Saturday, February 27, 2010

Saturday, February 27, 2010

Tonight's picture was taken in March 2009. We took Mattie for a walk by the Tidal Basin in DC to view the beautiful cherry blossoms. I look at this picture now and it is hard to believe that we are approaching yet another Spring. It is freezing right now in Washington, DC, so it is hard for me to believe that in less than a month the cherry blossoms will be blooming. That alone is hard to come to grips with, but it is even harder for us to accept that we have gone through a Fall, Winter, and soon Spring without Mattie in our lives. As you can see in the picture, Mattie collected a branch from his walk. Mattie was a collector at heart and a sentimentalist. He loved to take a memento home with him from each of his walks.

Poem of the day: Oh the Lies I have Told by Lana Golembeski
No one knows the pain
That lies behind these smiling eyes
No one sees the tears that are
Buried deep within my heart.
Oh the lies I have told!
I am just fine I say.
When the truth is
I can hardly find my way.
While in my heart the pain
Grows and grows and grows
With the emptiness of loss
That no one really knows.
Over and over
They say time will always heal
When in fact,
The pain is still as real.
It feels like yesterday when I heard those awful words
"Today, we lost our little girl"
I will never be the same again
My life is all awhirl.
In timeless space,
My heart is forever broken
Aching from the pain
With words that are never spoken.
Oh, the lies I have told!
I am just fine I say
When the truth is
I cannot find my way.

Peter and I went to see Jerry Seinfeld last night perform at the Kennedy Center. Clearly this performance was almost sold out, and you should note that Seinfeld is SO popular in DC, that he performs two shows a night. While waiting for the show to begin, there was Frank Sinatra music playing in the background. Peter and I are fans of Sinatra music, and for some reason it is impossible for me to hear "New York, New York" and not smile.

There was a comedian who did a pre-show last night. This comedian was a riot. Mostly because he was talking about everyday things that we can all relate to.... such as the use of cell phones, shopping at Home Depot, and traveling on airplanes. However, he did a comic routine about movie theatre ticket collectors that was downright hysterical. He asked the audience why on earth movie theatres have someone to sell you a ticket, and then someone else inside the theatre collecting the ticket who actually tears it in half and gives you the torn stub back. He asked us how on earth a movie theatre employer interviews someone for this ticket tearing job. So he acted out such an interview for us. He pretended to walk into an employer's office, and explained how qualified he was for the ticket tearing job, and how enthusiastic he is, and then with his hands he pretends to throw confetti at the employer. His punch line was..... I think my resume speaks for itself! Meaning his ripped up resume is proof of his amazing qualifications! I am not doing this justice, but it was a riot!

Seinfeld's performance was true to his TV show. His comedy routine centers around nothing and everything. He did two routines that had me laughing. The first routine played on the obsession our US culture has with coffee, and going to coffee houses. The second routine was aimed right at me, people addicted to their Blackberries. He said you can always tell you are with someone who owns a Blackberry, because the person is multitasking, listening, and yet glancing down occasionally to check one's phone. His point was well taken! We have become a culture who is far more comfortable communicating through a text and e-mails messages, rather than face to face conversation. So there was a lot of truth in his jesting. Seinfeld did a whole segment on married versus single men. He explained that he is 55, has been married 10 years, and has three children. As he continued to talk about his children, this brought sadness to Peter and I, rather than laughter.

This is our first weekend home after our trip away. Weekends are AMAZINGLY challenging for Peter and I. It is during these times we feel most directionless, because naturally in the past, weekends were filled occupying Mattie. So needless to say it wasn't a good day for either of us, and I will spare you the details. The one bright spot was outside tonight there is an incredible moon, which caught my attention, and of course my heart as I reflect on my "Mattie Moon."

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I know that Ann is grateful that you are visiting Mary while she is gone and it is clear that Mary also values your visits. What you are doing for Florence to me goes even further above and beyond that; to show kindness to someone who is truly a stranger to you. In Judaism that is one of the highest forms of kindness and good deeds and I hope that eventually these kindnesses make their way back to you somehow. I am glad you and Peter are going out and I hope you had a good time last night and found something to laugh about in Jerry Seinfeld's routine. Sometimes life is so absurd, there is not much else one can do but laugh if you are not to spend all of your time in tears. As I practice today and work on my ever fragile balance I will send my energy to you in the hopes that for a space of time you find that balance in your life. I hold you gently in my thoughts."

Friday, February 26, 2010

Friday, February 26, 2010

Tonight's picture was taken in March of 2009. Mattie is in the hallway of the Pediatric Intensive Care Unit. He just completed a race with Meg (one of Mattie's favorite childlife interns, and his racing buddy!). Mattie used his walker, and literally walked the entire fifth floor of the Hospital! His prize for winning the race, was a gold medal, as you can see pictured around his neck. These racing moments were a riot to watch and participate in. Meg hammed it up, and really worked hard at encouraging Mattie to keep walking to beat her in the race. Naturally Mattie ALWAYS won, and in the process he was beaming and inspired to race more. My joke to Anna (Mattie's physical therapist) and Meg was that I was going to take them home with me because Mattie was far less inspired to move his body without their presence at home. 

Poem of the day: Memories by Lana Golembeski

All that remains are the memories
Of your laugh, your smile, and you.
Faded photographs remind me of happier times
I look at your pictures
I touch your face
Your hair
But it isn’t you.
Those are just pictures that bring back the
Memories
I can see your love of life
Your love of friends
Your love of living
In each picture of your life.
But those pictures end
Too soon for someone like you.
I long to touch your beautiful hair
To hear your wonderful laugh
To give you a big hug
To hear your stories of your life.
I want to take you shopping once again
And to lavish you with silly
and wonderful things.
I have no one to spoil anymore;
No one to call me “mom;”
No one to tell me that they love me.
And I long to hold you once again and
To whisper in your ears how much I love you…until the end of time.

The winds are absolutely horrible in DC today. So much so that even flights are being cancelled. Though I am not fond of the wind, the wind does produce one thing that I absolutely love. It brings to life Mattie's wind chimes. They were outside twinkling away, as if to be singing a message to us. I think even Patches misses Mattie. I have found her the last couple of days on top of Mattie's bed, sitting on a pile of his clothes. Typically (prior to Mattie's illness) Patches would go to Mattie's room, jump on his bureau and look out the window. But she is no longer interested in the windows, all she seems focused on is sitting vigil on Mattie's bed. I think animals are much smarter than we give them credit to be. Patches senses something is just not right in our home, and I believe she is sitting with Mattie's things to understand exactly what has happened to our family.

I went to visit Mary (Ann's mom) today. Ann is away on a Girl Scout skiing trip with her family, and when Ann goes away, I try to spend time with Mary. The image of Mary's roommate, Florence, has been bothering me since yesterday. Florence is very frail, has trouble breathing, and has NO family. No one ever visits her. So before I came to visit Mary, I went out to buy both of them hot soup, bread, and cookies. I was determined to get Florence to eat today, since she usually eats nothing that comes to her room on her food tray. Persistence does pay off. Florence ate everything I brought her and even Mary took notice of this, and seemed happy to see her roommate finally eating real food! It brought me great satisfaction to help Florence, and to let her know that someone out there cares about her.

I spent several hours with Mary and her assistant, Shayla. I did Mary's nails and shared with her my pictures from our Caribbean vacation. Later in the afternoon, Shayla asked to see pictures of Mattie, so I uploaded some pictures for both of them to see on my computer screen. As Shayla pointed out, Mattie looked healthy and happy, and from his pictures no one would have guessed he would have developed cancer and even worse, later died. I could see Mattie's pictures affected Shayla, and then Mary said to me, "I don't know how you live each day." Right! Mary is sharp and astute. This is a question Peter and I ask ourselves each day! The difference between Mary and other people in my life is that Mary has no problem stating the obvious, whereas others may be too frightened to state something so bold. Shayla then asked me how I became friends with Ann. As I explained to Mary and Shayla how Ann and I knew each other and how our friendship grew, I could see Mary beaming. Once a mom, always a mom. All moms like hearing positive and glowing things about their children. Mary was ALL smiles today, and it was very special to see!

Tonight, Peter and I are headed to the Kennedy Center to see Jerry Seinfeld. Ann gave us these tickets, and I suppose the goal is to get us to laugh and forget our problems for a few hours. I will let you know how successful Mr. Seinfeld was at achieving this goal!

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I think about aging a lot and how life changes as we get older. Like the subject of death, most of us avoid thinking about how our lives will be as they draw to a close, whether we will be well enough to take care of ourselves or need assistance; will we be alone or cared for? I took a workshop in "end of life" issues and people were asked how would you want to die and most said "no" to cancer or stroke which means that they would continue on to be much like Florence, fragile in old age until finally passing on. It used to be that people lived with their children or relatives in old age (although old age did not go as long) but now aging seniors are isolated from others who are younger (either their families or their communities) and they are dependent on the care (and sometimes kindness) of strangers. Not a happy thought. So given all that, Mary is very lucky to have Ann and you are incredibly kind to add your presence and concern to the care of these seniors at the facility. I know they welcome and appreciate your presence as it has to be terribly hard to be in this situation. I hope the many kindnesses that you do come to "balance" the scale as you continue to look for a way to live with your grief. I hold you gently in my thoughts."

Thursday, February 25, 2010

Thursday, February 25, 2010

Tonight's picture was taken in March 2009, at the opening party of Georgetown Hospital's Children art exhibit. Mattie and I both contributed to this show. It was at this show that Mattie displayed the Lego structure he built which depicted his vision of what a hospital should look like.

The picture on the right is Matttie's vision of what a children's hospital should look like. In Mattie's hospital, there would be an outdoor space for sick children to play. This space included trees, a fountain with a bird, a tree house, and a swing.The patient rooms in Mattie's hospital were spacious and had two levels. One level contained a bed, a desk, a CLOSET!!!!, and a computer, and the second level contained a private bathroom with an amazing shower. Mattie designed this for me in mind, because in the hospital, there were NO private showers. We shared a shower with the family in the adjacent hospital room.

Poem of the day: Lost in the Masquerade by Lana Golembeski

Every day I put on my mask.

I smile and laugh.

I act like nothing is wrong;

Like nothing happened.

You can’t see the hole in my heart

The brokenness of my soul.

It is hidden behind the mask.

I am lost in a masquerade.

I play the game

No one knows the pain

I endure each and every day

With a smile plastered on my face.

The mask hides it all.

I am lost in a masquerade.

I listen to stories of

Children

Grandchildren

Dreams I will never have.

Smiling, laughing

Oohing and aahing at the beautiful pictures

Of their family

With a heart that will always be broken.

It will never heal.

As I continue to be

Lost in a masquerade.

My mask is growing old

And I am so tired of putting on that fake face.

But no one wants to truly be present in my life.

To do that requires that they

Go on beyond my mask and they join in my masquerade.

They will feel the pain of a loss beyond words;

A loss that no one should ever have.

They will feel the daggers in my heart and

The whispers in my ears of all my failures.

Their eyes will shed the tears that I shed every day.

And they will feel their heart shattered into thousands of pieces;

Knowing it will never be put back together like it was.

They will feel the emptiness and loneliness of

Being lost in a masquerade.

So tomorrow comes

And I put on my mask once again

And I pretend that everything is finally okay.

But it is not okay.

It never will be okay.

I will forever be lost in my masquerade.

Charlie sent me this poem last night, and I have been reflecting on it since I received it. Lost in a masquerade says it all! I couldn't have expressed my feelings better. This is how I feel on any given day. The depths of loneliness, despair, and grief that Peter and I feel is overwhelming. Many times too pervasive to express on the blog. As I joke with some of my very close friends, the blog is the rated G version of how we are feeling on any given day. This is how life feels now.... it is a game. The game is to get up and dressed and appear like we are functioning. But I guarentee if you peel away this superficial layer, there is a hidden storm which we are desperately trying to navigate each day. Some days we do better than others. However, the last three lines of tonight's poem are poignant. "But it is not okay. It never will be okay. I will forever be lost in my masquerade."

I had the opportunity to visit with Mary (Ann's mom) today. I am getting to know Mary's roommate, Florence, as well. Florence is about my size, maybe smaller, and she has difficulty breathing. She was sitting in her chair, but because she was winded, she wanted to lie down. So she tried to make it to her bed, but she literally couldn't do it alone. So I went over to help her. She couldn't manage to get her legs on top of the bed. But what saddened me about all of this is that Florence is all alone. She never married, and has no children. No one looks after her at all. Each day is exactly the same, without any visitors. After being so winded, she realized she had to go to the bathroom. But she neither had the energy to make it to the bathroom, and certainly no aide was going to come running to assist her. She told me her strategy was to get into bed, and literally go to the bathroom in bed. I couldn't help but see something very wrong with this picture. Because care in most facilities for older adults is so lacking, the residents find ways to compensate for the inhumane treatment. The sight of Florence today has remained in my head all day. Fortunately for Mary, Ann's mom, this treatment most likely wouldn't happen to her. Why? Because Ann in visiting all the time, and has the staff jumping. In addition, Mary has a private assistant that Ann has hired for her mom. In many ways, Mary is one of the more fortunate older adults, but what happens to the likes of Florence and SO many others like her?! Imagine working your whole life, being an active and vibrant contributor to society, and then land up spending the remainder of your life in a facility with no family or friends to visit you? It gives you pause to this sobering reality.

I had lunch today with Ann, and over lunch we discussed the upcoming March for a Miracle scheduled for May 23. There is a great deal to plan, and I am very grateful to our Team Mattie members who have already volunteered to help and work at this event. Where would we be without you?

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Kristi's poem yesterday is one I think of as the "unanswerable questions." We all ask them and find no answers. Every person, every parent who has suffered the death of a loved one does, especially when that death is "untimely," when the person was young, or healthy (might have been in an accident), etc. I have even seen discussions of whether it is "easier" to accept a death that is quick (accident, suicide) versus one from long illness. I don't think it matters; I do think that there are some deaths we are conditioned to accept as inevitable (our parents and grandparents will pass on before us after a long life) and those that simply are wrong (death of children, losing one's parents at an early age). All deaths cause grief in those who loved them but some are truly life changing and those that are untimely, like Mattie's, are the ones that are hardest to reconcile. It has to be incredibly hard for you to have gone for a while in that state where people thought you were "coping" and now to their eyes you seem t be going backwards by openly grieving. Shock can last a short time or a long one, giving the appearance that you are doing "well" (whatever that is) and then when it passes and you grieve, people start asking when you will get over it. That answer, honestly is "never" as it is impossible to view the future without your child in it the same way again. But as Richard said in his article, you find a way to go on, to memorialize, to make meaning of your life and Mattie's. I think you are doing a wonderful job of that; I stand in awe of your ability to continue to blog, to help others, to find the energy to do things each day. I hold you gently in my thoughts."

Wednesday, February 24, 2010

Wednesday, February 24, 2010

Tonight's picture was taken in March 2009, in Mattie's bedroom. Mattie was dressed as a knight ready to do battle. Mattie, from my perspective, was the perfect knight. He was brave, courageous, and persistent. All the qualities one would need to fight multifocal osteosarcoma. I can't recall who said this to me at Mattie's funeral, but I do remember someone telling me that if Mattie couldn't beat multifocal osteosarcoma than no one could. It is a disease that is just unbeatable. This comment has stuck with me all these months, because I would agree, Mattie was a force to be reckoned with.

Poem of the day (Thanks Kristi, a fellow osteo mom!): Please don't ask me

Please, don't ask me if I'm over it yet
I'll never get over it
Please, don’t tell me he's in a better place
He's not here with me
Please, don't say at least he isn't suffering
I haven't come to terms with why he had to suffer at all
Please, don't tell me you know how I feel
Unless you have lost a child
Please, don't ask me if I feel better
Bereavement isn't a condition that clears up
Please, don't tell me I had him for so many years
What year would you chose for your child to die?
Please, don't tell me God never gives more than we can bear
Please, just say you are sorry
Please, just say you remember my child
Please, just let me talk about my child
Please mention my child's name
Please, just let me cry.

The past two days have been very challenging for me. I have come to really see that perhaps the way to heal or find peace with such a massive loss is to do just what Kristi's poem tonight mentions... to talk about Mattie, to remember Mattie, and to cry. I have spent many months SO numb to what has happened, that as my defenses start to come down, with that comes emotional outbursts, tears, anger, and at times great sadness and depression. I am sure for those closest to me, the Vicki who was numb was a lot easier to deal with, because no one likes to see someone you are close to crying and in pain. Yet there is NO way to bypass this pain and this anguish. The scary part about dealing with such intense grief is there are moments when I can't ever see it ending, nor do I see a foreseeable way to help myself through these moments. This is frightening because I used to consider myself a resourceful and self-reliant individual.

Today I was scheduled for a medical test at Virginia Hospital Center. This is the same hospital where Mattie was born and also where he was diagnosed with osteosarcoma. At times it is hard to return to this Hospital, and as I waited in the radiology department this afternoon, I couldn't help but reflect on being there with Mattie in July 2008. Somehow that wasn't that long ago! Yet so much has happened since that point.

After this testing, I went to have tea and sat for several hours reading a book. I needed to do this because I worked myself up into an anxious state over having to have this diagnostic test. Prior to Mattie's illness, testing and going to see a doctor did not bother me, but now I associate all tests with negative results. After all, I was conditioned for over a year. Each form of testing Mattie underwent, a negative result followed. I have been classically conditioned in a way, not unlike Pavlov's famous studies with dogs. They learned or were conditioned to salivate after hearing a bell ring. Well similarly I have observed time and again that Mattie's diagnostic testing produced negative results (once I received negative results from Mattie's testing, I then became anxious), so now just the mention of testing brings about instant anxiety for me.

The one bright spot of the day, was I had the opportunity to read an article in Counseling Today. Counseling Today is a monthly publication distributed by the American Counseling Association (ACA), of which I am a member. ACA's executive director is Rich Yep. I have know Rich for many years, and in addition to his role in ACA, he is a fellow St. Stephen's and St. Agnes School parent. Rich has supported Peter and I throughout Mattie's battle, and a few weeks ago, he asked me if I would give him permission to mention us in his upcoming column. I of course said yes because I feel educating others about osteosarcoma is crucial. When I read Rich's article today, I was deeply touched. I was moved because he was writing an article about resilience and within this article used Peter and I as an example. Mental health professionals do experience vicarious trauma as they help clients who are undergoing crises, however, as Rich astutely points out, what happens when a counselor is experiencing his or her own personal trauma and losses? How does one heal from this? I value Rich's insights and support and I asked him for an electronic copy of his article so I could share it with you.

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American Counseling Association Executive Director’s Column by Rich Yep
March 2010

Resilience and Moving Forward

For the past several months, I have been thinking about the word resilience. This past fall, I had the fortune of attending the Illinois Counseling Association’s conference, where the theme was resilience. And at the upcoming American Counseling Association Annual Conference & Exposition in Pittsburgh later this month, we have at least six Education Sessions or Learning Institutes that focus on client resilience. Professional journals often look at the role of the counselor in helping to facilitate resilience in clients. In fact, an article in this issue of Counseling Today discusses how school counselors can collaborate with teachers and other school personnel to strengthen the resilience of students.

We know professional counselors must develop resilience themselves because of the many situations, incidents and issues faced by the clients they serve. In all honesty, the ability to continue functioning as a mental health professional can be challenging at times, regardless of work setting. To constantly hear about a student’s or a client’s life challenges, obstacles and, sometimes, cruelties can wear on a professional counselor.

But what happens when the challenges, obstacles or cruelties are even more personal? What if the situation is something that impacts you directly — not as a counselor, but in your everyday, nonprofessional life? How do counselors react? I should clarify that when using the word resilience, I am not speaking of someone who quickly recovers from something and returns to “normal.” I am talking about making adjustments, finding ways to cope, moving through life and trying to find something positive to hold onto after a critical incident or crisis.

Let me share an example with you. In the summer of 2008 as ACA prepared to bring all of its division and region leaders together for a meeting, I was responding to various inquiries from those who would be attending. One of these e-mail exchanges was with Vicki Sardi, who at that time was the president of the American Mental Health Counselors Association, one of our largest divisions. We discussed the location of the meeting and where she could park her car. Then I received another e-mail in which
Vicki explained that she would not be attending the meeting because she had just found out that her son, Mattie, then 6 years old, had a serious illness. As it turns out, Mattie had osteosarcoma, a cancer of the bone that is quite lethal. Treatment began immediately.

For various reasons, Vicki and her terrific husband, Peter, started a blog in which she described the various issues they were facing in their efforts to find a cure for Mattie. Along the way, we learned about the uniqueness, courage and joy that this young boy possessed. We learned about Mattie’s disease, and we also learned how both Vicki and Peter became incredible advocates for their son and his care. Vicki was religious in her postings despite the trials and tribulations that she, Peter and Mattie faced. And during all of this, we read about those who provided care and support to the Sardi-Brown family.

Unfortunately, this past September, young Mattie lost his battle, but not before he and his parents put up one hell of a fight. You can read more at mattiebear.blogspot.com. Earlier in this column, I asked what counselors do after experiencing a very personal and traumatic incident. I want to tell you about an extraordinary endeavor that Vicki and Peter have undertaken in the wake of Mattie’s death. Despite all they went through between Mattie’s diagnosis back in July 2008 and his passing in September 2009, they have established a foundation dedicated to “finding better treatments and a cure to Osteosarcoma and Pediatric Cancers.”

The Mattie Miracle Cancer Foundation is an amazing tribute to this very brave, very talented, Lego-loving boy. But beyond being a fitting tribute to Mattie, I think this effort is a way to try and funnel what Vicki and Peter experienced this past year into something that might one day help others avoid such pain and trauma. I have made a contribution to the Mattie Miracle Cancer Foundation, and I hope you will consider doing so as well. For more information, including ways in which you can make a tax-deductible contribution, please go to mattiemiracle.com.

Please contact me with any comments, questions or suggestions that you might have via e-mail at ryep@counseling.org or by phone at 800.347.6647 ext. 231.

Thanks and be well.
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Tuesday, February 23, 2010

Tuesday, February 23, 2010 -- Mattie died 24 weeks or 6 months ago today.

Tonight's picture was taken in March 2009. The Hospital gave us wonderful box seats to see the circus. Mattie went with us and Peter's parents. It was a memorable night for him. It was Mattie's first and last trip to the circus. We bought Mattie all sorts of things at the circus, all of which had lights on them. He loved it! I captured him smiling and wearing all of his circus gear. I remember this night like it were yesterday.

Poem of the day: Will There Ever Be Life Again? by Gailyn Sadurski

I sit here, outside, on a chair
I sense the cool wet breeze blow over my body
I hear the traffic from a few streets over, cars going and coming
I see the gentle mist fall
People drive by, talking on their cell phones going to places
Children in the yard playing, gleefully running in the rain
And I feel nothing
Like I am a mannequin, posed to simply watch life go by
A bystander, like a child not chosen for the school yard games
I know warm water runs over me in the shower
I see the toothpaste foam in my mouth to clean my teeth and gums
I feel the hot, salt tears burning as they fall over my cheeks, down my neck
I know my heart is beating, I know I am breathing
But I don’t feel life
I am a stone, motionless, void and empty
Its been three weeks. Its been a lifetime. It was only yesterday.
He is gone. He is not coming back
I don’t want to breathe
Will there ever be life again?

Charlie sent me this poem, and when I read it, I thanked her. I thanked her because it captures quite eloquently how I am feeling. Today marks the sixth month of Mattie's death, and as the day wore on, I found myself getting more upset and depressed about the time that has lapsed by. I am not finding with time my feelings are changing for the better. In fact, I periodically do ask myself "will there ever be life again?" On any given day I am going through the motions, but internally I do feel like a "stone, motionless, void, and empty." I agree with the poem, "I don't feel life." I can assure you feeling this way and living life this way is not only challenging, but at times makes me question my ability to work through this and my ability to therefore re-engage and find purpose in my life again.

I picked Patches, our cat, up at the vet today. She has been boarded there for two weeks. The vet loves Patches and Patches seems very happy being there. Patches has hyperthyroidism, and at home we are unable to manage her medication effectively. But after two weeks at the vet, they finally stabilized her. They changed her medication, and when I picked her up this morning, I was given her new medicine. However, everyone was upset over the fact that Patches would be leaving to go home. Patches clearly found a good second home while Mattie was hospitalized for over a year. Patches is a VERY vocal cat, as most calico cats are, and though the boarding facility is on the second floor of the building, I could hear her screaming two floors down while I was in the waiting room. She was unhappy to be loaded into her carrier, and basically she screamed at me for the entire car trip home. I can see Patches is happy to be home though, and she is a good companion in many ways. She stays close to Peter and I, and she really relies on us.

I had the opportunity to have lunch with two friends today, Christine and Liza. We chatted about all sorts of things and I shared my cruise experience with them. We all reflected on how our changing society has impacted different aspects of our lives. It was a very interesting conversation, over a very tasty lunch.

We received an e-mail today from The Mattie Miracle Cancer Foundation attorney alerting us to some exciting news. Peter wants to share with you the following message: "Vicki and I have good news! We were just notified by the IRS yesterday that we are now an officially sanctioned and approved 501(c)(3) public charity! This is a major milestone in every non-profit's life as it is a formal and official IRS designation and recognition that all charities strive for but many do not qualify for. This letter of determination is the result of the Form 1023 application that we filed in December. This formal letter will make us eligible to receive funding and grants from a number of institutions as it acts as a IRS seal-of-approval that we are legitimate and not some fly by night organization. The letter will also allow us to register with the major charity tracking organizations and services that many private citizens, trusts and foundations use in their gifting decision making processes. This week we will provide this letter to a number of organizations so that we may be formally registered with them."

I would like to end tonight's posting with two messages and then a poem which I received from my lifetime friend, Karen's mom. The first message is from my friend, Charlie. Charlie wrote, "As you said, there is no shortage of grief poetry, much of it written by parents. That is so wrong, so sad, that I don't even have words to express it. Transitions are always tough, this one had to be especially difficult coming back to an apartment with Mattie's things but no Mattie presence. I am glad you found the penny yesterday, I believe he was telling you he is here with you and will be with you wherever you might be. It was very kind of you to go and visit with Mary on your first day back; most people would not have run to do such a good deed; I know she appreciated seeing you after your absence. I hope things get easier as you settle back in here in DC; my heart goes out to you and Peter. I hold you gently in my thoughts."

The second message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I hope you found time to reflect and relax while on your cruise. I am certain you found yourself thinking how much Mattie would have loved this or that several times a day. And perhaps, because you knew how much Mattie would have enjoyed something...you found yourself enjoying some of those things as well. I think of you often and always on Tuesdays."

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Based on the comments I posted in last night's blog about the status of eldercare in our Country, Karen's mom sent me this insightful poem. I hope you find it as revealing as I did.

CRABBY OLD MAN


When an old man died in the geriatric ward of a nursing home in North Platte, Nebraska, it was believed that he had nothing left of any value. Later, when the nurses were going through his meager possessions, they found this poem. Its quality and content so impressed the staff that copies were made and distributed to every nurse in the hospital. One nurse took her copy to Missouri. The old man's sole bequest to posterity has since appeared in the Christmas edition of the News Magazine of the St.. Louis Association for Mental Health. A slide presentation has also been made based on his simple, but eloquent, poem. And this little old man, with nothing left to give to the world, is now the author of this 'anonymous' poem winging across the Internet.

Crabby Old Man

What do you see nurses? . . .. .. . What do you see?
What are you thinking . . . . . when you're looking at me?
A crabby old man . . . . . not very wise,
Uncertain of habit . . . . . with faraway eyes?
Who dribbles his food . . . . . and makes no reply.
When you say in a loud voice . . . . . 'I do wish you'd try!'
Who seems not to notice . . . . . the things that you do.
And forever is losing . . . . . A sock or shoe?
Who, resisting or not . . . . . lets you do as you will,
With bathing and feeding . . . . . The long day to fill?
Is that what you're thinking? . . . . . Is that what you see?
Then open your eyes, nurse . . . . . you're not looking at me.
I'll tell you who I am. . . . . . As I sit here so still,
As I do at your bidding, . . . . . as I eat at your will.
I'm a small child of Ten . . . . . with a father and mother,
Brothers and sisters . . . . . who love one another.
A young boy of Sixteen . . . . with wings on his feet.
Dreaming that soon now . . . . . a lover he'll meet.
A groom soon at Twenty . . . . . my heart gives a leap.
Remembering, the vows . . . . . that I promised to keep.
At Twenty-Five, now . . . . . I have young of my own.
Who need me to guide . . . . . And a secure happy home.
A man of Thirty . . . . . My young now grown fast,
Bound to each other . . . . . With ties that should last.
At Forty, my young sons . . .. . . have grown and are gone,
But my woman's beside me . . . . . to see I don't mourn.
At Fifty, once more, babies play 'round my knee,
Again, we know children . . . . . My loved one and me.
Dark days are upon me . . . . . my wife is now dead.
I look at the future . . . . . shudder with dread.
For my young are all rearing . . . . . young of their own.
And I think of the years . . . .. . and the love that I've known.
I'm now an old man . . . . . and nature is cruel.
Tis jest to make old age . . . . . look like a fool.
The body, it crumbles . . . . . grace and vigor, depart.
There is now a stone . . . . where I once had a heart.
But inside this old carcass .. . . . . a young guy still dwells,
And now and again . . . . . my battered heart swells.
I remember the joys . . . . . I remember the pain.
And I'm loving and living . . . . . life over again.
I think of the years, all too few . . . . . gone too fast.
And accept the stark fact . . . . that nothing can last.
So open your eyes, people . . . . . open and see.
Not a crabby old man .. . . Look closer . . . see ME!!
Remember this poem when you next meet
an older person who you might brush aside
without looking at the young soul within.
We will all, one day, be there, too!

Monday, February 22, 2010

Monday, February 22, 2010

This picture was taken a month before Mattie was diagnosed with cancer (June 2008). We took Mattie for a walk on Roosevelt Island, one of his favorite places to explore. It seems hard to imagine that Mattie had cancer ravaging his body at this point, and we did not even know it. He looked and seemed very healthy and happy. Thankfully Mattie participated in a tennis camp at the end of June and into July of 2008. Using his right arm intensely in camp caused Mattie to have enough arm pain to alert me to take him to the doctor. Without this camp, it is quite possible we may not have known Mattie had osteosarcoma until he perhaps broke a bone. Which is typically how children with osteosarcoma are initially diagnosed. In Mattie's case, his cancer was so aggressive, if we waited until he broke a bone, it most likely would have been too late to even treat the disease.

Poem of the day: Losing a Child by Lana Golembeski

People cannot understand
The hell in which I live,
Each and every day.
In one moment, I had a child.
In the blink of an eye
She was gone.
I cannot comprehend death.
I try and try to understand,
But I cannot.
My heart is torn apart
Like a bomb has exploded inside,
The pain is more than I could have ever imagined.
We think we can protect our children.
And when we can’t
We blame ourselves.
The tears well up in my eyes,
Every moment of
Every day.
Alicia, where did you go?
Why did you leave?
Why couldn’t you have stayed
At least a little while longer?
Why did you leave me behind?
I search each and every day,
To find hope,
And to find joy again.
How can I when you are gone?
Someone please tell me how to do that!

As the poem accurately questions, how do you find joy and hope again once you lose your child? It is an excellent question, of which I still have no answer. But one thing is for certain, there are endless poems written about grief and loss. Especially as it relates to the loss of a child. When I began to write the blog after Mattie's death, I began to post poems each day. I was certain that I would run out of poems some where along the line. However, this still hasn't happened. Which illustrates one thing very clearly.... dealing with the death of a child is life altering and causes others to write about it and to process their feelings through poetry. I find great comfort in many of these poems, because though I don't know the authors, the authors and I share a great commonality. We share the trauma of losing a child, and in many ways it is helpful to read the raw emotions and desperation expressed in these poems, because it normalizes how I am feeling.

Today was a hard day as we tried to re-enter back into our lives after being away for a week. Peter returned to work very early and then had business meetings in Baltimore in the afternoon. I had teary moments throughout the day. It seems that Ann and Karen can foresee which days will be more challenging for me. So they both kept me busy today in different ways. Karen lives in NYC and is a full time math teacher at the well known Fame school, and despite being at school, e-mailed me throughout the day. It is funny how an e-mail can make such a big difference. I met up with Ann and we went grocery shopping together, had lunch, and visited her mom. Ann's mom, Mary, was happy to see me. It is funny, I think Mary is so used to talking openly with me about different topics, that both Ann and Mary's aide, Shayla, commented that Mary's conversations changed today with my presence. I am not saying the conversations are for the better, but you have to understand Mary and I both lost a son to cancer, and this commonality helps us talk more freely about the realities of life. While talking with Mary today, it became abundantly clear how most institutional like settings devalue and demoralize the dignity of older adults. Several people came in and out of Mary's room and not one person asked her how she was feeling or even tried to address her emotional needs. I think people who work in institutions sometimes forget that they are dealing with human beings who have feelings and needs. I would like to think those who choose to work with older adults came to this employment with the idea that they could make a difference and truly cared about the welfare of the people they were caring for. Unfortunately this hasn't been my experience. Most of the people working in assisted living facilities and nursing homes are going through the motions, doing the bear minimum in order to qualify for a pay check. When you visit Mary, it is clear that many of the older adults in her facility never leave their rooms during the day. Many of them either remain in bed or are seated in a chair by their beds all day long. Mary's roommate for example, never has a visitor, and yet you can see how she hungers for human interaction. It is simply a sad commentary on the state of affairs for our older adult population, and I can't help when visiting Mary to worry about my own future. Peter and I are not fortunate enough to have a child who could potentially be around to oversee our care, like Ann is doing for Mary. All I can say is visiting an eldercare facility is an eye opener and a humbling experience.

When I came home this evening. I parked my car and as I was carrying groceries to our home, I came across a penny on the ground. I picked it up and immediately thought of Mattie. I will never look at pennies on the ground the same way after I read that poem I posted on the blog a few weeks ago. The poem stated that pennies on the ground are left there by angels. So as I had my difficult moments today, I did pause and I picked up the penny, and basically said, "thanks Mattie, I needed that. I am thinking of you too."

As I promised, I would upload some pictures I took during the Caribbean Princess' kitchen tour. Hope you enjoy them!

Left: In this picture you can see the chef on the ship (to the far left), with some of his lead kitchen staff. The man on the right with the white jacket who is standing side ways is the Maitre d' of the ship's restaurants. He and the chef were an absolute riot to listen to!
Right: A row of ovens in the kitchen. Mind you this is only one of many rows. However, the kitchen was absolutely spotless. Which is a feat considering the daily work and preparations that take place in it.

Left: The kitchen is also very creative. They made bouquets of vegetables for us to see.
Right: The kitchen also prepared an eagle out of chocolate. It took great restraint on my part not to break off a piece of the wing to sample the chocolate.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Yesterday had to be really tough. All those children in the airport and then coming home to face all of Mattie’s things. Not that you don’t carry grief with you, with or without all the external reminders. I know that you do. Funny how our perception of scars can change. When Mattie was still alive we were emailing about scars as you were concerned about how some children might react to Mattie’s many surgical scars. I shared with you a note about a woman who had been through multiple surgeries and regarded her scars as “badges of honor” and that was how I saw Mattie’s scars. I always tell my friends who are concerned about their scars from C-sections as the first badge of honor as a mother and parent and so it is with you. It is the visible reminder of who Mattie is in your life along with all the other reminders that are inside of you. As you make your transition back here to DC, be patient and gentle with yourself. I hold you gently in my thoughts."

Sunday, February 21, 2010

Sunday, February 21, 2010

Tonight's picture was taken in our living room last February. Mattie completed the Lego city structure that sat next to him, and he was very proud of this accomplishment, especially since this set was very intricate. Prior to Mattie, I never really played much with Legos. However, Mattie was a good teacher, and I became a decent assistant. In all reality, Mattie was very good with his hands and had an innate understanding for how things worked. He was a born engineer. Hanging out with him for seven years, enabled me to develop skills I never knew I had. But then again, this is the beauty of raising a child, you are pushed beyond your limits in various aspects of your life, and through the process you learn more about yourself and your ability to love in ways you did not think were possible.





Poem of the day: A Letter to Mommy by Lana Golembeski

Letter to mommy
Mommy dearest, just writing to let you know
That each and every day I miss you so.
Best friends we will ever be,
No matter the distance between you and me.
You kissed my hurts and loved me so.
You rocked me in your arms to and fro.
You calmed me throughout the night,
While hugging me so very tight.
Every day you always kept me near
And wiped away my every tear.
No matter what the season,
You always loved me for no reason.
Thankful will I ever be,
For letting me be oh so free!
With angel wings my heart takes flight,
Finding joy and spreading my light!
Each and every day I come to visit,
While upon your shoulders I often sit,
Sending all my love to your soul,
Trying so hard to help you once again feel whole.
Mommy, my sweetest dear,
Feel my presence so very near.
Mommy, please don’t feel so sad
For I am with the very best Dad!
His love is oh so great!
Your entrance his angels do await.
There are no words to describe the beauty of this land
Formed by our Father’s loving hand.
Love and light shine everywhere
Even in places we fear to dare.
So mommy, please dry your tears
For in this place there are no more fears.
Love and laughter fill the air
And light shines throughout the lands everywhere!
Joy itself knows no bounds
And fills the air all around.
So mommy dearest
Look into the stars to feel me nearest.
You and I will always be best of friends,
Always, until the very end.
All of the angels within and beyond your sight
Are always there; making spirits bright!
God and I from up above,
Send to you our special love!

The disembarkment process off of a large cruise ship is a sight to see. No matter how organized the crew is, I always find this day stressful. Primarily because you are asked to leave the ship at a very early hour. The ship gives you an assigned time to leave based on your flight information. Today, Peter and I were asked to leave at 7:30am. So needless to say I was up very early to get ready for the long travel day ahead. Hundreds of people disembark at one time and this makes for a very challenging process as you try to find your luggage (which is collected by the crew the night before) on the dock. We had to clear customs on the dock which was an incredibly easy process. So much so that the customs person waved us on, I guess Peter and I look non-threatening. However, the San Juan airport was a challenge. After all, when thousands of people transcend onto an airport, naturally there is going to be chaos. If our Princess ship were the only one to drop off passengers at the airport today, we may have had half a chance, but there were two other big cruise ships dropping off passengers as well. We arrived at the airport before my parents, and checked our bags and got our boarding passes. But because we had four hours to wait at the airport for our flight, we decided to not go through security, but instead wait for my parents to arrive at the airport (since they had a later flight than us, Princess scheduled them to depart the ship after us). Fortunately we were there to help my parents, because by the time they arrived, the airport was completely overhwhelming, and having extra hands to help makes things go smoother.

Thankfully our flight was beautiful. Not one bit of turbulence, which was greatly appreciated since I am tired and not exactly thrilled to be home and back in cold weather. The skys were crystal clear, and we could see the Outer Banks of North Carolina from the air. Peter, Mattie, and I have fond memories of  the Outer Banks, and it was very special to see it from the air. Nonetheless, when we arrived at Dulles International Airport in Virginia, and got off the plane, I couldn't help but notice all the little boys with their parents. It is during these times that I feel the greatest sense of confusion and depression. I simply do not understand how Mattie could be taken away from us, and how our lives are so empty now. While flying today I happened to look down at my hand. I have a scar on my hand from a scratch that Patches, our cat, once gave me. Just from seeing this scratch my mind began to wander. I wondered if there was something on me that would always remind me of Mattie, or at least showed the fact that I indeed had a son. Naturally I wear Mattie's jewelry, but I wasn't thinking in those terms. I was thinking of something more permanent. It was at that point, I thought to myself, of course I will always have proof that Mattie was in my life, because I have the c-section scar to prove it. It is funny, how such a scar now seems so important. It is no longer a scar or imperfection, but instead a symbol of a memory of someone I love dearly.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As I read your last blog from the ship and looked at the pictures I thought, of course you would know all about the staff and what goes on behind the scenes. So many people go on a trip or a cruise and are oblivious to the people who make things happen, who cook, clean, serve food; for them, these people are invisible. For you, every being is a person; someone to wonder about and perhaps get to know. I think it is a wonderful and one of your many strengths. People always know that you are who you seem to be, someone who is interested in them and not just being polite. I appreciate the information on the cruise; you said there were many people but it was hard to grasp until I saw the amount of food and dishes being handled by the kitchen. I know you are headed back to DC today and it will be a tough transition back for you so be patient, be kind to yourself and expect some issues as you try to find some sort of balance in your life back here. As they said today in practice, discomfort is part of growth and life, pain indicates something you should not be doing now. So try, reach out and see what you can do, discomfort can be worked through but pain is to be avoided if possible. I hold you gently in my thoughts."