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."