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.

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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.

 

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

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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~

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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~

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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~

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

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

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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.

 

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A question for our readers

October 14th, 2017

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If you consider yourself a church-going type of person, and you are the primary caregiver for your child(ren), spouse, parent(s), or siblings with extra needs, how often do you yourself, the caregiver, attend church?  If you’d like to add any explanatory life circumstances, such as what type of church you attend (whether it teaches that attending church is a religious duty with penalties for failure to comply, whether it offers support to families affected by disability, etc.), physical limitations you may have, how many children are in your home, how many are dependent, how many have disabilities and to what extent (such as requiring total care), whether or not you receive outside help and how much/often, or any other pertinent details, please feel free.

We’d be very grateful if you would please pass this blog post on to anyone you know who fits the following description:  Primary caregiver for child(ren), spouse, parent(s), or siblings with extra needs.

 

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Joe and I are hoping for two results from this blog post and the post titled “One day in seven.”

One) That we hear back from every reader who has personal experience living the caregiver lifestyle.  If we could, we would commission a detailed survey of every family caregiver.  That’s how much we want to hear from you!

If you prefer to remain anonymous, feel free to use a fictitious name or email susanna@theblessingofverity.com.  We’re all too aware that those who struggle to get to church regularly can fear being shamed if they admit that publicly.  It’s easy to talk about aspects of our lives that make us look good to others; it’s not so easy to talk about the parts that leave us vulnerable to criticism.

Two) Because there can be passionate beliefs attending this topic, we hope that any discussion will be carried out with calm respect, and that ultimately it will result in more light than heat.   Bitterness and hate will not find a resting place here.  You might already know that Joe and I hold some non-traditional views about church.  Joe and I do not subscribe to the beliefs that church is the only place people can meet with God, that we risk hell fire if we don’t attend regularly, or that attending church is a gift we are giving to God (as though He needs anything from us), and while we do believe that the church needs to be challenged where it’s wrong, it is our family; it gives us no joy to hear rancorous invective against our family’s failures.  We believe that the church is made up of people and is not a building.  We believe that we are part of a body of believers and need to meet with them regularly, but that we’re not given detailed instructions in the Bible about how that should look and therefore have some freedom in that regard.  We also believe that we human beings are designed, created and commanded by God to rest one day out of every seven.

PLEASE NOTE:  If you attend some other type of place of worship, we would love to hear from you as well!

 

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Good day, fun day, happy day at school…

September 7th, 2017

Last week, Verity hit a few speed minor bumps at school while learning what was expected of her, but she likes school, is cooperative, and learned the ropes very fast.  This week, no issues at all!

 

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She talks about school in the morning right after waking up, before I mention that it’s a school day.  I sing her the little “Today, I’m going to school,” ditty I sing to Katie every school morning, and she just beams.

She already has her entire school morning routine down pat, including grabbing her backpack off the hook and putting it on before heading out the door.

 

 

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Today, I’m going to school,
Today, I’m going to school!
Good day, fun day, happy day at school!

 

So far, so good!

 

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