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.

Periventricular Leukomalacia

Since our last update Pip had an MRI of his brain.  We were told that, if it was normal, we wouldn't hear anything, and we'd go back to see the neurologist in July.  If there was anything to report, the neurologist would call.

She called the next day.

It was a very confusing call.  According to the radiologist, Pip has something called periventricular leukomalacia (PVL), which is damage to the white matter of the brain.  It's typically seen in premature infants or infants who sustained brain injury during delivery.  Neither is true of Pip.  Therefore, the neurologist is holding out hope that his brain might be slow to myelinate.  But the question is, why?

I felt like I had to pull information out of her.  If it is, indeed PVL, then he has cerebral palsy.  If not, it's still unkown.  We were sent to the physiatrist, who said Pip's outside his range of specialty, and referred us to genetics.

In the meantime, we have an appointment set up to go to Seattle Children's to see a neurologist who specializes in mitochondrial myopathy in August.

Pip feeding while swimming on a summer day.

Thanks to having therapy three days a week, Pip's motor skills are improving.  It's looking he's going to beat the predictions for when he'll walk, which is amazing.  He's now pulling up to stand and cruising the furniture.  He'll be 18 months on July 1st.  Of course, this didn't happen in a vacuum, it's been work--lots and lots of hard work.  But it does muddy the water for those who haven't seen the work.  We're learning it's going to make getting coverage for his needs more difficult since he's now teetering on the edge of being developmentally delayed enough and medically fragile enough for Katie Beckett medicaid.  It's a very expensive and very uncertain place to be.  We have a feeding tube, abnormalities on a brain MRI, multiple therapies a week.  We're finally making progress, and that progress makes a diagnosis and insurance coverage that much harder.  If we get a diagnosis, the coverage should follow.

I'm ready for the roller coaster to stop.  I'm having a harder and harder time just breathing.  For those who haven't been on the special needs end, managing the paperwork, services, and coverage is a mess.  Not to mention showing up for the appointments, following through at home, and keeping up with the other kids.  It goes so far beyond the physical exhaustion into an emotional exhaustion that I've never known.

We're praying for answers soon, and that if we don't get them, peace in the knowledge that God will provide the resources to meet Pip's needs financially and otherwise.

Mercy had a Birthday!

Sometimes the normal happy things of life seem to get lost in the noise.  Though hard things are happening, so are wonderful things.  Among them is this:

Mercy turned seven!

How did that happen?  This sweet girl wanted a garden for her birthday.

A lot has happened this past year, and we've seen Mercy grow in so many ways.  She's a fun, sweet, silly, garden loving, people loving girl.  We're so thankful God gave her to us!

Gardening!

I didn't think I would garden this year.  After all, where would the time come from?  And since we moved last summer, we would have to start from scratch.  However, after I did some planting in the front, I remembered how therapeutic getting my hands in the dirt is, and decided to go for it.  Not to mention how wonderful all of the home grown produce is.

Then I began to stress out.  Ryan's work schedule is crazy winter and spring.  Really, really crazy.  I don't have time for laundry, let alone setting up gardens.  And we're sick.  I didn't feel like setting up gardens, but we had to, because the window for planting is closing fast.  Therefore, sick or not, we got it done this weekend.  I can't talk, I can't breathe, and I'm coughing up a storm, but thanks to my husband's encouragement, we got through it.

I found the boxes for a steal on Craigslist, and the trellises are inspired by Pinterest, but in the end, are of our own design (not that someone else doesn't have one just like it, but I haven't seen them if they do).  I'm so excited, and so glad we got it done!  We just need to add a bit more soil, and we'll plant!  Hopefully they'll all be planted by the end of the week.

We also bought a praying mantis egg sack.  It's supposed to contain 100-200 praying mantis eggs that will hatch in 2-3 weeks and help control bugs.  Hurray for chemical free pest control!  And it's just cool.

They're incubating in this paper bag on the kitchen window sill.  Once they hatch we'll take them out and sprinkle them on the garden and landscaping out front.

I'm learning that, although, as a mother of four children, there isn't enough time to do everything, as the mom of children with special needs, it's even more intense.  Setting up the gardens pressured me even more, but I'm hoping that planting and harvesting will provide a much needed outlet when the stress starts to overwhelm me.

Special or Not?

Today was hard.  A day in which I scrolled through the contacts on my phone, looking for someone to cry to, but everyone I would have felt comfortable doing that with was either working or busy with their own crises, so I turned it off.

Where we're at is a lonely place sometimes.  Or a lot of times.  Something I struggle with probably sounds ridiculous, but it's this.  Do my kids (Pip, and possible Abel) have special needs, or not?  Both parties, parents of typical kids and parents of special needs kids seem to think they look too good to fall into the special needs camp.  Maybe they do?

We hear how great Pip looks all the time.  

"He just looks so healthy!"  

"I can't believe how great he looks!"  

"So, he's not walking.  He just needs some more time."

Maybe I should take how great he looks as a compliment.  A tribute to how well we're doing with a difficult situation?  But how it feels?  If feels like it shouldn't be hard.  Like my exhaustion isn't legitimate.  Like the the fact that he has FPIES, takes in very little orally, and probably has cerebral palsy is completely irrelevant.

He does look healthy and wonderful.  Thanks to lots of prayer, energy, elemental formula, and a piece of silicone that's surgically implanted in his abdomen.  And he does need more time before he walks.  He isn't ready.  He just started crawling, and that takes lots of thought and energy for him.  He needs time--and more therapy.

And Abel.  Abel had a CT this morning of his sinuses.  It's thought that he may have inherited my structural abnormalities.  He was terrified.  So terrified.  His little body was literally shaking as he was finally forced into laying down once it became obvious he couldn't be talked into it.  They had me lay down on top of him and look at me.  I kept saying "look at me, Abel.  Look at me in my eyes."  Only Abel has a hard time doing that in the best of times.  He was trying.  Oh, he was trying.  But his eyes were everywhere.  He was trying so hard that his jaw was moving with the effort, so I eventually had to hold his chin, too.  He looked like a caged animal.  When it was finally over, and he was told he was all done he dissolved into uncontrollable sobs. 

Then later, I watched him "color" side by side with a much younger three year old.  She stayed between the lines and grasped her crayon close to properly.  I've seen children Pip's age hold the crayon better than Abel can.

I waver between feeling like I've failed miserably for not being able to get this child to focus long enough to actually hear what I'm saying and follow through, and feeling like I've failed miserably because something in his brain seems to causing his world to be overwhelming ALL THE TIME, and why can't I do something to help him with that?  Then I get overwhelmed by him, and we both end up in a puddle of tears.  We'll likely find out next month if he's actually on the autism spectrum.

We're too normal to be special needs.  Too healthy.  We look too good.  I hear how well I'm holding up all the time.  But am I?  I feel like I'm floating in my own world.  Someone else must be here, too.  But I sure wish that that someone's world would intersect with mine.

The Straw that Broke Me...

In the past month or two we've been told that all four children might have mitochondrial disease.  That Pip might have cerebral palsy.  Abel may well be on the autism spectrum.

Big things.  Hard things.  And through it all, there have been some tears, but no break downs.  We've been told we look good.  I honestly haven't known why, apart from the grace of God.

Then the straw came.  The one that broke me.  Yesterday I remembered to check the mail, since I'd forgotten the day before.  In it was the letter from the charter school Mercy attends.  The one that was supposed to say that Gilead was accepted for kindergarten for the 2015-2016 school year.  Only it didn't.  Instead it said he was on the waiting list.

I knew it was a lottery.  However, siblings get drawn before anyone else, and though there are no guarantees, it's pretty much an implied guarantee.  I lost it.  You see, giving up homeschooling was hard for me.  So hard.  It wasn't easy for me to trust God with letting go of Mercy during school hours.  And now, Gilead doesn't have a place in the school that has been such a blessing to us in a really difficult season.  

I took a long nap.  Then I cried.  And once the dam broke, I couldn't plug it back up again.  The river flowed until I fell asleep.  I woke up to tend to a sick Pip at 12:30am, then cried myself to sleep again.

God's grace isn't any less there than it was when I was "standing strong."  But it's different on days like today.  Today I feel the uncertainty of the future.  The pain.  The heartache.  Not knowing where Gilead will go to school.  When Pip will walk.  If Abel is "on the spectrum."  What any of our futures hold.

And I'm so thankful that God doesn't turn away from the tears, but wipes them for me. That we now attend a church in which the pastor wants the congregation to be okay with Abel's meltdowns.  That we are surrounded by gracious people.

Because today, I'm broken, and I can't guarantee when I'll be back together again.

*As an addendum, I was able to get in touch with the school the following day.  After spending the day working on it, they discovered that we were the victims of the one lottery mistake of the year.  One child with the same last name, and a first name just one letter off from Mercy's also entered the lottery, and her letter and Gilead's were inadvertently switched.  He was, indeed, drawn for enrollment this upcoming year.



  

Hope Blooms

We just celebrated Resurrection Sunday.  Easter Sunday.  The hope we have in our risen Savior.  This year I've found particular significance in the holiday.  Nothing about the significance of Christ's work for us has changed, but our lives have.

We've had a lot thrown at us.  A lot of labels.  A lot of potential diagnoses.  A lot of maybes and what ifs regarding our children.

And yet, the reality is this.  These are the same beautiful children we've always had.  The ones that God gave us.  Created in his image. Cherished by him.  Christ died and rose for Mercy, Gilead, Abel, and Pip.  Not for mitochondrial depletion, autism spectrum disorder, sensory processing disorder, FPIES, or mild cerebral palsy.  Those things, or the possibility of those things, are not who they are.

I still cry a lot.  I'm exhausted and confused.  I don't know how to be the best mom to them.  This is hard!  But hope blooms.  It blooms when the child who struggles with empathy pats his baby brother and says "it's okay, we're almost home" when he's crying in the car.  It blooms when Pip takes a whole three ounces from the bottle.  It blooms when Gilead works up the nerve and strength to go down a tunnel slide.

 We have been so loved by the body of Christ.  Our children know that Jesus loves them.  They have no concept that he might not.  

So we keep living each day in hope.  I administer meds.  We go to therapy.  Teach bodies to move properly, go to appointments, and teach little people that Jesus loves them.  That they are created in the image of God--feeding tubes, motor delays, and all.  They are no less a reflection of Him.

Morning medication ritual.

And this year we celebrate our hope in the risen Christ.  We don't deny that life is hard.  It is hard.  But Christ is risen, and He is here.  He is here.  He's alive.  And there's so much hope.

Running on Empty

Pip swinging and feeding with his pump conveniently hanging from a biner clip.  Those clips and command hooks are my new best friends.

Once again time has run away from me.  So much life happening, and so little time for blogging.  Here's a brief rundown...

We took Pip to Salt Lake City at the end of January to see a craniofacial surgeon who specializes in craniosynostosis. His sutures were so tight that he needed a CT to be certain, but we had much rejoicing to do upon learning that Pip does not have cranio! 

Our trip was not without glitches.  It was our first time traveling since Pip's G tube was placed, and I was meticulous about packing everything.   Or so I thought.  It wasn't until we attempted putting Pip to bed after we arrived at the Ronald McDonald House that I realized the one crucial thing that I had forgotten--the charger to Pip's feeding pump.  Panic ensued (5.5 hours is too far to drive back and get it).  It was 10pm, and we've never had to test the length of the charge.  I put out a cry for help via an online support group for parents of G tube babies, and we were amazed by the way friends and total strangers alike pulled together to make sure we had a charger and could feed Pip.

We also got Mercy's EEG results back and she saw a pediatric neurologist.  Another praise.  Mercy does not have epilepsy.  What she has is a motor tick, likely tied to excess dopamine levels in the brain.  There's a 33% chance it will dissipate, 33% it will remain as it is, and 33% it will worsen.  We'll cross that bridge when and if it comes.  Because motor ticks are involuntary, she can't stop it from happening.  We're praying it will simply resolve itself before kids are old enough to give her a hard time about it.

Gilead also turned 5!  Just thought I'd throw that in there, because it's worth celebrating.  I was worried he would feel lost in the midst of Daddy's crazy work schedule and Pip's needs and the like, but he loved everything about his birthday.  He says that being five is "great!  greater than ever!"

Gilead with his "dinosaur land" volcano cake.  The kids were duly impressed by the dry ice.

Pip wore his "party duds" for Gilead's birthday.

This past month the preschool the boys attend talked with me about the possibility that Abel in particular, but likely both of the boys, may have sensory processing disorder.  They've both had thorough evaluations by an occupational therapist, and, as it turns out, many of things we've struggled with with them are sensory related and can be helped.  Such as, why are my children terrified of stairs?  And playground equipment?  Why does Abel freak out every time there's a drop of water on him?  

They might not be climbers, but they love the swings!

In fact, Abel is so far behind in so many areas that he's being referred to a developmental pediatrician for further evaluation.  Because all of our children have had global gross motor delays and some other quirky little things that do not resolve well with time (despite everyone saying they will), genetic testing is also being discussed.  I'm trying not to think about all of that right now.  I'm having to trust God one day, one appointment at a time.

Because the boys were found to have so many developmental delays, they're each in occupational therapy three days a week now, and speech therapy two days a week.  Pip has therapy three days a week.  This is my job now.  I take children to therapy.

Pip is also still struggling with retching and vomiting.  He was started on a new medication, called periactin, a couple of weeks ago.  It's technically an antihistimine, but also acts as an appetite stimulant.  The hope was that if he felt hungrier, his body would handle feedings better.  Once on it, the first thing we noticed was that he was fussy.  So incredibly fussy.  But his oral intake nearly doubled (to 8-12 ounces a day!) and the retching was better.  Therefore we were told to stick it out.  We hit the "sweet spot" for about two days.  The side effects were manageable and his retching was better.  I was so happy!  But then the retching came back.  So the dose is now increased, but his oral intake is still back to the 0-6 ounces per 24 hours it was at before, and he's still retching.  Last night it was all out projectile vomiting.

If the periactin fails, we're out of options, and we'll have to go to a GJ tube.  I keep being told it could be a wonderful thing for him.  My biggest hesitation is the fact that he's already so far behind with his motor development, and wearing that backpack nearly every waking hour isn't going to help.

In the end, I just keep praying that he'll start to take more in orally, and that we'll be able to achieve a baseline, which might require the GJ.  Once we can do that, we can begin down the exciting, yet terrifying road of seeing if there are any foods his little body can tolerate.

We have a minimum of 11 appointments a week now, and Ryan's working long, long days. On my own strength, I'm running on empty.  Thankfully I'm not on my own.  I have no idea what God's weaving through us in these moments, but I know that he is at work.  There isn't a way to figure out why we ended up with three children with special needs.  Three beautiful, smart, exhausting children who have brains and bodies that work a little differently than most.

But I know that He is at work, and in that there is much comfort.  And of course, fuel for the next day.  Or hour, or minute, as the case may be.*

*And please don't read into that that I don't melt down.  Because I do.  A LOT. Like when I cried on the floor of the bathroom at the Ronald McDonald House...