Live: From My Couch

I'm in pain.

Well, keeping company with pain anyway.  We're old acquaintances, but we usually have more of an understanding with each other than right now.  And it's not me that's being unreasonable...

I've been with this unfortunate close friend since the weather turned cold months ago, just like it did for many seniors in New England.  Most of the time, I don't notice it much and neither would anyone around me: the underlying back aches, stomach upsets, and occasional muscle spasms. Once in awhile, I acknowledge its presence with a grim "S'up?" and throw a couple Advil at it and move on.  Until a couple weeks ago.

The day after our final bows to combined thousands of viewers in the Christmas Carol (and yes, I'm very thankful it wasn't a moment before then), my daughter Claire evidenced the dreaded stomach bug. Of course, I hoped--somehow--that maybe it was something she ate.  Chocolate and goodies abound this time of year after all.  And the next day, Monday, all were well.  I kept wrapping and baking cookies.

The morning of Christmas Eve, I packed all four girls in the car to pick up family portraits we'd taken at Target and to get some more scotch tape.  In a highly festive mood, I treated them all to munchkins and me to a coffee.  Which turned out to be an absolutely awful idea.

After some unusual sounds from the back seat, I heard, "Oh Mommy... I'm so sorry for spitting the munchkin at you."  A quick glance led to a quick park and a manic search for wipes, plastic bags, and changes of clothing.  Since none of the latter were to be had, I ran into Target, grabbed the pics without a glance, rifled through the clearance rack, and found a $4.88 pair of bright purple sweatpants with fireworks on them... a pair Cecilia now, naturally, tries to wear every morning and to church on Sunday.

She was almost clean, short of an immediate bath at home.  I had dissembled the car seat, had everything soiled sorted out in grocery shopping bags for the laundry.  I was indulging in wipes and Purell myself when my sweet two year old, with a look of utter confusion, began to "spit" her treat out at me too.  

"Oh.  You cwean me?  I sorry too..."  And I was a thousand times sorrier.  

We were sick for Christmas.

I've been lucky and spoiled my entire life when it comes to Christmas.  No one has ever been ill for that holiday, aside from the occasional cold.  One year, my dad had a slight fever.  Another year, my mom broke her arm after the event.  But Christmas itself, year in and year out, whether I'd been living down the street or in Austria the week before, always found us together in the same living room, with the same dreadful cassette tape of Harry Belafonte droning out songs, exchanging gifts and lots of laughter with my very amusing family.  Here, you deserve to treat yourself to a listen :D

After repeating the same cleaning procedures in the cold, an hour later with two sleepy little ones and two sobered older ones, I was swiftly heading to washing machine and bath tub.  And making calls saying: "We can't be there for Christmas."

It was sad.  But given the events of this year, I was already sad.  And this was certainly... distracting.

My hopes that this would prove a "kiddie" virus disappeared just before my husband was about to head to midnight mass.  In that sweet moment when all are sleeping snug of their beds with visions of wellness dancing in their heads, while I was setting gifts under the sparkling tree, my poor spouse dashed--not to the car--but to the single and most occupied seat in the house.

Oh.  Dear.

Rather than waking up Christmas morning to mourn the fact that no newborn was there to experience her first wrapping paper, I had to dash to help my eldest, whose ticket had been pulled by the Norwalk virus.  At 10:30 Christmas morning, I was holding her hand and brushing back her hair in the bathroom.  It seemed to strike the older ones the hardest... which did not bode well.

In a daze, some gifts were open, thanks were mumbled.  I still can't find some of the things we opened that day.  Kids were laid out on couches with appropriate buckets and electrolyte-laden, well-labeled drinks.  With the necessity of distraction apparent, we watched many Christmas movies.  After a dinner of saltines, we sang carols together.  

It was still Christmas.  There was still joy at the birth of the Lord.  Felicity toddled around with Baby Jesus from the nativity set, giving Him kisses and feeding him applesauce.  

As the day progressed, aww I knew, but I hoped against hope.  At one point I was walking the house with a bottle of bleach in one hand and a bag "just in case" for myself with the other.  But just before dawn on the 26th, my number was up.  

And stayed up for a long, long time.

My phobia about germs is due to this very virus.  While for most it's an extremely unpleasant 24 hour event... Because of Crohn's, when I get this bug, it's an automatic trip to the ER for fluids.  I can't stop puking without medical intervention.  And darn it and the absurd co-pays, this time, the walk-in clinic wasn't enough.  I was informed pleasantly by a guy in a lab coat, "Your white blood cell counts are concerning enough that we're calling an ambulance."  

I still have the scar from where I pulled up without heed to my IV.  After hours of all kinds of unpleasant depletions, I wasn't "all there" anymore.  Looking blankly at the blood flowing impressively down my arm, I mumbled something like, "Nononono insurance expensive husband drive.  You sure?  Be okay..." And fell back on the cot to stare at the wall again.

I mostly remember that day a lot of pain, a lot of confusion, and the sheer misery of constant nausea. I remember it was hard to breathe through the mask, and that I suddenly was in the car.  A distinct lack of any turtle doves or pear-tree perching partridges.

My husband had picked me up, and ignored my cogent arguments to "Want go home rest be kay ooooo errrrr ugh."  I've never gotten morphine so fast upon entering a hospital.  Hyperventalating works, so there's a tip.  Declaring your pain level to be "over 7" is another.  Dan knowing the doctor through work didn't hurt either.

A CT scan showed that my stomach and intestines had swollen to a grotesque degree due to a bizarre secondary infection.  Which would explain all those pesky hot knives feelings.  

I was admitted, and wheeled behind a curtain beside my new roommate for days of morphine. And days of listening to her shout obscenities at the staff and talk to her cat on the phone, demanding to go back on cocaine.

I can't say I enjoyed the rest.  The hospital liked to give me morphine more than I liked to receive it. When I started to mention the RA in my increasingly annoyed back, they were most unimpressed.  Anything anti-inflammatory would hurt my stomach, and that was the main concern. I needed more antibiotics.  My white cell counts needed to go down, my red cell counts needed to go up.  My GI specialists were in Bermuda.  I just wanted to go home.  

Despite my protests at contagion, my sweet mom and dad brought flowers, my awesome friends brought chocolate which I was happy to just hold and smell, and even brought a board game which they essentially let me win.  They left encouraging notes on my board:

Another highlight was the sad and amusing night where an elderly gentlemen--who was obviously well-educated but unhappily senile--raced through the halls yelling, "You, sir, shall deliver my wallet back promptly or I will inform the police!" This was said while security were actually in hot pursuit, trying to keep him in his room with the least possible use of force, assuring him they would protect him from all his imagined fears.  I joined some fellow johnny-clad patients to watch the proceedings in the hall.  Ah, here's my one hospital selfie in johnny:

One fragile woman across the way hung onto her IV pole and looked on gleefully while I stopped watching: the elderly man forswore his hospital gown and continued, now streaking, eluding and swiping at authorities.  She giggled: "It's the only entertainment we get, eh?"  

Changing the topic, I asked what brought her here.  In her early 40's, she also has Crohn's, and told me she comes every 10 weeks to the hospital now, after several surgeries.  She has a "bag."  Her daughter now has the disease, vomiting daily.  Her daughter is 8.

Chatting in quiet voices in those wee hours of morning, I felt so very badly for her.  And I felt so very lucky.  I promised my prayers.  I staggered back to my room, and pressed the button for my nurse, a British gentleman from Liverpool.  Ostensibly for pain medicine, but also just to hear him talk.  To hear anyone talk, anyone who was healthy, undrugged, and unafraid.

I was happy to receive the anointing of the sick.  I thought of posting that on my Facebook status for all of 23 seconds and then realized how wildly dire that would sound. :)  

I wanted to blog, but my laptop's screen had broken.  I would hold my I-Whatever up in bed, try to make the image stop turning, and put it down because I was too dizzy.

It gradually improved.  I was put back on solids after some days, and eventually it didn't feel like my insides were getting scraped raw after I swallowed.  I got a new roommate: a wealthy elderly woman from Cumberland, getting treated for a bloodclot.  We'd pull back the dividing curtain, sip apple juice and watch the news together, joking about our commodes, illness as the great equalizer. 

Four days later, I got out of the hospital and got to see my kids' faces outside of Facetime.  I had a catch-up Christmas with my parents through a daze of tramadol, and went back to bed, parking the new gifts by the door and not looking back.  

I went to see a play on New Year's Eve, having postponed my ticket till my discharge.  I was fine for the performance, but when I stood to leave the stage and seats spun round, switching places. While I've never been drunk, a condition both my stomach and my morals are in firm agreement on, I have a pretty good idea what that would feel like now. They guided me out past people dancing with faces painted in the streets, shouting 2014 greetings while beating tamborines and blowing whistles.  

2014 had better be better.  Folks, it's been surreal.

I'm better now, as I hope is demonstrated by the fact that I've finally, finally written to you again.  I had to write out all this unpleasantness before I could tackle my annual Christmas letter.  Hope it's not been too graphic. :S

While my GI system is better, if sore, my RA--not to be left out of the party--has been worse.  For days after the hospital, I walked slightly bent and twisted to the left.  An MRI showed erosions between my ribs and my spine which explains a whole lot about the weird pain that wakens me in the morning to labored breathing, my ribcage complaining about the task of expanding for air.  

The good news are that my specialists are all finally back from vacation, and I'm starting to see them, get more tests, try more meds, drink mostly "bone broth," and take all manner of herbal supplements 20 minutes before, 32 minutes after, and in the middle of meals.  I take a handful of capsules before bed, but usually have to take a vicodin or two to get the pain down to sleeping levels.  And a zofran for the nausea the vicodin causes.  And an extra tylenol for the migraine the zofran can bring on.  Did I mention I hate pills?  I hate pills.  Of course, I'm going on Humira shots again soon, so I will like pills better then I'm sure.

Thank you for your prayers during this season of my keeping company with pain... while trying to do just enough cooking, dishes, and laundry that my family is fed and clothed till my husband gets home and I can seek ice and heat.  As for the appearance of the house, dinner parties will wait for the time being, and the tree may well be up till March.  Which is just fine with me.  I need to catch up on this season of joy.

I could end with something totally obnoxious like "Y'all be grateful if you can move without pain." But you know, that sort of gratitude is just difficult, because we humans have a wonderful amnesia when we're out of pain, and very quickly embrace the comfort of normalcy.  We weren't made for pain, after all.  

I should know better than anyone, as I'm lucky enough--despite my diagnoses--to only go through these really bad spells once in a blue moon.  Since I'm not able to be grateful enough for when I'm well, I'm really trying to spend time being grateful--ahead of time--for when I will feel better. Because it will come, this season will pass, and I will likely attempt tubing within the month, blissfully unaware of the weeks I spent being gimpy and grumbly around the house here.  I look forward to doing all the things I was made to do by a God who sure can give us more than we can handle yet is, among many attributes, definitely fun-loving. And I'm grateful for that, right now.  

Meanwhile, pray because I've been sitting for a while typing out all this bravery, and I'm about to begin the process of standing up.  Oooh boy.  See you sooner rather than later, you wonderful ole' Bloggesphere. ;)

I'm going to favor the New Century Version translation this time.  I know, I know.  If you must, here's the Douay-Rheims: "The Lord help him on his bed of sorrow : thou hast turned all his couch in his sickness."  Not particularly desirous of mental images of a Divine up-turning of my already distressed furniture, I'm gonna go with this:

"The Lord will give them strength when they are sick, and make them well again."  Psalm 41:3

Prayer request

The valley of the shadow of death.  I used to hear that phrase from Psalm 23 and not realize how much it applies, not just to times of great peril, but simply to the human condition.  We are ever in the shadow of our own mortality.  Every day we have here is a gift from a loving God, and when those days are over He has prepared a wonderful place.  But now and here, we are frail and weak.

Welcome to whiplash Wednesday, where I go from Top Ten Tuesday humor to reflections on mortality.  Okay I'm kidding about making this a trend for hump day, really... 

But for now, in all seriousness, I am asking for your prayers for the sister of a dear friend of ours whom my husband and I met in Austria: a young lady named Rosie Grimm, a graduate of Thomas Aquinas College, who is now in hospice care painfully fighting an aggressive form of cancer.  I met her only once at her sister's graduation.  She was serious and sweet.  Now 26, she is hoping to make it long enough see her godson, who is expected to be born soon.  

I've been Facebook friends with her sister for awhile, but Rosie just recently befriended me.  As I look through her pictures, my heart breaks for her large and loving family who are coming to be with her these next couple of weeks.  

Rosie and her goddaughter

Rosie in hospice care

That's her on the left, with loved ones.  They appear to have crowned her.  Everyone in the family sings beautifully, and possesses a great deal of good humor and wit.  

I recently also heard of the passing of a young boy, Jacob Flesher who lost his battle with cancer at the age of 10 a few days ago.  His family could use prayer too.  

Please take a moment with me to pray for everyone we know who is fighting this disease (including my mother-in-law, actually, though her case is not imminently serious), and in a particular way for Rosie who may be on the brink of eternity now.  Through faith, we know that our life here is only a small fragment of the vast life that awaits us.  

The family has requested praying Divine Mercy or adding Rosie to your rosary novena. Other options are below.  Thank you friends!

"Lord, the one You love is sick." John 11:3

Dear Heavenly Father,

Your ways are not our ways, and Your thoughts are not Your thoughts.  We believe in Your love, Your wisdom, and that You give us hope and a blessed future.  We ask that you visit Rosie with your comfort, grace, and protection.  Hold her in the palm of Your hand.  Comfort her, shelter her in this storm, and bring her closer to You, the Source of all that is good.  

Amen.

Prayer for those who have cancer and their loved ones

Dear Jesus, Divine Physician, Healer of the Sick:

We call upon you and ask your help for our loved ones

who are suffering from cancer.

We entrust them to your loving care.

They are your children and they are in pain.

Give them the ability to know in their hearts

that you are with them in this difficult time.

Give them strength and healing.

Comfort them in their fears,

soothe their anxiety,

and let them rest securely in your arms.

Help those who care for them.

Give insight to researchers that they may discover cures.

Give patience and energy to doctors and nurses so that

they will care for them with grace and love.

For us, their families, their friends and their community,

we need your courage and strength,

to be with them and help them bear their burdens.

Give us joy, peace and confidence in you

so that like Mary, your mother,

we may stand with them in faith and trust,

witnessing to your healing love.

For you are blessed, for ever and ever. Amen.

Ouch

I am currently typing while a tiny portion of my back feels red hot... I got stung _again_.  This has been a banner year for me and bees... apparently the year to face my greatest fears.  Let's see, I can check off death, bees, heights and flying (will be hopping on a plane the end of next month.)  I feel about done with this, and now feel behooved to avoid ocean swimming since my other phobia is sharks (yes I religiously IGNORE "shark week"...) what's the name of that fear?  Hmm... Geleophobia, there we are.

I needed a laugh... there were no bees involved in the making of this film.  :)

While helping my husband rebag (yes, REbag) copious amounts of leaf and lawn detritus from regular, inferior Home Depot lawn and leaf bags into narrow, paper, annoying city approved leaf bags... anyway, I somehow uncovered some venomous insect's dwelling and he most rudely flew up my shirt to tell me about it.

Owwwwwwwwww!!

But I'm okay now, swallowed two benedryl and Advil, denying the woozy feelings and just gonna do this blog post till the end.  And the end is right about now.... because this hurts and makes me feel weird and I can't write well when I hurt and feel weird so I'm going to have a pout.  This is where I grab an ice pack and sulk on the couch while watching reruns of SNL. 

Till tomorrow my friends...

(Searching for evil bee scripture... ah yes...)  "They swarmed about me like bees, in the name of the Lord I cut them down."  Psalm 118:12  Mwa ha ha!!!Current happy thought?  Killing bees!!  Will deal with my love of agriculture tomorrow; for now I will indulge my happy anti-bee fantasies...  Good night!  Owww...  Where's the chocolate...

Woman vs Wasp. Wasp 1, Woman 0.

So I'm getting ready to go to the YMCA to try a Pilates class—big mistake, that, by the way. My first Pilates class in years. I sneak to the back of the room, I unroll my mat, and start a down-facing dog to stretch before class when the teacher shouts:

“THIS IS NOT YOGA! I am sick and tired of people doing yoga stretches in my class! PLANK! PLANK ONLY! I am a PILATES teacher. I don't DO yoga!!”

I assume she just came off of an unpleasant tour of duty in the military so I will let it pass. I planked.  Finished it out and deleted that class from my schedule. Deep breaths, my friend. Deep breaths. Read my last post and relax.

Anyway! Back at home, preparing for this class, finding hairbrushes and elastics for girls, and two sneakers that match for me, I hear the following, in annoyed tone:

“Momma, there's a spider on the curtain.”

“Okay Cecilia, I'll get him.” I have no problem with spiders. I gulp down a vitamin.

“Mommy... THE SPIDER HAS WINGS!!” A note of horror in her voice now.

I froze, drink in hand. Crrrrap.

WASP. (shudder) My insect nemesis.

“Uh... stay put Cece!! I'm... coming!!!” Oh. Oh oh oh. Why was there no one bigger, older, stronger, wiser and braver around? Why why why...

I slide into the room, just in time to see a wee bit too large black object pass in silent, straight, foreboding flight, neatly turning to disappear into the next room.

“Oh no! Mommy, he FLIED!”

Gosh I hate those things. Worst insect ever. Direct result of the Fall. Proof of the Curse. Destroyer of peace. Decimator of happiness. Singular vessel of horror. Cause of hyperbole.

How could any living thing be so incredibly ugly?? Groan.

The blasted thing's in the kitchen. Kids are placed in front of “Olivia and the Neverland McStuffins” or whatever.

I consider my choices of weaponry:

 or

or

Naturally, we have no wasp killer spray. Cuz it's poison, that's why. And because I like to pretend I live in a world where I won't be alone in the house with these things. Like ever.

BSST. BSST. The unmistakable sound of a the Wasp Bump, attemtping to see if the glass on my window is permeable. My bedroom window. Right beside me.

Folks, I did what any of you would have done in such dire circumstances. I ran and screamed and slammed the door. And locked it. And left my husband the following message at work.

“Uh, honey? There's a wasp in the house. But don't worry, I've got him cornered. He's in our room. And he will probably prefer the window, so I don't expect him to go into the laundry piles or crawl in the bedsheets. Right??? I mean, they don't do that... right????”

And I put the kids in the van and drove to pilates to get yelled at.

I'm doing the mature thing and sleeping upstairs with my kids tonight.

"When I am afraid, I will put my trust in You." Psalm 56:3

A call to self-care

While you are stuck again with just me and my ramblings tomorrow, today I'm pleased to announce guest blogger Jennifer Derryberry Mann: the mother of two little girls who love to dance through the house, “help” in the kitchen, and color on any available surface. She is the editor of Belly Button Bliss: A Small Collection of Happy Birth Stories (Fairview Press, 2010), a freelance writer, and a certified Forrest yoga instructor who specializes in prenatal yoga and postnatal mama-baby Yoga Bonding.

Her bio is longer and more impressive than the above; feel free to read about her and her work on her delightfully named website: www.Mamahhh.com  Check there also for my own post as a Christian who likes doing yoga. :)  While there may exist yoga classes that are straight-up paganism, my experience (at least at the YMCA) has not been so, and I have found ways to make it work well for me.  I think yoga can be a useful tool to calm down our minds and relax our bodies without offending our faith.  Will write more on that later I'm sure. :)  I welcome your comments and feedback meanwhile: Have you done yoga?  What are your concerns?  What has your experience been?  Always happy to hear from you.

For now, I'm turning the floor over to Jenni.  Be kind to yourself today.   :)

"Therefore, as God's chosen people, holy and dearly loved, 

clothe yourselves with compassion, kindness, humility, gentleness and patience."

Colossians 3:12

*********************************************************************************

I am thrilled to be visiting T. L. Catholic! Visiting Katie’s blog is a lot like what I’d imagine it’s like to hang out with Katie in person, chatting over wine (or lemonade, if you’re feeling wholesome).

Over in my little neck of the internet, at www.Mamahhh.com, Katie shared a story about how she brought her faith right in to a yoga class when she was postpartum and recovering from a challenging birth. I totally admire that she was willing to check her concerns about yoga being too “new agey.” Not because I’m a yoga teacher and I think the practice is awesome (although I am and I do!) but because I recognize a mama who’s gotten real about what she needs to do to tend to her own heart.

What is it about nurturing ourselves that is so dang hard?! We’re so willing to bend over backward to take care of our kids, our family, someone else’s kids, and just about everyone else’s business – what about making sure we’re tapped in to our most loving self before we start in on that list?

A mama-friend recently told me that she just didn’t feel like she was worth it. And I know she’s not the only one who feels that way.

Sometimes the block to nurturing ourselves is that sense that everything else is SO important, or that something else has to be done Right Now!

When I first started getting clear about “self-care” I mostly thought of it as “spa day.” But nurturing yourself doesn’t have to require a whole day and a whole lot of money. You don’t have to put everything else on hold. The simplest acts of self-care probably won’t even make you late for whatever else needs to happen Right. Now!

During the next 48 hours, turn the volume waaaay up on your inner sense of your need for nurturing. Don’t judge yourself for it. Simply notice when you’re feeling a little disconnected –grumpy or tired or impatient or unfocused or just blah—and in that moment, try one of these super-easy nurturing homeworks:

1.       Take a full breath in, and a sweet breath out. Spread your ribs, let your belly soften, and notice how incredibly delicious breath feels in your body. Delish!

2.       Get your feet naked and plant them in the earth. Kids do it all the time. Running barefoot in the yard, and they’re crazy with joy. You don’t even have to do the running part—just enjoy the sensation of the earth under your feet.

3.       Say something nice. Not something to placate someone else, but a genuinely nice comment for yourself! A favorite Psalm, a line from a poem, or a simple, “I’m worth it!” can shift the climate of your inner landscape. In an instant, you’re living someplace nicer!

I’d love to hear whether you’re already feeling connected to nurturing yourself, or whether these ideas helped open up a new sense of peace for you. What are your favorite ways to take care of lovely, totally worth it, you?

Der Bienen

"Mom, I wewly have to go potty!!"  This was the third time my preschooler had informed me of this breaking news at a potty-free park.  The most secluded bush was clear across the very large fenced-in playground .  Carrying my toddler (who was optimistically singing, over and over "Ashes, ashes, we all fall down," her favorite part of the song) while pulling my potty-eager child on the other hand, shouting "I'M GOING POTTY!  I'M GOING POTTY!" I slipped into "nirvana mode" (i.e. focusing on nothing), trying hard to ignore any disapproving glances from other moms who guessed the planned desecration.)  Scooting behind a rhododendron, I told Cecilia, "Okay, you're going to pee on the ground like a squirrel!  Just hold on to my arm..." 

 "WHAT??? I AM NOT A SQUIRREL!  I DON'T WANT TO GO POTTY ON THE GROUND!  MOMMY! WHERE'S THE REAL POTTY?" 

The child has one volume sometimes...  but she succeeded.  We survived.  But while exiting the playground, just in the small space created when a shoe flexes as you walk, a bee flew in and stung my foot.  I squealed, jumped, popped off the shoe.  "Mommy you threw a BEE away!  Silly Mommy..."  Stupid bee.  Well, maybe stupid me... see the photo from yesterday's post?  Obviously my choice of clothing tempted the bee beyond its power of control.  Who to blame... hmm...

Hobbling now, I carried bag, baby, and kid in tow, pausing to look at a dog they liked, the stinger unfortunately going deeper with every step.  I made it to the van, belted them into car seats, handed out juice boxes to buy myself time, had a look at the damage and realized that I am now part bee... as in, with swelling, there was no way I could get all the stinger out now.  I scraped at it with my health insurance card (if anything should have worked, it was that, right?) and tweezed and grimaced and gave up and applied ice.  Well, applied the side of my iced coffee anyway.

Sometime later, after realizing that--in all the excitement--I had forgotten about a dentist appointment, and following a phone call about it with a secretary who acted rather like a female canine, I realized I felt sick.  Flu-like symptoms.  Being a busy mom, I decided to drink more water.  It was only when the nausea hit hard while driving my kids home from soccer, and feeling like I was going to pass out, that I realized I needed more than extra water.  After making it home, my husband gave me two benadryl... and I felt 100% better in 20 minutes.  Which means, if I'm doing the math right, that I have a mild allergy to bee venom.  Fantastic.  I will add this to my growing list of medical marvels.  

I'm better today, and enjoying the rain, sadistically hoping the bees are getting wet somehow... I've always disliked and feared them.  So afraid that my mom had to put masking tape over the picture of a bee in my dictionary as a kid.  When I was two, I decided to pet a bumblebee (I'm told) and was stung on the hand... so the bee terror has existed ever since I can remember.  When I ran crying inside because "there's a bee out there," I was always told, "Don't bother them, and they won't bother you."  Which has turned out to be abundantly untrue.  How have they stung me?  Let me count the ways!

• Stung in the face while walking in the woods (hornet was flying one way, I was heading the other)
• Reaching up to fix my hair, bee on barrette.  I was in a college class.  I shrieked.  The professor, the dear Dr. Marshner, said, "Madam, are you terrified of that creature?" He picked up the nearest guy's backpack, slammed it onto the bee on my desk; the class roared with laughter, while he continued teaching as though nothing had happened.  This was probably the most entertaining time, followed by this close second
• Sitting on a bee that was between couch cushions.  While with a date at a formal dance.  Oy.

I think this is the only other time... Never had a reaction before.  This was a honeybee; besides the hornet, the rest were yellow jackets.  Huh. Go figure.  

Obvious moral of the story: ladies, beware your choice of clothing this summer.  Animals and insects may not be able to control themselves.  :)  

Oooo I get to look up a Bible verse on bees: "Compared to most flying things, a bee is very small, but the honey it makes is the sweetest of foods." Sirach 11:3 Hmm.  And their sting is a big pain in the... well, one might add that, for realism... just saying. :)

Ugh

Feeling lousy. And it's all the fault of this object:

More on that later. Pills, bathroom, and bed are calling... Annoying but nothing serious. Oremus pro invicem! :S

Testing

"He gives strength to the weary, and increases the power of the weak." Isaiah 40:29

Glad about that. :)

You know you're a mom when an MRI appointment feels like a vacation.  Hours of quiet alone!  The bliss of waiting in a child-free office!  The prospect of lying down on a table for a full hour, with strict instructions not to move!!  :)  And I was happy right up to the point where I was told they were going to (very slowly, they assured me) inject me with a substance that was to "paralyze my intestines, just for a few minutes." 

Say what?  Swell, guys.  Way to ruin my mini vaca.  I inquired as to whether this substance would stop any other of my vital organs "just for a few minutes."  I was assured it would not, but that I may experience some nausea.  I sighed, moved my head back two inches to where I was strapped and nested onto the narrow table, ready to be slid back into the tube called an MRI. 

A tough looking male nurse was on standby on my left, adjusting the tubes for the infusion machine.  The 20 something girl on my right began the injection into my IV lead, glancing at me with a partially reassuring smile.

"If and when I puke, do I turn to port or starboard?"

The guy on the left grinned and brandished a large plastic bin at me. "Turn here! I've got three kids; I'm a pro."

Three kids.  I have six, right?  Or four?  Almost five?  It's hard to decide how to answer that simple question sometimes... I stopped my sinking thoughts, smiled, and asked for their ages.

The tiny girl with the needle keep asking "Are you doing okay?"  Every ten seconds or so, which tread the line of sweet and annoying.

Well... Yes and no.

Like when I went for the intake for the MRI... they read the order and asked, "Oh... boy or girl?"  Apparently updates had not been made...

Oh. A little wave of quiet sadness.  "It was a girl.  But I lost her."

Gosh that spoiled the mood... Her face dropped.  We had previously been engaged in witty sarcastic banter about how delightful it was to be on a basement on a gorgeous May morning. 

"I'm so sorry."

"Thank you."  I really try not to say "it's okay," because I mean, it's really not.  And it doesn't seem to make sense to just say "it was a girl," because then she might ask more questions and I may have to tell her anyway.  Seems best just to say it. But I haven't figured out a way to say it " gently" enough it seems... And then the reaction to the bad news reminds me, again, how much I lost.

The MRI is the first of a bucket list of "after the baby, I need to check out this or that random part of my body that is acting up."  At the risk of sounding like a hypochondriac... there's plenty wrong with me at the moment, being the queen of auto-immune issues that I am.  Fortunately, my swelling hands responded to prednisone, but with increased aches and pains I'm now I'm supposed to switch from Humira to Remicade... I'm going to try a more natural route first.  The sharp pains in my abdomen that pre-dated my pregnancy have now been "MRId" and then I have to have my fav: a colonoscopy. My fifth.  It's a special treat reserved for Crohn's patients: every two years instead of ten for that procedure.  Oh yes, not to mention the geneticist and my dear Napro-tech doctor, who spends so much time reading my charts, autopsy reports, genetic findings, interpreting them, encouraging me to take even more thing, but good things, like magnesium and Vitamin D... which I severely overdosed on, mistakenly taking a "once a week" tablet once a day... but I'm not glowing like the sun yet, so all's well that end's well, I guess?  But man, doctors, tests, meds: I'm exhausted just thinking about all this. 

It's worth it to me to discover and rule out causes though, making sure I'm healthy as possible in the future for... whatever.  I'm glad I didn't have the MRI during my pregnancy, like the doctors had wanted me to.  One less thing to wonder about.

I didn't puke.  My infusionist was pleased.  The machine slid me in, and I was left alone.  After the initial, "Eeeek!  I'm in a tube!" feeling, I don't mind my MRI's.  I bring my own ear plugs though... the first time I panicked and was sure the machine was malfunctioning but no, it's supposed to beep loudly and honk and groan. 

Through my headphones: "Take a breath. Hollld it."

I did.  I am.  Holding my breath. Waiting to "get better." To not break down in public. To not have the bad dreams. To not play Taboo and, even while having a blast, somehow wanting to guess "baby" or "pregnant" every few cards or so.  Even when I think I've really moved on, I'm learning that there are just going to be bad days.  And it will be okay. 

Breathe.

The whole is greater than the sum of its parts

Which do you want first: the good news or the bad news?

The good news: we learned the autopsy results.  The bad news: we learned the autopsy results.  They weren't good.  Then again, are autopsy results ever really "good"? 

One real positive thing: I can officially tell you pregnant mommas who've been brave enough to keep reading all this that--as far as what happened to Perpetua--you have nothing to worry about.  Because, as it turns out, it was all me.

We were escorted to an office, a different one than before, with a shiny desk adorned with the remnants of a KFC snack bowl and medium beverage, condensation dripping down the side. "Oh.  Sorry about the clutter."  The doctor plopped into her wheeling chair, looked at her papers, sighed, and delivered the following:

"The results were significant.  Not that you are to blame, but your placenta... basically you had preeclampsia.  I've never seen it this early, so I assume it's caused by an underlying medical issue you have.  Possibly lupus.  Anyway, the fetus was normal, but was eventually not able to get enough oxygen due to the placental issues.  But don't worry... were you to get pregnant again, the solution may be as simple as a daily baby aspirin to help thin your blood and prevent clotting..."

I've never been in a free fall, but I think I kinda know how it feels now: I'm thinking that it gets really quiet from the rushing of the wind past your ears like white noise.  That you feel numb from the chill of the speed of your fall.  That it's cold, and numb, and quiet, and you wonder when it will stop.

I know it's not "my fault."  I know I didn't intend it, and would have done anything to prevent it.  But for the record, baby girl: Momma is so very, very sorry that her body failed yours.  I'm so sad I didn't know in time to fix it, if I could have.  I'm so sorry I didn't know that you were quietly getting too sleepy to survive and live to be my baby here, like I'd hoped you could...

As for my "free fall" comment, I actually stayed in my chair... couldn't have moved if I wanted to.  I really did think (and hope) the problem was some genetic fluke that meant the baby couldn't progress further than she did due to an inherent error in her chromosomes.  In other words, that she'd lived as long as she could.  I guess I wasn't prepared to hear the baby was normal, and I was not.

I believe I was calm and monotone as I asked my questions, and requested copies of the pathology report.  The write-up's almost incomprehensible, every other word a complex medical term you feel you need a college course to understand.  Ever feel like you majored in the wrong thing?  Golly.  I've still been trying, Googling every word separately and in phrases to try to understand better.  Mostly getting studies on rat embryos, nothing particularly helpful.  Try these out for size: "Severe decidual vasculopathy." "Fibrinoid necrosis."  "Avascular villi." "Pervillous fibrin deposition." 

Now trying saying those in an accent. :)  Sigh...

And then there's the stuff that's easy to understand: "Markedly abnormal placental tissue."  And what I guess is typical pathology report style: a moment by moment description of what the researcher was doing.  Color, texture, weight in grams of everything... great appetite reduction literature really.  X-rays had been done.  Apparently there were pictures taken of her after all.  (!)  The baby was completely normal.  But concluding the perinatal report: "Severe preeclampsia with marked maternal vascular disease."

My friends, I will be going to doctor's appointments for a lonnng time it seems, blood tests, MRI's, the works... trying to find out what bizarre disease (if that's actually what it is) I have that can cause problems like this, or blood clots in me, to find out what happened with this pregnancy and how I should proceed for my own health.  In the doctor's words: "I've never seen anything like this, preeclampsia so early on, without high blood pressure or anything..."  Shhwell.

Wow.  I really did take my fertility for granted before all this.  It is just so darn easy for me to get pregnant.  (No, I didn't mean it that way... oh never mind. :)  After my second unplanned pregnancy within two years of marriage, I had been completely convinced that "Dancause" may as well be "Duggar," at least until I actually learned Natural Family Planning. :)  And overall, I really did think, that if I had two strong lines on a stick, and had awful morning sickness, and didn't smoke or drink or eat too much tuna, and made it to 17 weeks... that everything really was going to be okay. That it made more sense, at that point, to worry about getting struck by lightning.  But I was wrong.

We aren't in control, no matter how much we want to be, no matter how often we think we are.  Ultimately, we are wearing seatbelts on a sphere spinning through space, upheld by a Power far beyond our reckoning.  I'm grateful I have a personal relationship with that Power, and that He loves me.

I'm still not mad at Him.  I'm kinda surprised about that, waiting for the rage at the "unfairness" of it all to hit and me to go through the motions of trying to blame my Creator.  Who knows, maybe it will at some point.  I don't blame the people who are mad at Him; He can handle it and guide them on their own journey...  I mean, I was plenty mad during my first miscarriage: the early one, Gabriel.  I felt completely betrayed by God then.  The weight of the unanswered "why" was too great.  It took time to get through that and to let go of that primal anger at losing a child I was "supposed" to have. 

But now somehow it just seems that I don't have to know the "why" right now.  I have the medical "why" I wanted, or the beginnings of it, but the "why" of God allowing it... I'm leaving that to Him.  I am leaning on my faith that the God who loved my child into existence hasn't changed His mind about that at all.  She still exists.  And He still loves her.  And we'll all be together again someday, gloriously happy in eternity, the Whole that is greater than the sum of all the fragmented earthly parts of a much bigger and better plan.  Because hey, if this life is all there is, there is simply not nearly enough chocolate to keep me happy... I'm just gonna say it, cuz we're all thinking it.  :)

I was the careful mom that stayed far from the edge and yet fell off a cliff.  But somehow, God has been there to catch me.  Somehow, I love and appreciate Him more than ever.  Partly because this has been so awful that I've really had to "give" this whole situation to Him, because I just couldn't bear this on my own.  Even being cynical: doesn't it make sense for me to keep working on a relationship with Him, since He has full custody? :)

With all the sad things that can happen in this world, either the universe is a cruel joke run by a blind Deity, or our losses here are all part of a greater gain.  Even the shortest lives here are ultimately too precious to be a waste, too important not to matter. 

Nothing good is ever truly or permanently lost.  More than ever, every day, I remember what I have to look forward to.  More than ever, every day, I'm thankful

for the blessings

I got to keep.

Then the Lord answered Job out of the whirlwind, and said,

'Where were you when I laid the foundations of the earth?
Tell me, if you have understanding.

When the morning stars sang together, and all the sons of God shouted for joy?

Have you ever given orders to the morning or assigned a place for the dawn?

What is the way to the place where light lives?'

And Job answered, 'Surely I spoke of things I did not understand,

things too wonderful for me to know.'"

Job 38:1,4,7,12;42:3

May Day

I'm tired.  The steroid treatment is over for my swollen hand and I kinda miss the overdrive if I'm being honest...  Instead of burning through more household piles in an organizing frenzy last time I found myself kid-free, I instead caught myself still sitting in my mini van, vaguely observing my gluten-free neighbor doing yard work while I ate a muffin.  She has had the nerve to get super-skinny.  I feel I've lost the unspoken over-sized-tee-shirt camaraderie we once shared from across the street.  Sigh.

So as you can see, I've been busy.  Started the weekend off at Dave and Busters, also kid-free, attending a function called "Grill the Priests."  An awesome open-forum event where the crowd could ask anything they wanted about Catholicism from a panel of brave priests.  Sold out, packed event room.  Afterwards you could play arcade games with a Dominican in full garb while everyone whispers comments.  Wicked cool.  :)

On the not so great side, a favorite tree in "my" playground across the street is being terminated... seems Earth Day was sooo last week.  :S  More negative playground news: it seems I lost my necklace ("the" necklace) at a playground in... another state.  This has been a perfect excuse for online Mother's ring shopping whenever I miss it now.  Hoping to get all my kids' birthstone on a ring a tad too small for my finger--maybe one I kinda have to jam on--so there isn't a chance of it coming off and getting lost...

One positive playground note: a motherhood milestone was passed with my preschooler used a porta-potty for the first time! She did not touch anything disgusting, nor did she panic that "the toilet wasn't flushed."  Proud of her.

Those of you checking in for actual news will notice, no doubt, that I have not given any.  This is because I have none yet.  On May 1st, as scheduled, with a wonderful friend watching my kids and my wonderful husband taking a day off, we sat in the self-same office I'd been in in March (the one with the kinda creepy Ann Geddes babies emerging from sunflowers) and was told the following:

"Pathology isn't finished with the autopsy results from your D&E yet.  I'm sorry.  But don't worry, they still have slides of the brain, liver, kidneys, heart, and everything else.  They just aren't finished yet."

You can just imagine my "relief" at this non-information after a week's sleep full of odd nightmares like: "Perpetua died because you consumed too much mayonnaise.  Those are the autopsy results.  In future pregnancies, please refrain from the consumption of condiments."

I was assured I would be called when results were in, apologized to for the office keeping an autopsy review appointment when no autopsy results were available, and told to expect a call "soon."  I went home and dug in the freezer for the "Chocolate Therapy" a very dear friend had given me for just such an occasion.  Mmmmm.

Then this morning, as I was contemplating how to communicate my "non news" in this post, the phone rang with "OBGYN" on the caller ID.  Now, I had been planning my writing in the place I write best: the shower.  But this phone call was probably "the one," so I jumped out, grabbed my phone, lost my grip on it, fished it out from a puddle on the floor, frantically patted it with my towel, and said "Hello?!?" while trying to shut the shower off.  I was in "pre-rinse" stage.

"Is this Katherine?"  Cue screaming 1 and 3 year old at door.  "Yep, it's me."  I pull the door open, hoping I could quiet things down quickly.  A very dangerous diaper was drooping around little knees.  Swearing interiorly, I grabbed wet wipes and laid out fussing toddler on the towel I was supposed to be standing on.  With no other option, I tapped "speaker on."

"We have the pathology results.  The doctor would like to discuss the findings with you, and make sure you have your genetic blood work done prior to..."  Wiping furiously, I looked up at Cecilia, who was admiring herself in the mirror.  "Mommy, you are wery wet!" she loudly proclaimed.  "Mommy, you have soap on your arm!  Mommy!!! You have nothing o..."

I tossed a towel I had grabbed for myself over her head, and she roared in delight at the new game. "Speaker off." 

"Ha ha, I'm so sorry.  Please go on."

Felicity was upset not to be part of the game, and her wails necessitated a call back several hours later, after an 8 minute wait, to reschedule what May 1st was supposed to be.  Now, it's May 8th.

Groan. 

To go along with my little playground theme: this is exactly how I feel about finding out:

I want to know, because maybe I could fix something for the future for my own health or, possibly, for another baby should I be so blessed.  But that would mean I could have fixed something, possibly, for her.  Either way, this is going to be hard, and I'm not looking forward to it.  Either way, I'm definitely finding out, despite certain family member's encouragement not to.  I want to know everything I can about this child, whatever it is.  Especially with all this fuss and turmoil to get the information.

"Not knowing" is not terrible meanwhile, though, not really.  Trying to remind myself of that.  When I was in church choir as a teen, we sang this song once...  I haven't heard it before or since, but the words struck me.  It's loosely based on Scripture, written by Dan Schutte... who is not exactly my favorite songwriter, :) but the words give me something to think about during this time.  Here's the refrain:

Holy darkness, blessed night,
heaven's answer hidden from our sight.
As we await you, O God of silence,
we embrace your holy night. 

Basically, while I'd sure like to know more, I don't need to know everything right now.  But I'm glad He does. 

For your further entertainment, I'm attempting to attach a link here.  The song's pretty.  The words are profound at times.  The crucifix is apparently backlit by a Dreamlight... a kid's toy that changes colors every minute or so.  Still... :)  Enjoy if you will:

http://www.youtube.com/watch?v=k6NWR08ts_w&feature=player_detailpage

Well some results are in...

And one of them is that Nationwide ain't on my side.... You know how the elderly gentleman spun out of control in the right lane, kept spinning into my lane, hitting my van in the front? Turns out, I rearended him.  Yeahhh.  That is news to me.  Currently, our 21st Century insurance is arguing with my "victim's" Nationwide.  We will see how things turn out.  Ah financial issues, our old friend...

So the available distractions from the great mysteries of death, life, and the will of God are increasing in number and intensity.  I am also trying to hyperfocus on organization and spring cleaning now that I ... feel better and oh only about five pounds lighter due to the consistent supply and consumption of brownies and lasagna and the like these weeks. Nice try guys... keeping my weight up. :) You have been such a blessing.  I mean even on my best days, every time I open the fridge I feel like I'm in an episode of Chopped.  I'm quite sure there would have been several days I would have forgotten to cook at all, let alone know how to.  :)

Life sure goes on.... Dan is even preparing for a business trip to NYC next week (though for just two days). The older girls have rehearsal for their choir concert almost every night next week. The younger girls have had the croup for days.

And how am I doing? Well, somewhere in between "pretty good" and "how do I go on?" :S  I like the sunshine. I like normal clothes. I love not being quesy.  Yet I wept today while picking up toys, because I found the mommy in the "Kiss and Care" cow set Felicity likes... but I still can't find the calf.  :S

I've actually had a couple tear-free days now, though not consecutive ones yet. Other than some minor physical symptoms, the occasional sad note or drawing from Annemarie and Claire, and my husband's more constant inquiries if I'm "okay," I have moments where I actually wonder if all this was some bad dream, and where on earth I came up with this awful story I keep writing about.  But then there are aching moments of sadness when something changes from the before to the after, and it can be the darndest things... Most recently, it was finding that we'd left a computer running for a couple months.  The moment it was turned off, I felt yet another of those tiny changes from the beloved reality of the past to the emptier present, and it is so bizarre but golly it hurts.

Sometimes these more unreasonable things bother me more than the obvious things which do (indeed) prove this all is real: like today when Women & Infants (yeah the same hospital that performed my surgery) sends me this big fat envelope congratulating me on my pregnancy and telling me now's the time to schedule birthing classes.  Also in the packett was a brochure with a newborn's hand saying "This is Why." (I assume the end of this sentence is "[why] we do what we do.")  Two weeks ago, I was handed the sister brochure to this one, with a smiling older woman going into surgury, and the words "This is Why" on the front as well.  This was particulary odd since I was handed this brochure within minutes of finding out my baby was dead, and the biggest question was (and still is) "Why?!?!"  And somehow I don't think it was to become a smiling surgury patient at this somewhat insensitive hospital....

But yes, back to this post's title, we are a tiny step closer to finding out some answers.  I've had only one follow-up doctor's appointment so far, though there are many more to come.  And I did actually receive some results on Perpetua. I had imagined I'd receive these results in an office with a large, highly-polished desk, surrounded by inane floral decor.  Instead, the first pathology reports suddenly appeared while I was perched on a high exam table, decked out in a paper skirt, fighting the urge to yell and throw things because I was also between an ultrasound machine and a huge wall chart of "Your Baby's Development Week by Week."

Now I'm still waiting on the (hopefully) more conclusive autopsy results. But I will type verbatum the results of Perpetua's genetic testing, delivered in the sensitive manner described above:

"Results & Interpretation (Verified): Female result with a gain of 912 Kb at 6q14.3 of uncertain significance."

Say what?  The dear doctor, pulling from a decade's old bio-chemistry degree, tried to decipher this along with me.  And very basically, it means Perpetua did have something abnormal in one pair of chromosomes, with the right chromosome having more genetic material than the left.  This particular chromosomal abnormality has only been observed in one (!!!) other patient, ever.  And in that case, the baby lived.

The conclusion of a page of barely comprehensible findings states the following two sentences:
"The significance of the gain at 6q14.3 is uncertain.  Genetic counseling is recommended."

So yeah, I think I'll wait for the autopsy, which I hope and pray will be in English and intended for those of us with liberal arts educations.  And baby girl, I don't care what rare thing, significant or insignificant, was different about you.  I love you perpetually.  :)

The most positive experience I've had since I last posted was meeing with a fellow mom who has experienced this type of loss, and has actually had to do so three times.  I stayed out with her till 11; I don't think Panera dared kick out two sobbing ladies from the table way in the back, hee hee.  She gave me a necklace with silver threads wrapped around two shining beads, to remember my lost little ones: Gabriel and Perpetua.

It is perfect.  Such a comfort to have something tangible to hold when I think of them, especially after my hands have (again) automatically sought my once rounded belly.  It is so helpful to remember, in this time when I feel so literally empty, that I am never alone.

"So do not fear, for I am with you; do not be dismayed, for I am your God.

I will strengthen you and help you; I will uphold you with my righteous right hand."  Isaiah 41:10