April 12, 2011

I’ve kept some things to myself these past few months.  Not much, being a blogger and all, but a couple of amazing kindnesses that I clasped all to myself, waiting for the right moment to share.  Only I’ve kept them too long, and I need to tell you about the amazing gifts that Jessica Rosenberg, @thedcmoms, and so many women across the internet have given me.

The first is a box, a beautiful box of wonderful words and thoughts and prayers and even little stories to make me laugh.  It sits by the chair where I sit in the evening, talking with friends or my husband, and I pull a beautiful little pastel note out of it when I need a little cheering up.  It was put together by Jessica Rosenberg and delivered by Leticia, but it is a gift from many, so many bloggers around the world, and I thank you.   

The second is an honest-to-goodness army of little lego warriors, princesses of course, but strong, with weapons in each hand, and they stand guard beside my computer, cheering me on and fighting the cancer along with my little lego warrior that my son labeled the cancer fighter on that day that seems so long ago now.  They are physical manefestations of friends, and their presence cheers me on like the badge on so many sites cheers me as well.  They’re incredible gifts, and to those friends, I thank you too.  I meant to write an amazing post about them and you and friendship, but my hands shake in the morning, and I rest after school pickup, and the stars never aligned and I’m sorry.  But still they stand guard, weathering attacks of the giant preschooler and his sweeping arm, and coming with me to the oncologist and basically reminding me once again that I’m not alone.

I’m so lucky.

I have one other thing that I haven’t shared publicly, and that’s my 2011 mantra, the realization I came to (late) that after we die (as we all will, one day), all that remains is what we have created and how we have loved others.  (In short, publications and people.)  And so we best keep that in mind as we live, and do those two things to the best of our ability.  It’s not the clean house that people will remember.  It’s not the laundry that matters to the children.  It’s not whether the floor was spotless and the toys tidy that will be recorded in the books of life, whatever they may be.  And so I need to let go of those other things, and downgrade their importance to “acceptable” and not “perfect, in case a friend stops by or I go to the hospital unexpectedly,” and I need to relax a little.  Enjoy my work more.  Go out for dinner with friends.  Have that playdate at the park.  And relax about the house already.

I’ve posted my mantra up on the top toolbar to remind me. 

Lego Warrior Princesses go to the oncologist

Lego Warrior Princesses go to the oncologist

The lego princesses are staring at me, asking to be called out by name, and so here they are.  Their names are etched on the back of each so that I will always remember who is who, and know that you are fighting along with me.  Thank you, C. Mom, (cheerleader and rock star, with pom poms and syringe), Jessica (Robin Hood with bow and arrow), Justice Stacey (Leia-like princess with sword and cape), Sue (coffee cup and flame thrower), Elaine (battle gear and “boomer”), Amy (grenade and big stick to beat the crap out of cancer), Jean (ponytail and giant club that makes her topple over if she’s not holding it just the right way), Mama Echo (business suit and spear), Kiam (also with bow and arrow), and Julie B (the redhead, who is so badass that she scares me a little).  You are awesome.  We are awesome.  I will not give up. 

Once upon a time, I thought that admitting my weaknesses and fears on the internet would make people think less of me, both here and in the professional world.  I never foresaw the real effect of sharing this journey with you and encouraging you in your own struggles via your blogs and Facebook — together, we have all become stronger.

Blissfully Happy

April 10, 2011

I’ve been blissfully happy this week, and too busy to blog!

Three days with Marty and her wonderful boys, full of action and adventure and play, all within my little house.  We did leave one day to venture to Ikea, and it was all colors and corners and wonderful things – and of course the long walk to the checkout with preschoolers.  🙂  But we had a marvelous time, just being together and playing with our little ones.  Little Bear missed preschool (I don’t even know how many times) in favor of play with our friends.  Our old friend Beth came to visit, and we told stories of times gone by and marveled at how things had changed.  Marty and I were mistaken for sisters – twice.  She loved my boys, and I hers, and I protected one fiercely from a man at the metro station intent on (verbally) pushing his anti-gay philosophies in front of impressionable little ones.  I say that not to brag, but to remember.  We must teach the children tolerance and love, and to remember that God is love, and we are to love one another, as we have been taught by words and by example, being loved ourselves.

Yes, the last two weeks have been all mixed up with Bible and friends and difficult scriptures (the blind man, healed, and Lazarus, raised from the dead, both in RCIA and on Sunday) and hope and fear and fearing to hope.  I had my scans on Friday, and I marked my 1 year anniversary since my last surgery on Thursday, and I celebrated only by not thinking about it at all, and by siezing opportunities to LIVE as much as I could. 

Bon came to town Thursday night, arriving just as our government was about to shut down.  I lay in my bed Thursday afternoon and evening, exhausted from a trip to Union Station with the three darling little boys, Marty, and C, and wondered how I would even be able to drive over to see her.  But on Friday, I had my scans and wanted so much to LIVE strong and get out of the house, and I drove to U Maryland, where Theorizing the Web was to take place later that day.  We met and I liked her immediately, not surprisingly, since we’ve been friends since 2006, never mind the fact that we had never even met before. 

We talked so long and so much about the differences in our government that I suggested we go see it!  We skipped the Capitol, it being full of angry men refusing to compromise, but I took her to the Library of Congress, my favorite place in the world, a palace of words, and she proclaimed it beautiful, a temple to knowledge, and we stood in the atrium for moments that felt like forever, soaking in the monument to learning, adventure, work, and books built in 1897, capturing a distinctly American era, with its ptuiis (small sculptured cherubs) holding books and bows and the telephone.  We listened to Tom the Tour Guide, a lovely retired man who clearly loved books as much as we, and he taught us tidbits not only about the building but about America’s strong and proud history, and we reveled in the opportunity to be surrounded by creations of past scholars and artists, and with others who also appreciated such things.  We paused for a moment afterwards in the downstairs hallway with Science and Family at one end, and Poetry at the other, accented inexplicably with a giant collage of technology – flat screens from floor to ceiling – and marveled at how we each felt immediately at home.  We walked to Union Station in the rain, gawking at the Supreme Court and the Capitol on the way, covered as it was with what we now knew should have been the Liberty Cap – proposed twice – ever the symbol of fights for freedom, that would have been preserved forever on our Capitol if Jefferson Davis had not stood in the way of early designs.  And now it is gone.  We walked, and talked about the flowering cherry and pear trees, and the lilac trees in PEI, and Oscar and Posey and Widget and Little Bear, and then the homeward train came to a stop, and a magical afternoon was over. 

I slept again Friday night, after our traditional Friday Night Pizza with the boys, and woke rested yet still exhausted.  The boys came back in and snuggled with C and me for an hour, just wanting to be with us, and us with them. 

After a time, I got up and went to a double baby shower, thrown for Minky and also for Jess, and had the most amazing time with Justice Stacey and UrbanMama, TechSavvyMama and TeachMama, Laundress Sue and Stimey, and I tried not to think about anything else, but the scan results weighed on me, I have to admit.  I came home ready to make a memory with my kids, and we watched Star Wars together, snuggled on the couch, for their very first time, and it was magical.

but then Old Ben (Obi Wan) died in the movie, and Little Bear had lots of questions as I snuggled him to sleep last night.  “Mommy, why did that man die?”  He was very old, my sweet.  He had finished what he was meant to do.  “Anyone else die?”  Well, my sweet, everyone dies.  (This was the first I had told him this; he has been exposed to more than he ever should have been, with my cancer fight; the least I could do, I thought, was to shield him from needless death until he was old enough to understand.  But now he was asking.  It was time.)  “No, Mommy.  Not Mommies!  Mommies never die!” he exclaimed, strong, confident words from within my arms.  Oh, my sweet.  Everyone dies, someday.  “But not mommies.  Not til they’re very, very old?”  (Oh, my heart.  Bent if not broken.)  Mommy will try, sweetheart.  (He was quiet. It was time.)  But if I do?  I will watch over you from Heaven.  I will love you always, and I will love you from Heaven if I must.  I will watch over you always, and my love will be with you in your heart.

And then he suddenly fell asleep, and I could not tell his thoughts.  Across the room, I heard Widget sucking his thumb, which he does when he’s thinking hard and forgets that he’s a big boy now, and so I crossed the room and talked with him for a while.  But he is 6, and guards his thoughts, so I do not know if it was the right thing or not.  I want so badly to reassure them but not lie to them.  To not promise that I will always be here and not die until they are all grown up.  Because I can’t promise that, and I will not make promises that I know will be broken, at a time when I cannot reach them to hold them in my arms and comfort them as I have so very many times.  And so, I make promises that I can keep.  I love you.  I will always love you.  My love is always in your heart.  Remember that, my dear ones.  My love is always in your heart.

And as children’s church this morning took up the story of Lazarus, I dashed downstairs to be there with my Widget (C was with LB), not even knowing what I feared, but when he raised his hand to share, it was only that his dog had died, many years ago, and I breathed a sigh of relief.  When I rejoined him in the pew, I held him on my lap and hugged him, never wanting to let go.

Bloganthropy and Lymphedema

February 28, 2011

A little bit of good goes a long way.

A couple years ago, two women named Rachel and Robin created a new product – a compression sleeve that they and their friends would be willing to wear to control their lymphedema, swelling in the arms caused by the removal of lymph nodes during a mastectomy.  They started a company called LympheDIVAs; Rachel’s brother Josh and their parents continued to improve the product and market it to other breast cancer survivors after her death. 

Carole lost her cousin Crickett to metastatic breast cancer too, but instead of wailing at the universe, Carole and her aunt Bonnie set up a foundation to help other breast cancer survivors feel good about themselves again.  Carole sent an email offering help to survivors, and one copy landed in Sue‘s in-box. 

Sue forwarded the email to me, offering me the opportunity to be pampered a little, because she knew I was suffering from chemotherapy again, and it touched my heart.  My heart was kinda busy, though, because my physical therapist Jonelle had mentioned casually while working on the lymphedema in my arm that it was so great that I was wearing a lymphedema sleeve to control it — many of her patients couldn’t afford one.  When I arrived home and checked my in-box, there was the opportunity to make a connection and to fix this wrong that lay on my heart — to help others have what I have, the opportunity to control this medical condition at home, without weekly trips to the physical therapist.

Three phone calls later, Josh and Carole agreed to provide donated lymphedema sleeves to patients in need, and the lymphedema sleeve project was on.  The problem then was how to make people aware of the opportunity, so Sue and I sent a couple emails and a few tweets and then The DC Moms and twitter friends and blog friends and friends of friends stepped up to help, to spread the word, one tweet, one post, one update, one person at a time.

I wrote a post, Sue wrote a post, Minky wrote a post, and the news gained traction.  Over 100 people tweeted the links that week.  150 people shared a link on Facebook.  Over 40 bloggers added their posts to ours, in attempt to saturate the internet with the news, so that a woman in need, searching for help to afford lymphedema sleeves or other post-mastectomy gear, could find it. 

Kristen, Jessica, Amie, Joanne, Marty, Victoria, and Elizabeth then put their money where their voice is and donated $1/comment on their lymphedema post.  Others went to donate so that additional sleeves could be bought as needed, and before we knew it, $1518 had been sent to Crickett’s Answer for Cancer by over 20 people, and 36 new breast cancer survivors were helped in the first 40 days.  

On Friday, the project was recognized by Bloganthropy, with me named as January’s Blogger of the Month.  Thank you, Bloganthropy, but the award really belongs to all of the bloggers who helped saturate this part of the ‘net with notices that there is now help available for breast cancer survivors who need but can’t afford compression sleeves to control their lymphedema. 

Thank you, friends.  Every day, your actions remind me that there is indeed good in the world.  Here are the posts that were written in support of this effort, and tweeted ’round the world:

Ann Bibby:
BlogHer (Mel):
C. Mom:
Crunchy Chewy Mama:
Dr. Kathleen Ruddy:
Elizabeth: Florinda:
Garza Girl: and
Justice Stacey:
Marty: and
Mayberry Mom:
Michele: /cant-afford-lymphedema-sleeves/
ThisFullHouse @ Wellsphere:

This effort was recognized by writers at the American Cancer SocietyBloganthropy, BlogHer, Care2, Mom Blog Magazine, and ShePosts as being an exciting community effort.  Thank you all.  And if I missed your post or it hasn’t gone up yet?  Let me know.  I’d be thrilled to add even more!

The dusty card

February 15, 2011

Years ago, five to be exact, our friend Marty started a blog.  She wrote her grief rawly, out here in the wilds of the blogosphere, words popping up like wildflowers carried on electrons. 

I didn’t even know what a blog was.  We talked on the (gasp!) telephone, and kept in touch, as we always had, with calls, and emails, and periods of awkward silence after we missed each other’s birthdays (although this, I must admit, was mostly me.  I am TERRIBLE about remembering dates.  I STILL have nightmares about history exams).

But one day she admitted to me that she had started … blogging, and that there were people out there worth reading, women who were now mothers, writing their truths online.  After a while, I went to her site, and was captivated by her storytelling, the way she captured the things she felt important, even in difficult times as her mother went through cancer, and Marty grieved. 

I listened, and commented, and eventually she inspired me to blog, and we blogged to each other (there was rarely another reader on this site, in those first months, although bon and The Not Quite Crunchy Parent were quick and early friends), back in the wild days of ’06.  Her mother got better, and then worse.  Her father got worse, and then there was a time when no one knew what would happen. 

I always checked on her.  I stood by her.  But I didn’t know what else to do, to help my friend, who lived so far away.  My friend was hurting.  And all I could do was to use my words.  To write, to encourage, to cheer her on on good days, and to be there for her on bad days.

And I bought a sympathy card.

I bought it because I was a busy mom, with a toddler boy and a baby on the way, and I was on bedrest for a difficult pregnancy as the baby sat ON. MY. LAST. NERVE. the whole time and I refused painkillers for as long as I could.  But her mother got better, and her father got worse, and he got better, and as they continued to cycle, the card shifted ever-downward in the stack of “to do” papers at the right side of my desk.

Eventually, it had sunk so far to the bottom of the papers, and her parents were doing so well, ministering to their church, enjoying together the life they had built, that I tucked it away, smiling, into my box of misfit cards (again, with the not remembering dates!).  Marty continued to blog, and so did I, and here we are, almost five years later.

Thousands of posts.  Tens of thousands of comments.  Twitter was born since then, and so were her sons. 

Marty has two wonderful boys who bring her joy every day, and who were with their momma and her momma the last two weeks, while Marty’s father moved to hospice.  These sons were the children of Marty’s dreams, the children that she feared her parents would never get to see, to hold, to hear called by their names. 

Her parents did see the births of her babies, and they were there through her own difficult pregnancies, the loss of her angels (it was Marty and bon and Kate who taught me that it’s ok to speak of them, that mentioning the loss of a loved one does not break open the wound anew.  I remember them, Marty.  I remember you loving them so much, even before they were born).  

Her parents did hold Christopher.  They did hold Colin.  Christopher and Colin are wonderful boys, and I am sure that Christopher calls them each by name. 

And then, Marty’s father died

I don’t know what comes next for her, but I know one thing.  I will be here, reading, writing, supporting my friend.  Whether she wants to talk about it or the boys or something entirely different.  Because the biggest thing that she has taught me is how friends can do that for each other, through thick and thin, college and grad school, marriages, miscarriages, children, and disease.  Through good times and bad. 

Sharing the circle of friendship doesn’t weaken the original bonds; it makes them even stronger.