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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18 Responses to “One day in seven”

  1. Keely says:

    I have only 3 children and only 2 mild cases of special needs, and going to church is very hard for me. I almost always end up walking one of my upset small kids around the building because I am not willing to let them cry in class or nursery. I am sorry anyone would judge you and your beautiful family for not making it to church. For whatever it is worth to you, I struggle with faith yet always see God’s fingerprints all over your family. If your life among fallen humans in our self-absorbed culture doesn’t demonstrate what His love is all about…I’m not sure who could. May God bless you all!

  2. Nancy says:

    I think probably every mother has experienced just a tiny bit of what you are expressing…being at church, Bible study, or fellowship activities and feeling we spent the entire time with our chikdren for one reason or another. So with all the special circumstances of your life, we can only imagine that feeling multiplied many times over! You are honoring the Lord with your life by giving to, loving, and parenting your very special children! And you are honoring Him by being thoughtful and deliberate in your decisions for the family God has blessed you with. I do pray rest and refreshment for you each Sunday…and any other times you can sneak it in! And I pray for the unique fellowship and teaching you need which your family circumstances require.
    Nancy in Iowa

  3. Sonja says:

    Could one of your children use a recorder or smart phone to tape your pastor’s sermons so that you could listen to them later? Then you could turn, for example, laundry time, into church time with just a tape player or smart phone in your pocket!

    Most importantly, only you know what you are physically capable of doing. If you truly can’t get there, God knows that and He knows your heart.

  4. Sharon says:

    I suspect that others are not judging you as harshly as you think – it’s just a reflection of your own judgment of yourself. They clearly see what you have to deal with so they know you are not staying home for no good reason. Let yourself off the hook, this is just a season that will pass in time. Rest your body on Sundays because you desperately need that rest. Your babies will be grown sooner than you think and things will get easier for you and you can make it again. In the meantime find some other preachers online that feed you, find a great bible study book or program, and figure out sometime at night or maybe when Joe gets home on Sunday afternoon to schedule some time with some ladies from church at a local coffee house or restaurant. Make sure to drop them notes in the mail to tell them how you miss them – they will forgive your absences and make an effort to meet you when you have some help at home to steal away. Mostly be kind to yourself like you would to another overwhelmed mom. We are rarely as loving to ourselves as we are to others and it is such a shame. If you know you have a great life then give yourself permission to settle into the routine that makes it a great life. As a single mom I did not have the energy to go to church when my daughter was young – I needed that time to recover from a busy week and prepare for another one and spend that time with her. Now that season is over and I have a wonderful church that we’re involved in and it works for us. I have just one child (and a full time job and commute) and it was too much – it really doesn’t take a huge household to feel overwhelmed and not have enough time to get it all done. So no judgement – do what you need to do right now guilt free – only you and Joe need to make decisions for your family – no one else is in your shoes. And God always loves you anyway, no matter whose house you are in on Sundays.

  5. Sandi Brannock says:

    Wow, I can relate to this too well :). Thank you for posting. It is so nice to hear that there is someone else out there with similar struggles. Very comforting.

  6. Betsy Siegal says:

    Very thought provoking. I have been recently thinking about this myself. That seventh day, some weeks feels impossible. My example to my children weighs heavy on my mind but if I don’t take a rest at some point I am set back for the upcoming week. Thank you for sharing your heart.

  7. Mark M. says:

    Sundays are tiring for us, no doubt. I spend all of liturgy with my hand holding Stefan’s, and that makes it much harder to help the other kids. Thankfully, Ana just loves every bit of worship, and will sometimes crow for joy during her favorite parts. The agape meal afterwards is always busy, as you also noted, with me locked in place feeding Ana and helping Stefan take reasonable bites and stay in his chair. However, we have been immensely blessed by people who want to help out, even just getting me a cup of coffee or balancing a plate. I try to give Virginia a bit of bandwidth to talk to people, and most folks know where to find me if they want to risk getting messy. I can’t be thankful enough for our church family – our priest has been known to wipe poop off my wife’s feet when our littlest had a big (unnoticed) diaper. We’re all broken people who are learning to be ourselves in Christ, and the Church is the hospital of the soul. The Holy Spirit is indeed everywhere present and filling all things, but we are so thankful to go to church and receive Christ – in the sacraments, in the Scriptures, in the faces of His people. God bless you, Susanna, and I hope you find many ways to taste and see our good Christ around you in this season. Do not forget to pray, knowing that the prayer of the heart needs no words (though sometimes words help), and stillness (inner if outer is not available) is often where God comes to speak.

    I echo Sharon’s plea not to judge yourself (Paul refused to), or any others surrounding the situation; Christ has not forgotten you, remember Him always.

    God grant you His mercies,
    Mark

  8. Fatcat says:

    I agree, you need the rest. It’s a season and you need to do what you need to do. I only have 3 and I missed a lot of church services when they were little. Now that they are grown up, I can do more in the church.

  9. Susanna says:

    It was so kind of all of you who took time to formulate a response either here or via email. They have been very helpful and thought-provoking replies! Your input has truly added to our ongoing discussion. Thank you!

  10. Danielle says:

    Hi Susanna, I stayed home this past Sunday like I do every now and then to simply rest. I don’t have children with special needs, but my own health problems to learn to do life with. I think I am not aware of how much the cancer, surgeries and ongoing medications have affected me. I empathize with your realization that you are forever changed because of the stress and grief God brought near. I feel that way too, and can mourn for the energetic, more capable woman I was. But there is not any going back, and this is what my God has ordained, so I am trying to do as best I can. And that often means saying no to activities, or staying in bed, or home on Sunday morning. I had to let go of the guilt and martyr attitude and realize that God looks and smiles at me. I am His child. I can rest in that. That is enough.

  11. Lydia says:

    Dear Susanna,

    Said very gently and hope you don’t misunderstand. I am however going to be honest and ask some hard questions. Please do know I do not intend any offense or mean to hurt you. If you do not want to read after this, please do not.

    1. I can understand the older children having their own lives and gifts, but perhaps Joe could do less of the teaching and leadership in church and help more at home. I mean it with utmost sincere respect and not sarcasm, but still a question. Your children are your ministry especially those with special needs. It took the two of you to decide to bring these children into this world and adopt more, so why is it only you who are care giving and not Joe too ? I am not saying he is not helping. But I am talking about sharing the burden more and perhaps equally on a Sunday especially with the little boys. He may not be able to help with the girls but what about Ben and Nathan ?

    2. Use technology. Invest in a digital voice recorder. They are less than $50. Someone in the family can take turns recording sermons for you. If they have a smart phone they can record it or do a good hangout or something similar. If all else fails ask Joseph to find a way to record sermons and put them online. Once the process is figured out, it should take any time and be stream lined.

    3. Keep meals simple. Let the boys have an assembly line and make sandwiches for Sunday and finish it on Saturday.

    4. Change churches with a disability ministry if you have to. Your need for church counts too.

    5. I will pray for you for answers. But rest assured this is your ministry as far as I am concerned. God bless you.

  12. Silvia says:

    Hi Susanna, I am not a Christian, but I wanted to share a thought that came to my mind reading your post: you are serving G-d every day, by looking after your children – HIS children, especially those with special needs. And you are making it possible for the rest of your family to attend church. You are serving G-d by serving others and to me it sounds like you are just exactly where HE wants you to be.

  13. Jolene says:

    Ohhh getting over the false guilt of *NOT* being there is difficult. But like you said, its a season…there is not true date given for the end of the season but you’ll know when you’re out of it! No guilt, my friend!

  14. Cassandra says:

    In some ways it’s a complicated question that you’re asking, in other ways it’s simple. For now I will say that the church we attended for more than 20 years is no longer our church. I thought I’d die as a member of this church. But, appalingly and unexpectedly, the leadership made some reckless choices and judgements about our family life (specifically the special needs child) that nearly destroyed and obliterated all we hold dear. It’s about 6 months later now. I’ve never felt so deceived and disposable. But just like He promises, God was with us through it all. We’ve landed in a church that I wish we had been in for 21 years. They don’t just “accept’ my sn’s child, they embrace her as a full and important member of the congregation. Not exactly her, per se., but through the support and programming, they’ve spoken loudly. It’s not a gratuitous acceptance or one that feels like the byproduct of being politically correct. No. It’s a “She has something important to share and we have something to share with her, too” kind of inclusiveness. They see in her, “The least of these…”

    I (we) didn’t attend church weekly for the first time ever, for more than four months. And while it felt like my week lacked defintion and a for-sure celebration, I just couldn’t show up anywhere with the level of disgust I had for our former church leadership. I tossed around how disappointed God must have been in my weakness but I didn’t beat myself up over it because I also knew He knew our woundedness. I determined that I wouldn’t deny myself, wouldn’t deceive myself , by showing up somewhere pretending like I wanted to be there. We were robbed of respect and I wasn’t going to rob myself of living authentically. I’ve forgiven them but they won’t have another chance to disparage us. Not ever. Predictably, they’ve tried to explain and woo us back, however, all their explanations are peppered with, “but…..”

    Note to self: Never a real apology when somebody follows up their apology with a “but….”

    Susanna, I can’t help but to wonder if there is a sub topic to your question. One that you might not even be aware of. I believe there is. Oh, not in a manipulate your readers kind of way, rather, I wonder if you’ve crystrallized the thing you are really wondering about. You’ve peeled back many layers since the death of little Tommy, although I wonder if you haven’t just begun that internal work. It sounds to me like youre in a place where you have the (ego), internal strength to approach that which you have never considered before.

  15. KMT says:

    I belong to the Church of Jesus Christ of Latter-day Saints, commonly known as being a Mormon, a term I’m not fond of since I don’t worship anyone named Mormon, but accept Jesus Christ as my Savior and Redeemer.

    Our services are three hours long: main worship called Sacrament Meeting, Sunday School, and then I Relief Society, a sort of Sunday School class for women only (men are in an all male priesthood class). The children attend Sunday School and then a less formal youth class or, if under 12, Primary.

    My church is broken down into wards. You attend a ward according to where you live. Actually, one can attend any ward, but to hold a calling, or to serve in a designated capacity, you must be a member of that ward. A certain number of wards make up a stake. Sometimes, with special permission, one can attend a ward in a different neighborhood. I have such permission.

    At first, it seemed my family fit in quite well, but over time this proved untrue. First, at the time I moved into my current ward, it started becoming obvious that my children weren’t typical, even for adopted kids. As I struggled and struggled to teach them and deal with a variety of intense behavioral issues, I was judged more and more by those at church. Unkind things were said to me. Susanna, I know you are perceiving you are being judged – you are. I am and so are many, many adoptive parents because we made a choice outside “the norm” and took it a step further outside by adopted kids with special needs and took it even further by adopting more than one child with special, or as I love how you put it, extra needs.

    We aren’t only dealing with how we, the mom, are treated, but how our kids with attachment and behavioral issues are treated. Then, there’s the fall-out with the kids when they go through three hours of not understanding what’s being said. Add to this, the attention they get that sabotages my relationship with them, for example, teachers who over-praise them and gush over them, treat them like cute puppies, ply them with a massive amount of treats and sweets, say they’ll keep a good eye on them, then they don’t and I find my child have eaten a brownie off the bathroom floor or sat in a Sunday School class with have a dozen or more 17 yr. old boys/men and no other females!

    I’ve been told I bit of more than I could chew, that my kids are perfectly normal (not only did they accept they had intellectual disabilities, but they had NO IDEA AT ALL of how dependent one of my kids is on medical equipment due to immense physical disabilities), that if my kids are so difficult that I should put them into public school in a before school program at 6am and an after school program until 6pm so I don’t have to deal with them (my bishop, a public school principal gave me this advice).

    Like you, Susanna, just getting through the weekdays took everything out of me. Saturday was my day to catch up on rest and Sunday was my day to try and get what I could done. Or the reverse, push through Saturday still working and rest on Sunday.

    Like you, the unexpected would happen. Two weeks ago, it was my almost 14 yr. old who decided to go outside and put water into the dogs’ bowls in her Sunday best when she knows good and well the dogs put their feet on her. She was such a mess she had to completely change clothes, making us late, of course. Or, her medical equipment would fail because she ignored the warning signs that it needed to be taken care of the day before.

    Or, someone would have a meltdown or behavioral issue, or, my oldest would be caught stealing – again and again and again…..

    The list goes on and on but the result is the same – Sundays were not a day of rest but of great stress before, during and after services. It was a change in daily routine that upset meal times, care times and brought up subjects my girls could not understand.

    I haven’t put it on my blog yet, but my oldest doesn’t live with us any more. She was the biggest reason we didn’t attend and since she’s been gone, we’ve been attending church again and it’s much easier, but still hard. Honestly, I push myself to do it for my youngest, who needs to be with her neuro-typical peers. My 13 yr. old loves the gospel and learning about Jesus and God and the Bible, but it’s hard for her to learn when it’s not presented at her level and taking into account the things that make it hard for her to understand what’s being said around her and, especially, the noise of so many people talking at once. My 16 yr. old just LOVES all the attention and monopolizes everything and anything she can and everyone just LOVES her enthusiasm and no one tries helping her learn what is more appropriate behavior and often sabotages my attempts by saying in front of her, “Oh, it’s okay, ” after I’ve said it’s not.

    I believe in the gospel and the beliefs of my religion and I miss my old ward in my old city where I used to live every moment of every day and even more on Sundays.

    I have not been able to make any friends. Being single doesn’t help. Having kids who don’t do sports doesn’t help (in this town it’s all about sports), having kids with extra needs doesn’t help. Being new in town doesn’t help. I’ve put myself out there. I’ve extended invitations. Some people have offered to help, but it’s the wrong kind of help, the kind that sabotages my relationship with my kids or makes things harder – they want to bake cookies with my kids, take them out for treats, etc… The help we need isn’t to take my kids out for fun things, but to free me up so I can take them out for fun things. Bring us a meal, help with yard work, help open the mail, help teach a homeschool lesson, tell me you’ll pray for me this week, come over and have lunch with us, invite us to dinner at your house, meet us at a park, come swim with us in our pool (not your pool because my child might need some equipment adjusted and that needs to happen in our home). Definitely don’t ask why my kid has to stop swimming when I tell her, especially because she knows it and doesn’t mind – I’m not a bad or mean mom – but they think I am. They think I’m over-protective about germs – well yes, it’s a worry because I’m a single mom with kids with extra needs and if you think it’s hard when your kid gets sick, try being a mom to one of mine when they are sick and when two get it, it’s even harder because if my kids get sick, it takes a LOT out of them and they take longer to recover and we miss appointments and have to make them up and we might need extra appointments and risky medicines like antibiotics. Oh yes, taking antibiotics is very risky for one of my kids because she’s colonized with multiply resistant organisms, but I’m not going to run through her medical history with these people because it’s none of their darn business – they should just accept that I’m the mom and I know them best and know what’s best for them.

    Whew! I can’t go on any further, but I think, at least I hope, the picture is clear.

    None of these things would have happened to this extent in my old city’s ward because those people knew me before I adopted my kids. They know how capable I am, my strengths and weaknesses. They respect me. Being in a large city also means exposure to a wider variety of people and their cultures, beliefs, etc… which I think means they are more tolerant and respectful (or at the very least, know it’s not their business to comment on them) of differences and more inclusive in a real way and less intrusive.

    Well, I’ve lost track of all I’ve typed and I’m too tired to go back and proof-read. Bottom line: It’s hard getting needful kids to church, whether it’s because they are very young, have extra needs, or something else such as working night-shift, care taking, being ill, etc…. When we are tired and stressed out, it’s hard to feel the Holy Spirit.

    God knows our burdens. He knows our hearts. He knows what we took on when we became parents to our children. He has given direction as to how we should treat one another. I know He isn’t holding it over me that I missed a year of church, but He might have something to say to those who judged me harshly in my hours of dire need when a kind word would have been all I needed to get through another week, day, hour, minute or second without despair.

  16. Rachel says:

    Warning: I typed this post with the glass half empty!

    I have gone through many seasons with church over the years. I have experienced direct rejection from church leaders and church friends over the years. So I have avoided church off and on over the years, simply because of the way it brings up hurtful memories and worried expectations. But my husband reminds me that we are to “fellowship with other believers” so I keep trying. It must have value and I have stubbornly tried to not give up on church.
    Listening to a sermon and even participating in communion seems “cold” to me and I long for intimate conversation and personal prayer time. I am so “cold” in the spirit and have been for a good season now (over a year?) and I have a hard time not resenting “giving” myself to church time and structure rather than finding and drawing close with sisters and brothers in the faith for genuine knowing conversations and encouragement. I am very concerned about hurting the leadership in our hopefully forever home church… they work very hard and are genuine in their care for us. I don’t want to tell them they aren’t needed or important.
    Going to church has provided the foundation for relationships… meeting people, seeing their faces regularly, learning names, and learning facebook accounts so that I can find out what’s happening in real life with people. I struggle with being isolated as a homeschool parent with young children. Going to church has helped my children make friends.
    We just completed another adoption and I think having him here will grant me the respite from attending. ALthough people will want to meet and see him. I don’t know. When I think about church, I become discouraged, because we each, as individual families, are so isolated. A few people connect and try to support each other. There’s so little supporting of each other since we’re all busy.
    The people who have been holding us up with meals and prayer since this adoption completed: Physically distant facebook friends, non-Christian friends in real life, a few dear, dear, dear friends and sisters in Christ, and a few people from church whom I’d like to know better.

  17. Sarah says:

    I’m not sure whether this applies in your church, but in the Catholic church it is absolutely understood that there are times when people cannot make it to church, and there are Ministers of the Eucharist whose job it is to take communion and other ministry to them. My parents were both weekly churchgoers so it was very hard for them when my father had dementia and my mother was his caregiver in the last few years of his life, when neither of them could go to church. But every week, the minister (it can be the priest, but it is often a nun or a lay minister) came with communion and a reading and stopped and prayed with them and brought the newsletter and shared news so that they were still part of the church. Perhaps your church could think about instituting such a ministry for you?

  18. Kate says:

    I’m really struck in reading your blog post, Susanna, and the resulting comments from other parents, that so many of the churches described seem to be doing very little to meet YOU where you are. However dear the people in your church family, I would not want to invest my time and treasure in a church community that does not provide both moral and practical support for its members who are struggling, much less one that judges an overwhelmed parent for not attending church, or for having children who have extra needs who might not be able to handle a typical worship service/more than an hour or two of church. Do the church members ever support you with meals during the week, try and get together with you for a quick Bible study or prayer on other days, or offer to watch your little guys/less needy girls on Sundays so you are less occupied with kids during fellowship time? Would they consider having a shorter/compressed day once or twice a month? Or as Sarah said, can they bring Communion and fellowship to you at home through a eucharistic visitor ministry?

    I’m a Christian and I value fellowship and worshiping as part of a community. However, if a church and its members and leaders cannot 1. be open to “the least of these” and actively work to embrace and support such persons and their families (who truly embody Christ’s love), and 2. understand that ALL of us go through periods of life in which we are overwhelmed and need prayers and understanding (and maybe practical support) instead of judgment, then how is that a family? or a supportive body of Christ?

    I am fortunate to be part of a large church in which we have several families whose children have extra needs and are welcomed. We do not yet have a disability-specific ministry, but the regular ministries have worked hard to adapt and involve those with disabilities. We have young men and women with “extra gifts” who participate in worship as singers, altar servers, and ushers. Children with extra needs attend Sunday school and confirmation programs with their peers – if they cannot handle the regular program, the parents and the youth education director work out an alternative.

    If it is at all possible, could you consider giving yourself the gift of an extra body to help you? One large family whose 3rd child has multiple needs (Down syndrome/autism/some physical disabilities) often had a nonfamily caregiver (who also worked with the child as an afterschool therapist a few times during the week) accompany them to church. When the caregiver came with them, the parents and other siblings could all participate fully in worship and education with their own peer groups, and the child had someone she knew and trusted who was dedicated to assisting her to attend both group worship and Sunday school. This child needed a shadow at all times, as she was nonverbal, needed help in the bathroom, and was sometimes unable to navigate all the activities…although now that she is a teen, she is more independent and is an altar server along with her siblings! The family was not comfortable asking loving/willing but unfamiliar (to the child) Sunday school teachers or other parents to help with her unique needs, but a trusted and trained extra pair of hands was able to make Sunday mornings not only doable but a restful, joyous, and meaningful time for the entire family.

    Would it be possible to find such a trusted person who could help you with one or more of the children on a hired or volunteer basis? The person could stay home with Katie for a few hours to let you get at least a morning of worship, or accompany all of you to give you more freedom and energy to participate, or assist you at other times during the week. Do you qualify for or have respite caregivers? I know it is incredibly difficult to find loving, reliable caregivers that you can trust to assist a family member who needs partial or total care (just went through this twice myself), and that effort may be beyond your abilities in terms of searching for such a person or paying them. However, it’s like they say on the airplane – you need to put on your own oxygen mask before assisting others. You have extraordinary challenges and it is OK if you can’t do it all and need to lean on others at times. Your willingness and choices to open your life to many children and many needs does not mean that you now cannot say “hey, we need a little help here.” All parents (of typical or nontypical kids) and all caregivers need support and occasional breaks, and they have to allow themselves to step back and trust someone else at times, rather than break down and burn out trying to do and be so much for others. If your occasional rest/respite is Sunday at home with only a few children, then you take that and relish every minute of it without guilt or pressure to do more. Anyone who doesn’t understand why needs to look at that big unhelpful splinter in their own eye.

    Thank you so very much for your honesty – I hope it will help anyone who knows families facing some challenges to think about what WE can do for THEM as fellow church members, or at the very least to understand why they aren’t there like clockwork every Sunday. Praying you can find peace and rest, wherever and however you choose to spend your Sundays.

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