Act Like You Know Him

I’ll never forget Mark’s first day of fifth grade. It was a unique situation because the building was completely new to him, but the teacher wasn’t. She had previously taught Mark second and third grade at another building but had transferred to a new position at the same school Mark had been moved to.

I did everything I could to make the transition as easy as possible for Mark. I reminded him repeatedly that, yes, the building would be new and so would all the other students. But I reassured Mark by reminding him that he would have the same teacher whom he already knew and loved. I even made two separate trips to the new building during the summer, so that Mark could become more comfortable with what would be his new school.

He was proud to be starting fifth grade and excited to see his favorite teacher once again. So, I was honestly taken aback by his reaction when the first day came. In fact, I think his feelings and actions took both myself and Mark by surprise.

Together, we entered the cafeteria where all the students had been asked to gather on the first day. But that’s when I felt Mark’s clasp on my hand turn from relaxed into a death grip. And when I glanced down to see what had happened, I noticed he wasn’t breathing. He must have started to hold his breath prior to digging his fingernails into my right hand because I noticed his cheeks were beginning to turn the same shade of purple as his backpack. Oy.

It was packed and as loud as you can imagine one room filled with over five hundred excited and anxious children would be. But I did my best to find a bit of privacy. The very last thing Mark needed was to add embarrassment to everything else that was already overwhelming him.

“Mark,” I said as calmly but as loudly as I could so that he would be able to hear me. “You’ve got to breath, Sweetie. Breath.”

When that didn’t work, I relied on an old standby; I started blowing puffs of air into his face. Thankfully this worked, but after a few hard blinks, Mark suddenly took a loud gasp of air and proceeded to let out a blood curdling scream.

“Mark, calm down,” I said as I rubbed his arms, trying to relax his stiff, tight muscles, “What’s wrong? Tell Momma.”

“I…Uh…I…Uh…Uh…” he uttered repeatedly between sobs. I could tell he was close to passing out and could do little more than stutter at this point.

The not-so-small peanut gallery of other kids and several adults that was now surrounding us didn’t escape me, either. Neither did it help. So, I grabbed Mark’s hand firmly and guided him through the crowd back to the school office.

It took some doing. The office staff did not want to call his teacher down to the office. They wanted to protect her last few minutes of free time before the start of the school day. But I knew that she knew Mark and loved him as much as I did. I also knew that if Mark could just see her, he could remember that in the middle of all this newness, all this chaos, all this emotional suffering and distress, he could know that everything was going to be okay.

Fortunately, I was convincing enough. Either that or Mark’s inconsolable tears and incomprehensible stuttering did the trick. Who knows? Maybe both helped. But it took little more than a few minutes from the time the teacher was called to the moment she appeared in front of him, kneeling down to make eye contact with Mark on his level.

“Mark,” she said so softly I could barely hear her myself. “It’s my first day, too. Can we go into the cafeteria together?” And with that, there was a transfer of security. Mark’s now sticky-with-sweat and shaking hand transferred from mine to that of his teacher. In an instant, my own blood pressure likely dropped a good 30 points!

The situation didn’t change at all. Mark was still terrified and suffering terribly. But now he knew he wasn’t going to face the day alone. He knew his place: In the middle of this new and scary situation, yes. But also in the caring and proven hands of a teacher whom he loved, knew and trusted.

The same is true for us.

We can suffer well if we also know our place. Like Mark, knowingly stepping into a most uncomfortable situation, but comforted by knowing that he isn’t alone. Our place is with God. He is our rock (Psalm 18:2), our shield (Proverbs 30:5) and He “knows those who take refuge in him” (Nahum 1:7).

What a profound privilege.

What a peaceful place to be.

Like this post? It’s taken from Going for Broke: How to Suffer Well. (Click here to find it on Amazon.)

Overwhelming Unknowns

I doubted I could do it. After all, how do you manage what you don’t even understand? Doctors had given up. Emergency rooms and hospitals had given up. But this wasn’t just a situation. This was a soul, a little boy, who desperately needed help.

Yet that didn’t make the challenge any better. It didn’t make it any easier. I still had no idea what to do. And that lack of answers and directions only fueled my doubt.

Countless blood tests and exams turned out nothing out of the ordinary.

A week-long hospital stay provided nothing but a big ol’ bill to add to the pile.

I was desperate, and so was Mark. And so my doubt grew even more.

My doubts were so numerous that one day I let myself go there. I got out a pen and paper and wrote down all my unanswered questions:

Why does Mark’s breath and skin smell so badly?
Why does his ability to communicate seem to come and go?
Why is he riddled with crippling pain some days and not others?
Is there a pattern?
What’s causing it all?
What can I do to affect it?
Is there anything I can do?

The questions flowed like water onto the page, my handwriting getting worse and worse as I struggled to write as quickly as I could. And the more I wrote, the more quickly even more questions came. I could feel my heart rate pick up and I began to wonder whether this was really a good idea or not.

Eventually, my hand started to cramp up, so I dropped the pen to give it a rest. That’s when I focused on one of the last questions I’d scribbled down:

Why isn’t anyone helping me?!

And that’s when my doubt turned to shame.

Doubt is common human experience. We all feel it. And there’s no shame in that. My shame was coming from how I was managing it—or rather my lack of managing it. I was allowing my doubt—and the overwhelming amount of unknowns—to overshadow and outweigh what I did know. There was no denying it. The writing wasn’t all over all the wall. It was all over the paper in front of me. Yikes.

That’s when I flipped it. I made a conscious effort to write down everything that I did know:

Some days were better than others for Mark.
He did seem to have reactions to some foods rather than others (despite the doctors saying it didn’t make sense).
No matter how Mark might struggle, I could help him choose and experience joy.

I wasn’t writing quickly anymore. While all the previous questions bubbled over easily, I admittedly had to search intentionally for these statements. But as I wrote—slowly and surely—I noticed that each of these statements became like anchors for me. Sure, there were a lot of unknowns. There was no denying that the questions (by far) outweighed the statements. But then I noticed that the shortest sentence of all still managed to outweigh everything else:

God is with me.

God knows those who run to Him (Nahum 1:7b). He’s near to those who call out to Him (Psalm 145:18). And He was—and still is—with me, even in the midst of my doubt. It was my fault for not recognizing His presence and claiming His help and rest.

Years have gone by now. And in a lot of ways, things have only become more complicated. Mark still struggles with intense physical pain. He makes small intellectual gains, but then regression and memory loss steal it all way. And ironically all the answers we’ve been able to to find have only lead to even more complex questions.

The situation hasn’t improved. I have.

Doubt still creeps in, sometimes even daily. But now, instead of letting it take over, I use it as a cue to go running to what I know. I cling to certainty. I claim safety in my anchor: God. And you can, too.

Grace to Grow On: Hebrews 13:5, Matthew 28:20

Practical Help:

Purpose to separate what is self-created and what is reality, so that you can respond in appropriate ways.

Our feelings can be fickle, including doubt. They’re real in the sense that they are, in fact, what we’re experiencing. They describe how we’re reacting. But our feelings don’t always accurately reflect what’s truly going on.

Separate the two. Respect the two. But also know how to respond to each independently of one another.

Escaping Fear

I really didn’t know what to expect. I mean, sure, I was hopeful for some answers. I couldn’t help but think that if we could nail down what exactly was going on, then maybe we could better equip ourselves to help Mark. We’d know better what to do, who to seek out and how to approach all his unique needs. And this test was easy enough to perform. Just a quick swab of the inside of Mark’s cheeks and then simply wait.

But nothing—absolutely nothing—could have prepared me for the results.

Extensive genetic testing revealed a massive list of specific conditions, diseases and disorders that Mark had a genetic predisposition to—372 different conditions, to be exact.

Talk about having the wind absolutely knocked out of you.

First, the genetic counselor went into damage-control mode:

This doesn’t mean Mark will come down with all of these conditions.
He won’t necessarily have to deal with any of these until later on in life.
He’s doing remarkably well considering all that we know now.

But then she returned to the grave reality:

He will likely suffer from several—if not many—of these listed conditions, including conditions that aren’t even listed.

I’ll never forget what I asked her next. It was the exact same question I later asked Mark’s biochemical geneticist, too:

“When can we breath a sigh of relief?”

I wanted to know when we could cross some of these conditions off the list and simply not worry about them.
When would we be able to whittle this massive list down to a more manageable amount (if there is such a thing)?
Would we ever be able to not live in fear of something catastrophic popping up unannounced?

I’ll never forget both their responses. They were the exact same: Never.

That was 3 years ago.

As anticipated, things continue to pop up constantly. And it’s always very rare issues, too. It’s always conditions that have no simple answer or symptoms that Mark’s many doctors simply have no experience with. Still, I often feel like the wind is completely knocked out of me. Every day, there’s at least a handful of times that something about, related to or with Mark catches me off guard. But in the midst of it all, I’ve had to learn not to fear.

I’ll be frank. My initial reaction was to be swallowed up by it.

How do I care for Mark if the doctors don’t even know how?
How do I (joyfully) parent a child whom I know is most likely doomed to suffer so terribly?
How to do I keep going knowing my very best will never be enough?

These questions—and many others—still continue to creep in. That’s why I said I had to learn not to fear. But, thankfully, as with anything else, practice has helped me make progress. It all came down to a choice.

I could focus on what I feared: the reality and gravity of Mark’s future and the part I could play in it (including the lack thereof).
Or I could focus on what I knew: God is in control of everything (Isaiah 45:7, Job 42:2, Proverbs 16:4).

When we choose to dwell on our fears, we’re ultimately placing them higher on our priority list than God Himself. But if our thoughts and our hearts are where they should be to begin with—completely focused on God and His truth—then our fears get pushed aside and crowded out by the freedom that comes from giving back everything that was never ours to begin with. Fear can often be boiled down to a lack of control, control that was and never is ours to begin with.

But I’m human. We’re all human. And to say this process is hard is a vast understatement.
I know. I had a list of 372 autosomal recessive conditions staring me in the face. And the reality of each and every one of the items on this massive list were only feeding my fear. But, thankfully, I had another reality also. I had a Book that could feed my trust, too.

What if Noah had looked at the reality of his surroundings instead of listening to God? He wouldn’t have build the ark that saved him.

What if Lot’s wife had listened to the angel’s warning, God’s message: Escape for your life. Do not look back or stop anywhere in the valley. Escape to the hills, lest you be swept away” (Genesis 19:17 ESV)? Then, she wouldn’t have turned into a pillar of salt (Genesis 19:26).

Our fears are valleys, too. And we can very much become swept away by them. But no matter what our circumstances are (or ever will be), escaping our fears is always in our control because we can choose to focus on God—and His track record—instead. In short, we can choose to follow Noah’s example and learn from the woeful mistake Lot’s wife made.

And so I’ve learned to put that spreadsheet away, love and care for Mark the very best I can and focus on God as intentionally and as fully as I am able.

I’ll never be able to forget what likely lies in store for Mark.
I’ll never be able to help prevent any of it.
But I can escape the fear of it because I also know something else: I’m never alone. The One who is in control of it all is also with me.

Grace to Grow On: Joshua 1:9

Practical Help:

Name it. Identify your fear. Be as specific as possible. Don’t let it masquerade as something it’s not. Letting it lurk around in the peripheral of your thoughts gives it the opportunity to fester and grow. This enables its power over you to grow, too.

Ask yourself what’s stronger: your fear or your trust in God? Then, purpose to act—and train your thoughts—accordingly.

We’ve already been given a spirit not of fear, but of self-control (2 Timothy 1:7). Choose to act on the latter to put the prior where it belongs!

 

 

An Uncomfortable Cleaning

As I rummaged through the dresser one-handed, I quickly realized that all the 24 month clothing I had prepared for Mark’s arrival were simply not going to work. Nothing inside that dresser was going to fit on his tiny body.

That’s when I recalled that the shirt I had just peeled off him in the bathroom. It was the same shirt I had sent down for him several years ago. It was size 6 months. Having been told over and over again that he was growing well and getting quite large, I had already given away the bulk of the smaller clothing I had. Fortunately, though, I had kept just one tiny outfit on the off-chance that it would be needed. Recalling this, I opened the bottom drawer, grabbed it and headed downstairs.

“What can I do to help?” Jason said rushing over, clearly wanting to help alleviate the load I was currently bearing, both emotionally and physically.

“Could you spread out that towel on the counter and go grab Nate’s soap? I forgot it while I was upstairs,” I said, trying to at the same time to surmise how in the world I was going to approach this new situation with a child I didn’t know.

“What you be doing, Momma?” Nate inquired running up to see what his new brother and I were up to. “Mark be okay? Where be his clothes?”

“Oh, Mark’s just dirty from all that time on the airplanes,” I explained. “It’s time to get him clean.”

Eager to get this whole bathing business over with, I once again attempted to set Mark down. Like a fearful, wounded animal, he began letting out a meager cry while reaching out for me.

“Mark, Mommy’s got to wash you. I’ll be as quick as I can,” I said as reassuringly as I could. This was uncomfortable for me. But it was clearly terrifying for him.

It wasn’t long before Jason returned with a plethora of bath products in hand.

“I didn’t know what you wanted, so I brought it all,” he said a bit breathless.

“Thanks,” I said as I unpacked his arms. “You and Nate might want to go upstairs. He’s probably going to cry…”

“Just holler if you need anything,” Jason said, eager to escape the inevitable soundtrack that was to follow.

I was right. The next fifteen minutes were filled with screams. Despite my best efforts to coo and calm him, Mark wailed as if I were pulling out his fingernails. I imagine that emotionally that’s probably exactly what it felt like. A complete stranger had just stripped him naked and was scrubbing him clean. Sure, he was finally and forever home. Granted, Jason and I would do all we could to take the very best care of him. But Mark didn’t know that. At the time, being cleaned and cared for was an uncomfortable and scary process. It meant Mark had to be vulnerable.

And sometimes the same is true for us, too.

We have to allow ourselves to be vulnerable enough to drag it all out into the light of day, so that God can transform and make us new. We have to trust that God has our very best interests at heart, even when in the moment it may not entirely—or even remotely—feel good. We have to accept that sometimes the cleaning process isn’t comfortable one, but certainly no less important.

And we know that for those who love God all things work together for good, for those who are called according to his purpose.
Romans 8:28 (ESV)

A Pocket of Crumbs

Honestly, it was getting a little frustrating. Every load of laundry was full of crumbs. And—for the life of me—I couldn’t figure out where in the world they were coming from.

But a little further digging revealed the source: pockets. This plague of never-ending crumbs was all coming from one place. This big ol’ nuisance was coming directly from Mark’s itty, bitty pockets.

I couldn’t and wouldn’t scold him. But I sure wanted to know why. Why was he stuffing food in his pockets instead of his mouth? So, I did the one thing I could. I started watching him even more carefully.

I watched Mark at every meal. I watched him when I offered him snacks. I watched him when he thought I wasn’t looking. And—sure enough—each and every time the same thing happened: a little food found its way to his mouth and some got quickly shoved in a pocket. Over and over this process went.

Even if Mark had been able to talk, I don’t think he would’ve been able to give me an answer as to why he was doing this. I think the root of this behavior went too deep, was too painful. And when I finally got to the heart of it myself, I began to feel complete and utter shame that I had wasted so much energy on frustration.

While only 2 and a half years old when he finally joined our family, Mark had already experienced profound abuse and neglect. I learned from his previous foster mom that Mark’s very first foster placement hadn’t been meeting his most basic needs. In fact, he was very rarely fed at all, likely only enough to keep him alive. Instead, that foster mother was using the money that was provided to care for Mark to care for her own biological children. This left a tiny infant Mark woefully underfed and malnourished.

Fortunately, though, after we found and accepted his referral for adoption, Mark was immediately placed in a new foster home. After over 5 months in the neglectful home, Mark was moved to the care of a new provider whom we would pay monthly fees to. To her credit, this new foster mom took phenomenal care of Mark from the age of nearly 6 months old all the way up to the time he was toddler, when he finally was able to come home to us.

But even this foster placement was in an impoverished country. Who knows how frequently food was available and provided for him. I’ll never forget the day I felt the sting of tears in my eyes as I poured animal-shaped graham crackers into bowls for both my young boys. It was at this exact moment that I realized the “why” behind all those pesky crumbs.

Nate, our biological son, gobbled them up without a second thought. He knew food would be reliably and predictably available at every meal and whenever he felt a rumble in his tummy. But little Mark, on the other hand, didn’t know that. He likely remembered all too well the burning of an empty stomach. He didn’t know food would be available later. He didn’t know his needs would be taken care of because he didn’t know us yet. Nate was just snacking. But Mark—even at only 2 and a half—was worried about surival.

Eventually, I stopped finding crumbs inside Mark’s pockets. Fortunately, it only took a few months for Mark to learn that he could depend upon us to provide for all his needs. But from time to time, I still like to remember those crumbs. They’re a reminder to me that trust takes time. Trust isn’t easily handed over. It’s earned. And the same is true for us in relationship to God.

Each and every time we reach for control, it’s paramount to saying we don’t fully trust God.

To counter this—to avoid grasping for control that’s not mine to take—I start stuffing crumbs of truth inside the corners of my heart and head. I collect and cling to Scripture verses that remind me of my purpose and place and of God’s promises. I remind myself stories of how God was faithful to care for others in the Bible, even in the midst of struggle and suffering. These “crumbs” provide me the extra security I need when I find my own faith wavering.

For whatever was written in former days was written for our instruction, that through endurance and through the encouragement of the Scriptures we might have hope.
Romans 15:4 (ESV)

Bursting Bubbles

It was a beautiful sunny Fall day, so I took Mark and Nate outside to blow bubbles. But what I thought would be fun, quickly turned into a sticky, frustrating mess for my 3 and 4 year old protégés.

As I watched them quickly and forcibly blow air harder and harder through the small plastic wands, I couldn’t help but feel their frustration. Over and over again, I watched them suck air in, only to blow it out twice as hard. And aimlessly so, despite the wand poised carefully right in front of their mouths.

Try as they might, their determination and sheer force were also their downfall. They watched in amazement as hundreds of tiny, rainbow orbs emanated seemingly effortlessly time and time again from my own wand. What was the difference? Why did mine “work” and not theirs? It certainly wasn’t due to any lack of effort or will on their part.

I gently took the dripping wands from their tiny, sticky hands. I demonstrated the art of how to blow gently, steadily, purposefully. But, sadly, this skill would just have to wait. It wasn’t the right time. They hadn’t yet developed the patience to blow slowly and intentionally. They didn’t understand the finesse that was required in such a simple task. Instead, they wanted to will those bubbles into existence with brute force.

Sadly, where there is a will, there is not always a way.

Having decided that was enough practice for the day, I gathered the boys, cleaned them up and distracted them with another activity I knew they could handle: playing with toy cars. But as I returned to clean up the sticky mess of unused bubble solution, I reflected on the frustration my boys felt and how I, too, often experience this in my own circumstances.

How often I try to push, prod, poke and otherwise try to force things along when it’s not in my ability—or even place—to do so. How often I exhaust myself trying, completely forgetting or—even worse, ignoring—this truth. How often I don’t practice humility in my daily life.

Timing isn’t ours to choose. And while waiting is admittedly hard to do, it’s what we’re told to do. Fortunately, though, we needn’t sit idle. God has provided instructions for exactly what to do in the meantime: Keep His way.

Wait for the Lord and keep his way…
Psalm 37:34a (ESV)