We’re Not There (Yet) Spiritually

This is a tough admission about 13 years in the making: our family is not where we should be, spiritually speaking — let alone every Sunday. Our background is that of countless families that encompass different religious backgrounds, children with special needs, and generally the stuff of life. I was raised in a secular household, while my husband comes from a line of devout Roman Catholics. Over the years, I felt the call to religious affiliation and joined the Catholic Church 20 years ago this Easter. My husband played his part as expected by family and educators but was looked down upon when he asked questions at his private school. We did what we could to observe our religious obligations for several years and struggled with certain precepts and teachings. It slowly came to a head.

Do you see where this is going? For years, I didn’t. Enter the guilt-ridden frustration. It’s one thing to understand the difficulties of navigating religious life while having a child with special needs. It’s wholly another when expectations versus reality come into play. What I have learned over the years is that parental aspirations and the state of their offspring have equal value. It’s not a “You will do as we do because we said so…” kind of deal.

Beginnings

Let’s start with our first child. We stopped by for services on the eve of Palm Sunday, just before delivering our baby boy the following morning. Imagine saying the Lord’s Prayer and having your first strong contractions just then. A little intense, yeah? We were good to go.

Man, he was portable in those early days! While my husband was at work, I could make special occasions at Mass. It’s nice to know that we even had a direct view of the Archbishop at the altar from the cry room when he visited our parish. But as my son’s health deteriorated, we did what we could for weekly attendance. Overall, we felt we were still in good standing.

My son has multiple diagnoses of food allergies, Eosinophilic Gastroenteritis (EG), severe autism, and mitochondrial disease, so things understandably got a little hairy. We had moved from Wisconsin to Michigan shortly after his EG diagnosis and welcomed our daughter about 10 months later. Establishing a new home and church community was our primary goal.

But once it became obvious that our son couldn’t really hack it even in the cry room and he kept getting sick, our overall weekly Mass attendance fell by the wayside. It was so much easier just not to go.

You know, they say that there’s 168 hours in a week. This is the justification for making attending a service of any faith so easy. But count the hours for getting ready, getting there, the actual service, any time after for socialization (a nope for the most of us), driving home, and then the meltdowns of both children and sometimes one parent. Is the temporal cost worth the spiritual gain? I jokingly wonder if this is the true meaning of the “sacrifice of the Mass.” (I hope I’m not going to hell for that.) Adding to the equation, we decided it was best not to have more children and took permanent measures against the teachings of our faith.

Toddlerhood through the late elementary years was a wan experience with church; we did what we could in terms of Mass attendance, which was sparse. A useful workaround was that we had a living room with the capacity to host a weekly Bible study/Christian church service, complete with themed potlucks. This was close to 10 years ago, so we identified as early hipsters of Christian worship. The point was that it fulfilled our need for fellowship and accommodated the kiddo dynamics of everyone involved. But still, we weren’t in the pews.

Fast-forward about two years later and we had a critical life change on our hands. We had moved to a location about an hour away, so all of us dealt with the transition of a new town, new community, new jobs, and a new school, but finding a new church community was an afterthought. It was a lot to take in, and there were many points along the way where three-quarters of us did it kicking and screaming at one point or another. However, we acclimated to what we now know is an ideal location for our family to thrive.

Once we put down roots, I realized the kids were old enough to enroll in First Communion classes. The impetus was a mix of perceived and promulgated obligation. From the food allergy standpoint (as both kids had various diagnoses of EGIDs at the time), our church surprisingly rose to the challenge. They provided unconsecrated samples for our allergist to perform skin prick and oral challenge testing. As our son had been tube fed for nearly 10 years at this point, we had to teach him how to lightly chew again, but in practice it was letting the tiny fraction of wafer he could tolerate melt in his mouth. He could take a tiny sip of water, so what more was it to get him to wet his lips with wine? It turned out to be a non-issue. Our daughter did fine, or so we thought.

When It All Hit the Fan

Nearing the time of our kids’ First Communion, our daughter presented with behavioral difficulties that we could not explain away. Oh, we tried to, trust me. She thinks on her feet and is someone we all have to be three steps ahead of to have any credibility as parents. Our daughter started to exhibit signs of what we now know was Panic and Generalized Anxiety Disorder, but we didn’t know why.

At the same time, I had recently gone cold turkey from a benzodiazepine and started tapering from an antidepressant a few months prior. Both of us had various levels of psychiatric disturbances that differed in origin. There’s nothing like gaslighting your own kid when you’re going through the same thing. What grown-ups go through is earned; kids have yet to see the big picture. I had to call myself out on discounting her reported symptoms of malaise and anxiousness.

Up until that point, I had known of physical and neurologic illnesses within my family tree, but we were out of our depth with psychological illness. The best guess from my daughter, her therapist, and us is that her teacher had taught about personal experience of the Holocaust, and that she had ultimately internalized it. Her symptoms manifested as overall distrust of medical professionals (think Dr. Mengele), studying a man who died for all of us, and avoiding food, even to the point of retaining her saliva to spit out when it became too much. In the end, she exhibited new phobias every five minutes. We didn’t know what to do.

Very few of us know the anguish of signing their eight year-old into an inpatient psychiatric institution. This was the culmination of the previous two to three months of questioning her presentation. Ultimately, she spent four days there. The professionals couldn’t pinpoint the origin of her distress. There was no known physical assault or injury that precipitated her crisis. I’m thankful she wasn’t medicated at least and I had given them consent to do so via injection, if necessary. She was that unstable. Group therapy, activities, and individual sessions opened the door to her recovery.

When she was released, I was in awe at both the weight that lifted off our shoulders and the spiritual burden eased the closer we got to home. Her most useful treatment, though, was spending 10 days at her religious grandparents’ house. Years later, I wonder if she was under a true spiritual attack, considering the timing of when she fell ill. In a way it felt like the evil one was saying, “No, you can’t have her!” This feels like something that will reveal itself in the years to come upon further reflection. The point now is that she has been well since her release, which was almost four years ago. She’s still full of zing and dreams big, but is a girl who is more surer of herself.

Reflection

Despite my spiritual frustration, I know that God understands our unique situation – I’ll say that this is a universal concept for everyone at any time in history. However, I believe that there is a line drawn between “Yeah, God has this,” and “Dude, you need to do more if you claim to profess this faith.” The comedian George Carlin comes to mind in all of this. His catch phrase in terms of willful sin is that, “You have to wanna…” but I would add the double meaning in that we have to do what is necessary to strive toward a closer relationship with God. However, deterrents lie in the logistics and sensory components of religious services; occasionally they are so strong that it negatively sways those of us who actually want to be there.

The synchronicity of my daughter’s and my own issues has bonded us in the end. She doesn’t shun religious practices; instead, she seeks them while visiting my in-laws. Does she take Communion? Very rarely, as is the case with her brother. After careful consideration, I believe she still has memories of the wheat and wine disagreeing with her as they did at her First Communion, despite no empirical evidence otherwise. What I am happy to report, though, is that she is thriving and more cognizant of her needs.

But do I force my kids to participate? Despite my personal misgivings and natural concern for their souls, no, I don’t. Any positive influence I wanted to have on my kids would have to come from my example of establishing regular attendance at Mass. If you’re of the inclination to do so, please pray for us.

Jennifer Peterson is an at-home parent and owner of Peterson Transcription & Editing Services, LLC. When she isn’t busy wrangling laundry, herding pets, typing, and slaying bad grammar, Jennifer uses her experience as a former paralegal and advocate to ensure the medical and educational needs of her children. Each child is medically complex with diagnoses spanning multiple food allergies, Eosinophilic Disease, Mitochondrial Disease, Generalized Anxiety Disorder, and High-Functioning Autism. Despite everything, Thomas and Natalie are finding their way in this world and running headlong into their teen years. Her family thrives by relying on resources, tricks of the trade, gratitude for lessons learned, and an offbeat sense of humor.