ARGZ 2010

The Polar Express...

2010-12-24T11:16:00.000-08:00

I'm struggling with something this Christmas.

It's not exactly grief or sorrow, either. Sure, they're always with me, but I have developed ways of beating myself up about them, reminding myself to be thankful for our two surviving children, for my husband, for our blessings. "Find your JOY!" I told myself at the beginning of the month. I even selected a holiday card with the word emblazoned across the top, our cherubic-looking children, all smiles, brother's arm protectively hugging his baby sister under it.

It's ambivalence.

I care, for their sakes, but at the same time, I don't. Things aren't exactly perfect. We've lost a row of lights at the bottom of the tree; they just quit. We haven't replaced them. The tree still looks beautiful with all of the children's special ornaments. It just has a dark space at the bottom.

I find it fitting.

I've tried to throw myself into the process this year. We had some time to ourselves, thanks to some childhood illnesses (conjunctivitis, colds, what-not) that kept us homebound for a week and a half and gave me extra time to decorate inside. That helps, a little. Then again, I start to see the imperfections. Santa Flaws.

I know our lives will never be perfect. Sometimes, the crooked picture on the wall is just going to stay that way for a while.

I try to take some pride in our home's external appearance, because if I allow it to reflect the chaos that rages within (me, at least), we'd most certainly find ourselves on the "all-stars" episode of hoarders.

I did my best to make this a very special holiday for the kids. We baked. We shopped. We waited in line to see the man in the red suit. It's always about them, about others, about making other people happy.

Maybe, just maybe, it would remind me of what that truly looks and feels like. My happy is not what it once was.

My joy comes with a pause and an extra 'oy.

There is something missing, something imperfect, something I can't quite get right about every holiday, especially Christmas.

I'll do my best to fight apathy. I know it's my defense mechanism to ward of the nasty emotions that come with the good.
I know, deep down, I really do care.

It would be completely unfair to her, to them, if I didn't.

All that glitters...

2010-12-16T10:34:00.001-08:00

"Hey, at any rate, you can get away with experimenting right now. Go for it!"

WARNING: If you ever hear those words, ignore them.

My hair, now about 2 inches all around, is taking on a life of its own. Too short to cut, too long and unruly to train into any particular style, I'm resorting to gelling it all down or giving up altogether and letting it go where it wants to go.

On the positive side, people no longer seem to be assuming that I, myself, have battled cancer (perhaps assuming I just went for one of those easy "Mom 'dos"), but then again, they're not asking about it anymore, either, which takes away from my ability to explain why I did what I did, opening more eyes, ears (and perhaps wallets) to the St. Baldrick's Foundation. It takes a few more steps to get there, but when I can, I do. ("My hair wasn't always this short...")

There is that wicked little feminine ego inside of me, though, wishing my hair were cuter, more attractive. It made me reach for the Feria. Yes. The bottle blonde.

I now look like I've rushed into the Citgo bathroom while on the lam, chopped off my hair, and did a quickie dye-job while stuffing my old, identifiable clothes into a duffle bag before shoving them behind the john.

When I look into the mirror after a shower, everything wet and matted to my head, there's a good ol' Ken doll staring back at me.

Emma Watson's "Marie Claire" cover, I am not. Ellen Degeneres, I am not. Ryan Seacrest? Perhaps.

Maybe after a few weeks of more growth, and a shade lighter, I could have a 'do resembling Tabatha Coffey's (you know,the one who takes over the salons?)

Going somewhat incognito reminds me how well we, the bereaved, seem blend in with the normals on the outside. Sometimes it's a lonely feeling to be in a room with many people who don't realize how difficult the question, "How many children do you have?" can be. Holiday parties. Good health and good cheer.

What I encountered recently was not a shot of spirits to embolden myself to answer honestly, but a shot of perspective. At a company gathering, during polite conversation I learned about two distinguished gentlemen who had experienced their own unthinkable losses. One laid a granddaughter to rest after her second relapse of childhood Leukemia. The other, his six-month old daughter. "That was 30 years ago," he said as he looked down at the china and silver on the table. He looked me in the eyes and continued," but it's not something you get over, you know?" Yes. I do.

These men have made tremendous positive contributions to their communities and our society (one whose company was integral in reconnecting Manhattan after both World Trade Center attacks.) I was in quiet awe of their dignity, and their choice to honor their loved ones by giving back, rather than letting their grief take over.

In another dreaded venue, holiday shopping (which still makes me cringe,) I came across another of the hidden bereaved. She was the clerk who rang up my items, asking friendly questions about the toys and those for whom they were intended, sweetly complimenting Zoey who was charming her with smiles and coos from her stroller seat. Inevitably, the number question came up, and as I typically do, I explained that my oldest should be 6, but she died two years ago while battling Neuroblastoma.

"Oh, I'm so sorry," she said, her hands flying to her mouth.

"Really, it's ok. I like talking about her. I'm very proud of her and know she's in my heart."

"I'm glad you mentioned her. I lost a granddaughter two years ago, too."

It was a very rare liver disease. Only 500 children in the U.S. are diagnosed each year. Listening to her lament the dearth of research funding for it, we both chimed in at the same time:

"It's because they're considered orphan diseases."

We shared a sigh. We exchanged our knowing look, and then we said to each other, "Have a Merry Christmas," before I wheeled Zoey's stroller out of the door.

Silent pain hides beneath the eyes of those rushing around us, processing the holiday stress at the same time as grief.

We are not alone.

At least she didn't call to me as the doors closed behind me, "Stay gold, Pony boy! Stay gold."

A tree, a train, and a trial...

2010-12-06T12:58:00.000-08:00

We found our tree!

Now, if our lights were only as bright as her smile...

And if we could just let G-man do all of the decorating...

Oh, right. Then the entire house would look like this:

In my commitment to living in and enjoying each moment more, I've made a decision. I deleted my Facebook account.

We'll see how that goes.

Bless this Mess

2010-11-08T16:35:00.001-08:00

Now this...

is the way to eat cake.

And this...

is the way to drink milk.

We're not perfect. But we're pretty ok.

Happy 1st birthday, sweet Z. We love you!

When the Saints Go Marching In

2010-11-01T06:43:00.000-07:00

In the Christian tradition, November starts with All Saints' Day, followed by All Souls' Day. Days of reflection, time to remember those to whom we look for inspiration and guidance, those who have gone to glory, those we miss dearly.

It's also another reality check.

It's tempting to remember all of the good, to idealize our memories and place our loved ones on pedestals of perfection. We try to put on a veneer, hiding the hardships, airbrushing over the blemishes that were part of the lives we shared with our loved ones.

I have more than a strong suspicion that in the stories that comprise the "Lives of the Saints," we're not getting the full picture. We're getting a snapshot, a moment, even a series of moments, when these individuals made extraordinarily good choices against astounding odds. We're getting recollections of miraculous happenings, signs, extraordinary, exceptional moments that made those who heard them wonder... what was it about this person that made them so special?

Did these individuals lead perfect, sin-free, error-free lives? Did they always say and do exactly the right thing?

I highly doubt it.

As humans, we're flawed. We're imperfect, and we make mistakes. What makes us extraordinary is what we do with our choices when it comes to the trials life hands us.

We recently had a death in the family, a loss of someone who was dearly loved. My Uncle John enjoyed life, sometimes maybe to the extreme, but he also put the needs of others before his own time and time again. He wanted people to be happy, to be comfortable, to be relaxed. He loved children, especially his own and his grandchildren. He did his best to care for my Grandmother, who was determined to live in her own house for as long as she could. He had good friends, who faithfully checked up on them and provided meals when both of them were sick. John struggled with his own health issues, and sadly, complications from his chronic peripheral vascular disease and infection landed him in the ICU and on a vent. Seeing him fighting through the night he wasn't supposed to survive and making small improvements over the next few days as well as the hope my cousin sustained despite hearing how the odds were stacked against her father took me back to another ICU unit, another time, another hope. I didn't want her and her brother to have to bury her father. I didn't want to have to kiss him goodbye and tell him to give Arden a big hug for us. He was only 55. Still too young.

Seeing my Dad, a stolid giant, wipe away tears as he said goodbye to his youngest brother before having to walk down the hallway to the next ICU until to tell my Grandmother (who had taken her own fall, had a mini-stroke and was also transported to the hospital the same day as my Uncle,) that her son had died was beyond sad and surreal. I knew, but I didn't know. No matter what the age, losing a child is beyond the pale.

"It's a blessing," she said.

"Thank God," she said.

And then, she lead us in the Our Father.

My Grandmother has finally accepted the fact that she needs full-time care. Thankfully, once she recovered from the dehydration that made her extremely confused when she was first admitted to the hospital, she regained her sharp long-term memory and was able to clearly state her wishes and make decisions for herself. She's not happy about it, but she knows she can't live at home without someone to assist her. (She mentioned that John is the lucky one. *Sigh.*) She's now in a step-down rehab unit at the Masonic Home where my Aunt (a nurse) works. She will get the care she needs (with my aunt, cousins, and as many of us that can check in on her as possible), but I know her heart isn't in it. She's sad, she's frightened, and she has started to say she needs to get home to clean up a bit and take care of the bills. (My aunt and dad repeatedly reassure her that everything is being taken care of; she won't have to worry about that.) I can only imagine the kinds of thoughts that torment her right now. I can only hope we can surround her with enough love to help her through her transition and her grief. She is strong in so many ways (we're all amazed that with her fall, no bones were broken. Miraculous!) She has been through so much in her 89 years -- World War, struggling for survival, fleeing from Europe while pregnant an caring for a 4-year old, starting a new life in the U.S., learning a new language, working hard for her family.) She's strong beyond my imagination, but...

Losing a child is not as easy to get through as the words of a prayer. I know.

These are the moments we feel powerless, helpless, hapless.

All we can do is try our best to be there. Share life.

Disappearing from the narrative isn't an option.

Ours may not be the perfect story, but it's one of which I'm a proud part. The children will know about their Uncle, their Grandmother, their family history, just as sure as they'll know about their sister. None of them were perfect. All of them are loved.

Our souls are connected, after all.

Arden and her great-Uncle John, September, 2007

And... in what seems like a complete non-sequitur under the circumstances, we hope everyone enjoyed their Halloween celebrations!! We made the most of it!! More importantly, the kids had a blast!

Just another ordinary day...

2010-10-11T17:38:00.001-07:00

It's October 11th. There's nothing particularly special about this day for most people, usually. Oh, this year, it also happens to be Columbus Day, so I couldn't mail out the birthday and anniversary cards or package I wanted to send. Stupid New World discoverer. He was a genocidal maniac anyway. Couldn't navigate his way to the West Indies, that's for sure.

Boy, I sound bitter about an explorer, don't I?

My foul mood really has nothing to do with poor old misguided Christopher C.

More recent events (as in, three years ago), my "new world" began. It was my introduction to the world of childhood Cancer. It was the day I learned a new ninety-frickin'-five cent word, "Neuroblastoma."

Yadda, yadda, yadda, so I'm bald now.

Well, technically speaking, I have about 3/4" of growth, but it's still looking pretty freaky-deaky fierce on my noggin. Almost a month ago, I shaved my head alongside of my teammates from 46 Mommas Shave for the Brave for the St. Baldrick's Foundation. It felt good, even though it felt terrible. It felt peaceful, even though I know I'm still at war.

It's only hair.

It's only ego.

These are small sacrifices for what we hope will yield great results for the childhood Cancer community as a whole. We hope.
We hope.

Grayson and Zoey have no idea that Mommy despises this date. They accepted Mommy's new haircut without skipping a beat. Grayson tells me I look beautiful (but he didn't trust my judgment when I took him to the barber's a few weeks after I got back. "I want some hair, Mommy. I want it longer than yours.") Zoey giggles and chortles when lift her and tickle her tummy with the top of my head.

Today was just another day of our regularly routined playdates, naps, meals, errands, and family fun.

Maybe someday they'll realize that behind Mommy's smiles, behind her enthusiasm and energy, there are thousands of screams, thousands of points of pain, thousands of muscles and nerves twitching to maintain themselves, to hold the body and spirit together through the 24 hours that comprise 10/11.

Nah. They shouldn't have to know. They should just be able to enjoy their childhoods, their lives. They deserve to feel only the love, not the pain they'll never truly understand. They shouldn't have to.

Meanwhile, I'll just stay thankful for them, for Rick, for my family and friends. I'll keep smiling, laughing, and hoping our efforts to honor Arden's memory and the lives of all the others are not in vain. I'll remind myself to look beyond my pain, my grief. It's just another day without her, after all.

Q and A

2010-08-24T17:54:00.000-07:00

"Mommy, I made a birthday cake!" my bright-faced boy gleefully announced when I walked into his room after his supposed "nap" time. (Sometimes he naps, sometimes he plays. It's a three-and-a-half year old thing.)

"That's wonderful, Grayson!" I replied, looking at the stack of stuffed animals and toys he used to create his culinary masterpiece.

"It's for Arden! It's Arden's birthday cake!"

"Oh, really?"

"Yes, it's for Arden, and Grayson, and Zoey, too! It's our birthday cake!! YAAAAAY!!" He added a few colorful pieces of his wooden dinosaur puzzle to the top for good measure.

"Mommy?"

"Yes?"

"Mommy?"

"Yes, Grayson."

"Mommy, where is Arden's house?"

I took a moment to look down at the rug, presumably for a spot to place the baby so she could play with one of the blurry giraffes or a teddy bear. Steady. Ready. Go.

"Arden's not at a house, Sweetie."

"But she doesn't live here."

"Well, she is here with us, in a way, but we won't get to see her. We remember her; we love and miss her very much, but she's in heaven and in our hearts, remember?"

"Yes."

He paused.

"But where IS she?"

Present tense. He knows she exists -- in our minds, in our pictures, in our stories -- yet he cannot grasp where she is or why she's not with us. In his mind, she is somewhere, in a house, happy, healthy, telling whomever she's with about her baby brother who is making her a birthday cake out of cotton and wood.

In a way, I'm right there with him. I have the same question. For him, I answer it earnestly, hoping it will eventually make sense when he can truly understand life and death. (Does that ever happen for us?) Right now, the only thing he knows is that she is, but she is not. She is his sister, but she is not here.

I know the questions will keep coming, and some of them might be harder for me to hear, let alone provide a satisfactory response. He's already developed his love affair with the wonderful word, "Why?" (Which honestly, I do love and encourage. I want him to have an inquiring mind, to always love learning and seeking information.)

I'll do my best to be honest, even when I don't have the answers.

Next post: "But Mommy, WHY are you BALD?"

http://www.46mommas.com

Reach the Day, Momma Bucher-Style

2010-07-07T12:38:00.001-07:00

It's a tough crowd, no matter which way you look at it.

A group of volunteers gathered in D.C., as they have for several years, anxious to meet with the staffers of Legislators from across the country, hoping to convince them to support CureSearch and appropriations specifically for Childhood Cancer research.

We wish we were just tourists, that we didn't know what we all know too well.

Then again, if we weren't there, the kids who are hooked up to chemo, getting scanned to check for relapse, making appointments with Endocrinologists and other specialists to help them with long term effects, wouldn't have a voice in Washington.

That's why it's important for us to show up, no matter how hard it is for us to tell our stories over and over again.

This year, the Buchers made it a family trip, extending the celebration of Fathers' Day so that G-man and Rick could have some special manly-man bonding over planes, trains, and dinosaurs courtesy of the Smithsonian museums.

Zoey traveled with me, mostly because she's still nursing.

She was not, I repeat, NOT a prop.

Ok, I might have mentioned to a few staffers that she'll never get to meet her oldest sister. Too much?

I was impressed by the unflinching support I received as a nursing mom. Kelly Hall, Senior Advisor to Allyson Schwartz (D-PA), encouraged me to use the Congresswoman's office after our meeting. "Just peek your head out to let us know when you're done," she said with a smile. They're very friendly to us, avid supporters of CureSearch's initiatives, incidentally. Later in the day, I just used my Bon-Bebe cover up and nursed as needed, even during meetings with the staffers from Congressman Murphy's office and Senator Casey's office. There are no breaks for breastfeeding when lobbying Congress! (And yes, I say this with the same tone as Tom Hanks when he delivers the line, "There's no crying in baseball!") There's just not enough time in the day.

We visited many impressive-looking offices, some I had seen last year during Reach the Day 2009, others I hadn't. Schlepping back and forth between buildings on the Senate side (like Hart and Russell) and the House side (like Longworth and Cannon) in 90+ degree heat with a stroller bordered on the absolute ridiculous (and made me more than a bit self-conscious as my CureSearch Reach the Day t-shirt absorbed the effects of the heat.) I was very grateful for the tunnels that connected the buildings on either side. (Visitors can only go through those that go under the Capitol Building with an escort that has clearance, in case you're wondering why we didn't use those.)

Of the austere offices with fine woodwork, moldings, trim, and (in some cases) fireplaces, the one I found most impressive was actually the most plain. Instead of pictures of himself posing with prominent political figures and other celebrities (as was the decor of choice for most legislators), Congressman Joe Sestak's walls were adorned with crayon drawings by children. My heart melted as I looked over the crooked, oblong circles, the stick figure families, the rainbows, and the smiley faces. Here is our champion, a father who watched his own daughter battle a brain tumor, who is continuing to fight for greater awareness in Washington and greater sensitivity to the needs of children battling life-threatening illness. He began the Pediatric Cancer Caucus. He fought hard to garner support for the Caroline Pryce Walker Conquer Childhood Cancer act.

And we could lose him.

Sestak defeated Senator Arlen Specter for the Democratic nomination for Senate this year. He's up against Republican Pat Toomey, who has already launched a series of campaign strikes, ads trying to label Sestak as a "Liberal," assuming that to be a dirty word right now.

I hope those crayon drawings find there way to the walls of an office in Hart or Russell in January. We could really use a guy like Sestak on the Senate side.

Meanwhile, I'm writing my letters to follow up on the meetings we had and to persist with establishing connections with the offices of the legislators who did not schedule meetings with our group.

I've provided my feedback to CureSearch, which is in the process of review (and hiring, as they've lost a few members in key personnel positions.) I've been invited to convene with small group to help next year's event grow and improve (which is something I hoped to be able to do since last year.)

Internally, I'm still healing a little bit from the experience. It's hard to see our small numbers during something that is supposed to be a "rally." It's hard to keep it together throughout the day while explaining over and over again what so many of us think is obvious. It's hard to be told that "things are tough this year in Washington when it comes to appropriations." It's hard not to want to shake the sense into the young twenty-something ivy-league staffers who seem unaffected (but most likely are not; they just have to listen to sob stories like us from different lobbies all day long and quickly develop their poker faces.)

It's hard to hear awful things from a senior staffer who should know better like, "Have you all gotten tested for the Onco-Gene yet? You really should."

Yes. He really said that. At the end of our meeting, as an aside. As if he was throwing us a helpful health tip rather than tearing our already broken hearts out of our chests to juggle them.

It didn't help that this happened to be the guy from Senator Arlen Specter's office with whom I battled back in 2008 over the CCCA (which Specter finally agreed to co-sponsor after I called him out in the Daily News, then never backed when it came to appropriations when he had the power to fund it, stating that he firmly believes that only the NIH should handle disease-related funding, even though he has supported appropriations for breast cancer research, even though he is a three-time Cancer survivor himself who might have an idea of how horrible it would be for a child to undergo treatments that are, in many cases, more toxic than those to which he was exposed.) Is it obvious that I'm still somewhat bitter about it? I'm thankful that Specter has consistently worked to increase NIH funding. He just has never gotten the fact that those increases in the NIH budget never got to the kids.

What helps me heal, is what always helps me through the toughest times.

Family.

Friends.

Faith.

Seeing a hugely-successful benefit with the bright faces of people who "get it" certainly helped, too. I am so grateful for Chris and Gina Polizzi and all of the generous people who made the BBQ for Baldies such a wonderful event, adding over $6K to St. Baldrick's team 46 Mommas Shave for the Brave's total. They'll never know just how much they helped restore my confidence and strength.

Back to the business of motherhood I go. I'm already late preparing dinner.

Lazy

2010-07-06T16:26:00.000-07:00

Lazy writer.

I've neglected this spot.
I have been running myself ragged, running through the days at its expense.

Keeping busy, spending time with family and friends,
staying focused on events that open eyes and wallets to the need for more Cancer research specifically for children
is my medicine, my therapy.

Writing has also been a part of that therapy.

But it's a painful process.
It forces me to think, think deeply, breathe in and feel the sting of the painful images my brain just won't let me forget,
wrestling with the darkness, forcing myself to be thankful, to look around at the beauty that surrounds us in this life...

Rather, I report.

I list what is happening, where we've gone, what we've done.

I've become a News Feed.

*dislike*

Reduced to quick one-liners, status updates,
notes of consolation, commiseration, congratulations,
encouragement, and thanks.

This is not the Hallmark of my authorship.

It may be time to turn the page again.
No longer satisfied with summaries or abstracts,
It's time for chapters, for depth.

Well, at least I can attempt a meatier blog.

To do:
* Describe our trip to DC for CureSearch's Reach the Day
* Explain and describe the BBQ for Baldies
* Discuss the children

Now, I've given myself some writing assignments.
As for the deadline...

Bending instead of Breaking

2010-06-04T17:45:00.001-07:00

"... When winter floods the streams,
Thou seest the trees that bend before the storm,
Save their last twigs, while those that will not yield
Perish with root and branch." ("Antigone," 807 - 810)

Since Arden was first diagnosed, my husband and I had to learn to rethink our expectations for our family and our future. Variability, the possibility of change at any given moment, became our mode of living. We could only go day to day; plans had to be malleable, just in case she was too tired, developed a fever (which meant a trip to the hospital), had a clog in her central line (hospital trip,) or became dehydrated (yep, back to the hospital.)

We would do whatever it took to give her a shot at a long, happy life with excellent quality of life. That wasn't meant to be. Her death was the storm of the century for us, the beginning of a whirlwind that literally uprooted us.

Now, even though we can make plans for playdates, trips to the zoo, or going out to dinner with friends (sometimes still having to reschedule at the last minute if one of us -- typically one of the little ones-- gets sick, of course), I'm still trying to remember to be bendable instead of breakable. I've been broken, splintered into millions of little pieces, and in righting myself, I've tried to make the bonds holding me together stronger by allowing for greater flexibility. This means I must be ready for just about anything. Life is flux; we know all too well how drastically it can change at any moment. We try to remember not to take any of our loved ones or our blessings for granted.

Since Arden's death, I've been trying to absorb bad news as well as I can without letting it consume me.

There has, unfortunately, been much misfortune in our lives lately, in our country and around the world. Political battles, a disastrous oil spill of epic proportions and heightened tensions and violence between already volatile nations fill me with fear, sadness, and anger.

I've attended too many funerals for dear family members in recent months, one just yesterday for my sweet Great-Aunt Jay. I've learned of many losses, challenges and setbacks among my friends and in the childhood Cancer community. I need to feel the emotions, respond appropriately, and not lose myself in the grief. I need to be malleable, able to remold myself in order to face the next gale-force wind that threatens to topple me.

In the midst of such a tumultuous week, we had a personal scare with Zoey. An x-ray that her pediatrician recommended we get when she turned 6 months in order to check for hip dysplasia (which runs in the family) revealed an abnormality. I had to wait a week to find out whether she'd need to be put into a spica cast, which would go from her chest down to her knees, keeping her legs fixed in place with her knees out to the sides. It was possible she'd be immobilized for at least six weeks, just as she was beginning to navigate herself across the room with log rolls and some soldier crawling. Thankfully, today the Orthopedic specialist examined her and said that the degree to which she's "off" is very small. She won't need the cast after all; we'll just rescan her in six months to make sure the slightly shallow left hip heals on its own.

I had mentally prepared myself to be flexible, upbeat, to remember that it could be so very much worse. This is, at least, a fixable problem.

But we're breathing a huge sigh of relief.

Zoey gets her freedom. She will crawl this summer. She will be uninhibited at the beach, able to flex her toes in the sand and sit at the surf, feeling the waves tickle her shins, knees, and lovely rolls and rolls of thighs. She will cruise around the house, toppling toys and terrorizing G-man's perfectly organized trains and tracks in the fall. At least, that's the plan.

We get to stand down in our household, at least for a while. Maybe we'll even shake our own hips to a celebratory beat.

Until the next wind blows...

The Art of Friendship

2010-05-25T17:18:00.000-07:00

I really love G-man's preschool. It's on a farm. Literally, they have sheep, goats, a horse, a donkey, lots of gardens, and plenty of open space full of wonderful nooks with musical instruments, wind chimes, and other exciting tactile, natural treasures to explore. Like most preschoolers, G typically brings home a backpack full of colorful and creative artwork, which I dutifully display and then file in his portfolio, wanting to show him how proud we are of his efforts.

While he can name many of the classmates in his class picture, Grayson reports that one of them is missing, a boy named Luke. Luke wasn't there for picture day. They only see each other once a week, for about three hours. They've become such good buddies that the teacher has resorted to separating them, pairing them up with other friends to make sure they're socializing with their other classmates.

Last week, "May Fair," a benefit for local families in need, had transformed the school grounds into a carnival with pony rides, a helicopter amusement ride, all sorts of games, and other fun activities. It happened to take place on a Thursday, the day Grayson shares with Luke.

An invisible rope kept them tied to each other, allowing no more than about two feet between them at all times. At one point, we went inside for the face painting extravaganza, and I had to excuse myself from the room to find a place to nurse Zoey.

"What do you want painted on your cheek, G?" I asked.

"A GECK-o!!" he said enthusiastically.

"Ok," I said, making sure the volunteer artist had heard his request before I stepped out, leaving G with his teachers, classmates, and other parents.

When I rejoined them, I was surprised to see a rocket, emblazoned with "USA" rather than the gecko he originally wanted.
"What happened to your gecko, Grayson?" I asked.

"I gotta WOCK-et!" he said with a smile.

"Hmmmm. By any chance, does Luke have a rocket, too?"

"Uh-huh! We MATCH!!!"

They laughed and ran around together, sharing some secret bond of boyhood. A passion for trains, helicopters, airplanes, and other modes of transportation unites them, or perhaps they just "get" each other. Apparently, they both think falling off of their chairs in the middle of class is hilarious. "Monkey see, monkey do," Miss Sandy said, laughing while she described their antics.

Making sure I took down Luke's parents' names, phone number and email address so we could arrange playdates for the pair over the summer, I came away from that carnival with a warm feeling (not just from the sunburn on my face, since I had slathered it on the kids but neglected to do so for myself.)

This isn't Grayson's first friend. He has others, from home, whom he remembers and still loves to see when we can coordinate schedules for visits.

This is Grayson's first self-made friend, if that makes sense. This wasn't the result of an arranged playdate, where we get the kids together and pretty much teach them how to play with each other instead of side by side or across the room from each other, barely acknowledging the other during "parallel play."

I wasn't there to tell Grayson that Luke is his buddy. His teachers didn't force them to play with each other. They found each other, on their own. Each discovered something about the other boy that he liked.

When Luke was out sick for a couple of weeks because he had taken a bad fall and hit his head, Grayson told me all about it. He was genuinely concerned, not to mention very relieved when he found out Luke was ok (and back at school.)

It is an organic, independently-formed friendship.

Grayson has brought home some wonderful artwork, but I couldn't be more proud of anything else he's accomplished at school this year.

Mommy Can't Kiss Every Boo-Boo

2010-05-03T18:03:00.001-07:00

"OUCHIE!!!" screamed G-man, who made the unfortunate discovery that there had been an advantage to the extra padding his diapers once provided him when he would throw himself to the floor in past tantrums.

"Oh, sweetie, are you ok?" I asked, extending my arms to him for comfort.

"What's THIS???" he desperately inquired through sobs, pointing to his boy bits before grabbing them, obviously still in pain.

"That's your penis and your testicles," I answered, mustering up my mommy maturity to address the situation as calmly and as quietly as possible during the melt-down of all melt-downs. "Did you get hurt down there, buddy?"

"KISS IT!!" (*red-faced, tears streaming down his face*)

Now, before I continue, please remember that the boy is three. This request was in no way meant to be nasty; he has no idea of his sexuality, yet. It's just another boo-boo that he wanted Mommy to kiss and make better, as if he had skinned a knee or bumped his noggin. His was an innocent, completely natural assumption that I'd do the same thing in this situation.

"KIIIIISSSSSS IIIIITTTTTT!!!" (*more tears, choking, quick, sharp intakes of breath between wails...*)

"Oh, honey, I'm sorry, that's something Mommys don't kiss and make better. I can give you a nice big hug and hold you for a while," I offered.

"NOOOOOOOOO!"

Poor little guy. There was no way to explain it. I could only do my best to wait it out until he would accept the hug. There are some things Mommys can't kiss to make better.

We all learn this at some point in our childhoods. Perhaps not quite as viscerally, but eventually, we have broken hearts, broken dreams, challenged beliefs that not even our parents can help us heal.

The lessons get harder as we get older. Some things not even our parents ever imagine having to try to comfort us about. I can't imagine what it's like for a Grandparent to lose a grandchild and have to grieve and then worry about his or her own children as they mourn.

We appreciate the hugs, the long talks, the babysitting to allow us time to ourselves or time for advocacy events. Of course nothing will make the hurt go away altogether, but the hugs help. Eventually, slowly, we find some sort of healing. Not without deep scars, of course.

As we approach Mothers' Day, I wanted to thank my mom and my mother-in-law, for everything. I couldn't begin to explain the lengths to which they go, striving to be there for us, offering a kiss, a hug, anything to make it better.

We love you, Mom and Lil.

As Clear as the Hand in front of Her Face

2010-04-28T17:28:00.000-07:00

It's utterly fascinating.

This thing, this wonderful, soft, shape-shifting object that she holds in front of her eyes, slowly turning it so she can observe it from different angles, bringing it to her mouth, taking it out again to look to see if it has changed, this thing: her hand.

She watches intently as she flexes the fingers, curling them in, then straightening them again.

She shakes it. Lifts it above her head.

Magically, she can make it return. Her eyes widen. It's incredible. And it's hers.

Watching my five-month old Zoey discover her hands and feet reminds me how silly I am to let so many distractions swirl around my head and take me away from the simple beauty of what is right in front of me.

I certainly have much on my mind. Advocacy in the midst of motherhood makes for an emotionally exhausting existence. Advocacy inspired by grief, pain and guilt can certainly become obsessive if I'm not careful. I'm not going to stop my efforts to spread awareness and raise funds for Childhood Cancer research, to be clear.

But it shouldn't stop me from marveling at this adorable shape in front of me, holding her toes, twisting herself, arching her back, successfully flipping onto her tummy and looking up at me with pride in such a remarkable accomplishment.

She is life. She is beautiful.

We are blessed.

There is another side of being an Onco-parent, one that strips us of the full enjoyment of watching our children develop. Typical childhood symptoms -- bruising, tummy aches, fatigue, constipation, diarrhea, vague causes of pain -- send us right back to the state of worry, stress, agitation. Could it be? But it would be rarer than rare for a sibling... but it happens... it does happen. Do I ignore this or take it seriously? By the time we found it in Arden, it was stage IV, high risk - bone mets.

I wish I could say we can turn these misgivings "off," just enjoy life and our children, but somehow, we still carry the disease around with us, sort of like being haunted by its ghost. Neuroblastoma may no longer be a part of our lives physically, but it still has a grip on us emotionally. Its spectre still eats away at our confidence as parents, that reassurance that for the most part, everything is going to be ok.

I took Grayson to the pediatrician this week for a series of accumulating issues.

He's fine.

I think.

To her credit, this doctor took me very seriously. We went over his symptoms, one by one. She asked me very specific questions about other symptoms -- whether I had observed he was exhibiting them, one by one.

He's fine.

She thinks.

She recommended getting him an ultrasound, just in case. Just for peace of mind. We have a good excuse (other than the fact that our daughter died from a deadly disease, ) in that we've been monitoring a kidney issue he's had since birth called Hydronephrosis (which is not life-threatening, just reflux between the bladder and kidneys.) It is a non-invasive test, one that would not subject him to harmful radiation. He's had so many before, he just throws back his hands above his head and giggles when the wand goes across his tummy.

I'm not about to put him into a CT scanner for peace of mind. They'll let us know if we need to take additional screening steps.

He'll be fine.

He is life. He is beautiful.

Despite our curse, we are blessed.

Oh, and by the way, he's a big boy, going on the potty now.
That's a first for us in this house.

The Not Ready For Prime-Time Parent

2010-04-12T11:13:00.000-07:00

I misjudged the traffic situation. The road had been fairly kind to me, the lights, not too long.

Sipping the mocha latte I had purchased to help pass the time while sitting in the parking lot across from our local NBC affiliate's studio, I felt more than a bit stalker-esque. The interview was to take place sometime between 5:30 and 6. Live. My call to report to the studio was at 5.

It was 3:30.

I tapped away on my Blackberry, stealing glances at encouraging emails and facebook posts from friends who assured me I'd be great; I'd do just fine. I double-checked my sheet of notes of what I wanted to cover: the names, numbers, the key points.

By 4:30 the latte had kicked in, and I knew I would have to sheepishly show up at the studio too early. I drove over as non-chalantly as I could, marveling at how easily I found a good parking space, right in front of the entrance. I casually strolled in front of the security window, gave my name, signed in, and was granted access to the foyer. While I waited for my escort (for no guest dares walk the halls of NBC without an escort,) three different flat-screen TVs flashed images of the local broadcast, MSNBC, and CNBC. So many words, so many stories, so much information at once.

The stair door opened suddenly. A girl with perfectly straightened hair and baby-smooth pink cheeks greeted me with, "You're early."

"I know. I'm sorry," I replied. "Who knew City Line Avenue would move so well in the afternoons?" I said with a light chuckle.

WIthout even a smirk to acknowledge my excuse, she turned, started up the stairs and murmered, "Follow me."

When we reached the top, she asked, "Do you need to use the ladies' room?"
"Oh, thank you, yes. That will be great!" I said a little (or a latte) too enthusiastically.

After I washed my hands and inspected my teeth in the mirror, I turned to exit. On the door, a huge white sign with red letters admonished, "IS YOUR MICROPHONE STILL ON??" Huh. A little late for that warning, isn't it? I thought to myself.

I was taken to the green room (which is, actually a bright hue, somewhere between kelly and avocado), where I spent the next hour. It was quite peaceful, actually, quite calm. Checked a few more encouraging texts and emails, played a little Blackberry brickbreaker game, checked in on the news program. I could have watched Oprah if I wanted, but that would have been somewhat disloyal, I guess.

At 5:25, a teaser. My daughter's face, her arms and hands working together to open a package. The story is going to happen. This is for real.

My girl-woman escort arrived at 5:30 to take me to the studio, greeting me with a smile this time (perhaps because I was a good little guest and didn't disturb anyone during my wait.) She showed me where I could sit, a chair with a view of the entire live news studio.

Coooooool.

I got to see the Weather Center, the news desk, an alternate news desk, the interview chairs, the "stand up" location, just about every in-studio backdrop they had was in my sight. With awe and respect, I noted a few impressive things.

* All of the women -- Tracy, Lori, LuAnn -- can walk in 6 inch ridiculous heels across the studio without tripping, falling, or making a sound.
* Lori Wilson can go from standing at one mark while reading the news, to crossing the studio and resetting at another desk, all the while reading an live voiceover for a videoclip without missing a word of text and without sounding like an automaton.
* The cameras in the studio move like the robot from Lost in Space (no operators in sight; they just silently glide into place across the studio floor.) I thought at any moment one of them would turn to me, flap some of the black tubes at either side, and say, "Danger, Amy Bucher! Danger!"
* The stage manager was the most unflappable, smoothest, nicest professional production person I've seen. He knew the entire flow of the broadcast, gave clear, concise directions, and kept everyone at ease.
* Glen Hurricane Schwartz does those "riffs" about El Nino and whatnot off the cuff. The dude really knows his Meteorology. He can also polish off a whole apple between weather segments without the noise of his bites getting on air.

Lori Wilson was my interviewer, and she was very, very sweet. She expressed her condolences and said she really hoped our team's goal would be reached and that we would get picked up nationally. She gave me clear instructions to look at her, so that the interview would look like a conversation.

Of course, when the camera turned on, I promptly forgot those instructions. It seemed like she was interrupting me, but I think she was trying to reign me in (knowing I'd probably go on and on if she didn't) and ensure the key points about the 46 Mommas were made during our brief time.

While I wasn't completely happy with my own performance (about which I whined over here,) overall, the day was a success. I received some wonderful and uplifting feedback from family and friends that really lifted my spirits.

Too bad I was struck with a nasty case of Strep overnight that lasted the rest of the week.

I keep worrying I had infected the entire NBC staff. I hope not, as I'm really praying they'll continue to follow our progress and to root for our story.

Keep eating those apples, Glen.

View more news videos at: http://www.nbcphiladelphia.com/video.

Sunday Fun, In Memoriam

2010-03-23T05:44:00.000-07:00

On a sunny Sunday, we visited a beautiful garden, freshly cleared of winter and storm damage, ready for new growth, with blooming purple and white crocuses and the green leaves of daffodils and tulips holding the promise of bright color, fragrance, and warmth in the Spring days to come.

Grayson characteristically bounded ahead of us down the pathway, causing me to warn, "Do NOT step on the green cover!" A vision of him tearing through it, tumbling to the semi-emptied, definitely moldy pond water below it burned into my mind. He dashed by it and began exploring the pathways around and about clipped shrubs which sprouted new growth, buds clinging tightly around the blossom secrets they were keeping.

He wanted the wall. He wanted to scale the rocks, walk across it, run across it, do just about everything possible to make my heart race and my head fill with more scenarios of falling, of holding a crying, bruised, bloody boy in my arms.

"G! Please! G! Come here! Do you want to sprinkle the petals?"

"YEEEAAAAHHSSSS!

"Ok, no more running. This is a special place. We don't run across the wall here."

It's the Memorial Garden in which Arden's ashes reside.

There are others resting here, too. Fathers, mothers, sisters, brothers. Our former pastor, whose spot is marked by freshly overturned earth.

We try to preserve the dignity of the place. I know, however, that for my son, it is just another beautiful spot to play.

He knows we come here for Arden. He says, "Hi, Arden," as he throws handfuls of pink and yellow dried rose petals over her spot.

I wonder if he gets it, though. I wonder if (or when) this place will change for him, if he will one day approach it slowly, solemnly. I hope not.

For me, visiting her resting place isn't really something I feel compelled to do all of the time. She's not "there" to me; I feel her presence much more strongly in my heart. I never feel that far away from her.

So why visit? Why look at a patch of mulch that most certainly brings up tears and reminds us of the loss?

I don't know.

I do know that watching G-man run amok through the bushes as we chased him down, shushing him, did something else for me. For a moment, I saw her running ahead of him. For a moment, I saw her hiding behind the shrub, peeking out to see if he's chasing her. For a moment, we were all together, complete.

Seeing the color return to the garden reminded me of the color returning to our family. We have our damage. We continuously work to restore the ravages of what we've endured. We will tend to our lives, just as lovingly as the volunteers at the Church of the Advent tend to this blessed spot.

I hope, for Grayson, it never ceases to be a place to enjoy, a place to run, hide, take in and take with him. I hope he introduces it to Zoey this way, so she can play, have fun, and celebrate the beauty of this life there, too.

Look at me, daring to envision our children in the future.

Mom, Interrupted

2010-03-03T10:17:00.000-08:00

“Do children age in heaven?”

Stop it, brain. It’s not a fair question. I’m just standing here, trying to blow dry my hair. Now is not the time. Don’t think, Amy. Just brush and point the dryer towards your head. Brush, curl under, dry. Blink. Blink again. Don’t you lose it now. Look away from the mirror. Don’t look into your own eyes.

“Seriously, though. All those birthdays that will pass before you pass. When you finally get to join her, will you know her? Will her hair have grown back? Will she know you?”

Of course she... hey! Stop that! I don’t want to think these thoughts. Stop making me think these thoughts. Just let me slather this foundation on my face in peace, stupid brain.

“But what if you’re old? Like, really, really old? Wrinkly, shapeless, completely beyond recognition?”

DUDE! What a time to mention wrinkles! Ok, ok, fine. I’m supposed to get past this, keep my act together during the five minutes I have to get ready in the morning while Zoey’s napping (or before G-man busts into the bathroom with his own version of 20 questions or a summary of the latest Thomas story he’s seen.) This is what I think.

I believe there is a polarity of sorts to our souls. The bonds we’ve formed in our lives, the unconditional love we’ve shared with our children, spouses, and life-long friends is permanently imprinted, so that no matter what we look like, no matter what our physical state while we’re on Earth, in the spiritual world, whatever form it may take, we still find each other; we're able to hug and hold onto one another, forming an amazing positive energy for all eternity. I don’t know if this theory follows any established tradition (I’m not about to try to justify it with any biblical annotation); I really don’t think it matters. All I know is that it gets me through the pain of the not-knowing.

If I’m being observant, when the little, silly material stuff doesn’t hamper my attentiveness, I can almost see and hear her here. I just have to look into Rick’s, Grayson’s, or Zoey’s eyes, feel the love that so deeply runs through our family. When I listen for the influence Arden’s life had on others, I get a glimpse of that positive energy. In that way, she’s already found me.

So there, brain. Quit bugging me about it today.

“Until tomorrow...”

"Thanks, I just had it stuffed."

2010-03-01T11:54:00.000-08:00

The Canadians won the most gold in Vancouver this year, but they didn't really leave us with a golden image of their country (not even a Molson Golden one.) What did we learn from the opening and closing ceremonies of the 2010 Olympic games in B.C.?

* Sometimes, big plans, like big mechanical phallic torches, just don't work. But that's ok, because it's funny to look back and make fun of our mistakes.

* It's important to respect the native nations. Apparently, forcing them to perform tribal dances for over an hour while athletes parade past and file into their seats is the way to show aforementioned respect. They endure, get it? Get it?

* Try not to take yourself very seriously. If you're known for being polite and apologetic, be further endearing by ridiculing yourself and then saying, "Sorry, eh!"

* When representing a country in a performance, exploit the stereotypes. So, you're known for hockey? Make humongous cut-out players stride across the ice and play an blown-up version of fussball with a kid dressed up as a puck. Your police force wears a highly identifiable red uniform? Dress everyone in it. Dancers, singers, ushers... whatever. Oh, what the heck, bring out about twenty-five giant ones, just for fun.

* Take symbols literally. Go ahead and put those maple leaves on everything - even women dressed as Britney-eqsue schoolgirls with exposed midriffs - and make them shimmy and play peek-a-boo. Then, bring on the beavers. Big, blown-up beavers. That's right. Make your jokes.

Wait a minute; something went wrong there. The attempt to be dignified and solemn at times, honoring the memory of Nodar Kumaritashvili and acknowledging the success of the games, despite such a terrible loss and the uncooperative weather conditions, devolved into a shamelessly over-the-top hot mess on ice, with Shatner hinting about shagging in canoes and O'Hara clicking on pictures of pee in the snow. I was expecting Terrence and Phillip cut-outs to be wheeled out to serenade us in their own special way at any moment (they're Canadian, right?)

Have all of the other countries lost all sense of creativity or just giving up attempting innovation in the wake of the visually imaginative spectacle put on by Bejing in 2008?

The Russians didn't give me much hope for the future, either. Zorbs? Really? That's the best we can do? Maybe they should have used huge inflatable Smirnoff bottles. That, at least, would have fostered some sort of continuity.

Just let the athletes party. Or just let them go home and sleep. They deserve it. We would have been fine with the stock aerial shots and overview footage provided in the first hour by NBC. Games over. To misquote King Arthur (the Monty Python version), "Let us not go to Canada. It is a silly place."

Maybe this winter has been too long, too cold, and too snowy for me, and I'm being a bit harsh.

My review of the Philadelphia Flower Show should be much brighter.

Present

2010-02-25T05:43:00.000-08:00

Fuzzy head,

hair thinning on top,

cradled in the nook of my arm as I type,

she sleeps.

Her brow is smooth.

Lashes fan across her pink cheeks.

Lips occasionally purse, nursing in a dream.

They open, releasing

sugary sweet breath.

In a moment, this will all change.

All that is soft and silent,

warm and still

will begin to tense, wriggle and writhe.

Rolls of thighs and shins moving back and forth,

Arms pulling up, hands reaching towards ears,

Back arching, knees pulling up,

her body forming the reverse C of a stretch.

A squeal will tell me whether

her pangs are from hunger, whether

she'll return to rest

or need nourishment.

In a moment, all this will change.

*snap!*

Take the mental picture.

Store it away --

saved for later,

when she’s just a blur,

running, twirling away from me,

growing, going, gone.

For now,

she’s here, present.

Try, try very hard not to remember

how quickly it will pass

and be the past.

Dare not envision the future.

Still hurting from the loss

of what it would be, should be,

what it was supposed to be.

Instead, be still,

be here.

Gently kiss that fuzzy head.

Conflicted Peace

2010-02-23T18:11:00.000-08:00

This is going to be difficult to describe.

When days are hectic, when I've overbooked the schedule, and I'm under stress -- the house looks like we've thrown all of the toys and magazines into the air and just let them rest where they fell, I stub my toe, my back hurts, the kids are fussy, I've managed to forget an ingredient at the store, one of Grayson's mittens is hiding somewhere at his preschool, the washing machine chewed up and spit out a few of the baby's socks, I'm scrambling to get bills paid, phone calls made, emails answered, cards sent, appointments scheduled, and somehow have time to get down on the floor to play with each child -- I know I'll get through it. I know I'll be ok. These are little matters, indeed.

I'm generally ok and not ok at the same time.

We're not in and out of the hospital. We're not juggling clinic appointments. We're not where we were.

Whatever I'm doing, wherever I'm going, when things seem normal or when we're just generally trying to enjoy ourselves, there's an intense guilt. I'm not even sure if that's the correct word for what I feel. It's a mix of emotions that bundle together in a supernova that threatens to explode from the heart.

We're ok because we're not ok.

If it meant we'd be together, I do it all over again. Maybe that's selfish. Of course I wouldn't want Arden to be sick or to suffer. It wasn't supposed to be like that. She was getting better. She was beating Neuroblastoma. She was N.E.D. No Evidence of Disease. Her weakened immune system (thanks to the treatment that was attacking the cancer) couldn't fight off a cold. A germ. Something that would cause some mild to severe congestion in most of us. In the end, it was the life support that took her life. That which sustained her for six weeks became too much for her. Oxygen can be toxic. The pressure of the ventilator and oscillator can do damage. We knew that. We still thought she'd make it. We thought she had a long fight, a long life ahead of her. We were prepared to be in it for the duration.

We move forward. We still live day by day, yet we can now make plans for weeks in advance. We smile, laugh, complain about the weather and the economy. It's all so normal. Even though it's not. We're in it for the duration.

I told you it was difficult to describe.

I just hope Arden understands. We miss her.

The Unusual Suspects

2010-02-11T16:30:00.000-08:00

I'm not sure if I just wasn't paying attention before now or what, but lately I've been encountering an uncomfortably recurrent stock character in stories I've read or seen on t.v. She's the bereaved, the bereft, the bitter mother who has become so consumed by her grief that she either turns completely away from the world or against it.

*Bong! Bong!* The familiar gavel pounds of Law and Order, the ubiquitous cable cop-drama corpus, made me jump slightly as I watched two unrelated episodes (granted, that were probably produced a couple of years apart) featuring moms who lose a child and then lose touch with reality, committing some horrific act of violence against another parent or child. (I know -- my afternoons during Grayson's nap consist of nursing and rocking Zoey while watching the tube or reading.) The detectives automatically deduce with a shrug and smug quip that intense emotional suffering of grief caused the perp to kidnap or murder. Of course. That would drive a mother criminally insane. Naturally.

I faced yet another encounter with the mad bereaved mama in a book club selection, The Thirteenth Tale. It's a fantastic novel, deliciously Victorian in style and in its many allusions, so it was right up my English-major alley. Despite its homage to the various gothic trappings mimicking the sensational and sublime spookiness of Otronto or Udolpho, I found I was most frightened by one of the secondary, stock characters. She was the mother of the narrator. She was basically a drifting, living ghost, so paralyzed by her overwhelming sadness that she couldn't communicate with her own daughter, the twin of the deceased. She can't even bring herself to acknowledge or join in the girl's birthday celebrations (which were hushed, one-on-one meetings between the child and her father, who hid any trace of it from the mother.)

Why did this woman disturb me more than the others? For me, shutting down, completely disconnecting emotionally is probably the most tempting thing when experiencing the physical pain of grief. It can seem like way too much, it can buckle the knees, send spasms across the shoulder blades, send an entire body into seizures of keening. These are the scenes we try to conceal, the times we shut ourselves away in the shower, in the bedroom, in a closet. This woman shut herself away within her body. She was a shell. No need for hiding. She was barely even present.

Murder and mayhem haven't entered my mind, but numbness certainly has crossed it. Depression is a sinister, monstrous foe, not easily conquered once awakened. There must be a reason behind the fight that is more powerful than the reason for the beast to claim victory. I won't divulge spoilers for anyone who is intrigued and wants to rush out to read Diane Setterfield's bestseller, but I will say I was literally horrified by the emotional neglect suffered by the narrator, the surviving child, who bears deep psychological scars from the lack of a relationship with her mother as a result. It is an absolute nightmare to imagine my living children should suffer any sort of loss of connection or emotion from me because of depression related to my grief over their sister. I can't let that happen. No way.

Perhaps new stories need to be written about bereaved parents. We're beyond Ordinary People. We don't all become afraid of living or allowing our children to experience life like Marlin from Finding Nemo. Of course, everyone grieves differently, but it is important for people to understand that while we are undeniably changed when we lose a loved one, we do not necessarily have to disconnect from the world emotionally, physically, or morally.

We still have a choice as to how we handle each day's challenges. We can still engage with the world and the people who care about us.

This is not about how others judge or view us. It's our responsibility towards our loved ones, especially our children. They will grieve with us; they can share their own emotions if we let them in. We also need to celebrate with them, to laugh with them, to teach them that it is possible to move forward, to love and live fully, even with such awful heartbreak.

So I guess I should stop complaining and start writing. Do you think they want you to include the *Bong! Bongs!* in a Law and Order spec?

A Visit

2010-02-04T08:03:00.000-08:00

She sits.

She waits.

I went to visit my grandmother in the hospital on Sunday. Out of respect for her privacy and out of fear of the great and powerful HIPAA law, I won't divulge the reasons why she was admitted last weekend. She insists it was all very unnecessary. They never told her what she had to do while waiting in the observation unit in order to be discharged and sent packing. She says, had they told her, she would have done it, and that would have been the end of it. She didn't. It wasn't.

It's not easy for me to walk through the halls of any hospital.

I do it because I know how it feels when a clean, smiling visitor smelling of the outdoors comes into the sanitized room. I do it because I know, even if it's just a 15 minute conversation, a visitor can completely change a patient's day. I know how long the days are, how undignified it feels for a patient to be examined, poked, prodded, and then left to her own devices for hours at a time when her sheets need to be changed or she needs assistance getting in and out of bed. I've been there as a patient, and I've been there as the mom of a patient. My Grandmother doesn't have a mom to sit vigilantly by her bedside. She has my Uncle John, who faithfully went to her every day, divining what the doctors were recommending, ordering her meals, making sure she had what she needed. She has my cousin, Chrissy, who was able to visit her on a regular basis, since she works in the building. I know Chrissy also went on her days off.

All Grandmom wanted was freedom.

I arrived to find her staring at the Aria Health message on her TV. She was confused, asking me if I knew how to pay for the TV service. She was trying to call the nurse from her phone. "Let's try the call button," I said.

The nurse entered in a rush of papers, saying loudly (presumably so they could hear her back at the front desk, ) "ISN'T IT WORKING YET? OH, HERE'S THE PROBLEM. YOU-HAVE-TO-USE-THE-CHANNEL-CHANGER-TO-CHANGE-TO-THE-CHANNEL-YOU-WANT."

"Thank you, oh, thank you!" my Grandmom said, her syllables seasoned with German accents. She beamed with a relieved smile, and she proceeded to introduce me to the nurse, providing us with that awkward, oh-yes-very-nice, conversation of people who knew they'd likely never meet again. I had given Grandmom my prayer shawl, the one knitted by women at our former parish, the one I wore while praying by Arden's bedside. I wrote in her card that I wanted her to be reminded of all of the family's love and prayers, even when we couldn't be with us. "Tell her. Explain it to her," Grandmom said.

I murmured the summarized version of our story (always difficult to breeze past the Neuroblastoma part), and without looking up from the sheet she was snapping into place, she said, "Oh, I'm so sorry." At least she didn't shout that time.

"Ve haf a close-knit family, no matter where we are," Grandmom said proudly.

"We're trying to convince her to go to a step-down rehab unit," the nurse said after a moment. "She doesn't want to go."

"No, no," my Grandmother said, her short smile quickly turned to frown. (Was it pain? Sadness? Is she angry that she has to be there in the first place? Likely all of the above.)

The nurse left. Grandmom's voice dropped to a whisper, "They only vant more money, Amy. They make you do all sorts of exercises, put you through pain, terrible pain. And they can come to your room at any time of day, telling you to do this, and that, even if you're tired! They don't care! They don't listen!"

"But Grandmom, I think they want you to get stronger so you won't land right back in here again," I protested.

"No-h, no. I just vant to go home."

"I vant to go home." Her face was set. Her voice, steady. She wants to be at home. She wants her own t.v. set, her own chair, her own bed. She wants her dignity, her freedom.

She was discharged on Monday night.

I'll be taking her some beef stew for dinner. Beef stew to ease the aches, to fill the void. To apologize for the ravages of age, for not being able to make the remaining days of her life wonderful, dignified, devoid of ailments, embarrassment, and loneliness.

She sits.

She waits.

Lactivity

2010-01-27T12:46:00.001-08:00

It’s time to talk about breasts. Mine have been employed for their natural purpose for the past couple of months, so I contemplate them quite a bit. There are way too many idiosyncrasies in the breastfeeding world that need to be explored, even if the topic may unsettle some or make them quickly change the subject if it’s mentioned aloud. Here, I can give fair warning, so those who may find boobology and its associated lexicon uncomfortable can click the box to close the window and move on with their internet-browsing.

I am not a lactivitst. I have seen well-meaning mothers absolutely torture themselves, trying to breastfeed when it just isn’t happening for one reason or another. I will say it’s messy, uncomfortable, and downright painful for me. I have not found that sweet, wonderful bonding experience. It has never felt “good” to me, physically. I do it because it’s supposed to be what’s best for the kid. We’ll see. I certainly don’t think that it is for everyone or that every baby will naturally “get it”, nor would I start to lambast anyone who has used formula. I did.

My first daughter, Arden, and I struggled to get established, thanks my flat, inverted nipples (who knew?) and her spirited, strong-willed, resistant personality. Somehow, with the help of a consultant and some interesting futuristic-looking nipple shields (and not the Janet Jackson, “Oops, it was a wardrobe malfunction” sparkly type), we made it to almost 8 months. Then, she bit Mommy and drew blood where blood shouldn't flow. She had 8 teeth already! She transitioned smoothly to formula and table food once I ran out of frozen supply. Neuroblastoma still erupted, despite our best efforts to be healthy and keep her on a nutritious diet.

Arden’s brother, Grayson, the healthy one, would have been a fantastic nurser. My anatomical problem had disappeared, and he latched on easily from the first attempt. We didn’t anticipate the sibling jealousy that would erupt once we were home and trying to make it part of our normal routine. Arden (11 months prior to her diagnosis) was having none of it. Despite my efforts to distract her with books, crafts, or other interesting things to do with me, Arden would roughly bop the G-man’s head whenever she could get to him if he was feeding from me. If I gave him a bottle of expressed milk, we had no problems. Instead of struggling and arguing with Arden and trying to put her in time-out during her brother’s feedings, I decided to pump for him while she was up. By the end of the first month, he got lazy at the breast, and I was pumping full time, using the expressed milk in bottle feeds. By the end of the second month of keeping up the pump-feed-wash bottles-care for two under the age of two-marathon, exhaustion had set in, and we transitioned him to formula. He’s never had an ear infection. He’s made it past the age Arden was diagnosed with Cancer. Go figure.

Now, our third, Zoey, is a fantastic nurser, and Grayson doesn’t seem to mind that this is the way she gets her feedings. She loves it so much, she wants to keep up the “every 2-3 hours” schedule. This means that Mommy gets very little sleep. This means Mommy can get irritable during some situations and downright goofy at others. I giggle when I think of how versatile and magical breast milk seems to be in those first few weeks. So, the baby scratched her face? Put some breast milk on it. It heals in a day. Cracked, sore nipples? Best remedy is breast milk. It’s the duct tape of the infant-mothering world! Then, there’s the hysterical, if brutal irony that the other person in our household who appreciates the ample supply that amplifies the size of my boobs won’t get to go near them for another 8-10 months! They’re just too sensitive. Sorry, dear. By the time he gets back to them, they’ll be reduced to chicken cutlets once again. (Cue: trombone descending timbre - Whaah, whaaaaah.)

I’m thankful that Zoey is gaining weight steadily, working to catch up with her height percentile (at her 2 month check-up, she was at 45th% in weight, 85th in height.) I’m just at the stage where I’m less than patient when it comes to looking for her to drop more feedings. I’m so tired, I’m constantly hungry while swallowing some pretty fierce emotions at the same time, which isn’t good. Somehow I’ve managed to find a way to gain weight while nursing! (It’s supposed to be the other way around, where the pregnancy pounds just melt away! More than a few women are shaking their heads with me right now, saying, “Yeah, right!”)

So, I’ll keep waiting, anticipating, hoping that she’ll surprise me one of these nights and sleep through. Sure, I'd suffer with swollen, sore boobs in the morning, but I'd take that for a blissful, uninterrupted full-night's rest. At Christmas, Rick and I invested in an elliptical machine, and my parents got us a Wii. For my birthday, my sisters and parents surprised me with a Wii Fit Plus. I’ve got everything I need to start myself back on the track of physical fitness. Now I just need to find the time and energy to keep up my efforts. Maybe I should try switching to having coffee with breast milk. Oh, no she di’ in’t!

Note to self: try not to blog while on very little sleep.

Note to self: try to be more proactive when writing notes to self.

Quoth the raven, "Nevermore!"

2010-01-20T06:38:00.000-08:00

Grayson has a new love. For Christmas this year, he received a wonderful Haba game called "Orchard." It's colorful, fast-moving, interactive, and entirely age-appropriate for him. I've played it probably three hundred times or more since we opened it up. He gets anyone who walks in our door to play it with him as well, so Grayson likely has played it about a thousand times.

The game is simple enough. True to its title, four healthy fruit trees adorn the game board. Most of the set up involves placing little cherries, pears, apples, and plums on their respective trees. There is a die with colors corresponding to the aforementioned delectables on four sides, a basket (meaning the player can choose any two fruits) on the fifth, and a black, foreboding raven on the last. The player who rolls a raven must add a piece to a puzzle. (And according to G's rules, that player must scream, "UH-OH! RAAAY-VEN!") If the puzzle is complete before all of the fruit has been harvested, the raven wins.

It didn't take me long to start pondering this game's larger significance. (Warning: English major without a classroom alert!) When tragedy strikes, the tantalizing, torturous question inevitably arises. Why? Why do the people in the poorest nation in the Western hemisphere have to suffer so much more because of natural disaster upon natural disaster? Why do people choose to make others hurt by taking children, taking lives, committing seemingly random acts of violence? Why do people get terminal illnesses? Why do children get sick? When they've had years of relative health after reaching remission, why must they relapse and face "non-curative" treatments? Why do awful, unthinkable things happen to such good people?

Some find comfort in "It's all part of God's plan." I have difficulty with that one. I really don't think God is sitting somewhere, the strings of fate in front of him, cutting some short, adding disease to others, muttering to himself, "Sorry, Dude. It's all for the greater good." It makes it too easy to blame God when we are challenged. To me, what happens to us on Earth is about as random as the roll of the die. Sometimes, we get to harvest some experiences as beautiful as the crimson cherries, as delicious as the crisp apples, juicy pears, sweet plums. What we do with them, how we appreciate them, can result in even more satisfactions. Make pies, tarts, celebrating their flavors, drawing them out with other sweet ingredients. We can also let them rot, never enjoying or appreciating them at their peak. Sometimes, we get baskets of goodness, an abundance of such joys. The next roll, however, could be that nasty raven.

How we react to getting the "bad" roll can make all of the difference, too. My three-year old son, to his credit, has not reached the age of pouting, of cheating, of trying to get out of the consequences of it. He just delights in saying, "UH-OH, RAVEN!!" He moves on, knowing the next roll could be a cherry or a basket. He knows we'll get to try again if the bilious bird wins the game. He kicks up his legs in delight that we're getting to play. He loves life. Don't get me wrong, I fully expect to have those talks with him later, when losing isn't so much fun, or when he explodes, picking up the board, launching colorful little shrapnel which embed in couch cushions and corners of the room, shouting, "IT'S NOT FAIR!" I'll likely have to start explaining this metaphor with life, trying to avoid the generalized cliche. We've already started the "We don't always get what we want, when we want it" conversation. I try to stifle my urge to launch into the Rolling Stones, "You cain't always git whut you wa-ant." I don't get many eye rolls from him, yet. That song would likely guarantee one.

The raven is also reminiscent of the Edgar Allen Poe poem so many of us have memorized, either in middle or high school. In it, the unwelcome feathered intruder tortures the speaker, taunting him with the idea that his beloved Lenore is forever gone, that he will see her "Nevermore." Rolling a raven in this game could also be the experiences that threaten to shake our faith. As a Christian, I disagree wholeheartedly with the perched one. We will see our departed loved ones again, a promise that was made to us by Jesus's sacrifice. When fear and grief set in, we lose more than ourselves. We give in to despair. The raven wins.

What got us through some of the most difficult days during Arden's treatment post-diagnosis was avoiding the question, "Why." We knew we'd never get an answer that would satisfy us, anyway. Instead, we accepted that unlucky roll. We tried not to whine and pout about it. We try to gain purpose and perspective from it. We fundraise, donate, do our part to help. We pray. Some days are harder than others. As for God's role in it, I like to think of him (dare I speculate - her?) as the concerned spectator. Unable to change the cast of the die, God watches how we handle our bounty and our pain. So, how do we pray if we can't ask for the outcomes we want? We pray for spiritual guidance, for comfort, for peace of heart and soul, especially when our faith is challenged. It's more difficult to be angry with God if we remember He never abandons us, always loves us, always cheers us on and hopes we make good choices. That's what makes me want to keep playing, thankful for the opportunity, even when I feel like I need a break because it has gotten monotonous or I'm sick of seeing that stupid bird.

Oh, and Grayson is very conscientious about cleaning everything up and putting the pieces away neatly when we are done so we can be ready for the next round. On second thought, I'll leave environmentalism out of it for now.

Too much? Maybe I should stick with the Wii.

No more Whining

2010-01-13T12:54:00.001-08:00

It's a been difficult to post lately.

My daily woes just seem so very insignificant when I check in on children and families battling Cancer or click on NBC and see the entire nation of Haiti crumbling. My prayers go out to all of them.

I've been getting through ten days without Rick since he is away on business, and I've been a spoiled brat. I just wasn't sure how well I'd handle getting to appointments and preschool without help. It came in the forms of my in-laws and my parents, and when they can't be here, my friends jump in to help. I should be able to handle the day to day challenges on my own, but for some reason, I'm scared. I fear my lack of sleep; I fear my emotional uncertainty day by day; I fear every cough, spot, bump, bruise, or unexplained tears from my children. I cover this fear fairly well. Years of off-off-off-off-not-even-close-to Broadway theatre experience (not to mention the perfecting of my Mommy-"everything's ok"-mode when everything's falling to pieces) help in that department. However confident I may appear on the exterior as far as the parenting gig goes, inside, I'm a shaking, weepy mess. Having another adult with me, even just to witness the chaos of the sudden tandem toddler tantrum and infant wailing melee and see me through it... helps me avoid completely losing it and screaming, "I'VE HAD ENOUGH!!!"

See, I'm supposed to be appreciating these moments. As a bereaved parent who watched her child suffer through Cancer treatment, I'm supposed to know better, to understand how precious the brief time we have with our kids is, how lucky I am to have these two healthy pups, even when one of them smears poo all over his toys and stuffed animals then empties the contents of his pj and underwear drawers during his nap. (Yeah, that actually happened.) I do, I know, really I know, and it drives me insane with the guilt of 1,000 mothers when I feel so very weak inside. This Mama bear doesn't deserve her comfortable den.

I'd love to be able to shake myself silly sometimes, a dog sloughing off the last drips of an unwelcome bath, to snap myself out of the maternal minutiae. Grayson will be ok. (Everything was either washable or trashable.) Zoey will be fine. I'll start getting more sleep eventually. Zoey won't grow up thinking she was nursed by a muppet, even though my robe must make me look like one. I'm not sure anyone went insane because a three year old made her play the same board game ten times in a row or because he said, "I want tah-zert" about five hundred times from the start of dinner. We'll get through this, all of this.

We're safe. We're home. None of us is hospitalized. One of us is in heaven.

I have to be ok with that.

Effektiv Communikation

2010-01-03T18:41:00.000-08:00

In our ongoing efforts to organize our office, we made a return trip (with two cars this time) to the big blue and yellow warehouse of horrors, Ikea. If anyone can get us to find the bookcases, file drawers, cubbies, and desk space we needed to finally get ourselves together, it's the Swedes. I wandered the impeccably designed spaces lined with impulse-buys and gadgets with unknown purposes and unpronounceable names, listening to once-harmonious couples argue about room size, proportions, colors, and the ever-so-often repeated, "I just don't know about that piece." I often wonder how many people leave that store with design dreams crushed and, for that matter, how many car roofs with the weight of unplanned Ektorp sofa purchases.

Guiding our hungry preschooler with one hand and directing the stroller towards the elevator with the other, I went back up to the cafe for some meatballs, kiddie-portioned pasta, and well-timed, clandestine nursing while my other half lugged dual carts stacked high with plinths, inserts, and other coordinating structures to the cashier. The boxes, labeled "Effektiv" and "Galant" promised ordered, efficient home-office functionality. We'll see. What will be the effect of all our gallant efforts to clean up our acts and clean out our clutter? Have we become affected suburban sell-outs, needing to display our read and unread books while concealing our read and unread mail? Präktig.

I was just happy we made it through the morning without Grayson jumping from mattress to mattress or reorganizing all of the cutlery in the kitchen department. No dramatic outbursts or silly scenes played out on the display floor that day, at least while we were there. He saved them for home.

I was thrilled we accomplished our errand and returned in time for naps. I was completely astonished that Rick had everything assembled by the next day. (He only had to make one return trip to exchange a drawer-face that was maple-colored instead of black-brown.)

Rick and Grayson even cleaned up all of the cardboard today. Now our garage is defektiv. We only recycle on Fridays. Jävlar!

Today, we decided that we need to go back. We need one... more... thing. Ok, maybe two.

Then, we'll finally have everything in order.

Right.

Begin the Beguine 2010

2010-01-01T08:01:00.000-08:00

Ok... *takes sharp breath*

Ok. *releases aforementioned breath*

Like a participant reluctant to step onto the dance floor after witnessing the prowess of so many others who have been performing for much, much longer, I am sashaying my booty into the harsh lights of the blogosphere's stage. Parading before an audience of unknowns, I'm hoping they'll forgive my missteps and that those I do know and love will continue to encourage me to practice, practice, practice. I'll try too hard. I'll be lazy at times. But it's time. It's time to transform from a mom desperately journaling about her deceased daughter on a Caringbridge site into a writer desperately blogging about how she moves forward. Will her moves be graceful or awkward? Probably a bit of both.

C'est moi:

I'm holding our third child, Zoey. She had been in the NICU for a week after she was born Nov. 6, 2009 at 37 weeks. She recovered quickly, and she is now 7 weeks old. Other than a cold that has her coughing and sneezing up a storm, she's doing well. Her big brother, Grayson, is quite the protector, singing and talking very sweetly to her when he's not vying for his parents' attention with whines and tantrums or secretly looking for ways to bop her on the head. He's a great kid, but he's 3. This age can make even the greatest of kids go wacky for a while.

Does my smile look a bit forced? Probably. Exhaustion, worry, stress all play major roles in our little drama. See, not only did we have a baby last year. We also relocated because my husband, Rick, got a new job at a different company. That was 6 months after my oldest daughter, Arden, died.

I write about her here. Her journey from diagnosis to the second year after her death can be found by clicking that word. I grieve for her daily, hourly, by the minute, but I know I can't let that get in the way of living. I know she wouldn't want me to stop everything and constantly be sad, bemoaning our fate. That would be a waste of the time on Earth she was denied. That would be an insult to her and her memory.

So, we do our best to keep going, to keep finding the levity in our day-to-day lives, as frustrating and challenging as life can be.

I ended 2009 by purging. We went through boxes that had been packed for us and found things that had to be handled. To keep? To donate? To file? To discard? It was (and still is, as the process continues) a cathartic feeling. I found everything from bills and paychecks from the early 90's to bags of stuffed animals and blankets that my daughter hugged. From the mundane to the marvelous, the discoveries had me reviewing not only the events of the past few years, but of the others, the ones in which I thought I had problems, the ones during which I made the choices that led me to this place in time. An evaluation of life in papers, puppets, and plastic.

I'm beginning 2010 by creating. We've done a decent job trying to settle into our new home and this area, considering. (Everything we do ends with that qualifier. It's a word many bereaved parents use. We're ok, considering...). It's time to really commit, to make grand, sweeping choices that will solidify our foundation here. I'm starting with this blog. We'll see where we go from here.

The memories will always be sweet, as are the songs that take us there. This blog is not for reliving memories. It is my present for the present. I'm starting my Beyonce be-ounces, tapping into my Fergalicious funk. Unlike J-Lo, however, I will not don a sparkling, shimmering catsuit for my entrance into this decade. I also promise not to go Lady Gaga on you.

Thanks for reading,

-ARGZ