by Mel cross posted from her blog When Cows and Kids Collide
Editor’s Note: There have been some who’ve questions why NLQ is posting this series because they think it has nothing to do with what NLQ does. But the Musser story is the very thing that is the heart of this site, Kid-collecting Quiverfull evangelical Christian families that believe they are doing ‘God’s Will’ by having as many children as possible, yet failing to realize that by doing so they are parenting those same children in the most minimal ways possible. Sometimes this type of lifestyle and theology leads directly to tragedies such as the recent death of Tommy Musser. Had his mother been less burdened with caring for the huge number of offspring she had, two others that are also special needs, then perhaps Tommy might still be alive. The story of the Mussers is what Quiverfull is all about in its deepest failings. Tommy’s death is a direct result of this harmful theology.
One of the things we do at No Longer Quivering is track the destruction, devastation and death that result from the Quiverfull and Christian Patriarchal Movement. We plan on continuing that policy.
At the very least I hope his death opens a dialogue about adoption and how the laws and rules of adoptions should not be broken or bent for Christian families. They need to be held to the same standards as everyone else adopting. Tommy’s funeral will be held this Saturday in Lancaster, PA.
(Author’s 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.
- 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.
- Severe osteoporosis caused by chronic malnutrition.
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.
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