Friday, March 5, 2010

Friday, March 5, 2010

Tonight's picture was taken in May of 2007 at the Andrew's Air Force Base Open House. This air force base opens their doors to the public once a year, and at the show Mattie got to see the Thunderbirds perform as well as walk aboard various air force planes. Mattie had a great time at this event, and loved running around and exploring the aircrafts. He also got to meet many air force personnel that day and he thought the whole experience was terrific.

Poem of the day: Thank You Friend by Randah R. Hamadeh

Thank you friend for always being there for me

And seeing what I saw and did not see

I am blessed to have you by my side

At good times, bad times, and when I lost my child

You have accepted the person I became

And realized that your friend can not be the same!
Friend, you have never asked me to change
And never considered any of my behaviors strange

You have decided to walk with me at my pace

And understood that no one can take Samar’s place

You respected my daily sorrow and tears

And appreciated my strength in facing my loss and fears

You wished me patience and serenity of the soul

And prayed that God helps me survive living with my hole
You even joined me in appreciating the sunrise
This significant act dear friend is not a surprise!
Although the burden you carry is not small
You never shy away from listening to me, not at all
Thank you for always tolerating my talk
About my beloved Samar, since the days she started to walk
Although seeing me immersed in grief is painful to you
You are always there for me, the friend I knew
With you dear friend, I will always feel free
To talk about my loss at any stage or degree
I am grateful that you do not push me to move along
And acknowledge my pain and listen to my song
Thank you dear friend for all the support
And God bless you, for the comfort you brought

I have been under the weather thanks to a tetanus injection I received on Wednesday. I continue to have a fever today, and my arm is incredibly painful. In fact, my arm is swollen by the site of the injection. Under any other circumstance this would frighten me, but because this has happened to me in the past with each tetanus shot I have received, I know I just have to ride out the reaction.

I spent the day with Mary (Ann's mom). Mary was discharged from the rehabilitation facility she was in for the past month and moved into a new assisted living facility today. Ann and I had two very full car loads of furniture and other items to transport, which went off without a hitch. We spent a good portion of the day getting Mary acclimated to her new surroundings and of course unpacking and arranging her room. With all new places, there is always an adjustment, but I would have to say the family who runs the facility tried VERY hard to make Mary happy. That was a good first sign. After lunch Mary wanted to go back to her room. I think she has been conditioned to do this based on the previous facilities she has living in. However, after a period of time in her room, where she was helping me pick out pictures to hang up on the wall, she then decided she wanted to be a part of the action in the house. So she was brave enough to venture out of her room, and join the others. She got to listen to the piano, hear some singing, and then we read her newspaper together in the living room. Going into any new surrounding is challenging, but Mary handled it very well. But I attribute that greatly to having Ann and I with her throughout the day. There is comfort in knowing that those who advocate for you are around, especially in the beginning. I was happy I could be there today to help, and I always find it fun to turn chaos into something livable. Hopefully Mary is happy with how her room was transformed.

It is a short blog tonight because I am tired and need to rest, but when I got home this evening, Ann let me know that Katie won a costume contest at school. Some of you may remember back in early February, I helped Katie design a Greek goddess (Athena) costume. Katie and I discussed which goddess to portray. I have always been a fan of mythology, so this was actually a fun project for me. I distinctly remember Katie was interested in two different goddesses at the time, but was unsure of which one to be. As soon as she mentioned Athena as one of her choices, I said that is who she should be. Athena is always pictured with books, after all she is the goddess of wisdom. I assure you, Katie is the modern day Athena, and loves books just as much. I was thrilled to hear that our costume won and felt a great sense of satisfaction in helping Katie. I included a picture of Katie in the costume. Try to imagine the costume without the striped shirt, and Katie holding a book and a helmet. The costume was made out of a blue bed sheet, that was starched and pressed. Then I sewed gold trim around the neck line and at the base of the dress and velcroed the sides of the sheet together to finish off the dress. I need to celebrate these small accomplishments because as I said to Peter tonight, I still wake up each day wondering whether it is worth getting out of bed in the morning.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I know yesterday was really hard for you. Some days are worse than others. When you are ill it is just one more thing that saps your energy and makes it difficult to get through the day. I know yesterday had to be difficult for Ann and Mary as well; going through all those things and touching the memories they brought forth, I am sure they were very grateful for your help. Doing all that you had to be thinking what it would be like to go through Mattie's things; what an impossible task at this point in your life. When you decide it is time to do some of that, I hope you have someone like Ann to stand beside you as you did for her yesterday. I know you would have liked to be there at the book signing and it was lovely that Peter could attend and have the opportunity to thank Laurie for her support. I am delighted that the foundation is already starting to help those families struggling with cancer; the gift of the printer is much appreciated I am sure. I do hope you feel better today and that as I wait for the sun to break through the clouds, may a ray of hope find it's way into your heart as well. I hold you gently in my thoughts."
 
The second message is from one of Mattie's favorite HEM/ONC nurses, Katie (aka: Dorothy - for her beautiful red shoes). Katie wrote, "Yesterday was my day off but I heard that Peter was here in the clinic for the book signing. I'm sorry that you were under the weather and I'm sorry I missed Peter. I would have loved to have seen you all. I really miss you guys. I thought about you all on Tuesday. Has it really been 6 months? I put that bracelet that we made together with the bead lady on the gear shift in my car so that I see it every day. I fingered the little bird bead and said hello to Mattie just this morning. I hope you feel the prayers that are being sent your way and I hope you are beginning to feel some healing."

Thursday, March 4, 2010

Thursday, March 4, 2010

Tonight's picture was taken in May of 2007. Here you see Super Mattie helping me with the laundry. In our complex, the laundry facilities are on a different floor. Mattie helped me with laundry from the moment he was born. It became an adventure in a way, and his transportation to the laundry room changed as he aged. Initially he may have gone down to do laundry room in a baby carrier (which he HATED!) or his stroller, and as he got older, he would bicycle to the room with me while I would be following behind with the laundry cart. He was my laundry buddy and he never complained about having to tag along with me. Laundry now of course is a much more solemn and quiet experience for me.

Poem of the day: Reality by Lana Golembeski

Reality hits hard and has no remorse
It hits you in your gut
And you feel pain you never thought you could handle
It overwhelms you and knocks you off of your feet
You ask "Why?"
Even though you know there are no answers.
Reality kicks you when you are down
You keep hoping that things really are not what they are
And then you realize…yet again. The truth of what happened
There is no escape
There is no place to hide
Reality finds you in the hidden recesses of your heart
It has no hesitations
It spares you no pain
It hits you hard
In your gut
It makes you realize you have lost everything that ever mattered to you
And yet, again, you ask "why?"
There are no answers.
Reality rears its ugly head
And it spits at you
It laughs at you
It squeezes your heart
It forces tears from your eyes
And it never ends
It fights Hope
Head on
It twists Hope's arm
Reality does not want Hope to win
They are at constant odds with each other
Hope fights to win
But Hope has eternity on her side
Hope is stronger than reality
In the end, Hope will be the victor
Faith accompanies Hope. And arms Hope
With the power to win.
Where is my Hope?
I search endlessly
Only to find empty arms and an empty heart
But I know in my heart
That Hope will always stand by my side
And will be the victor!

The reality of losing Mattie, as the poem expresses, "finds you in the hidden recesses of your heart, it has no hesitations, it spares you no pain, it hits you hard. Reality doesn't want hope to win." Hope is a word that I wore around my neck, thanks to Alison's necklace, for over a year. Hope is a crucial factor in our lives, in fact, without hope it becomes very hard to live, or even want to live. Under the worst of circumstances with Mattie's cancer, when things looked absolutely grim, we clung to the hope that the cancer was going to be caught, removed, and treated. We had to think this way, otherwise it would have been impossible to make it through three major surgeries and a year's worth of very powerful chemotherapy treatments. Not to mention intense physical therapy and experimental treatments along the way. With that said however, when Mattie died, our flame of hope also died. Peter and I battle each day with the memories of Mattie's cancer, with what we witnessed and survived, and naturally our future without our child. Everything we came to understand about life no longer has meaning or makes sense. So the question becomes how do you regain hope? Is such a thing possible? It is in theory, but definitely a much harder concept to embrace from our perspective.


Yesterday I had the pleasure of having a very thorough physical exam, and in the process my doctor had me get a tetanus shot. Since I was a child, I have always disliked tetanus shots because they make me physically sick. I always get a fever and I always have significant arm pain at the injection sight. She assured me I would have no reaction! She was wrong. I had a raging 101 fever today and felt very sore from this vaccine.

I spent part of the day helping Ann pack up her mother's things at Sunrise (the assisted living facility Mary has lived in for two years now). Mary is moving to a family run assisted living facility which has fewer residents and more individualized care and attention. Mary transitions to this new place tomorrow. Packing up Mary's things is not an easy task, because it means one has to comb through her belongings and sort out things that really should be packed and those things that need to be donated. As we were going through some of Ann's dad's clothing, I found it fascinating to see what he kept in the pockets of his jackets. He carried with him meaningful things, like his granddaughter's first communion church program, or remembrance cards of his son who died of cancer. In a way, searching through someone's pockets reveals a lot about them, and in Sully's (Ann's dad) case it was clear that family was very important to him. His pockets were reflective of his life, which I fortunately had the pleasure of getting to know him the year before he died. As I was sifting through things in Mary's room, I could only imagine how Ann was dealing with all of this, and typically I would just ask Ann, but I wasn't 100% today, and I also admit I did not want to go there. Maybe I did not want to hear her answer! Mainly because I can only imagine myself going through Mattie's things, a job I perceive as overwhelming, that I still refuse to do this, that on some level I instinctually know how Ann must be feeling. I think also being allowed to go through someone's possessions is an honor. I am very attached to things, because things remind me of people, of our times together, and things help to create memories. Going through Mary's room and helping Ann in this way was for me significant. Experiencing these hard moments in life further connects us as friends, and clearly experiencing the death of Mattie and Sully has been life altering for Ann and I, but with that said today, I felt our friendship deepen because I was entrusted with Mary's possessions.

Dr. Aziza Shad, the director of the Georgetown Hospital Pediatric Oncology program, and a Mattie Miracle Cancer Foundation board member, invited Peter and I to a book signing at the Hospital tonight. I was under the weather so unfortunately could not attend, but I am so happy Peter did. He met some wonderful families, two of whom also started a foundation in the memory of their child. One of the Foundation's is entitled, Hope for Henry. This foundation gave Mattie many, many gifts while he was a patient at Georgetown, and the executive director of the foundation is Henry's mom, Laurie Strongin. Laurie wrote a book, "Saving Henry, A Mother's Journey." Peter bought the book and spoke to Laurie as she was signing it. Laurie encouraged us to network with her and Peter had the opportunity to personally thank her for all the gifts her Foundation offered to Mattie. Peter told me about all the staff in attendance at the event. I learned that Jenny, one of Mattie's art therapists, is leaving Georgetown tomorrow. She is moving to Oregon with her family. She will be missed tremendously, and I can't imagine the clinic without her presence. I learned of another family who we loved, whose daughter is back in the hospital because her cancer has returned. I was SO upset to hear this. This family was very supportive of us while we were at Georgetown, and I distinctly remember this young girl's dad hugging me during very bad moments and also telling me what a great job I was doing. These are moments I will never forget because I really needed the support.

The Mattie Miracle Cancer Foundation donated a printer to the childlife playroom in the fall. We put a label on the printer about the Foundation, and the label also has a picture of Mattie on it. Apparently I heard tonight that the printer was a very appreciated addition to the room, which has two computers, but no printer. This made me very happy to hear that something we provided is making parents' lives 1/16th better! Nonetheless, as Peter was talking about Georgetown this evening and its staff, I brought me to tears. I miss this community greatly, because they supported me through various moments of hell. Georgetown is a very emotionally laden place for me, and just thinking about the nurses and other support staff there stops me in my tracks, and moves me to tears. This should tell you a lot about the importance of these people in my life.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As you said, these life decisions are very difficult; thank goodness Mary has Ann to help her and guide her in this process. Even now, I would be reluctant to make such a decision on my own. And I know that Ann is grateful for your help with this whole process as well. I know that you are struggling; grief is a very poor companion, ever present but definitely not what you would choose if the choice were yours to make. We would all love to change the situation for you and Peter if we could; turn back the clock and unmake what has happened but since no one can do that, allow us all to support you as we can. There is a synergy in companionship that is more than just what each person brings; let that energy help carry you through the times when faith is hard to find. I feel this myself as I practice with others versus alone; sometimes the energy carries me to places I could not reach on my own. I hold you gently in my heart and send my positive energy your way today."

Wednesday, March 3, 2010

Wednesday, March 3, 2010

Peter snapped tonight's picture in May of 2007. It was Mother's day morning, and Mattie gave me the best gift of the day. His true love and affection! Typically each night I describe the picture for you in detail, but in this case, I think the picture speaks for itself!


Poem of the day: The Dress of Grief by Lana Golembeski

She wears her grief like an old worn out dress.
It hangs heavily on her shoulders.
It is shabby and ugly and carries anger and denial with it.
Sometimes she thinks she has shed her grief.
She feels free and sees some sunlight in her dreary world.
But then grief commands her to put it back on.
And then her pain begins all over again.
Sometimes grief comes in a different form.
Sometimes it comes as anger and fills her from the inside.
It burns her stomach and throat like a hot cup of coffee.
It is bitter and distasteful.
But it is all she can think about as it grows and grows.
She thinks it is well hidden but it is visible to others.
It lives in the face she wears behind that mask…
The mask that refuses to hide all that lies within her.
She finds relief in her denial.
She hides that old dress in the closet.
She puts on a pretty new one and pretends that the grief is all gone.
She is done with grief.
But grief doesn’t give up so easily.
She opens that closet door to find another new dress.
But grief is hanging there; front and center,
Imploring her to put it back on.
She has no choice but to obey.
Grief is not done with her yet.
It takes strength and courage to live with grief.
Grief is ugly and mean.
It eats at the very depths of your soul and it is relentless.
We only think it relents.
But it is always present.
It disguises itself in new toys and then it emerges and
Laughs at us for being so naïve to think that we defeated grief.
Just as grief thinks it has won the battle
It realizes that it has only given us strength.
Grief has given us the power to defeat it.
Grief has made us stronger and
It has made us open our eyes to the blessings in our life.
We appreciate the goodness and gifts that we so long took for granted.
It has molded us into women who can fight any battle.
We have been armed with the armor of grief.
So we laugh at grief.
We embrace it!
We take out that old shabby dress and we wear it with pride.
For we have defeated grief!
We have discovered hope and the possibility of joy again in our lives.
And our children smile from heaven watching our growth;
Knowing that we will be okay.
They know it will never be the same
But they are proud that we have chosen to live our lives in that old dress
And that we wear it as a medal of honor.
For it is exactly that.
We wear that old dress with honor
And with love.


Charlie sent me this poem today, and the three lines about grief that resonate with me are: "It has made us open our eyes to the blessings in our life. We appreciate the goodness and gifts that we so long took for granted. It has molded us into women who can fight any battle." On any given day and at any point during the day, I will freely admit to you that I HATE GRIEF! I would be happy if I never knew about it, and most definitely would be elated if I did not have to use the word in conjunction with the death of Mattie. However, I wasn't blessed with this good fortune. Instead, I believe God is testing me in the most ultimate manner. The ironic part is through this unparalleled sadness, I also see things about life MUCH clearer. My perspective on life has changed, the things that I primarily value have changed, and in this process I have also become much more vocal. I say exactly what I mean now, without sugar coating it for the most part. When you have lost your child, you gain certain insights that set you free. Seems like a high price to pay for this level of mental and emotional freedom. I rather have Mattie back and be oblivious.

I woke up this morning truly bothered. I haven't slept well in several days now, but some how I slept long enough last night to have a dream. In my dream I am lost, lost on something that looked like a college campus. The feelings of being scared, isolated, and confused were so vivid in the dream, that I remembered them long after I awoke. I used my cell phone in my dream to call Peter, and was desperately trying to find him, and couldn't. Toward the end of my dream, I did finally meet up with Peter, and he was wearing the most bizarre outfit, a lime green shirt, hawaiian flower printed fatigue pants, and a purple tie. I have been wondering about this dream all day long, and partly I attribute it to my intense fear of losing those closest to me. After all, if I could lose my seven year old son, anything is physically possible.
  
Ann and I had the adventure of transporting Mary in the car to visit a new assisted living facility. The transfer of Mary from a wheelchair to Ann's car, takes a herculean feat. But the effort was worth the ultimate goal, which was for Mary to physically see another living arrangement option. This facility was very welcoming of Mary, and Mary met every aide, and had a chance to talk to them, and to ask questions. After the visit however, making such an important living decision was hard for Mary. She had trouble figuring out what to do and really needs Ann's guidance on this. The whole dialogue process with Mary was interesting because as I sat back, my initial question was what on earth do older adults do if they do not have a child who can help them effectively make such an important decision? Or I should say, to make a decision that is in the older adult's best interest. As I say time and time again, Mary is one of the lucky older adults in this country because she has a daughter who cares deeply for her care. Mary is in the minority and I say this with confidence after spending a great deal of time over the years working with older adults and their families.

Peter and I greatly appreciate the input many of you are sending to us regarding ways to promote the Foundation, as well as increasing awareness of pediatric cancer. Thank you for sharing in this vital cause with us!


I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As I read your blog this morning, I thought, 25 weeks, 6 months, a half year...with each thought it was even more impossible. How could this be? It seems both yesterday and forever since his diagnosis and then his death. What contradictions and yet, somehow that's how it feels. I love that Jocelyn has made Mattie a part of her wedding and her memories of that day. How wonderful that all those people will now know about Mattie and his fight and perhaps some of them will even become supporters of the Mattie Miracle Foundation. I am sure Ann appreciates your help with her children; I have always known how willing you are to help a friend who needs assistance. May all of those good deeds come back to support you in your time of need. I hold you gently in my thoughts."

Tuesday, March 2, 2010

Tuesday, March 2, 2010 -- Mattie died 25 weeks ago today.

Tonight's picture was taken in June 2007. Mattie had just completed preschool and was going to begin kindergarten in the Fall. We took Mattie to Dutch Wonderland (a theme park) in Pennsylvania for Memorial day 2007. This was Mattie's first roller coaster ride, and he was all smiles. It turns out Mattie LOVED roller coasters. The wilder the better. I will never forget this day at the theme park. I was nervous for Mattie about him riding a roller coaster, since I am deathly afraid of them, but Mattie was all about adventure. He rode the roller coaster at least five times that day. I also recall that I had an argument with a family who was waiting in line to ride the roller coaster. This family had three children, and one boy who was 12. This boy did not want to go on the roller coaster. He told him mom he did not like them, and he started to cry. He was afraid. Instead of his mom understanding this fear, she started screaming at him. She wanted to know what 12 year old boy was afraid of roller coasters! She was loud enough for all of us to hear her, and naturally the boy was only more mortified by her screaming. I couldn't take what I was hearing so I went over to the mother and tried to help her understand her son's perspective but instead she became hostile with me, until I called the park police. Needless to say, that boy did not go on the roller coaster that day.

Poem of the day: A Mother Remembers by Kim Hodne

At first, the fear of forgetting you
Consumed my thoughts
Now I know it’s not possible
For a mother to ever forget her child
Would the loss of you be all that’s left me?
Outweighing the joyful times
No longer a mother
Being there for you
But slowly the happy memories are stronger
With the passage of time
Flooding in images of you
At all different ages
I hear your voice, your laugh,
Feel your strong hug
See those smiling eyes
Woven into my heart like threads in a tapestry
Perhaps this is by design
The good memories start to fill in
That emptiness of my heart
Softening the edges of sadness
In dreams I see you somewhere close by
As if to reassure…I’m okay, mom
The fear is gone now and I know
You’ll forever be with me

It appears to be another Tuesday, which naturally means that Mattie has been gone from our lives yet another week. Twenty-five weeks to be exact. My mom sent me an e-mail today, and within the message was tonight's picture. I must have given her this picture years ago, and when I saw Mattie on the roller coaster it brought me back in time. It is hard to imagine that only three years ago Mattie rode his first roller coaster and was full of life and adventure. I would never have guessed Mattie was going to become so sick and die a short time later. I suppose when you are raising your children you don't think in these terms, mainly because our children are supposed to outlast us. But Mattie's death has been a reality check for me, and not necessarily a healthy one.

I received a beautiful e-mail today from Jocelyn. Many of my readers may remember Jocelyn. She was one of Mattie's close buddies at Georgetown, and is an osteosarcoma cancer survivor. Jocelyn is getting married and would like to use Mattie's wristbands as wedding favors. I was deeply touched, and of course will never forget Mattie's love for Jocelyn. She was an excellent role model for Mattie, and he saw that it was possible to live your life with Osteosarcoma and be happy. For all the times Jocelyn spent with Mattie and us, we are forever thankful. Which is why one of the presents we are giving Jocelyn is 90 wristbands for her wedding.

I spent a good part of today at Ann's house. One of her children was sick and I was happy to help out. I continue to be making progress on Foundation tasks, and Ann and I continued our dialogue about the March for a Miracle. One thing is quite clear, and that is we are grateful to our readers and supporters. It is through all of you that we are getting ideas for corporate sponsors for the Foundation and the March, as well as ideas for social networking to get the message out about the March. I welcome all input and connections, and it is thanks to our wonderful Team Mattie, that I made a great connection with a person who could potentially speak at our opening ceremony at the March. I will keep you posted as things solidify.

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, "Today, as my mind thinks of Mattie, I look back on my visits with you and wish I had spent more time in your room...more time cheering Mattie on as he race around the 5th floor...more time watching him construct his lego masterpieces. Although I know you feel this too, I wanted you to know the connection that Mattie created with someone and actually many someones, who at one point were perfect strangers to you. This connection is just part of his power; another of his gifts. Thinking of you, this Tuesday and everyday."

The second message is from my friend, Charlie. Charlie wrote, "I think we forget how important it is for people to be able to make decisions about their own lives. As people get older, frailer and physically slower, we tend to assume they are becoming more childlike and step in and make decisions for them. This is wrong; if they are able, they should be part of the decision making process and once again, thank you for your advocacy on behalf of others and for reminding the rest of us about what is important. I hope Mary and Ann are able to come to a decision together about what will be a better place for Mary to live. It was lovely to read about your visit with Christine; I know Campbell will always remember Mattie. I say that because I had a childhood friend who died when I was six and I never forgot her so I know that children's memories and emotions are much more significant than we adults are often willing to admit. Your friend Nancy's email brought up an interesting point about grieving in Judaism, that difference between what one is obligated to do for a parent and what one is obligated to do for anyone else. I've read a lot of rabbinical thoughts on this and none of them are really clear to me so I tend to side with Nancy and say that if you feel that the mourning/remembering/honoring the dead is appropriate for longer than a month, that is what you should do. I think that applies to non Jews as well; you have to do what feels right in your heart. I hold you gently in my thoughts."
 
The third message is from my friend and colleague, Nancy. Nancy wrote, "I just read yesterday's blog. The poem that Charlie created was so genuine. It was a tribute to the entire Brown family and especially to you. She is a great friend. I find her messages powerful as well. I applaud Ann and you in trying to help Mary make a decision about her living quarters without trying to sway her one way or the other. You are so correct when you talk about older adults, especially our parents or friend's parents, needing some control over their destiny when they are getting frail. Mary and Ann are lucky to have you in their corner as I know you feel about them. Your lunch with your friend sounded so comforting. I, too, have been astounded by the depth of children's feelings in time of struggle and pain. They truly are teachers for the adults in their lives if one can listen. The old adage: "Children should be seen and not heard," I think I have it right. It always disturbed me as I've learned volumes from my children over the years. This is another way for you to give to others by advocating for families in health as well as sickness. As I look out my bedroom window at Manhattan and the beautiful sunny day, I hope that you are having a similar peaceful moment. Have a beautiful day. With friendship and love."

Monday, March 1, 2010

Monday, March 1, 2010

Tonight's picture was taken in March 2009, in the Georgetown Hospital childlife playroom. Mattie was trying out the new Wii Fit equipment that his preschool teacher, Lana, donated to the childlife playroom. Mattie was a natural at yoga! Surgeries and all! In fact, he did a better job than most of the other kids who attempted to do this, and these other children did not have limb salvaging surgeries like Mattie. Mattie was focused and determined, not unlike how he battled cancer.

Poem of the day: Six months by Charlie Brown

My heart is not broken
It is shattered
Into a million pieces
And more
Never to be whole again
Sometimes all I can see
Are your sparkling brown eyes
All I can hear
Is your laughter
Then I wake
To the silence of a house
Without its beloved boy
It's been six months
Or was it yesterday
That I last heard
Your little voice say
"I love you, Mom"
Does it get better?
They say it does--
But for me,
It is too soon to know
So I wait, dreading every morning
And especially every weekend
Without the comfort of your presence.
I miss you!

I spent a good portion of my day with Mary, Ann's mom. Mary is being discharged on Friday from the rehabilitation center she has been in for the last couple of weeks. However, the dilemma becomes which assisted living facility to move her into, the one she has been in prior to her rehab admit, or the option of a totally different facility. This is a very complicated decision and naturally any changes are daunting for an older adult. Mary needs a great deal of reassurance and support as she makes this transition. Mary asked me this afternoon to choose where she should live and though I have some perspective on all of this, I realize it is not appropriate for me to sway her decision. Instead, I tried to be objective about the two facilities she has to select from, and I tried to help her see the pros and cons of both. Mary will be visiting the new facility on Wednesday, and though taking Mary on this little visit is a MAJOR feat for Ann, I think ultimately this will make Mary feel empowered about her choice in where she lives. We all feel the need to have some control over our lives, some independence. Though Mary physically has very little independence, including Mary in the decision making process seems like a very wise and psychologically healthy thing to do.

I had the opportunity to meet my friend Christine (Campbell's mom) for lunch today. As some of you may recall, Campbell and Mattie were very close kindergarten buddies. As Mattie and Campbell became friends on the playground, so did Christine and I. In fact, SSSAS's (Mattie's school) playground has special meaning to me. Because on this playground I met a good friend, and I had the wonderful opportunity to watch Mattie and Campbell's friendship grow. It grew naturally without intervention, without our direction and guidance. It wasn't structured like so many activites are now a days for our children. Their meeting times were simple and yet at the same time so beautiful. Beautiful because they used their creativity to design elaborate play schemes and they could do this for hours! You would be amazed with what they could do with found objects on the grounds of the campus, for example, bottle caps became gold. Deep down, Christine and I share this common value... we believe children need unstructured time, the time to freely express themselves. We both long for a simpler life, and somehow watching Mattie and Campbell play outside on the playground (and you should note they were usually alone by this point, because most of the other children had been picked up by their families and were headed to the next activity of the day) helped solidify this value.

Christine and I had a fun time chatting about a whole bunch of different things. However, one thing is very clear, Mattie's memory is alive and well in Christine's household. Campbell reflects on the loss of Mattie, and he hasn't forgotten his friend or the special connection they had. Actually listening to how Mattie's death has affected his close friends gives me pause. It gives me pause because we adults greatly undervalue the depths of emotions young children are capable of having. If I had any doubts about this, I would say Mattie's friends have enlightened me. As Christine said today, "Mattie has become part of my conscious thought process in daily life." That line stuck with me, and as I told her I am honored deeply.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I was glad to hear that the vision for the foundation continues to move forward. I think what you are doing is very important. As I take calls at Haven, I hear how fragile the net of support is for both parents and young siblings of children who have died from cancer. If you can find a way to strengthen even one link in that net, you will be doing a great service. It sounds like you and Amany had a good visit but as you said, you have to re-engage in small doses otherwise it is all overwhelming. Be patient, take things at your own pace. I know it is hard to do; I was given a specific posture to practice daily and told I would see results in a year ("a year!!!" is what I thought) and then I realized the year would pass whether or not I did it, so I could do it and be closer to my goal, or not and be no further than now, or perhaps in a worse place. So from someone who sees an elusive goal, to you who also cannot see your goal, let us both work each day as we can and let others support us as they are able. I hold you gently in my thoughts."
 
The second message is from my friend and colleague, Nancy. Nancy wrote, "I don't know what happened this morning, but, I just finished reading yesterday's blog. I know that you said this poem was sent by your Mom and it made me think of my parents and I cried. I hope that it is ok to tell you just how much this poem touched me. It brought me right back to the day my father died and the 10 days of being with my Mom while she was dying. Vicki, I don't think I have ever felt closer to you, in your grief, than today. On a more positive note, I was glad to read of your day with Peter. I think having something so special and important to concentrate on is a supreme way to honor Mattie and your cause. The Foundation will have a purpose unlike others that I know of as it will support the whole family during their fight with this overwhelming disease. I know that the cruise was difficult watching families interact and be together while all of you were focused on Mattie not being with you, in person. I find it interesting and special that you decided to write the blog until the anniversary of Mattie's death. In Judaism, we say the mourner's prayer for our parents for 11 months. For others in our immediate family, we have to say it for just 30 days. This never made sense to me as how does one assign such a short period of time to a missed loved one. The way I deal with this is it is a mitzvah to say the Kaddish every day if one chooses. I guess I see the blog as your daily prayer to Mattie. It is a beautiful thought. As always, I hold you in my thoughts and heart. Please take good care of yourself and say hello to Peter for me. I hope that we will meet one of these days. With love and a hug."

Sunday, February 28, 2010

Sunday, February 28, 2010

Tonight's picture was taken in March 2009. Mattie loved this rainbow balloon that Linda (Mattie's childlife specialist) gave him in celebration of the Hospital's opening party for the children's art gallery. Rainbow's are very symbolic and this balloon seemed to signal a ray of hope in our lives. Mattie played with that balloon quite a bit when he was home, and I am so happy I captured his beautiful smile as he was sitting under that rainbow. 

Poem of the day: When I Close My Eyes by Audrey Szabo

When I close my eyes, I can see you so clearly
Reliving the memories of you is second nature now
All I do is search my heart and
Carefully chose the memory for the day
These memories are both a saving grace and
Everlasting reminder of the stabbing numbness within my heart
Memories of the innocence of your eyes shining so brightly
Memories of the sound of your laughter so pure
Memories of the mere miracle of you
Memories of you the most important part of my life
No one can see you the way I can, when I close my eyes
When I close my eyes, I can see you so clearly
I can see the wind ruffling your hair
I can see you playing in the rain
I can see you peacefully floating on water without a care in the world
I can see you smile when a wish spoken by you has come true
No one can see you the way I can, when I close my eyes
When I close my eyes, I can see you so clearly BUT
I cannot hold you in my arms
I cannot surprise you with kisses on your cheek
I cannot tenderly touch your face
Resenting these can not’s because
They are more than I can handle but
Without these memories I cannot be with you
So with my love, hopes, and dreams
I will not be lonely for you, for
When I close my eyes, I see you

Peter and I worked on Mattie Miracle Cancer Foundation (MMCF) tasks for most of the day. At breakfast, Peter explained to me how important it is to have our "asks" in writing. Naturally I had no idea what he was talking about at first. MMCF is an official charitable organization, and as such, we can begin to apply for grants as well as register our website on other electronic sites that promote non-profit groups. Corporations and other groups will be inspired to support us if we have a concrete plan of objectives and goals. So I spent the day brainstorming my vision for MMCF, a vision that I hope will inspire the support that is needed to adequately address a very vital and imperative cause.... finding more effective treatments for Osteosarcoma and assisting patients and their families cope with the psychosocial impact of pediatric cancer.  

I have felt tremendous guilt for not being more actively involved in the Foundation. However, stepping back, I realize that I will be no use to the Foundation, if I don't address my own issues and needs. Despite my feelings of guilt, I have been giving the Foundation great thought, and when Peter asked me to put some of my goals in writing today, I did not have very deep to search. I have five very concrete "asks" that have been whirling around in my head. I felt very productive actually putting thoughts into actual words.

Peter and I also discussed the upcoming walk on May 23, and our vision for this event. It is daunting to get started on these plans, but this is something that I really wanted to accomplish this year. Fortunately Peter and I have Ann and a great planning committee to make this a reality. A walk is a wonderful way to keep Mattie's memory alive, to celebrate our osteosarcoma and other pediatric cancer survivors that we know, and to continue to educate the public about osteosarcoma. A disease that will always be a part of Peter and I.

This evening I had the opportunity to have dinner with a close friend. Amany and I have known each other for over 15 years, and we survived a doctoral program together. As a result of Mattie's death, I shut out many people I was close to. I believe this happens for various reasons, but mainly because I needed to protect myself from dealing with emotions and feelings I was not ready to handle. It will be a very slow process for me as I begin to re-engage with others, but I have been through a terrible trauma and loss, and I can only do as much as I can tolerate and bear in any given week. Amany and I discussed the impact of Mattie's loss on my life. Of course listening to this is not easy, but not only is Amany my friend, but she was trained as a grief counselor. So sitting in pain is not something novel to her, yet I am aware of the fact that it is much harder to see someone you care about in this position. I do see that even though Mattie has been gone for six months, I haven't grieved for six months. As some of you may remember, I was numb for about the first four months or longer. So it is only now that I am letting my guard down and beginning to feel or accept the reality of the loss. So chronologically I am six months into this process, but emotionally this is like a new loss for me. This was an important concept for me to acknowledge. We also discussed why I continue to write the blog. I reflected on this while I was on vacation, but my main reason for writing the blog is not for others or even for myself really. I write the blog to keep Mattie's memory alive. Each day I share a picture, a story, or explore the impact of his death on me. All the while, my goal is to honor Mattie. He suffered so, and will forever be missed. Which is why I am committed to write this blog for at least a year. September 8, 2009 (Mattie's death) to September 8, 2010. Despite the fact that I am going through one of life's worst possible crises, I am very thankful to have people around me who want to help and support me through something that seems impossible.

I would like to end tonight's posting with a message from my friend, Charlie. Followed by a poem my mom sent me today. Charlie wrote, "Comedy is a fine line between things which you can relate to and things you cannot. Watch the audience in a comedy show and there is always someone not laughing when it seems everyone else is in hysterics. I am glad that most of the comedy the other night made you laugh; time for laughter is very important, especially now. I too saw the moon yesterday and my first thought was "Mattie Moon". I know after these couple of years that I will never see the moon again in quite the same way. It was nice to see the picture of Mattie with the cherry blossoms and I remember you blogging about that last year; I wonder what this year will bring with respect to the cherry blossom "show" as many of the trees were damaged by the winter storms. In spite of that they will bloom, scars and all. So too for you I think, you will find a way to bloom in spite of your emotional scars. I hold you gently in my thoughts."
 
My mom sent me this poem entitled, "The Cab Ride." I found it very moving, especially in light of the time I spend with Mary and her roommate, Florence. I definitely believe how you make other people feel is what is ultimately remembered about you. Not what you have said or accomplished in life!
----------------------------------------

The Cab Ride

I arrived at the address and honked the horn.
After waiting a few minutes
I walked to the
door and knocked.. 'Just a minute', answered a
frail, elderly voice. I could hear something
being dragged across the floor.

After a long pause, the door opened. A small woman in
her 90's stood before me. She was wearing a
print dress and a pillbox hat with a veil pinned
on it, like somebody out of a 1940's movie.

By her side was a small nylon
suitcase. The apartment looked as if no one had
lived in it for years. All the furniture was
covered with sheets.

There were no
clocks on the walls, no knickknacks or utensils
on the counters. In the corner was a cardboard
box filled with photos and glassware.

'Would you carry my bag
out to the car?' she said. I took the suitcase
to the cab, then returned to assist the woman.

She took my arm and we walked
slowly toward the curb.
She kept
thanking me for my kindness. 'It's nothing', I
told her.. 'I just try to treat my passengers
the way I would want my mother
treated'.

'Oh, you're such a good
boy', she said. When we got in the cab, she gave
me an address and then asked, 'Could you drive
through downtown?'

'It's not the
shortest way,' I answered quickly..
'Oh, I don't mind,' she
said. 'I'm in no hurry. I'm on my way to a
hospice'.

I looked in the rear-view
mirror. Her eyes were glistening. 'I don't have
any family left,' she continued in a soft
voice.. 'The doctor says I don't have very
long.' I quietly reached over and shut off the meter.

'What route would you like me
to take?' I asked.
For the next two
hours, we drove through the city. She showed me
the building where she had once worked as an
elevator operator.

We drove through the
neighborhood where she and her husband had lived
when they were newlyweds She had me pull up in
front of a furniture warehouse that had once
been a ballroom where she had gone dancing as a
girl.

Sometimes she'd ask me to slow
in front of a particular building or corner and
would sit staring into the darkness, saying nothing.

As the first hint of sun was
creasing the horizon, she suddenly said, 'I'm
tired. Let's go now'.

We drove in
silence to the address she had given me. It was
a low building, like a small convalescent home,
with a driveway that passed under a portico.

Two orderlies came out to
the cab as soon as we pulled up. They were
solicitous and intent, watching her every move.
They must have been expecting her.

I opened the trunk and took the small suitcase to
the door. The woman was already seated in a
wheelchair.

'How much do I owe you?'
she asked, reaching into her purse.

'Nothing,' I said
'You have to make a living,' she answered.
'There are other passengers,' I responded.

Almost without thinking, I bent and gave her a hug. She
held onto me tightly.
'You gave an
old woman a little moment of joy,' she said.
'Thank you.'

I squeezed her
hand, and then walked into the dim morning
light.. Behind me, a door shut. It was the sound
of the closing of a life..
I didn't pick up any more passengers that shift. I drove
aimlessly lost in thought. For the rest of that
day, I could hardly talk. What if that woman had
gotten an angry driver, or one who was impatient
to end his shift?

What if I had refused to take the run, or had honked
once, then driven away?

On a quick review, I don't think that I have done anything
more important in my life.
We're conditioned to think that our lives revolve
around great moments.
But great moments often catch us unaware-beautifully
wrapped in what others may consider a small one.

PEOPLE MAY NOT REMEMBER EXACTLY
WHAT YOU DID, OR WHAT YOU SAID ~BUT~THEY WILL
ALWAYS REMEMBER HOW YOU MADE THEM FEEL.