Searching for a faith community that fulfills our family’s needs

The holiday season always seems a little strange to me, as it’s a time for family and looking forward, but also a time to look back. This holiday season, I’m acutely aware of the narrowing of our family’s faith community over the last five years.

Until 2020, having a faith community was always a part of our family’s lives. I grew up going to church. We were in those doors every week on Sunday morning, Sunday night, Wednesday night, and many Friday nights. Saturdays snuck in there, too, if there was a youth rally, vacation Bible school, a Chicken Stew (a distinctly North Carolina thing that I highly recommend), or a baby shower (loved those peanuts and chalky mints). Church was as much my home as my brick-and-mortar house itself. And our family was much larger than the nuclear unit that lived inside those four walls.

The same held true as an adult, and that community was never more valuable to us than during our difficult journey as young parents. The community walked with us through the loss of our first son (who we suspect had epidermolysis bullosa, or EB) in 2008, the birth of our son Jonah (who does have EB) in 2009, and our foster-to-adopt journey with our son Gideon beginning in 2012.

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I don’t know that our sanity or our marriage would have survived becoming special needs parents had it not been for the support of our families — both blood and spiritual. Our church family, specifically, was a lifeline for us, offering love, prayers, meals, the renovation of our basement to make it medical-care friendly, monetary support, a team of folks willing to help me with dressing changes, and so much more. Those people were home to me.

But then COVID-19 hit. Unfortunately, at that church, many people didn’t adhere to the masking requirement, so we had no choice but to stay home. With Jonah’s vulnerability due to EB, our not knowing how he’d react if he got the virus, and no vaccination at the time, our fragile family was forced into isolation. After the COVID-19 pandemic, we visited a few other churches but have yet to find our new faith community.

Being a special needs family is naturally isolating. The manifestation of that isolation has shifted through the years, but there are always aspects of our complicated lives that make the ease and spontaneity of sharing in community difficult.

As an infant, Jonah suffered from horrible acid reflux and vomiting every time we laid him back in his car seat or when he became agitated while in public, due to new situations or even the sight of food. From toddlerhood on, we had to plan pool times around dressing changes. As he’s gotten older, we worry whether he’ll get caught in the rain and soak his bandages. On overnight trips away from home, we sometimes have to stay apart from others to ensure we have the room we need for meal preparation, tube feeding, wound care, and dressing changes.

And at church, we need to be safe — not just from a pandemic, but also from stares and questions from people who don’t know us as we walk through new hallways and meet new people. The new faces, questioning glances, and always having to explain are especially hard for Jonah.

We long for a community where we can be complicated, deliberate, accepted, and supported.

This Sunday, we’ll try again. We’ll walk through the doors, shake the hands, and begin again to build something worth having, something that’s especially critical for a special needs family like ours: an intimate family we can count on for the messy stuff that’s not fun, easy, or pretty.

We’re not meant to do life alone. I know we’ll find our place and our people. These lonely hearts are ready.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.