This Special Needs Mom's Daily Schedule

I've toyed with the idea of sharing what a day looks like at our house, and decided to just go for it.  This was Monday, and while this particular Monday had an extra appointment thrown in at the end, that isn't atypical.  There are the regular, recurring appointments, and then the frequent specialist visits we deal with.

5:30am: Ryan wakes up.  On Monday mornings he works from home from in the mornings because Pip goes to a therapeutic preschool program, where he gets PT, OT, and Speech/Feeding in a three hour drop off program.

6:30am: I wake up, forego a shower, and prep everything for the day as quickly as I can. This means packing lunches for 3 kids, making sure we have water, formula, diapers, extra tube supplies in case of an emergency, etc. ready for the day.  I also pack Pip's little backpack, which he takes with him, with a bottle, applesauce, and extra outfit, water, and anything else they want with him that week.  

7:30am: The kids all wake up.  Mercy (7) dresses herself, Gilead (6) needs several reminders, but gets it done in the end.  Abel (4), who is on the spectrum, needs maximal direction and still can't fasten pants or get his compression shirt on himself.  Once Pip is up we disconnect him from his feeding pump and tubes, change him, change the dressing at his tube site, and administer his meds.  Now that he's awake and I have access to his pump I prep it for his morning therapists.  This involves opening a new feeding back, loading it into his little backpack, priming formula through his pump, and making sure all of the settings are correct.  The process takes about 10 minutes.  In the meantime, Ryan puts Pip's car seat in his commuter car.

8:00am:  I leave to take Pip to his therapeutic preschool program.  Ryan is left to feed the other three, comb their hair, etc. and get them to school by 9:15.  This is not as easy as it sounds when you have a child on the spectrum who requires full guidance to get these things done.

9:15am: Ryan and I meet in the school parking lot to switch cars.  I go home for an hour and a half and madly do as many dishes and as much laundry as I can in an hour and a half.

Pip plays at the table during a feeding while I do dishes on a morning he doesn't have therapeutic preschool.

11:20am:  I pick Pip up from therapy/preschool and get updates from his speech/feeding, occupational, and physical therapists.  Then we head to Abel's preschool to pick him up at 12:00pm.  Next we get Gilead at 12:15pm.  The boys eat a packed lunch in the car on the way to therapy.

1:00pm:  Gilead and Abel have therapies until 2:30pm.

3:30pm: Mercy has a GI appointment to keep up on her trouble with neurogenic dysmotility, which we're told is likely a result of a mitochondrial disease.  I mention that she's also had several bouts of the "stomach flu" recently that have increased in intensity, but nobody else has caught.  An hour later we leave with a diagnosis of Cyclic Vomiting Syndrome and three new prescriptions.

5:30pm:  We get home.  I haven't been on top of things enough to have a month's worth of freezer meals or whatever stashed away in a long time, so I frantically try to think of what to feed my starving family.  I start in on a from-scratch stir fry.  It's both economically difficult and nutritionally difficult to eat pre-fab meals when you have food allergies in the house.  In the midst of preparing dinner Pip is due for a feed, so he needs a bottle, and then it needs to be poured into his pump and he needs to be set up with that.

6:30pm:  Ryan works on getting the kids ready for bed.  I work on yet more paperwork until I start reading to them at 8pm.  Most of the time Ryan does the reading while I switch to laundry or dishes and have a bit of "alone time."  By now, since it's the end of the day and everybody's tired, we're usually into meltdown time, too.  Those of you with children on the spectrum know that the meltdowns we're talking about aren't typical preschool meltdowns.  By the time the kids are in bed, we're sucked dry.

8:30pm:  The kids are in bed.  I do more paperwork.  Ryan works on dishes.  At 9pm we call it quits so that we can actually see one another a little bit before we go to bed.  Tomorrow we'll wake up and have a very similar day.  And we'll start it with dishes in the sink, laundry on the couch, and stuff on the table, because we quit at 9pm the night before, if all goes smoothly.  

This week our Saturday morning will consist of taking Mercy in to have fasting labs drawn to check for metabolic problems.  Seattle wants them before seeing her, and GI here wants them before starting her on preventative meds for cyclic vomiting syndrome.

The first week of every month we get our medical supply shipment.  Roughly a dozen boxes filled with formula, syringes, feeding bags, venting bags, extensions, etc.  It takes approximately 3 hours to properly put it all away.  Sometimes 4 by the time we break down the boxes.

This week alone we will have had GI, PT, OT, Speech, Feeding, and Developmental Disability appointments. Plus lots of phone calls.  I often get phone calls during other phone calls.  And I have three stacks of paperwork pending.

I lived life before special needs, and it was different.  Even when we were "busy," the pace was much, much slower.  As the parent of children with developmental and medical needs, there's a constant tension between meeting their needs and maximizing their potential and not going completely crazy.  I don't think I'm there yet...

On Looking Good

I sit down with yet another stack of paperwork, and a tear slips down my cheek.  I've already been to three appointments with my children today, one of which brought yet another diagnosis, and I just don't feel like I can do it anymore.

But we don't look like we're falling apart.  In fact, I hear at every turn that we look so good.  And I am thankful.  I shudder to think how overwhelming this would all be if Pip weren't at a baseline.   However, I'm apparently good at unintentionally looking more together than I actually am, which makes answering questions like "how are you?" feel like a huge dilemma.

When I'm asked how I am, there are two options before me.  I can go with "fine," like the majority of good Americans, and people can take from that what they will, or I can answer honestly with "tired," "overwhelmed," "scared," or whatever is most appropriate at the time.  Then I get to watch the listener wrestle with the obvious contradiction between how I look and what I just said. 

Life as a special needs mom is a unique kind of exhausting.  I read once that it isn't as easy as we make it look, and that sounds so....conceited.  However, I really believe it's true.  There's a lot that happens behind the scenes that nobody sees.  And quite frankly, when we aren't looking "good," we're so far beyond good we aren't out--unless we're at the hospital or some such.

We've adapted to tired, and overwhelmed, and just plain so exhausted we can't see past our tears.  I try to remember that all of the best intentions are being laid forth when I'm told I look "good."  That it doesn't invalidate anything that I'm feeling.  But I wonder if I'm this exhausted and feel like I'm accomplishing nothing, when will I ever do anything that matters?  I see other special needs moms being support brokers for other special needs families.  They're working a job.  Or getting another degree.  Or volunteering for church ministries.

I'm not doing any of that.  I'm surviving.  On minute, one hour, one day at a time.  From where I sit, this doesn't feel good.  It feels like failure.

A Long Diagnostic Road

As many families of children with complex medical issues can tell you, the road to diagnosis and treatment is often long and exhausting.  It's looking like ours will be no different.

We just returned from our second trip to see a neurologist who specializes in mitochondrial disorders at Seattle Children's Hospital.  The first trip the appointment was for Pip, and I flew with him.  This appointment was for Gilead, since he constantly complains of muscle pain and fatigue and disautonomic issues.  

This time we went as a family, which was quite the adventure.  Lots and lots of car time over four days with four young children.  The doctor is highly suspicious that Gilead and Pip both have a nuclear form of mitochondrial disease, meaning that they inherited a faulty gene from both Ryan and I.  Apparently there's a one in four chance of your children getting it if both parents carry a faulty gene.  However, given Abel's autism and Mercy's neurogenic dysmotility, motor delays, and motor ticks, we may have "won the jackpot" and have passed the genes on to all four of them.

Because Pip is the most involved, given his severe GI issues, his motor delays, the *leukoencephalopathy on his brain, and other quirks, the next step is to repeat the MRI of his brain and perform a muscle biopsy on him.  A repeat MRI will show us whether the leukoencephalopathy is progressing, and a muscle biopsy will hopefully show us whether there are damaged mitochondria and help identify DNA.  There are three drugs in the pipeline for mitochondrial diseases, but they're targeting them to specific DNA, which is why it's important to try to nail those down.

The MRI and muscle biopsy will be done in Seattle, which means another tip.  A longer one.  We'll meet with the anesthesia and surgery team on one day, and then he'll have the MRI and surgery the next.  Then we need to remain in the area for at least one day following the biopsy just to be sure there aren't any complications.  Mito kids are more prone to those.  I'm not sure how we're going to manage this.  Taking all of the kids would be hard, but I want Ryan with me.  However, childcare may be downright impossible if he did come.  We're just breathing and trying to trust God one day at a time.

Some of you may recall that since someone hit me on the interstate last year I've had a phobia of interstates since.  After successfully completing the trip to Seattle I was finally relaxing.  Then, about halfway home, we were hit on the interstate.  Again.  You can't make this stuff up.  It was incredibly ironic.  We were passing a vehicle that had spun into the median (a big, grassy one), and police were already there.  Traffic was slowing.  A lot.  Then the car in front of us suddenly pulled over.  We managed to stop on time, but the guy behind us didn't, and rear ended us.  

As it turns out, the car in front of us that pulled over was the news crew, pulling over to get footage of the accident--and in doing so caused another one.  Thankfully, we'd slowed enough everyone was okay.  We now need to replace all of our children's carseats and go through the hassle of a claim, but we're thankful God had his hand on us.

So, now we need to figure out when will be best to return to Seattle for more extensive testing, and this mommy needs to rest in God and not panic about logistics and potentials. 


*Leukencephalopathy means that Pip has white matter damage to his brain, that appears to be a leukodystrophy-like disease of an unknown molecular origin.

Leaving the CREC, Part 3

We said we'd explore why we thought the CREC had so many issues with abuse.  However, we've come to realize that we just aren't qualified to really, fully analyze that.  We do believe we have some pretty solid ideas, but we also aren't prepared for the kind of backlash that posting those could potentially bring.  Especially in light of the fact that there are many, many people in the CREC who we truly love.

Therefore, at this point, we are happy to be listening ears for those who need someone to talk to regarding their CREC experiences.  We know the pain is real.  We've experienced it.  We're also thankful to be in a place of hope and healing now.  We're thankful that God has delivered us into a church community that is full of grace and compassion and gospel love.  We'd love nothing more than the ability to extend that love to others who need it.

So here we stand.  We've been broken by our experiences, and forever changed.  We aren't fully healed yet.  Some things send me into almost PTSD type states.  However, slowly but surely we are being shown that Christ's love doesn't look the way we thought it did.  It is glorious, and we are made new in that revelation.

Leaving the CREC Part 2--The Job

Several years elapsed between that engagement and the series of events that transpired and opened our eyes to what was actually going on in the CREC.  We had now been married just over four years and had been through a period of extended unemployment.  Our third child was also born, and spent most of the first two weeks of his life in a NICU unit.  During that NICU stay, Ryan was offered a job at a small accounting firm on the other side of the state in which one of the partners was a deacon at the local CREC church.  One of the senior level staff members attended there as well.  To even further tie us in, I had known the pastor my entire life—literally since birth.  He was also the pastor who had married us.  Therefore, there was no question of where we would be attending church.  We were already part of the CREC, and we held great love and respect for the leader of this church in particular.

Everything started well at the new job.  At the end of the first three months, Ryan was even given a raise.  However, right after that, the partner from the church left the firm and the other church member took his place as partner. And that’s when things went south.

It was only a couple months after Ryan had started the position that the new partner – a prominent member of the church – came into Ryan’s windowless basement office and asked him a question. The firm had a very wealthy tax client in Spokane, and the partner needed a staff accountant to accompany her on a week-long trip to prepare this client’s taxes. Did Ryan want to go, or did he want the partner to ask one of the other staff accountants? Having just moved, and since I was freshly off a c-section, Ryan said that he would go if needed, but if it made no difference, he would rather one of the other staff accounts go because they had no families. This was the wrong answer. We later learned the question was a test of Ryan’s loyalty to firm, of his willingness to place work above family, and he had failed. It was the beginning of the end.

Soon after, as tax season went into full swing, Ryan began to run into ethical dilemmas while doing tax returns. He notices that tax breaks were being given to individuals who hadn’t really earned them. He had to work on projects that gave valuable tax incentivess to people who didn’t qualify for them.  And then, Ryan discovered the quirk in the internal messaging system. The messaging system was a primitive instant messaging system that the partners used to communicate with the staff accounts and each other when they were too busy to leave their offices. And all messages were archived. And that archive was accessible to everyone in case someone needed to reference old message while working on a project. And while searching this archive for a project, Ryan stumbled across something shocking: even though these messages were archived where everyone could see them, the partners used this system to talk about the performance of their staff. He learned that other staff accountants were about to be fired, and that Ryan himself was close to the chopping block. But most disturbing of all, she complained about me wanting Ryan home more during tax season.

Since this partner was a member of the church in good standing, Ryan felt it was time to go to the pastor. He explained his ethical dilemmas, as well as the poor treatment of fellow employees he witnessed on a daily basis. The pastor listened, and talked to the previous partner, who was still a deacon in the church. But the deacon believed the ethical issues were “gray areas.” And the problems of backroom gossip and poor treatment of employees were simply not addressed.

A few months later, in the middle of October, Ryan received another visit from the new partner. This time, she told him he would be let go at the end of the year, and that he needed to start looking for work elsewhere. This deal changed several times, ranging from one week, to “as much time as you need” and back again. The stress was unbearable, and one Sunday morning I cracked. The wife of the deacon who used to be a partner asked me how I was doing, and I lost it.  It was a mix between sobbing and yelling about how apparently cheating on taxes was a “gray” area, that lying about Ryan’s work ethic was just fine, and the pastor, who I thought cared, obviously didn’t.

Soon we, the partner, and her husband were called into a meeting with the pastor and the other two elders of the church.   I was so shaken up I was using my inhaler repeatedly.  The meeting mostly consisted of the pastor wanting everyone to exchange apologies and call it good.  Ryan repeated that he was thankful for the job multiple times.  However, it was mentioned several times that I was unsupportive of Ryan’s career, which floored me.  Ryan’s boss’s response was “well, this comes from your facebook page, Amber ‘well this sucks.’”  When I denied having said any such thing the pastor wouldn’t hear me out, and Ryan’s boss insisted that I had.  I was asked to apologize, which I did, and that ended it.  I was rather in shock over it.

When we got home I combed through my facebook page for at least two hours, looking for that incriminating post.  This must have been it, because it was the closest thing there was—“Nearly 50 degrees today! I got to enjoy a long walk with my husband. During tax season, an unexpected day off feels like a vacation. We can't get over how wonderful it is to rest and enjoy one another's company!”

Ryan continued meeting regularly with the pastor over the last few weeks of his employment with the firm. He continued to bring up ethical issues and the malicious gossip continuing to be archived in the company’s message system. And several of those messages continued to be about me. When Ryan told the pastor about this, the pastor told Ryan to stop talking to me about work. There was another member of the church who had had similar experiences working for the firm, and she valiantly came to our defense, but she too was told to stop talking, to “stop encouraging them (meaning us) in their sin.”

Thanksgiving came and went, and we tried one more time to talk to the pastor. He came to our house, and we pleaded with him to tell us why we were being thrown under the bus, why the new partner was being so ardently defended, and the answer we received from him was this: “I don’t have to explain my ministry to you.”

That was the end. We started attending another local church, only to find out that the CREC pastor had contacted the pastor of this new church out of “professional courtesy” to explain our situation. We had nowhere left to go.  And it was at that point that Ryan drafted the following letter which we sent to the elders of our former church (names have been removed):

Dear Elders of [the church],

We want you to know, first and foremost, that the decisions we've made and actions we've taken over the past few months have not been knee-jerk reactions. We have been working slowly and carefully through many issues regarding my former employment with [the firm] and our membership with [the church]. Alas, the two became inextricably tied.

The chief problem, as I see it, is that you and I have different ideas as to the nature of the crux of the matter.

Per my many conversations with [the pastor], here is what I think you believe to be the central problem. As you stated in your letter to us dated February 10, 2013, "the forgiveness extended from both parties was intended to lay a foundation for dealing with future issues." Therefore, since there has been no progress toward restoration, the forgiveness on our part must not have been genuine, or if it was at the time, it is no longer present. We have become bitter, in your view, and have refused to make amends, either with the [new partner] or with you, until there is some kind of justice dispensed, namely [the new partner] being required by the church to either secure my position with the firm or face a disciplinary action.

Here is what we believe to be the crux of the matter: Since the elders do not wish to acknowledge the long and ongoing mistreatment of employees at [the firm], particularly by [the new partner], and since they do not believe such treatment has been ongoing since our mid October meeting with the [the new partner] despite the evidence I have tried time and again to present, continuing to attend [the church] would be to unnecessarily subject ourselves to abuse. To put it simply, the elders believe no wrongdoing is taking place, and we are tired of being slapped in the face by the elders and by [the new partner]. We have turned the other cheek to no end, and we will continue to do so, but if staying away from [the church] will take us out of striking range, who can blame us?

However, as much grief as we have received from [the new partner], we have received more from [the pastor]. As he put it during one of the last times I spoke with him face-to-face, "I believe that you believe these things are happening." It was then I knew that nothing I could ever say in the matter would make a difference. I was, in his eyes, a "bitter" soul, and a man who is bitter is to be pitied, but not trusted.

"Bitterness" is a broad and powerful term. When someone is labeled as "bitter," every word spoken and action performed by that person is scrutinized and doubted. No real evidence is required to condemn a "bitter" person because no matter how much truth may fall from his lips, all that need be said is, "I wouldn't listen to him; he's a very bitter person." It is a stigma that is almost impossible to shake once applied, and it becomes a powerful weapon in the hands of those who have dealings with the person in question. It became such a weapon in the hands of [the new partner], a weapon handed to her in an email from [the pastor].

Throughout our dealings with [the pastor] regarding our current troubles, he always refrained from discussing his work or communications with [the new partner]. [The pastor] has always believed that we must deal with our own sins and leave [the new partner] to him. In general, that is a wise course of action. However, the reverse has not held true. While [the pastor] refused to discuss [the new partner’s] character with me, he did not offer me the same courtesy. Not only did [the pastor] describe me as "bitter" in an email to [the new partner], but he also discussed our reasons for leaving the church, the nature of his meetings with me, and which church we were currently attending.

Because the elders of the church refused to believe [the new partner] had done anything wrong, they failed to recognize the danger of giving her such personal information about myself and my family. I had warned [the pastor] many times of the malicious gossip spread throughout the firm by [the new partner], and it was no surprise to find information about our status with the church in the hands of others in the firm. I have attached a publicly archived memo from [the new partner to [another partner] in which she discusses an email from [the pastor] regarding our separation from [the church]. The message was filled with several exaggerations, false assumptions, and untruths, as is usually the case, and I won't bother to enumerate them.

Not long after our meeting with the [new partner] and the elders in mid October, [the new partner] resumed her malicious conversations with [another partner], all the while presenting a smiling face to me. Toward the end of my employment with the firm I was told I was being let go because the firm had over-hired, and I was given a positive letter of recommendation, yet her messages to [the other partner] told another story entirely. In fact, when the Employment Department called [the new partner] in particular to verify my status, she told them I had been fired (as opposed to being laid off), but could give no reasons as to why. Fortunately, the Employment Department determined I had been discharged without cause, and I am now receiving unemployment payments.

All of this to say that [the new partner] has been saying one thing and doing another since our troubles began. Most grievous has been her treatment of Amber. In our meeting with the [new partner] in mid October, [she] vehemently denied badmouthing Amber behind her back, and yet, in the attached memo you'll find yet another example of [the new partner] spreading gossip about my wife that is completely untrue. This is by far the worst thing [the new partner] has done to us, far worse than taking away my job. But the greatest wound we have received in this regard came not from [the new parter], but from the elders, when they assumed [the new partner’s] words were true despite the evidence speaking to the contrary, despite [the new partner’s] reputation in the community, and despite the lifelong relationship [the pastor] has had with Amber.

With the elders considering us guilty of bitterness, with the congregation knowing only of Amber's "outburst" and not the reasons behind it, and with [the new partner] keeping close track of our church attendance for her own ends, the Sabbath ceased to be a day of rest for us.

Those are the reasons we have left the church. Even the [other] church is no longer a haven for us as [the CREC pastor] has been in regular contact with [the new pastor]. Since the elders refuse to recognize [the new partner’s] duplicity, and because of the powerful stigma of bitterness that has been attached to us, we have no more desire to pursue the matter. We wish simply to be left alone. As for what to tell the members of [the CREC church], I don't believe it matters. So long as the elders refuse to hold [the new partner] accountable for her actions, thereby restoring our good names, it is impossible for anyone to know or accept the truth. So long as the elders' impressions of us continue to be based upon assumptions and not upon facts (we have never before "left" a church as [the CREC pastor] believed, and I had no "part-time accounting work" as of the writing of your letter), reconciliation simply is not possible, however much we wish for it.

We do not sit in our house stewing in our own bitterness. In fact, we don't think much about these issues anymore unless pressed to do so. We search for work, we enjoy our children, and we live our lives. You probably won't believe it, but we truly did forgive [the new partner] that night in October, and we still do.

We forgive you as well.

In Christ,

Ryan Myers, on behalf of the Myers family

We never received a response to the above letter. Two months later, we were in Boise, with Ryan starting a new job, a job that invalidated everything that the partners of the firm thought of him, a place where his abilities and work ethic quickly elevated him to management. 

Prior to our experiences, we had always heard stirrings.  Stories of people who had been somehow abused by church members, church leadership, or both.  However, the stories were always tidily explained away, and the term “bitter” was generally attached to the victim in the story.   They weren’t willing to forgive.  Weren’t submissive to church leadership.  Weren’t willing to reconcile.  It wasn’t until we were on the receiving end of those accusations that we realized that we needed to revisit what we knew about those other cases.  That the church we had committed ourselves to for the past several years was throwing people to the wolves.  And that we needed to rethink the theological tenets we thought we firmly believed that had gotten us to this place.

We’ll try to explore those tenets some more in part three.

Why We Left the CREC, Part 1--The Engagement

I’m sure a question that begs to be asked at the outset of this is “why now?”  The answer is, quite simply, because, in the wake of the public conversation regarding Douglas Wilson and the handling of the sexual abuse cases, people are listening.  We’ve been thinking and praying for a long time about when would be the right time to share our story.  We want to do it in a way that conveys our sorrow over the events that transpired, our love for family and friends who are still in the CREC, and yet still communicates that we are convicted that what happened was not handled appropriately.  It, in fact, allowed, and continues to allow, abuse in many forms to take place not just at Christ Church, but in other CREC churches as well.

We’re also cognizant of the fact that we will be accused, once again, of bitterness.  We’ve learned that disagreement with the church leadership in the CREC automatically brands one as being bitter.  Once labeled as such, any testimony one brings forth can easily be discounted.  Please know that our intention is to shed light on things that we find to be disturbing.  Things that hurt the church and its members.  Our concern is that these actions are pushing people, believing Christians, no less, away from Jesus and the community that should be acting as his body—that is proclaiming itself to be His body.

My first experience begins before Ryan.  Before my family as many of you know it.  At that time, my sister, who is younger than I am by not quite 17 months, was engaged.  I was a month shy of 22, and rapidly becoming an old maid by CREC standards.  In fact, I’d even been told by one man that I was “too old and too well educated” and that made me undesirable. And it seemed true.  No one was expressing any interest in me.

Mom and I were at a wedding.  Once again, the bride was younger than I was.  A rather eccentric man at the CREC church we were attending introduced me to a man from a CREC church the next state over.  He was 16 years my senior.  My initial reaction was “no way.”  However, the next day, a Sunday, he sat with us at the regular meal after church and asked for my email address.  I gave him my “secondary” email address.  We commenced writing.  Then calling on occasion.  The next month he came to visit for my birthday and a courtship commenced.

I grew to care for him deeply.  Even love him.  But I was still a bit uneasy and unsure.  However, every Sunday a man from church (various ones) would comment on what a great guy he was, and how excited they were, and I would think “I’ll give it awhile longer.”  Come February, he proposed.  In my naievety, I thought,” If he wants to marry me, he must truly love me!”  And therein lay my error.  Despite misgivings,  I said yes, and the wedding planning commenced.  We set a date for mid-summer.

Once we were engaged, he owned me.  On one occasion, one of his family members asked me what I wanted to change after we got married, and I said “I’d like to buy two-ply toilet paper.”  I knew it was a dangerous question.  One I didn’t really want to answer, and that seemed like a safe answer.  It was also honest.  He was furious.  I’d disrespected and undermined him.  Talk about keeping me fit and trim—especially after children, was constant.  Then came the tickling.  He’d tickle me until I was bruised.  I’d ask him to stop, but it was like he didn’t hear me.  Until I was yelling at him to stop.  Then he’d get angry and sulk, because, once again, I was being disrespectful.  I’d also had surgery for some health problems, and was on some “maintenance” medications.  Several times he asked me how they would affect my sexual performance.  I had no idea!  Not only was I mortified, but I was becoming concerned by the fact that my appearance and “performance” seemed to outweigh my health in importance in his mind.  By now I was scared.  Genuinely scared and I had no idea what to do about it.

And then there were the photos.  Once I’d gone to visit him, and stayed in his mother’s apartment since she was out of town for the weekend.  He had a key, as did I.  When I woke up the next morning, my phone wasn’t exactly where I thought I’d left it, but it was still connected to the charger, so I thought I must not have remembered correctly.  The weekend seemed to go as they typically went, and I thought nothing of it.  Then, a few weeks later, I was at a friend’s house, and she was going through the photos on my cell phone for fun.  This was a decade ago, when we all used flip phones and they weren’t generally used for photography.  There weren’t many.  She came across pictures of me, fast asleep, in his mother’s apartment that weekend.  He was the only other person with a key.

Some hubbub ensued, but in the end, it was determined that it was outside his character to do such a thing, and the matter was dropped.  Mom and I never felt easy about it, but we felt we really had no recourse, and what could we really do, anyway?  Again, we were admonished to trust him.

There was one particular instance in which some things had happened.  Like the tickling, my mom and I weren’t heard until it escalated.  We apologized for the response that he deemed offensive, and I was genuinely sorry.  However, during what was to be our last premarital counseling session, the elder who was counseling us did press the fact that my fiancé at the time should also issue an apology for the behavior, including the tickling, that led up to our response.  We sat there for a solid hour.  He finally said that he didn’t see how it would make a difference.  Awhile later, he grudgingly gave an “I’m sorry.”  But I left that session and went to bed for the rest of the day.  I kept going over and over in my head everything that was transpiring.  How was I supposed to trust and submit to a man I felt genuine threatened by?  I kept praying, and praying, but felt no peace.  However, all I got from the elders was to trust him.  He was soon to be my head.

Two weeks before the wedding, I was physically ill over it.  Even though I’d been having misgivings, my mom was being told by the elders to encourage me to trust him.  However, at this point, we decided to call it off.  I couldn’t do it.  We drove the six hours to where he lived to do it in person.  I’d written him a letter, because I knew I wouldn’t be able to speak.  After reading it, his response to my mom was “What I’m wondering is, if this is a decision that she should even be allowed to make.”  Those words still ring clear.  A decision I shouldn’t be allowed to make.  Then, in my presence, he threw away gifts I’d given him during our courtship and engagement.

I was instructed by the elders in our CREC church not to talk about why I broke off the engagement.  The elder who had been conducting our premarital counseling was a personal friend of my now ex-fiancé, and he had speculated to mom and me that I likely simply wasn’t quite mature enough to get married.  A statement was sent to the church saying that we had differences in communication that we couldn’t resolve, or something to that effect.

Afterward, a number of women approached me, saying how relieved they were.  That my ex-fiancé had always creeped them out.  He was too touchy during church dances.  There was just something “off,” etc. That they had determined to be his friend, because he would be my husband, but weren’t sure how to manage that.  However, because there was nothing concrete—no solid evidence, the men didn’t want them to speak out about it.

At one point I mentioned on my little blog that I was thankful we hadn’t yet kissed—that that was saved for the man that I hoped to marry someday.  Within a couple of days, the elder who had overseen our counseling and was personal friend of my ex-fiancé called me and asked me to take it down, because it was demeaning to his character.

And that was the end of it.  The next several months were a difficult time of recovery, but by God’s grace, I did recover.  Unfortunately, we didn’t realize at the time that covering up abuse, both mild and extreme, was a pattern in these churches, and we stayed.  We weren’t yet rethinking the theology that drives these patterns.  That came later.  Much, much later.

And my ex-fiancé?  He’s now a deacon in a CREC church.

Letter to the Woman who Grabbed my Child

We were there, in the thrift store, wandering the aisles and looking for treasures.  My four children had already picked out their free books--a service that makes this chain a favorite, and we had moved on the looking for other "treasures."  My 18 month old who is presumed to have cerebral palsy, has FPIES (food protein induced enterocolitis syndrome), and is feeding tube dependent was happily perched in the cart, and the other kids were walking with me.

My 3 year old, who is on the autism spectrum, was touching.  Everything.  I kept reminding him not to touch.  However, he wasn't being wild or out of control, and the thrift store has always felt like a safe place to learn.  If something does break, we can buy it without experiencing financial distress.

Abel on a fun outing.

We had just moved past a display that had a tea set in it, when I heard a harsh, whispered "no touch."  I turned around, and you were reprimanding him.  He'd apparently hung back and tried to touch it.  I took him by the hand, and we moved on.  Then, another aisle over, you were there, and you came down fast.  Once again, he was compulsively feeling things, but doing so gently.  You swooped down behind him while I, his mother, was right there.  You grabbed him by the wrists, and said sharply, "look with your eyes, not your hands!"

He looked stunned.  I was stunned.  I'm ashamed that I was in too much disbelief to say anything.  I simply told my children that we needed to go now, and we left.

Abel obsesses over anything with buttons, switches, or levers and is constantly building "machines."

Later came the rage and the feelings of utter failure as a mother.  You had no way of knowing that we'd already had two doctor's appointments that day, and were doing something fun to fill the gap before therapy.  The therapy that teaches my autistic child how to handle stimuli more effectively and that helps my 18 month old who can't yet walk (in fact, crawling is a recent skill) how to move.

But that's the point.  You didn't know.  I'm so acutely aware of my shortcomings as a mother.  That this journey looks nothing like I thought it would.  I cry almost daily over my inability to make things different.  To make them better for them.  

Pip feeding while swimming.  Having him home while dependent on a feeding tube would have been impossible in the not so distant past.

And, as thankful as I am for everything your generation has done, there is this one thing that I can't get over right now--two of my four children would have been institutionalized by your generation.  Maybe not by you, and maybe you aren't aware of that.  But it isn't that children like mine didn't exist then, that you didn't have problems like this.  It's that they were tucked neatly away, out of the eye of the public.  I'm sure families like ours are hard to comprehend and it seems like surely, surely we could have prevented this.

I cry about that, too.

Right now I'm trying hard to spin what you did in a positive light.  To think you were trying to help.  But it felt like an attack on me, not to mention my child.  I wish you knew how regularly I do that to myself. Attack myself.  In the past 24 hours I've been praying for you, and for myself.  That I would be able to love you with the love of Jesus, and that you might have your eyes opened to the real messiness of life.  Of children with disabilities.  I guarantee your life will be better for it.  Enriched.  It's not an easy reality--believe me, I know.  But I also know that these children, my children, are every bit as much an image of God as you or I.

Ready for a bike ride in our Madsen--an amazing bike that allows me to take all four out at once.

  
You have been my first introduction to the fact that many people don't have room in their hearts for those who are different, and that--that makes me incredibly sad.  For my children, and for those of you who are missing out on relationships with these precious little ones.  Because they are precious.  To me, and to Jesus. And I can only pray that someday they might be to you as well.