When Love Isn’t Enough – The Musser Family Tragedy – Part 2

When Love Isn’t Enough – The Musser Family Tragedy – Part 2 August 13, 2014

by Mel cross posted from her blog When Cows and Kids Collide

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)
musser9
musser10
musser11
musser12
Katie was still working on feeding herself due to coordination issues. (Katie probably saw an occupational therapist)
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)
musser14
musser15
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.)
musser16
musser17
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
Speech for Verity
OT and cognitive for Katie
OT and cognitive for Katie

 

PT for Tommy
PT for Tommy
Speech and tactile for Katie
Speech and tactile for Katie
OT and colors for Verity
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.
 
<whew>
 
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 am:  Wrap 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.

Read everything by Mel!

Mel is a science teacher who works with at-risk teens and lives on a dairy farm with her husband. She blogs at When Cows and Kids Collide 

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What Are Your Thoughts?leave a comment
  • Nea

    I want to be sympathetic. I do. She obviously had good intentions.

    But we all know where the road of good intentions leads. She constantly relies on prayer or happy thoughts (like her long set of sparkly rationalizations as to why a too small house was just peachy). This drive for “dominion” completely blotted out the reality of someone badly lacking sleep, overextended, and completely unable to see that no one, including and especially her, can keep up with it all.

  • Independent Thinker

    Part of the purpose of being married is to have an accountability partner. The fact that her husband isn’t reading her blog and shaking in terror baffles me.

  • Lucreza Borgia

    A lot of people vastly under-estimate the amount of time and effort that it takes to be a full-time caretaker to a person with both physical and developmental disabilities. It’s hard to say what level of DS Verity has and while many people with DS go on to live fulfilling lives there are many who will never be independent enough to live on their own. Katie will probably never be of normal stature but it is clear she is growing. Tommie probably would have gained height and weight as well. As all three children aged it would have gotten harder and harder to take care of their needs without significant social services. It’s not wrong to rely on social services but they are not easy to get and can be prohibitively expensive. Who is to say whether or not the mother would have allowed social services into the home on a full-time basis?

    It’s admirable that she asked for help but family and friends get burned out pretty fast. They help out for a year or so and then typically fade into the background. This is a well-documented issue for parents of special needs children. Love is not enough.

  • SAO

    Family is usually willing to help, but with a full house, a disabled child and adopting two more disabled children, I think I’d feel abused, if I were in her family, like she took on more than she could handle with the expectation that others would pick up the slack for her, without asking them if they wanted to spend several hours a week helping her.

  • Joy

    I’m not familiar with the family or this story so I may have missed it. Did she even mention her husband in this post?

  • Lucreza Borgia

    There is a strange, almost fetish like fascination with disabled orphanage children within certain communities. It wouldn’t surprise me if people offered to help out during the initial phases of the adoption process and then later drifted away bit by bit.

    My eldest nephew was born severely disabled. The evangelical church community rallied around my brother and his wife and many people prayed for my nephew’s healing. Family and friends were falling over themselves to help. As the first year dragged into the second with no real change in his condition people stopped offering to help. He never progressed past infancy mentally and died at the age of 15. For a large part of his life my sister-in-law was his sole caretaker. After he died, she went a little crazy. They are divorced now. I think I would go crazy too if I had an infant for 15 years.

  • SAO

    This is why we need government assistance, such as it is.

  • Laura Turner

    I don’t know this family, but I don’t think they were doing anything but trying to save and give love to as many children as they could. Many Christians are taught that they must die to self and give their lives as a sacrifice to God. And they willingly and knowingly choose to do what is too difficult or what hurts them in that process of sacrificing. Once in a situation when it’s too difficult, it would be nearly impossible to ask someone else to come alongside you in the sacrifice. Once you have that houseful of kids, you can’t really give them back or get your neighbor to help you clean explodo poop at 1 am. All you can do is cope the best you can, and I think that’s what Susanna Musser was doing.

  • Independent Thinker
  • Astrin Ymris

    And that’s why we need Adoption Reform, in order to “save these parents from themselves” as one commenter on the ReformTalk site put it. They’re going to get fired up reading the oh-so-positive megafamily adoption blogs, and decide that God is telling them to adopt. It’s frequently stated that this is the purpose of such blogs, to “show other parents that THEY can do it too!”. Conversely, on ReformTalk we’re regularly scolded for “discouraging adoption” when we expose the tragedies, failings, and trainwrecks that occur as a result of this meme.

    No matter how devout you are, you can’t redline your body and spirit forever. It doesn’t work. We’re human, and we need physical and emotional downtime.

  • Nea

    I haven’t spent a lot of time on the original blog, but I first became aware of the family after a post of hers was quoted about how a far too small house was just fine. Her rationalizations included not hurting her husband by being the kind of wife who demands more from him than he can provide, (The adoptions weren’t already more?) and that the crowding led the kids to play outside in the fresh air and sunshine most of their time.

    This post makes it clear that the rationalizations include it having to be HER who does all the work of managing the special needs children despite the obvious toll on her, and that her husband won’t let her sleep in nor either of them delegate a child to handle the occasions when she hasn’t slept at all and the help isn’t around. This is ridiculous. It’s bad for her, bad for her pregnancy, and it got Tommy dead of neglect.

    Her use of the word “dominion” to describe control of the house chilled me. There is no way to have dominion over such chaos that it is kept 100% in check — heck, I have far less to wrangle and still have emergencies to deal with. I am not foolish enough to think I will ever have “dominion” o

  • Nea

    Over all I see, and I’m allowed to rest when I need it.

    (The ipad/discus clash is getting worse. This is the first time I got cut off in mid word.)

  • SAO

    I suspect there’s an element of “only I am a good enough Christian, only I have enough love, only I can do it and because God loves me for being such a great Christian, he will not give me more than I can handle.”

    That’s incredibly delusional and arrogant thinking. I’d bet the blog got Musser all sorts of supportive comments about what a hero she was, how God wouldn’t let her down, etc, etc. In short, reinforcing her delusions.

    I kind of wonder, in a subculture that allowed women to be whatever they want to be, rather than expecting them to be meek homemakers, would Musser’s ambition and drive to be exceptional have made her into a success? A leader, a congresswoman, a pioneering scientist?

  • Michele Tattoli

    I feel bad for her. She got in way over her head. It’s just impossible to do what she was trying to do. Even if she wasn’t homeschooling that would be way too much.

  • centaurie

    I don’t think it’s because your nephew remained an infant the entire time, I think it’s because your SIL devoted her entire life to his care, end then that ended, so she probably didn’t know what to with herself anymore (if she saw as her sole mission in life) and the husband reacted….badly to that? (Not that uncommon in this sort of cases, I think)

    (Disclaimer that the only things I know about the whole issue is what you’ve just told me,so I might be completely off, since I don’t know every single factor)

  • Serena763

    This collection of special needs children is a dangerous thing and I do not think they think “long term.” My mother started with foster care and then decided to adopt (against the will of the family) a special needs boy. She believed she was a great christian and that God would heal this boy and she would earn mega points with God. Despite everyone begging her not to and myself trying to explain that brain damage cannot be healed…she adopted my little brother. Hell took hold of our house. He was a nightmare, it ruined already strained relationships as well. He required 24/7 care and was dangerous when not medicated heavily. Now they are trying to retire and he will be with them forever. They cannot have their grand children over because he is unpredictable. Now I must worry what will happen to him when they can no longer care for him??? Jail? Living on the street?? It’s a terrible thought that haunts me every day. This is just ONE low functioning child. ONE.

  • Lucreza Borgia

    While I would agree with you, at least with children that are more aware there is some sort of reward during the caretaking process. The only thing that changed about my nephew develomentally was his size.

  • Mermaid Warrior

    Agreed. People who adopt so many kids they can’t take care of kind of seem like “child hoarders” to me. Even if they have good intentions, their actions often cause great harm. They’re more concerned with getting more kids rather than taking care of the ones they already have.