Dusty Gray: The Color of Death

Stoically she talked to him, quietly calling his name, one hand protecting his leg from crashing onto the wheelchair footrest, the other stabilizing his jerking head against the headrest.

Internally horrified, she watched as death passed over him, the shadow sneering as the seizure kept him from getting a breath, the little boy's skin turning dusty gray.

During the entire episode, she remained outwardly calm and looked as though she were just watching the clock tick. The preschool teacher who had run in a panic to get the school nurse remarked that she wished she could stay so calm.

The mom almost wishes she didn't look so calm. She realizes what her lack of immediate emotion must look like to others.

Does she even care?

Does she have a heart?

In private she allows her emotions to consume her and her heart to break - she cries, she pounds the pillow, she kicks the mattress, she begs God, she hides in her closet, she screams.

However, in public her mind often protects her heart (and surrounding onlookers) by employing a self defense mechanism that keeps her from expressing emotion and drawing too much attention to the situation. She will have an almost out of body experience where, from a distance, she watches events as if they are happening to someone else, and up close, she goes through the motions dealing with the issue like a puppet.

A puppet who saw dusty gray.

Hope

"There he goes! He did it again! He's lifting his head off the floor!"

They were all exclaiming to each other with big grins, cheering and applauding their little boy with encouragement to do it again. 

They couldn't believe it. He could finally lift his head. They'd been waiting for this event for more than 3 1/2 years. They started making phone calls to let everyone know. Who knows what he might do next? 

She smiled to herself as she rolled over under the warm weight of the blankets until her eyes flickered open.

Disappointment set in again. It was just a dream. Another damn dream. She used to view these dreams as some kind of prophecy that one day her son would miraculously just lift his head off the floor, roll over on his knees, begin to crawl, pull to stand up, take steps to walk, or begin to talk using words she could understand. 

The dreams were so real. And friends, family, and even strangers had had them too. She used to feel hope whenever she would have one or hear of one.

But why? What was she really hoping for? A milestone? For what?

Unless a person hits most, if not all milestones, they will probably never function with complete independence. And even with all the faith she could muster, she knew going into the delivery room that his odds of hitting even some milestones where pretty slim, that he would be dependent on someone for his entire life, however short or long that would be.

Even so, she now spends hours taking him to therapies that are supposed to help him hit these milestones. But what's one milestone going to do for him in the midst of the many he won't hit? Will he suddenly be happier or more content? 

He's happy and content now. 

In fact, based on his constant coos and chirps, giggles and smiles, she doesn't know of a more happy and content person. 

The only time he gets upset is when one of his medical conditions flare up, and those have nothing to do with reaching or not reaching milestones. As soon as the medical issue is resolved, he is back to being his happy little self.

She almost feels like he didn't get touched by the original sin of eating from the tree of knowledge of good and evil. He seems unaware of the expectations and desires for success and independence that the rest of us think we want and struggle to attain. 

He seems content to be cared for, happy to be entertained or to entertain himself. And while he may appreciate toys or videos, he does not demand them. 

He seems content to be quiet and still with his own thoughts, drifting in and out of day-dreamy naps, and just as content to be tickled, moved around, and spoken to - almost as if he lives in his own little Garden of Eden. His soul seems at peace.

So whats wrong with that? What is she hoping for? And if she is hoping for something, does that not imply that she is discontent with the way things are right now? 

And why should she be discontent if her son is not? Isn't she just projecting her own fears of wondering how she is going to care for him if he does not hit milestones and is completely dependent forever, or of what others will think if she does not appear to be doing everything in her strength to help him?

He's just so beautiful. And happy. And loved. What more could she really hope for?

The Seizure Beast: A Mother's Perspective

His eyes grow wide with terror as his body stiffens into a paralytic state, his mouth turning into a perplexed and focused frown. The epileptic beast overtakes him and sucks at his breath as his pulse races and his skin turns blotchy.

He moans.

Only a few seconds before, he was laughing and playing, enjoying the activity of the moment and the interaction from family around him. Now his fearful eyes search his mother's for help and relief, silently begging her to release him from this entrapment.

The beast in his brain consumes him, surging an electrical storm through his tiny body. Seconds pass, then a pause -- the beast gets distracted for a moment, the little body relaxing as the initial attack subsides.

They wait, peering into each other's faces, knowing what is coming.

"Make it stop, Austin. Make it stop," she commands.

Seconds later the beast roars to life again with repeated waves of spasms, throwing his head forward, splaying his arms in the air, thrusting out his legs, picking his limbs up only to slam them down again against whatever surface is closest -- his head rest, the metal bars on his wheel chair, the hard plastic foot rest -- bruising him in its wake.

His body shakes and shudders under the violent attack.

The spasms might last anywhere from 30 seconds to almost 3 minutes, an eternity to his mother as she watches him gasp for air, eyes still crying out for help, throat releasing moans intermittently as his body allows, his breath shallow as the beast keeps sucking it away.

He begins to turn blue as the beast tries to stifle his breath, sitting on his lungs causing them to seize with the rest of his body.

She lifts his arms up and down over his head, blowing in his face, encouraging him to take a breath.

Fervently she whispers, "Breathe, breathe, come on breathe." She starts to pray, but the words won't form in her mind. She's prayed so many times. She saves her breath, willing it into him.

Locating the phone in her mind, she visualizes dialing 9-1-1.

At last, he inhales a deep breath and exhales a moan, pink returning to his cheeks. His body flinches in the aftershocks as the beast begins its release, retreating to its hideout in the recesses of his brain.

"You did it, baby. It's almost over. Be tough," she encourages, feeling the all too familiar relief wash over her.

He moans and rolls his head to the side anxiously seeking rest and sleep in order to recover.

Her heart hurts for both of them.

Throat Slugs and Throat Scabs

While the smell of garlicky cheese, roasted tomatoes and yeasty dough wafted through the air, the server finished taking their order. They were just finishing up their appetizers, boneless buffalo wings ordered by the 12 year old and fried cheese ordered by the 15 year old and shared by the whole family.

It was a good thing her parents, she and her husband and their two older boys were practically the only patrons in the restaurant on that Sunday after church because her family laughed raucously in the corner of the pizza joint as the conversation took its usual and inevitable turn towards body humor.

The 15 year old had just begun lamenting the fact that sometimes he had problems swallowing after eating dairy which, on that day, happened to be the fried cheese.

"Oh," she said knowingly, "I call that a 'throat slug'. You know, when there's that slimy thing in the back of your throat that you keep trying to swallow but it keeps bouncing back."

She has her family's rapt attention although there is a slight scowl on her mother's face. Smiles leading to laughing and nodding ensued on all the male faces.

"While you are correct that it often occurs after eating dairy," she continued, "it can also be caused by post nasal drip during allergy season or when you have a cold. You are constantly clearing your throat and trying to swallow, over and over again while the relentless ball of mucous sets up residence with no thought of ever relinquishing its hold. 

When I get to my wits end with that slippery critter, I consciously swallow and then quickly jam my thumb in my neck to try to sever the rubber band effect. After doing that several times, you can usually overcome the 'throat slug', and it will slide down your esophagus to its final acidic destination to be dissolved in your stomach. Often this final severing will need to be emphasized by slapping the counter or table with your hand in order to overcome the incredibly gross feeling of having ingested an alien substance.

Or if you are less of a lady than I or not in public, you can just hock a loogie and be done with it.

On another note, if you retire in the evening with said 'slug' milling around in the back of your throat, and you are too tired after going to bed to get up and take care of it (i.e. you stayed out too late in Vegas singing at the top of your lungs at the piano bar in the New York-New York), you will probably wake up in the morning with what I like to call a 'throat scab'. 

This is the throat slug's evil offspring. The 'throat scab' will result in gentle attempts to clearing your throat to vigorous coughing fits and hacking. If you are in public, people will stare at you. You will make repeated attempts to try to melt or burn it out with hot bitter dirt, i.e. coffee or some other concoction such as gargling with salt water since we all experimented with salt and actual slugs on the sidewalk as kids and learned its chemical effects."

God blessed her with a family of boys for a reason...

Deep Breaths and Bitter Dirt

The fog lifted as she forced oxygen into her brain and eyes by taking conscious deep breaths. She just realized she'd been careening down Loop 303 at 74 mph for the last twenty minutes on autopilot. The culprit was lack of sleep for the past two nights due to the baby getting stronger and rolling onto his back in his sleep. "You would think this would be a good thing," she thought, "the stronger part."

However, because of his lack of swallowing efficiently (or swallowing at all), once the baby is on his back, it is only a matter of time before he will cough or choke. She could lie there and try to ignore it, put the pillow over her head so that the sound is muffled, or she could flip the light on, jump out of bed, give him a quick deep suction with what they now affectionately call the "Suction-ator 5000", reposition him on his side with a prop, then plop back in bed and hope he sleeps the rest of the night.

Experience has taught her to choose the second scenario. Otherwise, while she might buy time pretending to sleep and ignore it, she will actually lie awake listening and still have to jump out of bed, but to the sound of choking and vomiting instead. This entails clean up on aisle 9 which is usually less fun in the middle of the night than a quick suction - unless the quick suction happens repeatedly hour after hour (like the last two nights). Then she doesn't even bother turning of the light finding it's easier to just pretend to sleep for a few minutes without the eye strain of a light going on and off.

As she merges onto the much busier Interstate 17, she begins to wonder how many other people are speeding along with her in a sleep deprived stupor. Many people probably prop their eyes open with a couple cups of coffee, however, she has never been able to acquire the habit of drinking bitter dirt. (But add sugar, fat, and ice to that dirt and she can drink it all day, but then she would be drinking meals. She does have the occasional "latte" - 2% milk with a couple spoonfuls of instant coffee and sweeteners to try to wake her up, but this usually only happens when her husband is home to make it for her. Yes, she doesn't like coffee that much and/or she is super lazy...

Swallow Study Fail

She is fully aware that she is driving with her big toe. Left, right, left, right. Slight pressure on the gas, slight pressure on the brake. Walls close in around her as two 18 wheelers flank her lane. She inches forward, grey pavement slowly crawling under her car.

They are now officially late for the baby's swallow study at the children's hospital. A normally hour long drive has taken an hour and a quarter so far with another half hour left according to the GPS. Highway 10 is apparently a big attraction this day after Labor Day. Everyone wants to experience it.

As they pull into the handicap spot in the parking garage, her mind frantically runs through the list of things she needs to grab in order get to the appointment 30 minutes late. Insurance cards, suction machine, diapers and wipes - just in case. The baby is remarkably calm and seems to sense he is about to go for a ride.

He almost leans forward when she reaches an arm under his neck and another arm under is legs. He is getting heavy for her. At 3 and half years old, 38" and 30 pounds, he may seem just right in the height to weight department, but hoisting his dead weight, while still doable now, looms ahead as another challenge. If he could just lift his head and/or lean forward, wrap his arms around her neck - anything. She hopes for and will take anything.

They rush into the hospital, up to the check-in desk, then around the corner to another registration desk, and then on to the final imaging desk. Three desks. At the third one, the baby has a seizure, gets his arm band identity bracelet, and gets ushered to another waiting room. They are told they would have to be squeezed in due to the late check-in. She silently and sarcastically thanks Highway 10 traffic and watches the Duggers on the little TV in the corner.

As the Duggers arrived in China, one of the staff calls the baby's name, and she proceeds to wheel him into the imaging room. As the arm band, name and birthday are checked, she is asked to place his 30 pounds in the Tumble Forms feeding chair which is conveniently located at almost shoulder level.

The chair only has a lap belt. No chest support, no shoulder strap, and nothing to support his head. He slumps in the chair and his head slips and bangs on the radiation machine. They had her place one hand on his chest for support and another hand on top of his head to keep it steady and facing in the right direction. His shoulders inch forward, his heavy head tilts back.

Needless to say after one spoonful of the pudding thickness, he failed the test. A large portion of the  bolus had dropped straight into his esophagus, but a small portion slipped into his airway. The back of his mouth and throat showed no signs of trying to control anything. Within 2 minutes, the staff shutdown the study and sent them on their way.

She drove up to the preschool and turned of the ignition. Staring straight ahead, exhausted from getting up early and the stressful morning drive, she wills herself to stay tough. She will not crumble today. She will not give up today.

She forces herself to accept the silver lining, that the result of the study gives clarity to a crossroads they had come to in his treatment. She now knows they will back off from the possibility of feeding by mouth and focus on the emerging and immediate need to get his increasing seizures under control. Hopefully, he will qualify for a treatment called a Ketogenic Diet. Hopefully. Because without hope...

She sighs.

I Don't Want to Heal

Imposter.
I don't know who I am right now.
Am I just going through the motions of healing, or am I really healing?
And healing from what?
Healing from the fact that I don't want to follow the rules all the time?

This life is too long.
I still occasionally feel trapped.
I still occasionally feel like running.
I've lost privacy and time to be alone for sure.
Going through the motions.

I'm definitely trying to do what those who counsel me are telling me to do.
And I'm good at it too, I think.
My family seems happy when I appear happy.
And I think I'm happy at times.
Especially when I'm busy.

But I can't tell if it's working.
I still feel a sense of loss.
It creeps up now and then.
I don't even know that I've lost anything really.
Just feel like I did.

Can I constantly stay busy so that I never have time for reflective internal thoughts?
That's probably the safest thing for me.
Stay distracted so that I don't have time to think about what I want, or what I feel.
I want to go on a Sabbatical.
I just want a break.

Some time off.
I want to hide out in a cabin alone in the woods.
I want to hide in a closet like I did as a kid.
Or under my bed.
It was safe in those places.

No one could see me.
I could be alone with my thoughts.
I could be sad and cry if I wanted to, and no one would be around questioning why.
I don't want to have to give a status report of how I feel emotionally, physically or spiritually. Because if I were truthful, it would cause disappointment.

And I don't like to disappoint.
It's a daily test of my will power not to disappoint.
I'm a mess.
Sorry family.

Jealous For Me

I don't understand why I fight back and resist except to think that my heart and mind are so tormented that they would prefer to stay that way. God has been pursuing me vigorously this past month through my husband, pastor, family, and friends. They keep pursuing, loving, pleading. And yet I still keep pushing back, running and hiding.

One of my favorite songs is "How He Loves", especially the Kim Walker version:

He is jealous for me, loves like a hurricane, I am a tree
Bending beneath the weight of His wind and mercy
When all of a sudden I am unaware of these afflictions
Eclipsed by glory and I realize just how beautiful You are
And how great Your affections are for me

I used to think it was just the way the song builds, the increase of emotion and volume. Then one day I tuned in to the words "afflictions eclipsed by glory", and I thought THAT'S what it was. My deep desire to not feel and dwell in my afflictions - to have them ECLIPSED, to not see them, to rise above them, to have them hidden from me. It doesn't mean they are necessarily gone, but they would be shielded or blocked out by my recognition of God's glory. How I wanted to experience this, and still do.

And now I have experienced another dimension to the song. The words "He is jealous for me". That is what I have felt overwhelmingly this week as everyone seems intent and relentless in their attempt to rescue me from myself. But I don't know if I want to be rescued. That's the battle in my mind right now. I am so loved that God feels I'm worth pursuing, yet I'm so selfish, I still want to run.

loves like a hurricane, I am a tree Bending beneath the weight of His wind

Part of the reason for wanting to hide is that I was called out on the sin in my mind and eventually felt compelled to confess and be honest about some of my yuckiest secrets to the one person it would hurt the most. 'The weight of His wind' was the most horrible experience ever. I've never felt such pain and embarrassment, yet at the time I experienced a glimpse of the elusive freedom. The weird relief from being allowed to vomit it up - damn the consequences. And I expected the worst consequences. But instead I was extended a deluge of grace, mercy and forgiveness - from a human - who is also jealous for me.

Bending beneath the weight of His...mercy

And we are His portion and He is our prize
Drawn to redemption by the grace in His eyes
If His grace is an ocean, we're all sinking
And heaven meets earth like an unforeseen kiss
And my heart turns violently inside of my chest
I don't have time to maintain these regrets
When I think about the way

He Loves Us 

So why does regret almost seem to be setting in? How could I have let my wall down after all these years and admitted this stuff? Was I "drawn to redemption" and am I sinking in "an ocean of grace"? I feel out of breath from the overturning of my life this week. The painful honesty and confessions that have been asked of me, and are still being asked of me. I feel under the microscope. I feel like a bug. I want to crawl back into the hole.

For the Lord your God is a consuming fire, a jealous God. Deuteronomy 4:24

Lord, I am a spoiled child wanting my own way. But I don't know if I want to change. I'm scared to ask you to help me because it might hurt. 

Emotions vs. Reality

I hate my sad, angry, fearful emotions. They deceive me and testify against me. My circumstances are not even a factor when they decide to erupt. They play upon my weaknesses, my mind, my heart.

What I felt yesterday was genuine. And real. Yet not real. Sometimes I wonder what reality is.

The Raging Battle

So here I am again. Full circle of emotions.

I often wonder if my life from the outside looks relatively perfect. I have the perfect husband, provider, always attentive, always trying to meet my needs, an awesome father to my children. I have wonderful children, on their way to independence, believing that there are no limits to doing what they want to do, faith in the good in this world, trusting God. My youngest child, while engulfed in multiple disabilities, is loved, cared for, supported by family, friends, and strangers, and appears content and happy. I have a life I believe people might envy.

Yet.

My heart and mind rage a battle against me. I'm currently tormented by feelings of suffocation, being controlled by others, wanting to run, wanting out. Conforming to rules, the resentment, the fear of losing what I have vs. the desire to chuck it all. The freedom I long for seems out of my reach again. My soul screams while I smile and go through the motions, afraid of hurting my family or friends if I accidentally give myself away by a look or an action unfiltered.

I miss lightheartedness. I miss happiness. I miss joy. I've had them at times which is why I can miss them, they seem forever fleeting, always teasing me that I have found them again, only to disappear into the night. I feel guilt when my beautiful family surrounds me with all the good they have to offer, and I want to run away to breathe. I don't understand my thoughts, why they take me to dark places. I hurt, but I don't want to inflict hurt, and yet I do anyway, because I hurt and can't explain it or lay blame. So others assume the blame. And then they hurt.

I feel life is a cruel joke sometimes. I've prayed. I've yearned. I've longed for. I don't understand the will power people have to keep going when faced with adversity. It is not my nature. I hide. I cry. I flee. I want escape.

So the battle rages. Because I won't leave. I won't run. I won't ditch security. I have always clung to logic and reason in the end. But my stomach will churn. My head will ache. My body will feel restrictions. My smile will be forced.

Until the next stalemate. The lull in the battle. When my soul has rest.

Hear my prayer, Lord;
    let my cry for help come to you.
Do not hide your face from me
    when I am in distress.
Turn your ear to me;
    when I call, answer me quickly.

Psalm 102:1-2

The Third Day

The air is brisk, the sun warm. Under a short scraggly tree providing speckled sunlight, she sits at a brown metal picnic table at what she would describe as a community park. It has the feel of a neighborhood park since the open play area is not that big, but the sign says there is an aquatic center so the building must house the rest.

She takes a sip of her McDonald’s coke and looks up to see why a kid is crying, the mother tugging on his arm dragging him towards the play equipment.

Wow. She actually did it. It’s the third day of driving him to preschool, but she hadn’t left him alone there for more than an hour or so yet. Today, however, she dropped off her medically complex, special needs 3 year old at the Foundation for Blind Children and drove away…well, after an hour and 2 trips back and forth to the car because she forgot to tell them just one more thing. But then she finally started the car and backed out of the parking space.

The world has changed; its weight feels lighter. A few hours of freedom linger on the horizon within grasp while loving trained people are teaching and caring for her son. He was smiling when she left. He has the best smile.