The things you don't need anymore

I am trying to finish a project that has stretched out too long; cleaning out your room to get rid of "baby" things still lurking in the corners and make room for Ian to share a room with you.  Perhaps passing on outgrown baby things generally gives a mom's heart a twinge, but I do think your "outgrowns" comprise an unusual list.  So here's a very small inventory, the mix of your first three years, odds and ends still hanging around from earlier "cleaning outs" . . .
--Size small swim diapers
--Three Huggies containers used for home-made wipes . . . my potty trained (mostly) boy doesn't need so many stockpiled wipes
--infant sized yellow hospital gown, one you wore in those first two weeks in the hospital
--three U-Bag urine collection bags (missed these when I passed on all the syringes and alcohol wipes to Brittney for her Africa mission trip)
--two Tegaderm patches
--sterile packaged latex gloves
--baby blankets
--pacifier (never used)
--three stuffed "happy dolls" symbolizing goodwill and healing, made by children in Japan (a NYC momento)
--"Elijah's Room" signs and decorations made by Hannah and friends for your hospital room when you were a baby
--pic of you mounted on a little "card" for a Christmas tag,  one left over, others used for little gifts for our doctor and nurses your first Christmas
--two monogrammed burp cloths
--scrap paper where your Dad ("I call my Daddy Dad" you like to say) jotted down your full name, with options on the middle name varying

It is time.  Time to put away in a box somewhere those keepsakes from your baby days, to get rid of other stuff . . . to make more room for today.

And somehow, my mother's mind and heart tries to sort out it all, what to keep locked in memory's safebox, what to let drift away.  My mind cannot hold it all anymore than this little bedroom can.  But this sifting is even harder, and perhaps it is my reticence to do it that has kept this poor little room so cluttered.

There are the things I cannot help but keep--the 2 AM memory of your little 7 week old body lying on a table, with about 5  nurses standing around you, taking turns trying to get your veins ("we'll all try two times"), until your Dad stopped them after "only" three tries (they were offended), you screaming, pitifully trying to breathe . . Your head thrown back up and to the side, trying to find the "sweet spot" where you could breathe around your tumor . . . Your smiles and happy spirits on your first day of chemo, and generally every day, kicking your foot with the pulse ox like crazy, that little light just dancing around . . All the infant and toddler nights, morning, days of npo (nothing to eat/drink) and your happy, resilient spirit . . . And someday, I will need to pull your jammies you wore in NY after your big surgery out of your drawer, and I will store them away.  I will keep the memory of how you looked so dapper the fourth day after your surgery, when you finally began to get up and walk and went on a trek from the POU to the hospital playroom on the 9th floor of MSKCC 2-3 times.

There are memories that will inevitably drift away.  I already know this, when something triggers a memory of how one of the kids (now which one was it?!) said a particular word so cutely . . I won't be able to hold it all. There are things, aren't there?, that might as well be left behind.  Can I leave behind the lagging, dogging sense, that this is just another break but we will get hit again?  Should I, or does it make appreciation for today sweeter?  Can I leave behind the need to read up on all the latest in NB treatment, and on every odd illness that touches children in my circle?  Where do I put all that energy I devoted to your active treatment, and researching options for your care and healing?

Obviously not to cleaning your room.  So I better get back to it.  Sifting, sorting, what keep and what to let go .. with the sounds of you and Ian playing, laughing as the soundtrack.

gifts

it's been a long, dry season

both the hallelujah chorus and the adventure awaiting

have long since faded

but I walk on, walk on

I still want to bring a gift

a gift what will it be?

parched voices, faded dreams

of what I thought I'd give

daily bible reading schedule in the foyer

apologetics good theology

"you should read Reinhold Niebuhr"

4th grade class this quarter? please?

"rise at 5 if you have to, but give the best of your morning to your Lord . . . "

I walk on

and I marvel

that you would let me participate in creation with you--what crazy power you give--

did you really think that through, dear Jesus?

and so I write myself into them.

their paths, not mine, but close enough here for a time to seem as one

and we laugh, sing, fuss, struggle, get up and try again and again

my gift is in the apology at the thrown shoe,

the four year old's calm, slightly bemused eyes,

"my shoe isn't stupid, mama"

my gift is in the appreciating the wit of the three year old,

the creative genius of the Lego king, the stories, games, and feats of skill,

in watching, listening, to the "please, watch me, mom!"

my gift, in accepting

that the gifts you gave me to give

were better than the ones I wanted to give

and if I walk, misunderstood, I have good company.

so I walk on

but it's been a dry, long season.

my sister-friend, she had a vision

that you were busting off her heavy

chains and you wanted her to dance with you.

just to dance with you.

she no dancer (nor more I), and I loved that vision.

I didn't see a vision or hear you singing

but this my gift:  I heard hers, and loved it, and walked on.

my gift is laughter of women,

gathered around my table.  this, too is food and drink.

my gift is thanking you for it, and for phone conversations

that went too long, while kids abandoned schoolbooks,

for sisters you have given me, my thanks for them is my gift.

oh, it's been a dry season.

and when the path narrowed, a precipice on either side

loose stones underfoot

darkness

and I carried the child on the narrow path fit only to my feet

I feared for the strategy of each step I must take,

that it must be right or we fall,

me to one side the child to the other.

but this my gift.

I held him loosely. gently.

we laughed, nuzzled.

I held him not too tight so we could look,

could understand one another.

breathe.

breathe.

my gift.

though I heard not your voice and felt not your hand

had no fall insurance

I knew that you were there.  knew.

and trusted that though he fall, I was held, and you were proud of me.

pleased. this I knew, and knowing was my gift.

and so it came that I could walk without fear, without calculating

more steps to the centimeter.

we walked.

and this my gift:

that I was thankful. each. moment.

for the gift of knowing this other soul in my arms.

not mine. not one to be, but another who is. in the now.

fear did not steal our joy, and that-- my gift to you.

the path widens.  

my gift that I won't refuse to walk next to one you place by me?

my gift that I won't only look back?

my gift that I will soon hear you singing more clearly, and sing back?

my gift that I would dance, if you asked me to, even if I would rather fight dragons?

I wait.  accept your gifts.  keep walking.  and sure, pray for rain.

Parallel Universe

I’ve always been intrigued by parallel worlds and alternate universes.  Although I did love TNG (Star Trek: The Next Generation) and Voyager, and read my share of Ray Bradbury, I was more drawn in by the mythical/fairy tale type of alternate world than the sci-fi.  Somewhere, surely there is a portal to Narnia, or a history that really does include Middle-earth.  For me, any really good book was one that brought forth a world entire, peopled fully, so after Lewis and Tolkien, and much, much after the Grimm’s fairy tales that intrigued and horrified me as a small child, I found Faulkner, and his Yoknapatawpha County in Mississippi was as much a separate, but complete world as anything more obviously mythical.

What I have come to believe is that this world in its complexity offers many parallel universes, no time travel required.  They are real, not just between the covers of a book, and you may well not want to go there.  I began to enter such a parallel world, a reality that fully exists but most people never see, in late June 2008.  The portal was this concise piece of information:  “your infant son has a malignant, inoperable tumor”.  My baby had cancer.  (I tried capitalizing every word, but came so short of reaching the enormity of that simple sentence that it seemed a farce to try.)

It’s called by some “the loneliest hour”.  It’s when you are told, and try to process, and are overwhelmed by the attempt, that your child has cancer.  For almost all of us who hear “neuroblastoma” from the doctor’s lips, it will be the first time we ever hear the word.  The reality behind that word will rock our world forever, and this news is the portal into a different world.  It exists, all around you, yet you never see it. 

Like all good alternate worlds, it has its own language, from the decipherable to the totally new words (CT, MRI, MIBG, VMA, HVA, MYCN, 11q LOH, carboplatin, vincristine, doxorubicin, catecholamines, etoposide, AGC, ANC, so many more but let’s not forget the ever-fun npo).  There is an evil being to defeat—not the Borg, Sauron, or the White Witch, but the beast within your child.  We have our wizard-doctors, who employ their magic arts to mixed effect.  There are good wizards, the compassionate, competent, and respectful, and the bad, those who arrogantly give you bad information, who are inconsiderate to your child and disrespectful to you as the parent.  There is the hero, who Frodo-like, is seemingly the weakest character, but who proves to exhibit such remarkable strength that everyone watching marvels.  It’s your little child.  So you, of course, the parent, are your child’s Samwise.  You carry your child, but you cannot take his burden on yourself.  Your role is the helper, strategizer, worrier, the one helpless to take on the burden itself. 

But, ahh, the fellowship.  There is that, too.  The other families in this world become an extended family.  You read their blogs and updates with breath held in hope, and cry along as well.  Because the hard part is there is no benevolent author writing this story, and many many little Frodos die.  That’s it. The bitter truth.  And when our visit to Mordor was just that, and we walk out with only scars, our little warrior marked only by a drooping eye, mismatched pupils, and a soft, hoarse voice, I am left with huge relief and thankfulness for every day, but also many questions.

After all, don’t I believe there is a Benevolent Author?  Was our little Frodo written out of Mordor because our prayer list was long enough, because he is to do something really great in the world, or because we are just “such good people”?  These are all things that well-meaning people say, but all lies because of what they imply and ignore.  Other families have even more praying for them, are even better people, and who would have the horrible crass heartlessness to say that their child would not have done great things in the world?  No, there is a mystery to suffering that no amount of reason can unravel.  Attempts to explain why some are healed and others die end up simplifying the truth to the point of completely negating it.  Don’t try to explain it; you can’t.  But, and this is a “big but”, this acceptance of the mystery does not denigrate the importance of faith in that Benevolent Author.  I am amazed by how faith keeps the parents of the dying from being beat by bitterness, how the habit of hope that they have nurtured during the long battle does not die when the end is near, but just keeps hoping, if not doggedly for a cure anymore, for something beyond this suffering and a better tomorrow for their child.  At the end, the beauty of those who hold tightly to their God is stunning; his faithfulness shines through them.  This does not make it all “OK”; I don’t know the pain they are living with.  But the beauty is true, too.

I have been loving a song I have just discovered.  It is a great song for my new year, and captures what I believe. 

Cardboard cutouts on the floor / People wish that you were more like what they wanted you to be / Eventually they won’t have much of you at all in their theology / The walls are closing in on you  / You cannot be contained at all.

I don’t want to make you small / I don’t want to fit you in my pocket / A cross around my throat / ‘Cause You are brighter than the sun / You’re closer than the tiny thoughts I have of you / But I could never fathom you at all.

Broken moldings all around / Broken people hit the ground / When they discover that you’re not here for our benefit / You love in spite of us / You use the least of us to prove the strong aren’t really strong at all.

I don’t want to make you small / I don’t want to fit you in my pocket / A cross around my throat / ‘Cause You are brighter than the sun / You’re closer than the tiny thoughts I have of you / But I could never fathom you at all.

Small, JJ and David Heller

http://www.youtube.com/watch?v=ZIzYeAjrv6M&NR=1

(song starts at about 3:24 on clip)

No, He isn’t here just for our benefit, but He is here.  And, oh how the least, the “little Frodos” demonstrate his strength!  So I start the new year, praying for the little ones and their parents still in Mordor . . .it is true that as light shines so much brighter in the darkness, joy is more palpable in the presence of tangible loss, and I am filled with admiration for those who hang on, tightly, to that joy.