Wednesday, November 28, 2007

Things we said today

One major first down, dozens more to go. Amy and I had a long talk just before Thanksgiving, and we agreed to just take things one moment at a time...and if that didn't work, to just enjoy the mashed potatoes. Sometimes in life it is the small things that comfort most.

I spent the holiday with friends, an extended family that welcomed us with open arms. I think I needed to be around laughter and joy, and got that...along with good food and conversation. I'm still swooning over the sweet potatoes. And the broccoli.

As time marches on I'm finding myself more melancholy about Sahara's death. Don't get me wrong; it was always heartbreaking. But in the early days, perhaps a lot of us comforted ourselves by muttering things like "Sahara would have wanted us to..." And this may all be wise and true. But here I am, bordering on enraged and sad, facing it all with more of a "Oh, I wish Sahara had lived to see THIS..."

For the moment, I'm riding with that. The tide of emotions does its thing, whether we want it to or not. Many of you have written to check in. We're all moving forward. And it is good to know that you are there for Amy and Shannon.

Another Angel

I was so sad to learn that Katie Metz, another beautiful 13 year old girl with a wretched brain tumor, passed away on Friday. I had prayed really hard for her to make it through Thanksgiving, so that day would not be marred forever for her family. Somehow, she did. There were so many similarities between Katie and Sahara. They were born just a few days apart, both had been very athletic, and had similar tumors. They lived almost the same amount of time. It breaks my heart yet again that another family has to endure such sorrow. Like me, Katie's mom searched the world over for answers, lived the life of the hospital homeless for a year and a half, managed the unmanageable, and fought like hell to save her daughter. Tina, I salute you. We did our best.

Throughout Sahara's journey and my documentation of it via this blog, I have always tried to keep it positive, working through all of the bad things and keeping faith and hope alive. I will continue to do so in the future, but today I want to share something that explains the true pain of what this experience is about. This poem was posted on angel Brooke Williams' blog - her mother, Gina, borrowed it from another site as well. It sums up very accurately how we all feel as parents who have lived the nightmare. Sahara faced all of this and more.

I hope you never have to hear the words,
"Your child has cancer."
I hope you never have to hear,
"the prognosis is not good".
I hope you never have to prepare to undergo radiation or chemotherapy,
have a port surgically inserted into their chest,
be connected to IV poles.
Look at you with fear in their eyes and say,
"Don't worry Mommy, everything will be okay."
I hope you never have to hold your child as they vomit green bile,
I hope you never have to feed them ice chips for lunch,
I hope you never have to watch the "cure" you pray for slowly take away their identity, as they lose their hair,
become skeletal,
swell up from steroids,
become barely or unable to walk or move,
and look at you with hope in their eyes and say,
"It's going to be okay, Mommy."
I hope you never have to stay in the hospital for weeks, months or years at a time,
where there is no privacy, sleeping on a slab, with your face to the wall,
where you cry in muffled silence.
I hope you never have to see a Mother, alone, huddled, in a dark hospital corridor...crying quietly,
after just being told, "there is nothing more we can do."
I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.
I hope you never have to see a child's head bolted to a table as they receive radiation.
I hope you never have to take your child home
(grateful but so afraid)
in a wheelchair because the chemo and radiation has damaged their muscles,
35 pounds lighter,
pale, bald, and scarred.
And they look at you with faith in their eyes and say,
"It's going to be okay Mommy."
I hope you never have to watch a family wandering aimlessly,
minutes after their child's body has been removed.
I hope you never have to face the few friends that have stuck by you and hear them say,
"Thank God, that is over with,"
...because you know it never will be.
Your life becomes a whirl of doctors, blood test and MRI's and you try to get your life back to "normal".
While living in mind-numbing fear that anyone of these tests could result in hearing the dreaded words...
"The cancer has returned" or "the tumor is growing".
And your friends become even fewer.
I hope you never have to experience any of these things,...Because...only then...
Will you understand....
Written by: Carol Baan

But there is one stark difference between our family and the tormented writer of this poem...because through the love and inspiration of Sahara we have been blessed with MORE friends than we ever thought possible. We were never alone in our fight. We never had to wonder if people cared or understood what we were going through...because we KNEW that they did. GOD BLESS EVERYONE WHO HAS TRAVELED THIS JOURNEY WITH US. Thank you all.

With love and GRATITUDE,