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

The Musser daughter behind the bride is the same as Katie
 who Susanna is holding. Tommy is the same age as the son
between the groom and Tommy in the back row.

(Ed. Note: As I've been reading Susanna's blog, I realized that their family has especially poignant reminders of how much as been taken from Katie and Tommy.   Katie is the same age as one of their biological daughters.  Tommy was born in the same month as one of their sons.  Verity is a wonderful example of how early intervention can help children with disabilities thrive and the youngest infant son, Benjamin, is already moving beyond Tommy in areas of social development.)

Even before Tommy's death, the Musser family was grieving.  When a family lives with a child who has a disability, the parents go through cycles of grief involving denial, anxiety, fear, guilt, depression and anger.
Susanna often alludes to guilt or anger, but always minimizes the feeling by explaining how lucky their family really is.

In addition to a grueling schedule of therapists and daily care for 4 children with developmental ages under 4, normal care and home-schooling for four children with developmental ages between 5 and 8, and normal care and (possible) home-schooling for four teenagers between 11 and 18, Susanna was dealing with waves of emotions from both Tommy and Katie's years of neglect and how that neglect destroyed their bodies and minds.

By September of 2013, doctors had had enough time to run tests on Tommy to better evaluate his medical and long-term prognosis.

Susanna explains "The more we learn about Tommy, the more it looks like his original disability was low muscle tone in conjunction with some chromosomal irregularity or other that would have caused some developmental delays similar to Down syndrome.

Almost all of Tommy’s medical problems can be explained by low muscle tone plus fifteen years of severe neglect and underfeeding. 

Some of his issues can be explained by the neglect alone."

What the doctors found out about Tommy:

• He does not have hypotonic cerebral palsy, autism, or a seizure disorder as was indicated by the orphanage when he was adopted.

• From the unspecified disorder that Tommy was born with, Tommy has a high arched palate which means the roof of his mouth is unusually higher than most people and moderate hearing loss.

• From years of malnutrition, isolation and medical neglect, Tommy developed
• Severe osteoporosis caused by chronic malnutrition.
•  (His score was at the -8.6 deviations on a bell curve.  A -2 score means that the bone density is less than 97% of tested asymptomatic people his age and the cut-off for osteoporosis.  A score of  -3 means his bone density is found naturally in less than .5% of asymptomatic people.  His adopted sister Katie initially tested at a -15 deviations.)
• Atrophic gut caused by chronic malnutrition.
• Tommy's intestines are unable to absorb high-quality nutrients.
• Near the end of the summer, Tommy has a gastric feeding tube placed since it is highly unlikely his digestive system will ever be able to manage traditional feeding methods.
• Mild scoliosis due to years of laying down - which weakened his core muscles - then having him sit up without having strengthened his core muscles.
• Feet malformations due to not being moved enough while in the orphanage.
• His adult teeth are rotted due to lack of nutrition and hygiene.
• Because of the severity, the local dentist expected that Tommy would need at least 2 sessions under general anesthesia with a dental surgeon to clean and determine of course of treatment.  The ongoing problem the family ran in to was that because Tommy had such severe osteoporosis, the oral surgeons were afraid that any work on Tommy's teeth would cause severe jaw fractures.  I don't think the family were ever able to find a dental surgeon who could complete the work.
• Tommy's tongue was thrust out of his mouth because he was fed for years flat on his back with a propped up bottle with a huge hole cut in the nipple.  This meant he simply needed to keep his tongue out of the way and gulp the liquid food.
• Tommy's brain was severely underdeveloped as result of years of low protein, low carbohydrate food and nearly no interaction with others or objects.

• As Susanna explains  "In the photo below, he may appear to be a typical child focusing on the picture on this flash card, but we can’t detect any evidence that he recognizes two-dimensional objects.  I had to tap on the card to get him to look, captured his extremely brief glance at it, and praised him enthusiastically!  “Good job looking, Tommy!” 

Later, Susanna explains "So many times unexpected hot tears have come to my eyes.  Sudden fierce grief and anger has risen within me at the dignity that was stripped from him, the potential that was stolen from his life.  He is clueless as an infant to so much of the world around him.  He is oblivious to his own vulnerability to the scorn of others.

I grieve for him because he cannot do it for himself.

I’ve stuffed it away without examining it, and kept moving.

But I wouldn’t be able to count how many times I’ve gazed into his face and wondered.

Who would Tommy have been, what would he be able to enjoy learning and knowing and seeing and doing if he had not had so much stolen from him?

He has no idea how to play appropriately with toys.  He completely missed that part of his childhood.  Without hand over hand assistance, he either shakes, taps, or drops toys to see whether they make noise. If he likes a toy, he’ll hold it up high, look at it, shake it, and shriek. If he doesn’t like a toy, he’ll drop it.

What he didn’t get is all the more painfully obvious to me as I care for him alongside Benjamin. 

One small and surface-level example–

Ben tries to make eye contact with us when he wants our attention.  He begins to vocalize more and more as he gets sleepy, and if we don’t respond to his more polite requests, he eventually cries.  We meet most of his needs before he even has to ask for them, and we always respond gently and affectionately when he does ask.  Even if we know he’s just being cranky, we tell him reassuringly, “It’s okay, Ben!  You’re okay!”

When Tommy was a tiny baby like Benjamin, he asked, too, just like Ben asks.

But nobody responded.

If he was sad, nobody responded.

If he was cold, nobody responded.

If he was lonely, nobody responded.

If he was hungry, nobody responded.

If he was hurting, nobody responded.

If he had a dirty diaper, nobody responded.

If he was just feeling fussy, nobody responded.

Before too long, baby Tommy stopped asking.  For sixteen years, there was no point in asking for anything.

But even as soon as September, Tommy was showing progress. In Susanna's words:

"Tommy is getting stronger, more energetic, more curious and motivated to move, more engaged in his environment, more vocal, more expressive of his emotions, opinions, and preferences.

He now asks.

He reaches out for affection and interaction.

We’ve learned to scan his surroundings for items he shouldn’t have, like doors that he will grab onto and bang over and over again, bowls full of food that he would grab and fling to the floor, or other people’s earrings!  We put couch pillows around the floor lamp so he can’t pull it over.  We brought our play yard out of storage to make a safe play space for him when and where it’s necessary.

When he’s sitting, he can swivel himself in a circle but not much else.  If he wants to move, he’ll go from sitting to lying down and then scoot along the floor fairly quickly on his back.  Recently, when on his back, he’s much more likely to go over to his side and try hard to pull himself up to a sitting position, especially when attempting to grab something that’s up just out of his reach.

A little over a month before Tommy's death:

It’s a Sunday morning, tranquil and lit with a cool winter sunshine.

Ben is upstairs napping.

I rise wearily from the floor where I had been sitting with Katie, both of us still in our pajamas.

I’ve shed many tears lately.

Tommy is in his feeding chair, receiving a tube feeding.  I stop at his side.

Because he is well hydrated now, drool is often dripping down his chin.

Because of his tongue thrust, a crust of dried drool is often forming on his tongue and upper lip.

Because of the decay present in his mouth, both the drool and the crust are as foul-smelling as his breath.

For the dozenth time that day, I use a damp cloth to wipe the drool from his chin and work at the crust clinging to his skin.

I gaze mutely downward into the chocolate brown eyes of my son and he gazes mutely back up into mine.

Now my tears are streaming.

This task I have performed countless times without thinking is a holy privilege, as though my wounded Savior is allowing me to look into His eyes and wipe the crusted blood and stinking sweat from His face.

I wipe my tears on my shoulder and look downward into the chocolate brown eyes of my son, and he looks back into mine.

A strange joy mingles with the deep grief in my heart.

Welcome, Lord Jesus.

Susanna playing with Tommy, Benjamin and Katie