There is freedom.

November 3rd, 2017

To every dear reader who responded to my recent questions by commenting here, and to the many who emailed me privately, thank you.

It is so humbling to know that you took time you really didn’t have and made yourselves vulnerable in order to add to this conversation.  We are honored by the confidences that you shared.  By opening your experiences, struggles, and thoughts to us, you have given us valuable help to sort through and clarify our own thinking.  I’m slowly working my way down through your emails and answering them (with time I also don’t have, so please forgive the delay).

We appreciated the practical suggestions that we figure out the logistics to enable me to listen to the recorded sermons of our pastor.  How had we not thought of that in all these years?

A few of you who responded are attending church regularly.  Interestingly, there is a significant proportion of pastor’s wives in this group.  We heard comments ranging from the mild, “Sunday is not at all a day of rest for me,” to the blunt, “I hate Sundays.”  Some of you stated that if you didn’t get a break from caregiving during the worship service, it wouldn’t be worth the effort to get there.  Some of you simply feel it’s your duty to God and/or to your children.  It’s how you were raised, and you feel it’s important for your children to see you get to church no matter what.  The following quote was typical for the majority of this group of folks.  “I got to church today by working like a crazed woman.  We go and come home and I crash.  The rest of the day is me out of commission.”

Most of the rest of you fell into one of two categories.

Many of you stay home from church when getting there and being there is stressful, exhausting and burdensome (some have been in this place for years) and have come to peaceful terms with that. “I used to feel guilty about it but do not at all anymore. Our life is not our own. God has built our home, and it will stand on Him and for Him. Our life is structured by God and not typical in any way. Absolutely nothing in my life is normal in any way.”

Or you (like me) have been making sporadic attempts anyway and wrestling with emotions such as loneliness/isolation, failure/guilt, and feeling judged by others.  “We haven’t been to church in months, although I am struggling with the right thing to do.”

As we read your stories, we often had to stop and remark, “It should not be like this,” or, “Something is really wrong with this picture.”  When we teased out the gist of what bothered us most, it went back to legalism every time.  Every time. Very telling.

We are concluding that legalism from within and without has been the crushing weight on my spirit at being unable to attend church.  It is the desire of my heart that those of us who are distressed over this issue learn to walk in life and freedom in the Spirit on Sundays, however He leads each of us.

For now, it is needful for me to rest in Him on Sundays as a home-bound caregiver.



Jesus replied, “And you experts in the law [legalists?], woe to you, because you load people down with burdens they can hardly carry, and you yourselves will not lift one finger to help them.

For the letter kills, but the Spirit gives life.  

Now the Lord is the Spirit; and where the Spirit of the Lord is, there is freedom.

In which we again watch God provide.

October 17th, 2017

Hi friends!  Just taking a few minutes while the boys watch Phil Funk of DH Funk and Sons, LLC work on the retaining wall and final grade project behind our house to give you a polite reminder if you haven’t yet responded to the questions in THIS POST.  There are so many of you we’re still waiting to hear from!

The owner of a local hardscape company, Appel Hardscapes, came to give us an estimate on the most basic and modest retaining wall option last summer.  Something about the look of shock that passed over our faces when he named his estimate (or maybe it was his shock when he heard about our family!) must have stayed in his mind after we communicated our regrets and appreciation for his time.  He called later to tell us that if it was okay with us, he would put in a word with a local gentleman he knew who had a large sum of money waiting for the right need to come along.  It ended up being $5000!  And then yesterday he let us know he was donating his time, so we only owe the amount he’ll pay his worker for the day.  It was such a decent thing for a complete stranger to do, and we’re so grateful!

The supplier of the concrete blocks used for our wall, Musser Supply, turned out to be a distant relation!  They also turned out to be very nice to work with, and gave us a 10% discount on the materials.  Now hear this.  The $5000 almost exactly covers both the Musser Supply bill and the payment to the Appel Hardscapes workman!  Thank the Lord who makes the impossible possible!

And a heartfelt THANK YOU to Phil and Kathy Funk!  We are humbled by how you have poured out blessings on our family in many ways from the first day Kathy came bearing a month’s worth of groceries, to the many times you have shared your beautiful cabin in the mountains with us, to Josie’s shower seat, to the handmade bench Phil crafted out of one of our trees, to what turned out to be a sizeable and high quality job on this addition.  We would never be able to repay you for all you have given us!  You have become an integral part of our family’s story, and we thank God for you.



One day in seven

October 15th, 2017

Hi folks!  I’m about to walk out on a limb, if you’d like to come watch!

As I look back over the years, from the recent past to the distant past, I can remember various people who cared for family members with significant disabilities.  All of them struggled to get to church or often couldn’t get there at all.

Somehow, I never imagined that I would be one of them.


When on vacation, all hands are on deck, and it still takes us nearly all morning to get ready to go out the door, and that’s without packing lunch.














Susanna, texting close friend:  Just wanted you to know that I tried valiantly to get to church this week until now.  I was really trying, but by 11:15 am, knowing there’s still at least 45 minutes’ to an hour’s worth of work ahead of me to get out the door, I’m officially giving the effort up as a waste of time.

I have a real choice every week either to rise early and push myself all morning to make the attempt and end up failing most of the time, or simply to take this one possible day of the week to rest and realize that rest is what God designed, created, and commanded me to do one day in seven, and that I ignore that to my peril.

I can manage to get a dozen members of this family to church each week, including making the sacrifices necessary to give Joe time to study and to have the family ready to leave promptly at 9 on Sundays so Joe can teach.

I simply cannot manage to keep up with the massive physical, mental, and emotional demands on me for seven days straight week after week without rest.

How did Sunday get to be the antithesis of rest?  And why do some Christians even feel it’s okay to throw stones at each other about it?  I’ve realized this is the only major source of stress left in my life because of feeling that I’m failing every single week.

And due to…what exactly?…I go on stressing and striving over it.  Why???  What if it’s actually God’s plan for me right now to be resting at home on Sundays until further notice?

Even my terminology to myself feels like resignation and defeat.  “I tried.  I gave up trying.”  I can’t live that way.  I need to know my place and fill it joyfully.

Close friend:  Fits perfectly with the [discussion in] Sunday School.  Ordinary things have much value.  You are deep in the ordinary.






Dr. Miller, Josie’s orthopedic surgeon, was very pleased at her one year post-surgery appointment.



This blog post was inevitable.  It’s been simmering on the back burner for at least four years.  No…seven, or maybe eleven years.  Over twelve years?

Here’s our story.

Twelve and a half years ago, I was pregnant for the seventh time, carrying our sixth living child.  It turned out to be a high-risk pregnancy, and I was put on complete bed rest for almost two months.  I missed church for two months as a direct result of our counter-cultural openness to welcome more than 1.8 children into our family.

Eleven years ago, I was pregnant for the eighth time, carrying our seventh and eighth living children.  It too was a high-risk pregnancy, and my body struggled.  I stopped attending church when the effort interfered with the imperative need to rest.  I was about five months along.  Two months later, I was again put on complete bed rest, and at eight months, our twins were delivered.  I returned to church once the twins’ feeding difficulties were resolved at almost two months old.  I missed church for about five months’ total, again, as a direct result of our openness to more children.  During both of these pregnancies, we were in a small city church Joe was pastoring.

Seven years ago, Verity was born, our first child with extra needs.


Singing her favorite song, “Now unto Jehovah,” on the way to her bus stop~



I don’t remember how much church I missed throughout Verity’s infancy; by then, we were part of a small home fellowship with several other families.  Even once the hospitalizations were past, even when our home fellowship was meeting at our house, it was a struggle to manage to be part of the gathering for even a short time due to the time-consuming nature of Verity’s needs.  Again, I was missing church because we had remained open to more children than most people consider reasonable.  Of course, over time, we regained our footing.  When Verity was just under a year old, we became part of a wonderful, relational community of believers that has been nothing but a blessing to our family.  And then…

~Insert two special needs adoption journeys here, during which we intermittently miss church for reasons of adoption travel and related hospitalizations~

Four years ago this coming winter, Tommy had been in our family for half a year.  Life had been intensifying to an unbelievable level, as Tommy’s needs grew to the point of being all-consuming.  I had been listening to the wrong voices and pushing myself hard to do and to be everything as perfectly as I could.  But one Sunday, the proverbial straw broke the proverbial camel’s back, and I completely stopped attempting to get to church.  There were multiple factors impacting this decision, but never again would I bully myself into meeting others’ expectations.  Over the next nine months, I only went to church a couple of times; one of them was Easter Sunday and the other was too soon after Tommy’s death.  We said “Yes” to God when He asked us to welcome Tommy with all his needs into our family.  As a direct result of this “Yes,” I became unable to attend church.

The fall after Tommy died, I was able to begin attending church again regularly and kept it up over the next year until I was put on bed rest near the end of my pregnancy with Nathaniel.  This was the same day Joe and I moved into the living room so our bedroom could be transformed into a laundry room.   Life became a whirlwind adventure of weeks of bed rest in the living room, stacks of bins stored in every available corner, everyone crowded into a tiny amount of living space in wintertime, Josie coming into our family seven or eight weeks before her accessible bedroom and bathroom were finished, recovery from childbirth (still in the living room while workmen were in and out of our house all day beginning at seven in the morning), and finally moving Joe, Laura, Josie, baby Nathaniel and myself out of the living room and into the addition!  Then, over the next year, adjusting to Josie’s needs, a baby who woke often through the night, and the complete re-organization of our entire household necessitated by the changes in our living and storage space and the two more needy children added to our family.  We now have a household of sixteen.  Again, we allowed God to add precious children to our family, and again, I became unable to attend church.


A day at Longwood Gardens with these six is easy breezy~









In the past two years, I’ve rarely made it to church.  Not because I don’t want to be there, but because it’s beyond my capabilities to get to church and also to get the only rest available to me, the rest I desperately need in order to maintain my physical, emotional and mental health.  I will no longer stubbornly transgress my limits as I have done in the past.


Joseph giving computer programming lessons~




Daniel starting newly 12-year-old John Michael on coin collecting~

IMG_2466 - Copy


Joshua is always so good with his little brothers and sisters.



Some of the factors impacting our Sundays–

My lifestyle requires me to take one day of rest in every seven.  I must rise at five in the morning every school day; I have unceasing mental and physical demands on me all day every day from Monday through Saturday, except for a few hours of date night on Tuesday evenings, a couple of hours off most Thursday evenings, and sometimes several hours on a Sunday afternoon, all of which I buy with greater effort beforehand.  I can handle all these demands with ease if I go into each new week well-rested.  It’s a good life!  Worth every effort as we watch our children being well-loved and making progress!  However, if I disregard my need for rest and attempt a “church” Sunday after the kind of life I must live all week long, it’s burdensome, stressful, and exhausting.  If I get to church on Sunday morning, it means I’ve been deprived of sleep and pushed myself hard to accomplish it, and with very little net result, since I spend most of the time caring for the needs of one or more of the children.

Joe and most of our older children have commitments every Sunday morning; Joe is very involved in the teaching and leadership, and the older ones are responsible to help with the music.  This means their time isn’t as free or flexible to help with the family logistics; for instance, Joe can’t stay and help until we’re all ready to leave, and we can’t take turns going to church as some disability-affected families can.  I am fully in support of the ministry they are doing, and I’m grateful for their opportunities to use their gifts and to interact with our church family.  I am very willing to sacrifice in order to make those things happen.  I’m thankful that they in turn are willing to make other sacrifices for my sake.

Getting this family to any public place all at once, especially first thing in the morning, is a rare, complex, and exhausting feat.  Sunday morning is no exception.  I am an organized and hard-working person, and there are still far more variables than I can wrap my fatigued, middle-aged, end-of-the-week mind around, let alone control.  The process begins on Saturday morning and ends when they’re driving away at 9 am sharp on Sunday, hopefully with everything they need for the day, often including a large quantity of food, appropriate clothes to change into, and other personal items or quiet activities.  Yes, some have been known to show up at church without shoes.  Once they’re all on their way, I’m on my own to address the fallout caused by the previous flurry and to begin Katie’s and my morning routines, sometimes also Nathaniel’s.  Of course, there are the weeks when one or another of the other children is sick and stays home as well.  All it takes is a couple of small snafus to cause time-consuming complications.  This or that was forgotten, oops, better handle this now, or it’s going to cause a problem, oh, did they remember to take such and such…texting Joe with the more urgent messages…

Speaking of a fatigued mind.  It’s obvious to Joe and me that I haven’t come all the way back together since Tommy’s death.  I’m unable to multi-task or focus as I formerly did.  I’m more fragile, forgetful and easily exhausted, less able to push through and think or act in spite of exhaustion.  I wouldn’t be able to do now what I was doing when Tommy was in our family.  I know my limitations, and we’ve had to draw the boundary lines much closer around our life to match my limitations.  It’s working!  We have a mom and family who are happy and healthy!  However, these strict limits affect what I am able to accomplish, including the organizational ability it takes to get our family to church for a Sunday.

Our church is family-integrated, which is ideal for most of our family.  It often stays together all afternoon as well, eating and interacting together.  This is one of the reasons we chose to be part of this fellowship more than six years ago!  It’s not about “playing church,” it’s truly relational.  However, now I joke that if we were sensible, we would pick one of the churches in our area with a disability ministry.  In that case, we could go to church, sit and be fed while others care for our children with extra needs, then go home and relax for the rest of the day.  For me, it would still mean getting up just as early as I must the rest of the week, but I could nap in the afternoon with Joe home.  However, our church is our extended family!  We draw the line at ditching our family for a different one, even if being a member of it isn’t sensible and isn’t working for the mama!

Katie’s pottying needs complicate our Sunday logistics, since our church family spends most Sundays together all day long, and pottying Katie in public settings is incompatible with either rest or fellowship.  She is not a baby; she is a teenager who requires total care and privacy, which means I’m also isolated any time I change her clothes or diaper, bathe her, or potty her. I need to fit her whole pottying routine into either the morning or afternoon.  Accomplishing it in the morning means missing the church meeting.  Accomplishing it in the afternoon means missing fellowship time if that’s happening.  Only Jane and I handle Katie’s personal needs; I try very hard to avoid leaning on Jane for this.

Katie also typically takes about twice as long as others to eat, which means I’m unable to seek out others to talk with during and after the fellowship meal as I formerly did.  After I’m finished feeding Katie, my time can easily be taken up entirely caring for the needs of Josie, Katie, Verity, Nathaniel and supervising the five boys.  This makes me come across as too busy to talk, socially self-absorbed.  Countless people have misunderstand this dynamic, and that grieves me.  Either others stop by our table and patiently put up with constant distraction and interruption and/or follow me around after the meal to talk with me, or I feel lonely as I work with my children and watch from a distance as others interact with one another.  The impact of all this is that although I’m an intensely relational person, Sunday fellowship times nearly always drain me emotionally and leave me wondering why I made the effort.  Serious connection with others has to happen deliberately in other ways at other times, without the children.

When I attempt to get to church, it means rising early, pushing hard and fast to make it in time, and working hard all day long, just like the rest of the week.

Most Sundays, I stay home and rest, which means sleeping a minimum of seven hours the night before, helping the others out the door, then moving through Katie’s and my routines without hurry, chaos or noise.  The silence and solitude is restorative to my soul.

I get to church very occasionally…because it only happens if I exhaust myself, or if by some rare miracle all the innumerable, unruly little ducks fall into a row. I feed myself spiritually in other ways (undoubtedly not enough).  I miss our pastor’s excellent sermons, because we’re a tiny church that doesn’t do live podcasts.  I attempt to be in touch with my church family in other ways (undoubtedly not enough).  They are dear to me, and I miss them.  I try not to mind if others judge me for missing church, and I joke that they are permitted to have an opinion only after they have come and lived my life for a week!  I joke that most people feel busy with a family a quarter of our size. I joke that our family’s ministry is to make others feel that they have it all together in contrast with us.  I joke about being part of the great unwashed, pardon me, I meant unchurched. Humor is one of my survival skills.

We’re slowly grasping what this season of life entails, and it’s different than we had envisioned.  This has been one sacrifice we didn’t foresee and the one I’ve personally struggled with more than any other, except perhaps relinquishing my dream of homeschooling Verity.  God knows, and our trust is in Him.

Now, my friends, I’ve gone first.  There are many of you we know are out there.  We want to hear your stories.