Wednesday, December 31, 2008

Time to say goodbye


I continue to look in the mirror and wonder, “what the hell happened?” As I sit here on the first day of 2009, trying to pull words out of the air, I know that turning Sahara’s blog into a permanent memorial is the right thing to do.

However, it’s also difficult to close the book when you’re still searching for answers. Sahara loved the messages sent to her via the blog…they made her smile on so many rough days. I’m eternally grateful for all of you who were so faithful to our family as we faced the unthinkable…before, during and afterward.

As a Cancer Mom, you find yourself constantly searching and reading about the journeys of other families fighting the same battles. You rarely meet the people, but feel as if you know them, as you keep up with the raw, honest, often daily entries they make in their blog journals. You laugh at the funny times; you ache with them during the awful times. You hang your head and sob when their children are lost. You get so angry and hurt so badly for them… because until some serious major medical breakthroughs are made, you know how the stories will end.

I’ve come to realize that we Cancer Moms are in one tough sorority. I found the following on Gunner Gillespie’s site (we CM’s pull and post a lot of information from each others’ sites). It was helpful to me and I wanted to pass it along to you.
By Erma Bombeck

Most women become mothers by accident, some by choice, a
few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As HE observes, He instructs His angels to make notes in a giant ledger....

"Armstrong, Beth, son, patron saint Matthew, Forrest, Marjorie, daughter, patron saint Cecilia, Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

But does she have patience?" asked the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has its own
world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you."

“No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see....ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she was here by My side.”

"And what about her patron Saint?" asked the angel, his pen poised in mid-air.

God smiled. "A mirror will suffice."

As a Cancer Dad, you’re often on the sidelines. You’re keeping the home fires burning, working yourself to death and trying to keep your head on straight as you spend so much time alone. Normal family life becomes a distant memory, as in so many cases (including our own) the Cancer Mom must take the child far away for treatment, for great lengths of time. Unless you’ve lived it, you cannot fathom how difficult it is to work all day, then go home and receive the nightly phone calls that often bring lousy news…MRI reports, bad reactions to medications, sickness, mouth sores, weight loss, hair loss…but, if you’re really lucky, you might hear about something funny that she said or did that day that made everyone howl with laughter. We were fortunate that Sahara was blessed with a riotous sense of humor and often did make those doctors and nurses laugh. Cancer Dads, the world should salute you. I know I do.

I envision this web page becoming a virtual “curio cabinet,” where I can stash memories, photos and maybe even the occasional announcement if anything of real interest or value is happening. Come back and visit from time to time.

We will continue to support the good works of MVTH and have some ideas for fundraising in the coming months. I also ask that you keep Pediatric Brain Tumor Research and Ronald McDonald House Charities at the top of your giving lists; they are so very, very worthwhile. One of my goals is to support the research of Dr. Michael Edwards and his staff at Lucile Packard Children’s Hospital at Stanford. They are working so hard to find the answers we need. I pray that within my lifetime a cure will be found for the horrific cancers that take the lives of so many precious children.

I really don’t like goodbyes, so let’s just say “so long for now.” Thank you for honoring our sweet Sahara with your presence here on the blog and in the million other ways you’ve supported us. Please remember how funny she was…remember her smile, her beauty, and her love for her family, her friends, and LIFE.

Until the world stops turning
Until the wind doesn’t blow
Until the sun stops shining
Until the river doesn’t flow
Until my heart stops beating
The legend lives on
Remember the name
Sahara “Hoops”, 21

With much love,
Amy and Shannon

Almost 14 months ago, after a long day of celebrating Sahara's life surrounded by her family, her friends, her church community, by Rick, Packy, Matty and Ronnie and her collection of animals, Shannon, Amy and I took a deep breath and had a quiet conversation about how and when to end this site.

I told them we'd know when it was right. So when Amy came to me earlier this month and said "I'm tired of living in a fishbowl," it was clear. This morning we took some first steps to turning this living tribute to beautiful Sahara into a permanent memorial. The thing is, no one ever forgets. But at some point, a headstone is carved, and that's it.

This finality bothers me immensely, especially because we're forced to connect it with such an amazing child. Her life was bold and vibrant, played out at full speed, top volume, heart pounding enthusiasm. It was her truth from day one. She knew what she wanted and what she didn't. She was astutely aware of herself, and her place in the world, and unlike most adults, she was entirely comfortable there.

There are thousands of Sahara stories here, capturing the last months of her life on earth--and the first year of the rest of us learning to live in a world that still doesn't quite make sense.

But this blog is not about us...from the very first day, it was meant to be about our darling Sahara, about her fight and her journey and the miracle she would undoubtedly pull from her pocket.

As proud as we can be for all the miracles she accomplished, for all she inspired and still inspires today, we all know the story itself has ended.

For more than two years, you readers have surrounded us with a blanket of support and love and hope that has brought warmth and comfort on the darkest nights and joyful laughter on the days we needed it most. Thank you for that. It meant the world. We started the blog to keep you informed--and discovered that instead, you kept us sustained.

Letting go of that is hard, but it's the path out of the woods. And so, on this cold, snowy morning, we are taking those first steps, our breath forming white clouds in the air, our cheeks pink with anticipation for what lies ahead.

With love and heartfelt gratitude,