In fact I am in amazement that the world continued spinning and peoples' lives kept evolving, while we suffered a trauma beyond imagination. However, unlike national or international crises that are covered on CNN and Fox News 24 hours a day, our crisis was just that.... our crisis! The world wasn't mourning with us, the world did not stop and reflect that a seven year old boy battled the impossible and lost the cancer war. A war that too many children lose each and every day! Families are left traumatized from this loss, and yet it is a private loss. An indescribable loss, and a loss that most definitely affects the colors, people, and experiences you see and feel from that point forward.

I went to visit Mary, Ann's mom, this afternoon. Ann and Bob sent more than one picture today for us to look at, and it is wonderful for us to be able to see how they are doing on vacation. For Mary and myself, it pulls us out of our inner worlds and it gives us a lot to talk about. I missed Mary's physical therapy session today, but I hear she walked some more today. I look forward to seeing the session on Friday and actually taking pictures! Mary shared many stories with me today and at one point she stopped and asked me if hearing her stories made me sad. She wanted to know if they made me think of Mattie more. I told her that I always think of Mattie, but that her stories are a very good distraction for me. They also allow me the opportunity to understand her better. Mary reflected on her recent hospitalization in January. Though she may not recall why she was hospitalized or what procedures and tests she had, she is very cognizant of the fact that I spent many hours with her each day at the hospital. She said she is not sure how she got lucky enough to have a friend like me. It was a very loving and special comment for me to receive, and I told Mary that the feeling was mutual. At which point she grabbed my hand and held it.

Prior to coming to see Mary, I got myself quite upset with the notion that Mattie isn't coming back. Which of course I knew, but by not coming back, it means something quite significant for our lives. The family holidays I was hoping for are gone, the future of different Mattie milestones and vacations are gone, and the list of other 'not happenings' only seemed to grow longer. Losing Mattie is such a tremendous loss that most days I simply do not have the fortitude to focus upon it. But something was different about today. I text messaged Peter while in this state, and naturally I knew he would get it immediately, because he was most likely in the same place. Peter went to Georgetown University Hospital today. Each month he serves of the hospital's oncology institutional review board, as a community member. I always wonder how he manages to walk through the rose garden and to see all the areas we used to walk and explore with Mattie. I do not even have to ask, because I know the answer is.... it is just impossible.
 
I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "How wonderful that Mary is able to get up and begin to move around with a walker. Being able to move about by oneself with the aid of a walker has to be a tremendous boost to her self esteem and independence. One of the big issues that causes depression in the elderly is their growing dependence on others; any step in the opposite direction is to be celebrated. This will be a nice surprise for Ann when she gets back. How lovely that you saw the deer in the back of the living facility; access to nature and other living beings is so important for everyone's mental health and I would take it as a sign that Mattie is around since female deer tend to keep their babies hidden when in populated areas. Today's practice was all about personal challenges, to push oneself into the zone of mild discomfort in order to make progress. I can see how that applies to almost anything in life, if you stay forever in the comfort zone you never move forward. I sent my determination to continue to progress to you as my intention for today. I hold you gently in my thoughts."

Tuesday, March 23, 2010

Tuesday, March 23, 2010 -- Mattie died 28 weeks ago today.

Tonight's picture was taken in March of 2005, when Mattie was about three years old. He and Peter were goofing around together playing with Mattie's plastic food shapes. They both decided they would use the plastic food in a funny way to scare me. Actually Mattie and Peter were trying to look like beetles. I thought they did a very convincing job!

Poem of the day: It's not spring in my heart by Charlie Brown

I see spring in the yard
Robins on the wing
Trees starting to bud
Songbirds start to sing
Daffodils in bloom
Tulips break the ground
Things are coming back to life
There is new growth all around
But in my heart it's winter
No new life grows here
The ground within lies fallow
I cannot feel you near
One day I may find
A new bud of hope
Watered by patience
And those that I love
And that's when I know
Even though you are gone
You are here in my heart
And my life will go on.

Today marks the 28th week of Mattie's death. I do not understand how these weeks go by so quickly. I think it is only natural that those around me may be expecting that life will be easier for Peter and I now that time has lapsed by. Goodness, I may have thought the same thing two years ago. But unfortunately now I know the reality of such a devastating loss. The reality isn't pretty.

Charlie's poem is very touching to me, because it captures how one's heart is completely devasted by the death of a loved one, and yet the poem ends with a glimmer of hope. Hope that this intense love will be incorporated, remembered, and etched in one's mind and heart, so that eventually one can continue to live and thrive, without needing the physical presence of this love. I think there are many ways one can react to the death of a loved one, and as portrayed in this poem, it would be a natural reaction to such a traumatic death to close one's self off and to not feel anything. I certainly did that for many months. However, over time, what I have discovered is quite the opposite. Mattie's death has left me overly sensitive, on hyper alert to feelings and emotions, and most importantly with the ability to appreciate those closest to me. So in essence I do not feel as if winter is in my heart, on the contrary now I feel as if my heart exists in a very hot, humid Florida day. It is dripping with emotion, swamped with pain, and thirsting for a way to bring it back to equilibrium.  

As I mentioned previously on the blog, Ann and her family are away this week on a spring break vacation. It probably comes to my readers as no surprise that when Ann goes away, this can be a very challenging time for me. Challenging because she has a way of keeping me balanced during the week. We usually spend our weekdays together and in essence she isn't only a true friend to me, but on many days she gives me great reason and purpose to get out of bed and re-engage with the world. Not having her around this week is like floating on the ocean without a compass. Despite being on vacation, Ann text messages and sends me one picture each day of her children on their Disneyworld adventure. Today she wrote to me that as they stood in line for a Buzz Lightyear ride, they all thought of Mattie. A very nice sentiment to receive on a Tuesday. Somehow though, Peter and Karen seem to understand the extra support I need this week, and I can say it is so appreciated it.

I spent part of the afternoon with Ann's mom, Mary. When I got to her assisted living facility, I was thoroughly amazed! Amazed because Mary was working with a physical therapist who actually got her up, and walking using a walker. I have known Mary for over a year, and until this very day I have never seen her walk. It was a sight to see. Both myself and Shayla (Mary's care companion) were cheering her on, and I promised the next time I was in a physical therapy session, I would take pictures of Mary walking. Why? Because Mary said she couldn't picture herself walking! She said she had no idea what she looked like, so that is when I thought about taking pictures. Seems like these special achievements must be captured!

After Mary had dinner tonight, I then sat with her in the living room of the assisted living facility. As we were chatting I noticed something out of the corner of my eye through the window. What was it? But deer! There were four deer grazing in the backyard of the facility, and I wheeled Mary closer to the window to watch these lovely creatures. Mary commented, "how many people are lucky enough to see deer in their backyard?" As we continued to watch, it was clear that one deer was a mother, and she had her baby trailing behind her. I couldn't help but pause and imagine Mattie's commentary of this sight. Mattie most likely would have said, "they look like us, a mommy with her baby."

I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Thinking about you today. Perhaps it was about this time last year that I started taking care of Mattie? So much has happened in that year. Thinking of you...this Tuesday and every day. Much love."

The second message is from my friend, Charlie. Charlie wrote, "It is wonderful of you to step in and care for Mary while Ann is away. It speaks volumes about you and your wonderful counseling/caring style that Mary is happy to have you as her visitor this week when her daughter is gone. And you hit exactly the right tone, we all need something to look forward to, an event, a visit, a vacation, etc. That's what makes a life worth living rather than just day to day survival. I am glad you got to visit with Debbie last night; it was always very clear from the blog that without Debbie's continued support throughout the whole process of tests, treatment and finally Mattie's release from pain, that things would have been much worse without her efforts on his behalf. I too wonder what Mattie would have looked like, who he would have become had the treatments worked for him. All I can say is that I know he is beyond pain, but I don't believe he is beyond love and that goes on forever in both directions. As always I hold you gently in my thoughts."

The third message is from my friend and colleague, Nancy. Nancy wrote, "The entries that you write often spark a remembrance of questioning my motives and actions following the death of my Mom. Even though it is another natural part of healing and grieving, it generally causes more questions rather than acceptance of the loss. I often think of something she has said or did and wish that we could talk like we once did. The last years of her life were like Mattie's; one of pain and illness. I was so pleased that Mattie was able to embrace so many positive responses to his year of discovery. I call it a 'Year of Discovery' because he always wanted to know what was going on and liked to question the people around him. A natural scientist! I know that he had hard days too, yet, your reports spoke of his trusting that Peter and you would alert him to this side of life too. I applaud the two of you in being able to respond to the questions and actions of the children. So often we process these kinds of behaviors as 'wrong' or 'not respectful' as we see them through our filters and not the uniqueness of children. I think the best days are when children are allowed to be children and you made that possible with Mattie each day. It doesn't surprise me that you see a child more clearly now that your lives have been turned upside down. I think your idea about donating the presents that Mattie never got to open, to the Hospital, is a beautiful way to celebrate his birthday. I knew that you would come up with a fitting celebration. Speedy Red will probably be the last of items put away, if ever. To me that car is an essential part of Mattie Brown! It gave him the ability to move around and feel 'normal' in an abnormal situation. Red is the color of passion and action, so, Speedy Red is perfect. I wouldn't be surprised if you try to take a spin every once in a while (I seem to remember a photo of the two of you in it.) You will know when you can make room for other emotions and experiences. The fact that you got active is such a healthy way to process your grief. I wish I did that more often."

Monday, March 22, 2010

Monday, March 22, 2010

Tonight's picture was taken in June of 2002, when Mattie was two months old. Even at two months old, he was alert, always ON, and his eyes seemed to be absorbing everything around him. I particularly loved his facial expression in this photo. Based on his inquisitive smile, you have to wonder what he was focused on or thinking about at that moment in time. 

Poem of the day: I've Stopped Looking for Him by Kim Hodne

I've stopped looking for him everywhere
I'm not sure when that happened
I don't search for him in crowds
Or his car on the road
I've stopped looking for him
Biking on the paths
Swimming in the ocean
Skiing down the hills
I've stopped watching for him
To pull up the drive way
And run in with a hug
And raid the fridge
I'm not sure when this happened
A sudden turning point?
No, rather a very slow realization
That he is not coming back
I've stopped waiting for him
To pick up the phone
And hear his sweet voice
Recounting his week
A movie plays in my head
Of the baby, little boy
Teen and young man
And it's enough
That I don't need to search for him
Around every corner
He reaches me in other ways
Always a pleasant surprise

As Ann is out of town this week, I am overseeing Mary's (Ann's mom) care. I went to visit Mary today, and she asked a lot of good questions about Ann's trip. I explained to her where her family was going on vacation and what they would be doing during the next 6 days. Mary reflected on the first time she went to Disneyworld with Ann's children. She remembered a lot of the details quite well, and clearly this trip meant a great deal to her. I am so happy Mary has these meaningful memories to pull from. I spoke to Mary about the new assisted living facility she is in. I made the mistake of asking her whether she is "happier" in the new facility! I clearly wasn't thinking, because Mary let me know that it is impossible for her to be happy again. I paused because, having lost my son too, I understood exactly what she meant and realized this wasn't the best choice in words. So I apologized and reworded the question. Mary did tell me that losing a son is something you never get over, and keep in mind her son died over two years ago. Not that long ago really, but perhaps from an outsider's perspective this seems like a great deal of time in which healing should have occurred. I now know all too well that time is irrelevant! I do understand how such a death affects your outlook on life and one's will to live, and I appreciate Mary's candor and openness to talk about this.

When Ann goes out of town, Mary greatly misses her daughter. However, I assured Mary she wouldn't be alone this week. That myself and her care companion, Shayla, would be visiting every day. Mary smiled and asked me if I am "in charge" this week while Ann is away. I laughed, and I said "yes." Mary responded by telling me, that she was very happy that it was me stepping in this week in Ann's absence, and that she was hoping it would be me. I took this as a high compliment, because I know how much Ann does for Mary, and how much Mary looks forward to seeing Ann each day. I told Mary that I was bringing lunch for her, Shayla, and myself on Friday, so that we could have a girl's luncheon. She seemed very happy about that because I how important it is to have something to plan or look forward to each week.

Tonight, Peter and I went out to dinner with Debbi. Mattie's sedation nurse angel from Georgetown University Hospital. Seeing Debbi is always delightful, and we certainly have been through hell and beyond with her. Debbi has supported us through every part of the treatment and dying process, therefore, from my perspective it would be hard not to have a deep love and appreciation for her. Over dinner, we shared with Debbi our feelings and the challenges Peter and I have as a couple, who naturally, as individuals need different things in order to grieve. Hearing all of this isn't easy, but Debbi was right there with us and supporting the process. Debbi is one of the wonderful gifts that we received through this nightmare, and I don't say that lightly.     

As we were driving home tonight, we passed by The Georgetown Visitation School. I couldn't help but think about Mattie's Celebration of Life Reception which took place on that beautiful campus. In fact, I may never look at that campus the same way again. Just passing it made me reflect on Mattie's death. As I am sure parents at one point or another in time, wonder what their child will be like when he/she grows up. I distinctly remember myself imagining this when Mattie was healthy. Now of course I am left to dream about this, since I will never be able to know what he would have looked like or would have become.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad yesterday was a better day for you. Sometimes there is no where to go but up. I think your idea to donate new toys that Mattie never had an opportunity to play with is a wonderful one. I know they will be appreciated and it is a terrific way to remember and honor Mattie's memory on his birthday. I have to say I really appreciate your and Peter's changed attitude about the flowers; so often we are more about appearance than substance, worrying about how something looks rather than how someone feels. You and Peter definitely have your hearts and priorities in the right place. In spite of the weather, I hope you find some emotional sunshine in your day today; I hold you gently in my thoughts."

Sunday, March 21, 2010

Sunday, March 21, 2010

Tonight's picture was taken in April of 2008, three months before he was diagnosed with cancer. I caught Mattie in action. He did not realize I was even taking the picture. Mattie loved spring, for many reasons. His birthday was in the spring, but he also loved planting a garden with Peter and I, and he especially loved the hose. He would water plants and water himself in the process. As you can see from this picture, he went outside prepared with his raincoat on, because he knew he was going to water himself in the process.

Poem of the day: A Poem for Trevor by Kim H


I never thought Texas bluebonnets would make me cry
They always were the signs of the beginnings of spring
Late March, early April and your birthday would be coming
April 5th, a time of anticipation and joy
But today, I spotted them along the roadside and they made me cry
I thought of all the photos you took of them
In masses of blue and the pinks and oranges of Indian Paintbrushes
So beautiful, you loved those photos you would sell
Texas Bluebonnets lifted everyone's spirits
Signaling the start of our Texas spring
Your photos capturing the essence of a new season
Lifting your spirits as well
I hope the Wildflowers are in Heaven for you
For then I will know you are at Peace
I hope they are as beautiful as in your photos
But I never thought Texas bluebonnets would make me cry

Today was a better day than yesterday. Though after yesterday, there was no other place, mood wise to go other than up. When I woke up this morning, I decided to do chores around our home. The simple action of moving around and focusing on a task was therapeutic in and of itself. The more physical activity I did, the better I felt. Over dinner tonight, I actually brought up the topic of Mattie's toys to Peter. Typically Peter doesn't even address these issues with me because he knows I am very sensitive about anything that belonged to Mattie. For example, today Peter innocently mentioned Speedy Red, which is sitting outside on our deck. Taking up a third of the deck space. Peter asked me who we should donate this battery operated car to. At which point I quickly responded, "to nobody." Speedy Red is important to me, and at the moment isn't leaving our home. However, over dinner, I told Peter that there are many things piled up that Mattie never got a chance to play with. These are the things I am willing to entertain donating to children who need these things. Many of these items I would like to donate to Georgetown University Hospital, because I know the excitement that new toys can bring to children who spend their days and nights in the hospital. Mattie looked forward to every new toy delivery that Linda (Mattie's childlife specialist) received. I would like to bring this happiness to other children who are sick. In fact, I am thinking of timing this donation around Mattie's birthday. Mattie was about happiness, and I think this seems like one meaningful way to celebrate and recognize Mattie's 8th birthday. 

Peter spent the day outside on our deck. Cleaning up our flower boxes and things, to prepare them to be planted in a few weeks. Several months ago, Peter planted crocus, daffodil, and tulip bulbs outside in our commons area. He got these bulbs a while ago so he and Mattie could plant them together, but naturally that did not happen. In Mattie's honor, Peter planted these flowers. With our recent warm days, these flowers are sprouting and blooming. They are a lovely sight to see, and Mattie would have been thrilled. These flowers are important to Peter, and he waters them often. He told me that yesterday he noticed a mother and her little girl walking over to the crocuses and admiring them. The little girl then decided to pick the crocus from the ground and take it with her. I asked Peter what his reaction to this was. At first, he said he was taken aback. But then smiled because if this flower made the little girl happy, then he was happy he planted it. It is funny after Mattie's death, Peter and I look at actions differently. In the past, we may have been upset with this child's actions, but now we appreciate it. This little girl was curious, found the flowers pretty, and wanted to capture that moment. I get that feeling now much better than I did prior to Mattie's cancer. The flower is not as important, as the feeling the flowers produce!

Later today, Peter was watering the flowers. I was inside, but I could see a little boy, maybe about 4, with his father outside on a balcony watching Peter water. The little boy started yelling down at Peter. He wanted to know what Peter was doing. The boy's father repremanded him for asking such a question. But Peter said the question was a good one, and explained to the little boy the importance of watering the flowers. I have missed the sound of children, and their questions, and hearing this little boy talking today took me back to my times with Mattie.

Peter told me that he has been hearing Mattie's wind chimes twinkling all day while he was outside. Peter said that when he walked back inside, right in the middle of the hallway floor was a plastic pop it. We have NO idea where this pop it came from. We opened no packages today. The only conclusion we came to was this was a sign from Mattie, the king of the pop its! I would like to think on some level Mattie was with us, as Peter started the spring cleaning out process.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I certainly hope you are feeling better today. As I was practicing this morning a thought came to me that learning to live with grief is like learning to drive. At first you are entirely focused on the immediate (like the front end of the car) but you find you need to start to lift your gaze further out and keep your focus further down the road. Eventually you begin to watch quite a distance out, but sometimes that means you hit a pothole (something unexpected that brings acute grief anew), but if you spend all your time watching for these you can't drive (or function at all in the world). Somehow, eventually you figure out how to drive with your attention on multiple things while accepting that you will occasionally not see some obstacle in time to completely avoid it. And so it is with learning to live with grief I think. Eventually you can find a direction to aim your life, you can even begin planning to get there, but you have to accept that sometimes you will stumble into things that will bring you back to your loss and the only way to avoid them is to do nothing at all. Unfortunately, even that will not insulate you from grief, so when you can, you should try to engage with others, remembering the need for balance and rest. As always, I hold you gently in my thoughts."