I find my writing muscles have sadly atrophied this summer. Every time I went to write something down, my little finger commenced to aching, an excuse that even Mr. Putter and Tabby did not come up with when they tried to write a book. I suppose that would be as good a place to start as any with this update.
Way back in August, three days after my doctor cleared me to do whatever I want now that I had healed up from surgery in the spring, we went camping with my sister’s family. It was good times all around, except for maybe the hour of drenching rain one evening. Rachel has six children, five of whom are younger than my youngest child, so we are still in very different stages of mothering. She had been dispensing snacks and taking small people to the potty and supervising play most of the day. After supper we decided to go on a wild spree on the e-scooters. We felt like shopping, and the only option was the ever-present Dollar General right outside the park entrance.
Off we scooted, about 15 miles an hour, one foot balanced behind the other. I was on the edge of the road and she was riding behind me when suddenly she put on a burst of speed and cheered as she glided past me, “I’m going to buy CHOCOLATE!” That declaration of freedom was all it took to set me off, and I started laughing enough that I ran my scooter off the edge of the road.
Now e-scooters are not designed for hasty changes in terrain, and it stopped very abruptly while I kept on running at 15 miles an hour. I took gigantic steps, pell-mell, and just as I thought I had gotten it under control, I tripped on my flip-flop. My pinky did its best to stop my fall, but it proved inadequate to the task, and crumpled.
The first thing I did was look around to see if anyone had noticed my epic fall. Nobody in sight, and Rachel was ahead of me, so she only saw the part where I was sitting on the asphalt, feeling foolish. The next thing I did was examine a rather pathetic little finger, obviously dislocated. There were no other injuries of note, except my shattered dignity, but I soon recovered that.
We scrubbed the mission for chocolate and other DG delicacies and returned back to the campsite. Gabe got my finger back into the proper position and whittled me a splint. I took a bunch of pain killers and the camping went on.
When we got home, I had the finger x-rayed, and it was indeed broken. The doctor said Gabe did a good job of setting it, and it should heal fine on its own, unless I was concerned about how it looks. “I don’t care about that,” I said, “but I really would like it to work. I have to be able to type and to make pottery with it.” I was given an enormous splint that came almost to my elbow.
A pinky is pretty minor in the world of broken bones, but turns out you use it a lot. I couldn’t believe how often I accidentally bumped it, trying to do ordinary things. One day Addy poured a few M n M’s into my palm, and I dumped them all out because there was no little finger obligingly curling around to catch them. I couldn’t peel potatoes, hold a pen, pull weeds, pick beans, throw pots, etc.
It is now healed, but needs therapy. I can type, stiffly, and I think just using it normally should soon extend my range of motion. I am now good to go, again.
Would you like to hear what I did to my knee when we were camping last weekend? No? Yeah, I don’t feel like talking about that either.
I did have a few complaints for the Lord as I was hobbling around, putting away camping gear. “Do you really want me to just not do anything this whole entire year?” He didn’t answer, so I just kept hobbling. Eventually it will loosen up. It always does.
It’s the time of year when I feel like things are piling up that need to be done, urgently, before winter. It helps me to get dominion of just one thing at a time. Because the girls are pretty much self-directed in their schooling these days, I can putter at projects one at a time. Eventually the household ship that is listing heavily to port starts to right itself.
Right now my mind is constantly with my brothers Nate and Kenny and Gabe’s brother Wayne who all live in the mountains of western North Carolina and are wearing themselves out, day after day, helping their neighbors in any way they can. Thankfully all of them live on high ground and did not have flooding in their homes, but they are living with the reality of no electricity and loss of infrastructure. They are besieged everyday with the griefs of a community staggering under a weight of unimaginable suffering. They are living on little sleep, going on fumes and the grace of God. We hear only snippets of their lives when they manage to get to Starlink internet access.
Aside from supporting organizations that are bringing aid, I don’t know what to do to help. I feel guilty while I steam grapes and can juice and clean up the basement storage room. When I turn on the heat, there is a twinge of guilt too. I don’t know what to do to help.
There are a lot of situations in life where the only thing to do is the next thing. If I sit inactive in my overwhelm at the sorrows of life, something is missing from the world that is supposed to be there. What is right in front of me, that is my work today.
This morning I took dominion of the freezer drawer. It is supposed to be the freezer for bits of things that need to be handy in the kitchen. Why it gets into such a state, I do not know, but I am suspicious it might be the children. I took out 13 partial bags and containers of frozen fruit from the summer smoothie making. There were a lot of bags of half loaves of bread too, and an ice cream bucket with about 3 cups in it. There were containers with a few slices of ham or some sliced bell peppers that I never remember to use when we make pizza. (Not all the children’s fault after all.) I have a bowl of frost-bitten treats for the chickens, which will turn into eggs in the long run, so that is ok, I suppose.
Yesterday Rita and I went out into the glorious sunshine that feels like a novelty after two weeks of drear. We trimmed the overgrown raspberries and cleaned dead plants out of the garden. She cleared her patch and hauled the stuff to the compost pile. I caught her looking at me a little oddly, and then she declared, “I am so glad you aren’t anemic anymore!”
Me too, dearie, me too!
It has been a summer, that’s for sure. There has been so much goodness and hardness mixed. My dad is fighting liver cancer with all his might, and we do not know yet whether the treatments are working. My mom is pouring her heart into caring for him. Our hearts are being enlarged even while we recoil from hard things. God alone knows what will be next, but He is there. Amen.
(My finger has tolerated this typing quite well, although p is hard to reach. My writing muscle feels stretched and happy. Thanks for listening. )
I will conclude with a little extra warmth on a chilly morning, thanks to my one child who does not need to be bribed to let me post photos.
September was so packed full, I decided to do a list to try to condense it a bit. The traveling actually started on the last day of August. Hope you enjoy.
· made many lists of things we need to be comfortable when camping with no amenities
· packed up a prodigious load of gear in a little trailer we borrowed
· prayed our Suburban with very high miles would get us where we were going safely
· journeyed six hours toward the Midwest
· stayed with lovely friends for a night in Indiana
· snuggled the babies and played the games we used to play when they were our neighbors
· hugged everybody and said good-bye after breakfast
· drove another six hours westward
· wandered through Amana Colonies, Iowa, for the Handworks Festival
· bought tools from vendors and beautiful woven things at the woolen mill
· ate German food that blessed our little German hearts, every dish cooked to perfection and extra delicious because of our great hunger
· camped close to a river under tall, tall trees with no rain flies on the tents because it was so dry and breezy and the stars were so bright
· drove another seven hours
· reconnected with dear ones in South Dakota
· sat in their living room to catch up with our lives until we were literally too fatigued to talk
· reacquainted ourselves with nieces and nephews who seem familiar, almost like our own children
· drank so much coffee, even the little guys
· shared meals that my sister-in-law produced out of her amazing spiritual gift for welcoming people into their home and feeding them
· picnicked beside/swam in the mighty Missouri River on a very hot and windy day
· walked the dusty road at sunset
· savored late summer produce from their garden and took a lot of tomatoes with us in our ice chest
· drove an hour to a Walmart for groceries, a novel experience compared to our usual two-minute drive
· bade everyone fond farewell after three days
· travelled further west
· wished fervently that it weren’t so hazy with wildfire smoke
· enjoyed the Badlands anyway, in the moderated weather that was a result of the haze
· set up tents on the very rim on the western edge of the Badlands to we could hear the coyotes in the valley and watch the sunrise
· marveled at the resilience of the sodbusters who settled that country by sheer grit
· meandered even further west into the Black Hills
· rented a UTV with six seats to explore trails
· boondocked on range land beside a rushing creek rather far from civilization
· cooked our meals with propane because fires were verboten in that dry land
· washed ourselves with creek water
· ate brook trout Rita caught with grasshoppers in streams so narrow you could step across them
· blessed the Lord for clear skies again
· drove hours on the UTV through clear, fresh air to see Mt. Rushmore
· toured Custer State Park
· kept out a sharp lookout for exotic wildlife
· saw mostly range cattle, with a few pronghorns and a herd of bison far in the distance
· packed up camp a day earlier than planned, just before a downpour of Biblical standards
· retreated to a city with a motel for showers and white sheets and food that didn’t come out of the ice chest
· started the trek eastward
· drove across country on small roads instead of interstate
· wondered at a land and culture so different from our eastern one
· relieved our bursting bladders between two rows of grain bins in that land of no service stations or bushes to provide cover for what seemed like hundreds of miles
· ran out of the gas at the very edge of a town and managed to coast right up beside a gas station
· fulfilled a long dream of mine to tour the Ingalls Homestead in De Smet
· imagined I was Laura, or maybe Ma Ingalls with her very brave spirit
· ate our last food out of the ice chest with little enthusiasm
· drove the rest of the way home through the night, seventeen hours
· stopped only for fuel and potty breaks and odd selections of snacks at gas stations
· found ourselves at home, sweet home, by morning
· checked on the chickens and the rabbits and the garden
· picked up the mail and the dog
· mowed the yard
· washed clothes for days
· unpacked and sorted gear, also for days
· slept and slept and slept in our own beds
And that was the first two weeks, which were rich and full and exciting. I have a list of verbs for the last two weeks in September too, mostly about trying to catch up with normal life, coming soon.
The Mighty Missouri River at Sunset
Cousins Playing “Winter Shelter”
Hazy Sunrise over the Badlands
UTV Tou
From the Tent Door
Camp in the Boondocks with Greg’s Tent on the Cliff
Hello, friends! I don’t know if anybody remembers when I used to do a post every day in February, the short month? I don’t know how I did it.
We have reached the point of winter where it has settled into our souls, and even though we know in our heads that it will not last always, in our souls it feels like we might as well make plans to continue indefinitely in this season. I saw that Walmart is putting all the snow clothes on clearance. I bought two coats for the older girls. It seemed a reasonable way to spend seven bucks.
Gabe got a mighty itch to buy a snowmobile since we got such a handsome amount of snow. First there were fourteen inches and then a few days later there were ten more inches on top of that. Very little of it melted, so it is quite brilliant outside. He actually did get his hands on an aging snowmobile, apparently one built to go get the groceries in the Arctic, with heated handlebars and all. It is enormous and may reach speeds of 65 mph, requiring a field to make a turn successfully. Yeah, it was quite the thrill, until it died without explanation as he finished the last ride on Sunday night. Now we get to figure out what makes it tick, and maybe the snow will last for a few more months so that we can use it lots more. I believe this could happen. I do heartily endorse finding ways to enjoy it. I break trail down to the creek and walk the trail a few times every day if I can. I remember a Lewis quote: “What must be the quality of that Being whose far-off and momentary sparkles are like this!” (edit: I just looked it up. Lewis said “coruscations” instead of “sparkles”. I think in this case, Lewis overdid it.)
Yesterday I was just walking along, minding my own business, when I felt my bum knee go out. It feels as if the kneecap is sliding down beside my knee, only an MRI a few years ago showed that it is only a small piece of cartilage that is floating loose and occasionally giving me grief. As a result, I cannot bend my knee, which is a little unhandy. Eventually it will float somewhere less offensive, and I will only have soreness to remind me it is there. They said it looks like a sports injury, and the only thing I could think of was that time in fourth grade when I wiped out during single base at school. I could schedule a surgery with ortho, sit in the waiting room with all the silver haired folks who need hip replacements and the kids with sports injuries. Meh. I think it will have to get worse before I do that. This bum knee is the reason I do not have the fun in the snow that I used to. Skating, sledding, skiing, even snowshoeing, are all out because of it. It seems the Lord’s will that I winter somewhere tropical, wouldn’t you say?
Meanwhile I shall hobble about in the house, pottering with houseplants, cooking soup, and looking out at the birds at the feeder, watching the lazy flakes swirl down. Yes, that is what they are doing.
I find myself trying to explain to one of my children what I want them to bring up from the basement, feebly waving my hands around my head as I grasp for what you call it. “Words, Mom,” they prompt helpfully. “Use your words.”
I was trying to make up a meal schedule last evening, and found myself writing “soup” repeatedly. It’s appropriate, and that’s what we’re doing. Hearty hamburger soup. Toscana with kale. Chicken broth with vegetables. Ramen. I bet you didn’t see that coming, but hey, my children like Ramen. Who am I to quibble? (I am feeling satisfied that I thought of that word “quibble” without too much feeble hand waving around my head.)
We had a sunny day last week that melted the stuff on the roof, so that we had enormous icicles growing outside the windows. Rita called the most impressive one Big Jimmy and everybody got invested in watching how much he would grow. Two of the girls even dreamed that various neighbors came and broke off Big Jimmy before he reached full potential. Methinks we need broader horizons.
In an effort not to get too mush-brained, I paid for a writing course from Jonathan Rogers, called The Habit. (Author of The Wilderking Trilogy, highly recommended for kids and adults both. We got the audiobooks, and they are top-notch.) The idea is that you must make an every day habit of writing if you’re serious. I have been trying, I really have. One thing I have established: my fiction attempts are total rubbish. But I keep making a stab at the assignments, trying to string words together in fresh ways. The problem is that it has all been said before. Occasionally I get frozen with fear that I am subconsciously quoting another author whose work I admire, thinking I am making this up all by myself. What a fraud! Rogers uses samples from authors like Tolkien, Lewis, L.M. Montgomery, and Harper Lee to explain excellent writing. One is reminded constantly that one is very. small. potatoes. Especially in February.
I also signed up for a lot of studying in Sunday school this winter. We are doing a course called Search the Word from The Daily Grace Co. I like the discipline, but admit, I have to crack the whip over my mind repeatedly. There are ladies in the group who put me to shame with their level of study. In this season I have no excuse not to search the Word, but I do have endless interruptions, so I am taking it as the enrichment I need without dipping into any guilt when my summary misses a few points.
Gregory has volunteered to make omelettes for lunch. Rita is singing, “I’m leaving on a jet plane,” at her desk, and Addy is studying adjectives with much drama about boring school. How are you fine folks holding up?
So I have a google phone, and every day it suggests news articles for me, most of which I loftily ignore. I am endlessly amused though (not by google’s spying) by my own interests coming back to bite me with more ideas to pursue on topics of interest. I have repeatedly clicked, “not interested” on sports, celebrities, and c***d discussions for my own mental health. For some reason I get suggested articles on “Eleven Habits of Emotionally Healthy People”. I also get “Twenty People Who Didn’t See What Was Coming” or “Twelve Cake Decorating Ideas to Avoid” video compilations. I laugh uproariously and feel better for the therapy.
This past week there have been organization articles, ways to streamline your household and make your kitchen feel happier, less cluttered, etc. These are fascinating to me. Like this tip: turn your kettle lids upside down when the pot is in the cupboard so that you can stack the next kettle on top of it. Do tell! I think I learned that in my mother’s womb. Or the one where you lay a piece of pegboard in the bottom of a drawer, then stick short dowels into the holes so that you can put cookie cutters or apple slicers into the drawer and they won’t slide around. It’s kind of a neat idea, if you have a cookie cutter drawer. Mine go into a metal cookie tin in the pantry to wait for next Christmas.
I read the gardening articles. “Three Easy Ways to Keep Your Houseplants Happy,” or “How to Propagate Succulents”. Last week I found a fascinating article about soil, written by an Amish-man who lives not very far from here. I kept exclaiming to my children about how articulate his ideas are, how much sense they make, and how can he possibly be Amish? He has a blog and a podcast! They couldn’t quite get past the part where I was reading about soil. Again. They actually laughed at their funny mother. O vell.
I do click on “Underrated Destinations that Delight Visitors” and do armchair traveling. The problem with telling the Web about an amazingly undeveloped destination on the beach is that 100 million people might see it, and then if only a fraction of the people go there, it will no longer be undeveloped or amazing. Why do they do that, I wonder? I also check ticket prices to hot and sunny places. It’s a sort of joke with my January self. If things get too frozen, I can go to Phoenix for $112, like a tapping out button that I will never use. Then I saw that some friends of mine are actually in Phoenix right now, in a sun-drenched desert landscape full of blooming cacti and, did I mention, sunshine? So it can happen.
Then there are the recipes. We are past the week of “confused and full of cheese” and officially into the season of craving citrus and broth based soups. That doesn’t stop me from wanting to try all the sourdough coffee cakes that google suggests would bless me this month.
I should probably go now, check if I have the ingredients in my spice cupboard for that “How to Make Sure Your House Smells Great” potpourri.
For starters, I am so tired of this coronavirus, I want to hurl it into the Pit. I have had a deep respect for it all along, because I heard what my husband kept saying and I believed him over the scoffers on the inter-webs. But it was an abstract, “I’m so sorry people are suffering” kind of distant respect. Now it has become perilously personal. I debated whether to even write anything, because what we are experiencing is what hundreds of thousands of families everywhere have already experienced this year. For some reason, I have this self-published platform and the inexplicable honor that people keep reading what I write. If our story can convince some naysayers to be more cautious about the virus, I will speak up.
For my mom, quarantine is much worse than the virus. She had a low-grade fever for about 3 days, some coughing, and fatigue. She stayed home, stayed hydrated, stayed active, recovered. My dad isn’t aware of quarantine anymore because he is sedated, on a ventilator, fighting the worst virus of his life. In classic Covid19 style, we live a roller coaster of ups and downs every day when we get updates after rounds at the hospital. Not only that, we are limited to supporting Mom from a distance, across the porch, laying her supplies on the picnic table for her to pick up, comforting her the best we can. It really, really stinks.
It’s been 2 weeks for Dad, and there has been very little improvement. We wait and hope and send out prayer requests. The first four days in the ICU he was communicating with us, telling jokes, responding well to his treatment. He kept saying, “I think I’m over the hump.” Then one evening we got one cryptic text, “I’m going to be intubated tonight. Maybe then I can rest.” What? This was not supposed to happen! Many people have asked, “Was that really necessary? What would have happened if they wouldn’t have intubated him?” The short answer is that he would have died a slow and painful death with acute respiratory distress or organ failure due to lack of oxygen.
This is four days later, and we have been jerked back and forth every day. “He’s doing well,” they say. “He is responding so well to the Remdesivir that we won’t be using the donor plasma at this point. However his blood pressure is high.” And then, “We’ve weaned his vent settings to 50%. His blood pressure has stabilized.” Then twelve hours later we get this message, “He did not do well in the night. His kidney function is deteriorating somewhat and the renal doctor is monitoring it closely. We will be giving him a paralytic and proning (turning him onto his stomach to help his lungs expand) him today.” Last night was more positive, “He handled the proning very well and the vent is now only at 40%.” In a few hours we will hear how the night went. My mom will be sitting with her phone in her hand, her heart in her throat, praying for good news.
My parents were careful; they wore masks in stores; they used sanitizer. They also travelled to another state to take my grandma home after she attended a large wedding on the family home-place. Mom and Dad didn’t go to the wedding. They didn’t hug or shake hands. Nobody was sick on the day they got to my aunt’s house. The only thing we have to be mad about is that they travelled across state lines, and that is pointless. It is what it is now, and we are here, waiting to see what God will do with this situation.
Mom’s quarantine is almost done. She is learning healthy ways to cope with this long drawn-out affair. The first week, when she was sick and worrying about Dad, watching him get worse, trying every immune booster and natural antibiotic known to the home-remedies community (plus a few), keeping him hydrated, checking his blood sugar levels, panicking when he got severe chills that shook his chair despite layers of blankets… that was a week of desperation. His doctor was on vacation that week, and the locum gave them the standard advice to treat at home and go to the ER if he got worse. So that is what they did, and here we are.
Dad is in the ICU where Gabe works. As it happens, he was admitted the day our “vacation” started. Gabe has off for 10 days and will not be going back to work until this weekend, unless he picks up some overtime. It is very helpful, though, to have connections and get the inside scoop on his condition. Gabe will rattle off a list of stats and I look at him blankly, “What does that even mean?” I don’t know what we would do without his translation.
Our hope is in God, and in His ability to give the health professionals wisdom. We wait for Him in a dependance that we haven’t experienced on this level, ever. This is not a bad thing. He is holding the whole situation, and we know it. In that there is peace.
In general we have experienced so much kindness and care. Many people have reached out and asked how to support Mom. Here are a few things:
Messages of faith and courage, with no expectation that the person has to reply back.
Links to songs that lift the spirit.
Local support, in the form of a face on the porch, a bit of fresh fruit, etc.
Phone calls only if you are a close acquaintance.
Compassion, not pity…and there is a difference. “We are walking with you,” is much more bracing than “You poor dear! How are you surviving this horrible ordeal?”
Pray. Pray. Pray.
This is the reality of coronavirus for some. If you think it’s about funny memes on Facebook, how somebody sneezed and now they tested positive and the whole world has to wear a mask, I’m here to tell you that you should stop. I pray it never touches you, or that you are one of the many who sail through recovery with little scarring. If you think hand sanitizer is for wimps and the CDC doesn’t know nearly as much as you do about staying well, all right. That’s up to you, but please don’t scorn those who do not see things quite the same way.
As promised, this is part 2 of Naomi Hostetler’s articles on special needs. She gave me permission to edit, so I shortened some paragraphs and added a few from friends who chimed in on the conversation. I hope this informs and blesses. I know I have read articles like: “10 Things Well-Meaning People say to Grieving Parents” and felt stricken that I had said hurtful things without meaning to. Neither Naomi nor I want you to feel that way. This article is compiled from the insights of 8 different women who care for special needs children. Personalities vary, and people have different struggles. I think if you read through, you will see a common thread. Be there. Listen. Help in any way you can.
****************************************************************************** Caring for the SN Mama
Some mamas send their children off to school by giving them a hug and sending them down the lane. Others put them on the bus with medical equipment and medications. Some mamas take care of baby’s needs by doing a quick diaper change and giving him a bottle which he falls asleep holding. Some mamas do a bowel routine and feed through a feeding tube. Some watch their ten- month old pull himself up and take triumphant first steps. Some mamas watch their five and ten-year-old fight determinedly for that first step. Some let their five-year-old child run into the store beside them and some carry their child. Some say their children are “into everything” and some wish their children could be.
A common thread among SN Mamas is this: They do not view themselves as super women, even though to an onlooker the added responsibilities of numerous appointments and therapies look overwhelming. You may be surprised to hear that comments such as “How do you do it?’’ and “God only gives special children to special parents,” can serve to make them feel distanced and frustrated. They don’t feel like super-women any more than you do. God has called each of us to different journeys in life and in each path, He has placed different hardships. Each one is given the strength daily to face whatever our Hard Thing is, and few SN Mamas like to be distanced to that plateau of The Hardest Thing. They are doing what is best for their child at the moment. Just as you would.
One of the biggest gifts you will give a SN Mama is the gift of grace and acceptance. Don’t be offended when she turns down the invitation to a coffee break, birthday party, or girl’s day. Sometimes there isn’t enough mental and physical energy for everything, and something must go. It’s hard for her to chat lightly about recipes and dress patterns when there is a current decision weighing heavily on her mind or a surgical procedure she is steeling herself for. Keep inviting her, even when it seems she never shows up; she needs to know you didn’t forget her.
It is not especially helpful to pat her on the back at church and say, “You are doing so well,” then go your way without taking the time to actually hear how her real life is going. She does not want to be self-focused, so she will likely not tell you honestly unless you ask. Stay involved. Know enough about what happens to know how and when to offer help because even small things can be huge. When she is feeling overwhelmed, sometimes the best thing to say is, “I have two hours. What do you have for me to do?” Offer to babysit, hire a maid for her for a day, send freezer food, make her dish for carry-in during an intense week, or offer to do her laundry. Pray for her and tell her you are praying. Drop a coffee off or a vase of flowers and a hug. Many families spend a good deal of time on the road with appointments, etc. and a practical way to show you care is to bless them with gas money, restaurant gift cards, or cash.
In cases where it is possible, learn to give the needed care to a special needs child so that his Mama can confidently leave him with you and get away for a space. If you know her to be a social butterfly, plan a tea party or brunch with her and her friends and let her know all is cared for. If she is the quiet type who values personal space and time alone, give her a babysitting coupon and some cash and tell her you will be here for XX amount of time. On the other hand, be understanding if she refuses but don’t stop offering.
Be conscious of special diets, weaker immune systems, etc. especially when inviting the family to your house. Be kind enough to let Mama know that you’ve had the flu bug lurking in your house, and that your four-year old is coughing. For some children, a cough is life threatening, especially if accompanied by a cold. Prevention is the cure for much of Mama’s weariness and she will be most grateful for your thoughtfulness. If there is a special diet that is needed or even appreciated, do your best to accommodate them and let her know what you plan so she doesn’t need to bring prepared food along for her child.
SN Mamas tend to feel disconnected from other ladies who have fewer stresses on their strength. One of the things that widens the gap is when ladies sit around and discuss complaints from their everyday lives that would seem like a dream for her. It will be hard for the SN Mama to understand why you are complaining about giving your child a round of antibiotics that will mess up his gut health when she has seen her newborn survive a nine- hour surgery that she knows saved his life. That surgery was followed by enough antibiotics to drown an elephant and she knows she owes her child’s life to the medical knowledge she was able to utilize for her child’s wellbeing. She will struggle to know how to respond when you bring your newborn home twenty-four hours after a natural delivery and complain about sleep schedules and family life being disrupted. She remembers nights in that hard hospital chair by her baby’s bedside, willing away the wires and tubes that kept her from cuddling and snuggling the newborn softness and longing for the comforts of home.
Occasionally a person of faith will say insensitive things like, “Have you ever prayed for your child to be healed?” That can actually sting, coming from fellow Christians, indicating that the SN family might have inferior faith. Of course they have prayed that their child would be healed! That’s the first thing they did, through their tears, down on their knees beside the precious baby who was just diagnosed with his condition. And they kept on praying until they had peace in accepting what God in His sovereign wisdom allowed, and trusted that God has a special plan for the life He designed.
Along these same lines comes the unsolicited advice, the internet cures from people who have done a google search and now know more about your child’s condition than their doctor does. It is very painful if to get the feeling that your child is being researched, toted about and displayed like a specimen. Probably it is best not even to use the term “normal” unless you are discussing the weather. If you overhear someone saying hurtful things, kindly clue them in. That will be less awkward than a snarky comment from the mother of the SN child, but they certainly have a collection of things they would often like to say. SN Mamas need your support much more than they need you to fix the “problem” with their child.
“I know just what you mean.” This comment is likely one of the top three (the other two: “Is he normal? and “special children for special parents”) that should be used most sparingly with a SN Mama. If you have not walked their road, you actually do not understand all the emotions, energy, and stamina her life requires, and she knows it. However, this does not have to distance you! Listen gently without judgment. She does not fault you for not having experienced it, but please do not say “I know just what you mean” when you don’t.
Be understanding of the fact that a special needs child has changed your friend’s life dramatically and may in turn change them. As in any relationship, keep communication honest and be willing to hear that your good intention may have hurt deeply. They need you now more than ever, but it is hard to always know how they need you so communicate about it honestly. Do not withdraw from their lives simply because you “don’t know what to say.” Learn to know the new person life has made them and be there! Maybe you will find her with a different set of friends whom she can identify with now because of her child and you find you cannot identify at all. Be accepting. She needs their support as she navigates this pathway, but she still needs you as well!
The journeys we are called to undertake and the “normal” that we embrace vary with each person on earth, yet they need not alienate us from one another. Let’s learn to love well together, shall we?
This article was compiled by Naomi Hostetler, a young lady who married a former second grade student of mine, which makes me rather old. I am very pleased that he found such a thoughtful wife. 🙂 Naomi loves and helps to care for a special nephew, and this subject has been on her mind a lot. I have added a few paragraphs from my own circle of brave acquaintances and I’ll tell you that I cried when I read their honest words. It is why they are all anonymous, so they can say it like it is.
The following is a result of five kind mamas who shared their time and thoughts with me as it pertains to caring for their special needs children. My only wish is to help advocate for these children among those whom it is sometimes hardest to speak honestly to on a delicate subject- the ones closest to us. Let’s learn together, shall we?
There is many a disabled child who longs to keep up, to run to the swing set, to run up and down the steps, to master difficult mathematical concepts and to be accepted as one of the flow. Their sense of self-worth is often more fragile because of the differences in their lives from what they see in their peers, and it most crucial to do our part as families, friends, and teachers to help them realize their value as a creation of the Master Craftsman.
The SN Child is in fact, first a person. They have their own personalities, likes, and dislikes. A child’s disability does not define him, hence do not go about introducing them as “This is ________, the ONE with ______.” It is painful to be used as a showpiece, and one must be sensitive to the reality of making the child a celebrity because of his disability. Yes, this disability has changed their lives and yes it is part of who they are, but it does not need to define them. First, they are a person.
You will forestall much pain in the hearts of an SN Child and his parents if you think before you speak. “Is he normal?” Really? Who says what is normal? “At least he/she is cute!” And there is nothing else to offer? “He seems smart.” Seems? “How can you stand to watch him face this, (do her bowel routine, struggle through the therapy programs, etc.)?” How would you stand it? “Why does he need a wheelchair/walker, etc?” Every mama would protect her child from rude remarks, but when their child has an extra high mountain to face in the road of acceptance or dark times of physical pain, rude remarks tend to feel amplified. Just think about it. Would you like to hear it? Would your child like to hear it?
The most significant rule in caring for the SN Child is one we all know well- The Golden Rule. Put yourself in their shoes (or try as best you know). Children want to be friends, not freaks. Always assume competence when you are in the company of a disabled child, and leave the baby talk for that respective age group. It makes a conversation more comfortable to look someone in the eye when you speak to them, so don’t hesitate to get down on their level and then ask them age-level questions about what they’ve been doing. These children have lives other than their disability and they deserve the chance to talk about it! Personal questions that may be embarrassing to them such as questions about physical appearance, feeding tube, diapers, etc. are not okay. Here again, the Golden Rule covers so much. Would you be liked to be asked this question?
There are many waysyour children can play with handicapped children, and your effort in intentionally teaching your children about this will bless not only the child but also his mama. A child who relies on a wheelchair/walker for his independence can be made to feel as much a part of the social circle as the child who runs on two sturdy legs when there is a deliberate attempt to integrate them. It can be very small kindnesses, like guiding the slow paced one to where the crowd is going, at least stopping to say hi, or playing a game that the physically challenged can participate in, which might take some forethought. Often children run off with their friends and are scattered far and wide, but you can help your child to reach out to a SN child. Encourage them to not give up easily when the interaction feels awkward.
Maybe you are inviting a family with a disabled child for a meal. This child walks with a walker and finds the steps in your three-story house difficult to navigate. Have a little forethought, and he will feel much more welcome and much less like a nuisance. Put some toys that he/she will love on the main floor. If the child is old enough to appreciate the social interaction, have your children play indoor games for the evening instead of playing hide-and-seek outside after supper. Board games that can be played on a table which is an easy height for the child in the wheelchair, or games that can be played sitting in a circle. If the child is one who doesn’t care as much if he/she has other children playing with them but needs to be entertained, tell one of your teenage daughters to give mama a break after supper by showing them books and keeping them happy.
The SN Child’s equipment to him is not a fun accessory. It is an absolute necessity. Anything with a handicap tag is very expensive and fooling around with something that is not yours to use is inconsiderate.Teach your child to play with the child in the wheelchair, but not with the wheelchair. Explain to them that this child’s wheelchair/walker is the same as his legs and would he like if someone played with his legs so that he couldn’t walk around? It isn’t kind or respectful. Don’t let your children push equipment around, even when not in use. To a child who depends on this for mobility, he is stranded without it. Many wheelchair/walker users tend to quickly feel vulnerable in a crowd. Don’t let your younger children push him around or “give him a ride” without consent because when other stronger children push them around it is very frightening. Please judge gently when the child in the wheelchair screams over being pushed about. It is likely not so much an attitude problem, as a feeling of lack of control and pure terror. Their equipment is personal space and is not a toy, and it only respectful kindness to acknowledge this.
This article is not to scare anyone away from getting involved, but simply to inform us all of ways we can genuinely help carry burdens and share joys. Sometimes we are paralyzed for fear we will do or say the wrong thing. Genuine care expresses itself in love, and that is hard to misunderstand.
The next article is about caring for the special needs mother. I am sorry that some posts simply don’t show a comment option. I am not sure why, but I would really love to hear what you have to say. If you cannot find a reply option, feel free to contact me at dorcasp8 @ gmail.com. I will forward your thoughts to Naomi, so she can hear your response as well.
It has been a minute or two since I planned to post this, and then the holidays and a baby nephew in the hospital and a new year and trying to get our school back on track and looking at the books for the pottery biz and doing inventory, etc. I dictated this post when I was on a walk one day, and here I am at 3 AM, wide awake and trying to make sure I fix all the errors that talk-to-text is so prone to produce.
I remember the day a picture hit the media of a child’s body washing up on the seashore in Greece. I scrolled through the news with a knot of grief in my stomach. How can these things happen? What can I do about all this evil? This injustice?
My little girl came to me just then with the book she wanted me to read. She loved the Animally story that was filled with illustrations of animals and punny ways that I love her. “I love you cleverly like a fox. I love you powerfully like an ox.” My head struggled to wrap around the privilege of the little girl cocooned in her favorite blanket in my living room, compared to the too-wise faces of the refugee babies. But what can I do?
Recently we had a ladies’ discussion at church about reaching out beyond our world to those who are needy and some of the many, many ways to do this. Someone mentioned that Mennonite women tend to think that their ministry stops with their families. I’ve been mulling over this for a few weeks. What if one of the most powerful ways to change the world is actually our children?
What if I would have never read my child any more stories because life isn’t fair? What if I decided that the thing right in front of me, the grody bathroom, was not worth scrubbing anymore because there is much bigger work to be done in this world? What if I would have decided that pouring my energies into nourishing my children is not a big enough vocation and from now on they can eat lunchables so that I can spend my days fundraising online? Would there have been some fallout, maybe a bit of chaos in our home? Could this sort of neglect contribute to the endless cycle of soul-hunger in the world?
The goal in my mothering is not to raise entitled people who pitch fits when their perfect life is disturbed. The goal is to raise nourished souls, wholehearted people with a steady background of care and stability and mom being there with hot chocolate and everybody matters. The goal is to send these people into the wide world with a reservoir of fat in their souls, to give them resources as they spread the same love and kindness to everybody they meet. If I send my children out to live as adults with starved hearts because I resented the work they caused me, found a more worthy cause to work for (and I really didn’t even like them,) what have I accomplished?
The way to combat homelessness is not to all move out of our homes. The way to combat lovelessness is not to stop loving those who already have plenty of love. I do not believe that Paul is being a male chauvinist when he suggested that women who have families should keep their homes. I think Paul just saw God’s design as being a good design, like “This is how you bring glory to the world, you young ladies with a husband and children, and you older ladies need to show them how to do this. (And by the way, servants shouldn’t pilfer from their masters and young men should be self controlled and older men are called to be dignified,)” and all the rest of the stuff he was saying in Titus 2. All you have to do is look at the end of the chapter and you see the whole point of Paul’s instructions was not to cramp everybody’s style but to give them simple direction for living a good life that pleases God.
So if you find yourself bristling when someone brings up the keepers at home subject, dare to dig a little deeper into what it actually means. If God gave you a husband or if God gave you children, he gave you a big job worth pouring your life into. I’ve said before that if you’re bored in your work of raising a family, you haven’t leaned into it hard enough. Maybe you have been absorbing some feminist rubbish that is impoverishing your own soul. That may sound harsh, but I believe it.
Nobody can dispute that someone has to do the grunt work in this world and if it is true that everything becomes a mess when mama quits doing her work, isn’t it also true that there will be extra glory in the world when mama gives it everything she’s got?
If you are faithfully pouring your heart into raising a family, you shouldn’t bow to the pressure of feeling like you’re leading some second-class existence “as if God put you on a short tether to a tan sofa” like Rebecca Merkel says in her book Eve in Exile. (Go, read it.) Lift your chin up, offer your work to God and just be that career mom with all your heart. Think of the difference when all these little children swarm into the world with secure hearts and the love of Jesus and knowing how hard love works for others because they’ve watched you model it for years. “I love you bravely like an eagle. I love you freely like a seagull.” (Lynn Sutton, Animally again)
Go ahead, tell me what you think. Is it a struggle for you? How do you minister to the needs in the world around you?
wocket in my pocket 