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."