Monday, August 11, 2014

When Love Isn't Enough - The Musser Family Tragedy - Part 2

Before Tommy arrived, Susanna was already exhausted: "Get up half an hour earlier because Daniel will be working with his dad and grandpa all day.  Katie and Verity are still dry; take them to their potties right away.  Have Peter fill the humidifiers.  Need to eat.  Make sure to fit in phonics flashcards with the little boys and catch up on our history reading.  Sit down and breathe in the sweet scent of clean heads. Ask John Michael to do his “cleaning the glass” chore before the therapist gets here.  Ask Laura to write baby bath on the grocery list before I forget again.  Have Joshua scrub up some sweet potatoes and put them into the oven to eat with our supper.Need to make that phone call before office hours are over.  Must choose photos for Katie’s twelve month post-placement report.  Take a few more “Photos of our Family and Home” for Tommy’s country. Jot a note to ask Daniel for a complete inventory of what’s in our two refrigerators and five freezers so I can finish reorganizing the meal planning and freezer cooking.  Must fold and put away the little girls’ laundry and lay out tomorrow’s clothes.  Answer a few more emails before the lapse of time grows to downright insulting lengths.  Need to keep my eyes open a little longer to be a sounding board for a teenager.  
Plan and prepare for three birthday parties this month.  Plan and prepare for a couple of field trips.  Have leisure time on field trips; take plenty of photos. Plan and prepare for company for supper again this week.  Just two therapy sessions this week.  Compensate for one of our household helpers being on vacation.  Do all this and much, much more…with washing machine broken down, slow cooker broken down, and sick children.  Verity cries every time someone coughs, sneezes, or blows their nose.  I am left sweating and exhausted every time I work with Katie to transition her to her new adaptive toilet seat.

And trying to pre-plan as best as possible:
"But the best part about this storm for our family happened after the therapists called to cancel this week’s therapy sessions.  Since the beginning of September, knowing that 2013 may well be the most challenging year our family has ever experienced, I’ve been systematically targeting every area of our household that shows signs of loose ends, and working like mad to bring it back under dominion, from our kitchen cabinets to our Sunday morning schedule.  It’s been pretty slow going, since there’s not a lot of extra time left after home schooling.  By this past Monday morning, as the bone-chilling rains fell and winds blew, and therapies began to be re-scheduled, I had been working for weeks on completely re-thinking and re-organizing our menu plan.  The break this week has been such a welcome gift of extra TIME from God to us.  Just rain rain rain, snuggling up together to read aloud, some delicious homemade meals from a friend, and TIME to finish the menu project and begin the ongoing task of putting homemade mixes and other foods into the freezers.  And beginning to reclaim the next territory.  Because God is growing our family, and we want to be ready!"

And not sleeping much : 
"A pregnant mama needs more than the four or five hours of sleep I’ve been getting during this time."
"Confession:  Did you know that since I began blogging more than three years ago, I’ve pulled overnighters four times, and that all four of those times occurred within the past six months?  The upcoming Musser family update may help you visualize why my writing time is dwindling fast.  <grin>"

After Tommy came home, Susanna continued to ask for help from friends and family - who stepped up to the plate.

What were some of the issues the family was facing?
Since Tommy couldn't eat solid foods, Susanna prepared pureed meals for him.  (This means that Tommy was seeing a speech pathologist for food training and an occupational therapist for small motor skills in his hands)
IMG_0589 IMG_0590IMG_0597IMG_0593

Katie was still working on feeding herself due to coordination issues. (Katie probably saw an occupational therapist)

Tommy and Katie were working towards independent walking (Cue two more therapist visits for physical therapy)
IMG_0596 IMG_0662
Verity and Benjamin continued to grow. (Verity likely saw some combination of rehabilitation therapists including speech and OT; Benjamin just needed all the things a young baby often needs.)
IMG_0722 - Copy IMG_0738

In short, Susanna was balancing at least 7 separate therapist visits per week for Tommy and Katie plus however many visits Verity needed and the needs of a small baby.

(My mom talks about how hard it was when my twin sister and I were small and they had no other children.  We both needed physical therapy and Rachel needed speech therapy.  Balancing those visits along with trying to keep a schedule for two infant/toddler girls was a full-time job in and of it's self.  I cannot imagine how much harder it would get with three children and a baby.)

Plus, each child would have at-home activities to do from each therapist.
Speech for Verity
OT and cognitive for Katie
PT for Tommy

Speech and tactile for Katie
OT and colors for Verity

Four children who were not toilet trained lead to some rough days:
Okay, that’s only part of the truth.  The rest of the truth involves spectacular displays of revolting, uncontrolled bodily substances and multiple diaper fails.

How many nights were like this one?
12:00 am:
 <stre-e-e-e-etch>  It’s midnight.  I didn’t accomplish all I’d hoped to, but I can’t focus my eyes on my work any more.  It’s past time to wrap up my Planning Night.  Just need to wash my face and brush my teeth, and I can snuggle in bed for Ben’s dreamfeed and then sleep.

Ah, blessed sleep.

Walking through the hallway, the air rushing past my face on its way up to the attic fan feels refreshingly cool.  I detour through the boys’ room.  When I bend down to look at my newest boy, I’m surprised to see bright eyes shining back at me through the darkness.

“Hi Tommy!  What’s keeping you awake in the middle of the night?”  He grins in response to my smile, my teasing whisper and pat on his belly.

Maybe he’s chilly in his shorts and short sleeves.  And I can give him a dry diaper at the same time. 

“Come here, buddy; come to mama.  Let’s go get you some warmer clothes.”
Huh.  Good thing I checked on him; he’s wet through already.

12:15 am:  I lay Tommy on the bathroom floor and flip on the overhead light.

Oh my.

Repulsive black goo is oozing generously from around his waistband, front and back.  He flaps his arms and legs and shrieks with glee.  I hastily clear the area of anything within his contaminated reach.  He giggles, immediately jerking his body, twisting and reaching for the objects I moved and scooting on his back toward them, leaving a black smeary trail.

I wash my hands with anti-bacterial soap and scoop all movable items out of the lower half of the bath and shower area, then lift him into the bathtub.  I wash my hands again and clean the floor.

He grows more and more delighted about this unprecedented middle-of-the-night social occasion and begins to shriek happily over and over again, flapping his hands and feet, slapping them onto the front of himself.  As he flaps and slaps, little black splatters appear all around him on the tub, walls and shower curtain liner.  Black ooze spreads all the way up to his shoulder blades and down one sleeve and arm.

Quickly gathering his clean diapers and clothing, I flip on the light to examine his bed.  By some miracle, there is not one sign of the latest explosion.  How can that possibly be?  His bed isn’t even damp; it smells just as clean and fresh as when the Amish girl changed sheets that afternoon.


12:30 am: Explain the untimely shenanigans to a bleary-eyed Joseph. 

Smile at Tommy and chat about what I’m doing as I commence to peel the repulsive garments from his body and wash him amid enthused splashings and shriekings. Help a warm, stiff and slippery little person out onto a thick towel and drop his soiled clothes into the tub.  Dry him briskly.  Fasten the inner diaper (size 6) snugly.  Fasten the outer diaper (youth size XL) snugly, holding everything in place with two tapes on each side.  Help him to a sitting position and pull the clean, long-sleeved shirt over his head.  Help him lie down again and pull the elastic waistband of his sweat pants up firmly, making sure his shirt is well tucked in.

“There now, Tommy-boy, doesn’t that feel better?”

12:50 amWrap my arms around my little boy and sing “Jesus loves Tommy,” rocking him back and forth as I perch on the edge of the bathtub.  He smiles into my eyes, giggles, and pulls the snap clip out of my hair.  Carry him back to his bed and give him extra squeezes and kisses.  He accepts his pillow and hugs it to himself gladly.

“Goodnight, sweet boy.”

1 am:  Rinse disgusting garments in cold water; wring them out well and stain treat them.  Spray anti-bacterial bathroom cleaner thoroughly over entire bathtub and shower curtain liner.  Scrub and rinse.  Scrub my arms and hands with anti-bacterial soap and put on fresh pajamas.

Wash my face and brush my teeth.

1:25 am:  As I re-enter my room, I remember–oh yes, the dreamfeed.  Ben gets a dry diaper and then instead of snuggling in bed, I grab the Boppy pillow and nurse baby boy while typing this post.

2:05 am:  Ben burps on my shoulder, then suddenly fills his diaper while gushing sour curdled liquid down the front of my pajamas.

I change his diaper, swaddle him, and place him back in his wee trundle bed with many kisses on his little soft face.

Then change to fresh pajamas once again.

2:15 am:  All is clean and peaceful once more.

[Now I'm wide awake and hungry.
Good thing, because next came Stephen, knocking at the door with a fever and a tale of a biting spider and pincer bug in his bed, "so that's why I have to sleep in here." I finally fell asleep just past 4:30 am, to be wakened by Ben at 5:30.  Did you know that four can fit in a full-sized bed? Heh heh.]

In a later post, Susanna explains that "What you do not see in the photos is Tommy’s countless diaper explosions and all the many ramifications of said explosions to his ever-shrinking wardrobe, our schedule, our carpet, my decisions to take him in public." (Ed. Note: "decisions to take him in public" should not be taken to mean she was embarrassed of  Tommy; imagine trying to clean up the diaper explosion that she described at night in a McDonald's or at a festival.....)

If that isn't hard enough, Susanna had 4 teenagers and 4 school-aged children at home that she was home-schooling.  The exhaustion must have been grueling.

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