A Heart Cries Out

She can feel the heat rise into her face and her eyes grow hot with moisture. Her nose suddenly feels warm and the edges of her mouth turn down on their own, quivering as she fights against the oncoming tears, bursting into sobs. Balling up her fists, she pounds the mattress, kicking and screaming. Her dark wavy hair spills across the pillow as she buries her face trying to muffle the sounds. Her heart feels like its going to explode. She wishes it would.

She deprives herself of oxygen as she smothers her cries in the pillow, her breathing slowing and getting deeper. She begins to calm and imagines herself suffocating. But her body won't let her. At the last second, her head turns and she gulps in deep breaths of the cool room air.

A two year old's tantrum performed by a 43 year old on and off for the past seven years.

And now she's tired - tired of fighting with God, tired of questioning, tired of analyzing. She's reached a cross roads of sorts. She's either going to back down and embrace the faith of her youth, no questions asked, or she's going to have to chuck it all. She can't keep saying she believes something and then turn around and constantly question what she says she believes.

She wants assurance, truth, and freedom.

She craves rest, purpose, and fulfillment.

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The overwhelming tiredness began about seven years ago when life really began to get real. All of a sudden life didn't seem mundane or easy anymore, it began to get hard: medical emergencies, surgeries, illnesses, and death. Bad news after bad news. She realized her life was not "blessed" anymore in the manner she thought she understood being "blessed".

During this time she gave in to her emotions as they seemed to be her reality. She started reevaluating everything she had believed, having a crisis of faith over and over again.

She got on and off antidepressants.

In the beginning, she would get long periods of respite where she thought she had it all back under control and was living peacefully again, "blessed" again. Then something else would happen, and over time, she would get glimpses of what she perceived to be the end of the quest only to be driven back when shaken. Every time she thought she got her beliefs sorted out, something else would happen to her, to someone else, or just in the world in general that caused another emotional upset and the questioning would start all over.

She spent hours praying and searching the Bible for answers, listening to podcasts on every conceivable spiritual subject, questioning and being mad and distrustful of God. She looked outside her faith at times, querying those who were not "believers", and imagined what it would be like not to live under or have to abide by, what she perceived as, "all the rules", really just asking the question, "What's' the point?".

During the most intense crying binges and moments of despair, her emotions convinced her that she truly wanted to end things (even though she didn't think she would ever have the guts to actually do anything about it). She played with the idea, got comfortable with the thoughts, considered what her kid's lives might be without her.

The thoughts of the kids struggling because of her actions were probably the best deterrent.

She got counseling, she read books, she listened to more unsolicited advice than she ever asked for or wanted. She wasn't asking for anyone to fix her, but she knew she didn't want to experience this anymore, this wallowing in self pity, begging for relief, constantly considering an escape.

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Off to her right in her peripheral vision, He sits in darkness surrounded by a red glow. She can't see His face, and she doesn't want to. Vaguely she senses His throne; His feet and robes shadowed in a black and red haze. These are not the colors she would have associated with Him, but they are the colors He is using to reveal Himself to her now. Every now and then she wonders if she should turn and try to look at Him, seek His face, but she can't bring herself to give up what she currently has which feels like the shelter of anonymity.

She just couldn't live the way she was living anymore  - without joy, always anxious, relentlessly questioning, miserable. Something had to give. She needed to choose between going all in or just walking away, and since walking away would entail continuing the exhausting search for something unknown, she chose what has now become the path of least resistance; she's just too tired to search anymore. She has made what she hopes to be, a life changing decision. She has decided she is not going to question or fight anymore. She threw in the proverbial towel and surrendered her soul again to this Person sitting in a fog on a throne whom she realizes now she doesn't know very well after all. Her ideas about being "blessed" and assumptions about His role in her life will need to be redefined.

He has given her a strange tool to deal with the emotions that attack her periodically, the emotions that flare up when something goes wrong, or someone says something that sort of pricks her ears and offends her, or when random questioning thoughts pop up in her mind for no reason.

This tool might be considered more in line with an image. When these annoying things occur, she immediately, if she is paying attention, pushes them to the right of her vision at the feet of this Person on the throne. These things appeared as boxes. But as she kept pushing them to her side, she could sense them stacking up higher and higher. She began to fear they might eventually come tumbling down on top of her, burying her with a renewed sense of despair.

During one of these fearful visions of being buried by things that she was trying to overcome, a dark small hole formed in the ground and the boxes began dropping one by one into the hole until they disappeared. The relief that accompanied this minor revision to the image was huge, and over time this small hole became a chasm that was large enough to swallow all of her problems.

She wondered at one point why this image was off to the side instead of in front of her. But as she looked ahead and didn't focus on her peripheral vision, she realized that the path in front of her was wide and open, light blue with sunshine overhead, a rainbowy peaceful aura hovering in the distance. She could freely advance forward without the sight of the burdens or chasm in her way.

-------------------------------------------

The night feels unusually dark and quiet. Awake and unable to sleep, she lies alone on the couch in the living room. Creeping out of the corners of her mind, the old emotions and thoughts try to revisit. Her mind is instantly on alert, fearful they are going to overwhelm her. She begins to struggle with them, fighting to keep the vision alive which she was given to deal with these types of attacks.

The emotions evolve into a large steel heavy mass in front of her. She can't move it! She pushes with all her might trying to shove it into the chasm. Finally, in desperation, she cries out for help!

All of a sudden the mass changes form and becomes round like a wrecking ball. Although remaining steel and heavy, if she really puts her shoulder and body into it, she can get it to budge. It gradually starts moving and rolling towards the large hole. The movement is loud and grating, but she finally pushes it in!

As it falls, she realizes the colors around the throne have changed from the eerie black and red to a bland beige. The haze is gone; shapes are sharper. While she still refrains from looking into His face, she senses that He is not as hidden as before...

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.

Reasons Not to 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.

Another Baby {Choosing Life: Chapter 1}

{Choosing Life: Preface Part 2}

November 2009

She didn't know for sure why after eight years she thought she wanted another baby, but the thought had crossed her mind numerous times over the past year. There were many things different now than when they had kids before. She wasn’t working. And she was getting bored. She knew her husband would be for it.  And her two boys were always saying they would love more siblings. So why not?

At 39, she went for her yearly “check up”, and her nurse midwife said something like, "If you are thinking about it, do it now before you are 40.  The odds of something going wrong go up so much after 40."

“Oh my gosh, I’m running out of time!" Plus, she thought, she could do so many things differently this time.

For one thing, they might have a girl! And she wouldn’t be working, so she could spend all that extra time taking her baby on walks, reading to her, teaching her all those extra things her other kids didn’t know before kindergarten. It would almost be like having an only child. They could be joined at the hip. She would do all the things she either didn’t do right or allow herself do with the other kids. She would feed on demand. She would nurse until the baby girl bit her. She would hold her as long as she wanted to. She would rock her until she fell asleep. She would get one of those wraps that holds the baby next to the mother all day long....

{Choosing Life: Chapter 2}

Whispers and Whistles

She literally thought she could just skip past the holidays as if they were just another day this year - as in - not participate. Thanksgiving came and went. She’d made a turkey and had family over, but, in a way, it was just another meal. She didn’t decorate. She didn’t make homemade rolls. She didn’t make homemade pies.

Everything is different this year. She now lives in a different state, in a different house, with a different climate, goes to a different church and has different friends. She and her husband relocated their whole life in hopes of more healthcare options for “the baby” as well as the hope of extra help from relatives living close by.

Shedding and falling apart, their tried and true Christmas tree didn’t make the cut during the move. All they had left of their Christmases past were old decorations, collections of photographs and fading memories. And now, she just didn’t feel like creating new traditions or decorating a new tree. This is not her home. This is not her real life. So when her husband insisted after Thanksgiving that she put up a Christmas tree, her heart balked at his request.

Just over three years ago during a routine ultrasound, they found out their anticipated third child had severe brain damage later described as a Dandy Walker Malformation as well as numerous physical anomalies. They were given the worst case scenario. First they were told he wouldn’t live to be born, but if he somehow survived birth, he would only live for minutes, hours or days. They were encouraged to abort. However, unable to murder their own child, they proceeded with the pregnancy encompassed by prayers of family, friends and even strangers.

At the time of his birth, they only stipulated that he would not be put on a breathing machine. If his brain and lungs didn’t want to work, then they would accept the outcome.

But he breathed. A shallow whisper, a wheezing whistle, the breath of life.

Thus began her journey as a “special needs mom to a medically complex child.”  A club she’s hated and resented being in. A club no one ever wants to join. And somehow, here she is, almost three years later, still in the club. While getting easier to accept, she wouldn’t wish it for anyone. But she also wouldn’t go back and kill her child to avoid membership. So everyday she feeds him through a g-tube inserted into a hole in his stomach, monitors his shunt placed for hydrocephaly, gives him medications for seizures and reflux, transfers his level 5 CP body from beds to baths to floors to wheelchairs, and drives him all over the city for therapies and doctor appointments.

Life has been an adjustment. She’d hit some lows this past year, really questioned everything. EVERYTHING. But finally, while everyday is challenging, it's not as upsetting. And while hard at times, she was trying not to question anything or wish for anything to be different and just live.

They go to Home Depot. She picks out the least expensive tree she can tolerate. It isn’t perfect, but at least they have a Christmas tree to satisfy her husband. Preloaded with lights, all she has to do is assemble and plug it in. She thinks she is done until her husband informs her he expects it to be decorated. She finds three boxes that are marked Christmas and forces herself to hang the old ornaments. It takes her all day not excluding a few tears as many ornaments remind her of a simpler life before “the baby”.

When she finishes, she realizes she doesn’t have an ornament with the baby’s name on it. Somehow he hadn’t made it into the life they once had; traditions had been put on hold; time had stopped. She starts to feel sad about this until, for some reason, the discovery gives her an idea. Beginning as a shallow whisper, a wheezing whistle, a tiny breath, she begins to feel more excited about the season.

Shopping for an ornament means she has something to look forward to, something to add this Christmas that will symbolize their new life here in this new place, something that could tie them to this house and help it become a home, something that would become part of new traditions, and something that would include their precious little boy miraculously approaching his third birthday.

(Originally written as a guest post at bethmorey.com, now sheofthewild.com)

Epic Fails

What do you do when you can't seem to get anything right the first time anymore? I feel like I'm having too many FAILS these days and keep having to go back and redo and correct things. I thrive on being successful at things. I won't usually attempt if I think I might fail. And now the things I'm normally confident in doing are failing. Nothing is within my control. What's wrong with me?

Elusive Freedom

What do you do when you look around and see other people living out what you thought you would be doing by now?

What do you do when you realize you might not be as interesting or talented as you once thought?

What do you do when you keep thinking eventually things are going to change and they never do?

How can you feel alone when you are surrounded by family and friends?

I have no idea.
I'm feeling very unsuccessful today.
I feel lost. And sad. And alone.
And uninspiring. I think I once wanted to be inspiring.
I don't know what I want anymore.
Maybe nothing.

What would happen if I didn't pursue or yearn for anything?

Would that be the elusive freedom?

A Breakthrough In Group

I've decided to post this here as a reminder to myself, a sort of looking back, building an alter, and thanking God for a past deliverance. A meeting with my pastor was set up by my husband after he witnessed a day of despair in me where I spoke openly of giving up, not that I think I would ever actually do anything more drastic than talk, but apparently enough that he felt I needed more help than he could give me. This is the email I wrote my pastor several days later:

"I've been wanting to share with you something that came from our meeting. It was a very exciting "revelation" for me, if you will (or as I've been calling it "a break through in group"), and I shared it with my husband after a couple days thinking about it, also telling him I was going to email you too. I wanted to write my thoughts down to document them as well as let y'all be involved in reminding me because I know Satan will try to get me to forget and go back to my old way of thinking. However I kept putting off writing, and now I'm starting to have to fight to remember. The old voice in my mind, and unfortunately, [a family member's] voice are still strong and continue to try to convince me otherwise.

What I found so freeing (literally, in a mountain top high kind of way) came from our discussion about our personalities, and being reminded that I had always identified most with the melancholy trait. However, I had always thought of it as the negative trait (as I think society does too since it tries to medicate everyone who feels deeply), and I have wished, prayed, and tried hard to be one of the others. 

But then you pointed out that David and Moses had melancholy personality traits, and I've been mulling that over ever since (I really don't remember much else that we talked about that day). If God loved David and Moses and was able to use them despite the melancholy trait then perhaps that trait is not a curse after all. Unfortunately, I have been told and the seeds have been planted since I was a kid that "depression runs in our family" and "I pray you don't get it" and "you'll probably need antidepressants like I did" and "I hope your kids don't get this". I have believed that the deep sadness and/or angry emotions I feel over circumstances and injustices is wrong and is a sickness. But now, I believe that God is revealing to me that that is a lie (and yes, I'm almost crying as I write this b/c it saddens me so much that I have spent so much of my life listening to these curses whispered in my ear). He made me this way, and it is a blessing and a gift, not a curse. If I were to write poetry right now, Psalm 18 (specifically the Message version) would sum it up.

So there you go. You may have had a totally different direction you thought you were leading me, and there is probably more to be gleaned from future discussions, but I believe the Holy Spirit led you, whether consciously or unconsciously, to say those things to me. So, thank you."

"The hangman’s noose was tight at my throat;
    devil waters rushed over me.
Hell’s ropes cinched me tight;
    death traps barred every exit.
A hostile world! I call to God,
    I cry to God to help me.
From his palace he hears my call;
    my cry brings me right into his presence—
    a private audience!" Psalm 18:4-6 (MSG)

Queasy

Her stomach keeps doing flip flops. Since last week's decision, they've made an offer on a house and have signed a contract. Next week will be the inspection and appraisal. They've spoken with a realtor and will be putting their current house on the market soon. Things are moving so fast now. She's excited and scared at the same time, making her stomach queasy.

She felt the same when 21 years ago, she and her husband decided to go ahead and get married within a few months of getting engaged instead of waiting three to four years until they graduated from college. She remembers lying on her a parent's living room carpet, listening as her parents and future husband discussed the possibility of not postponing the inevitable.

The waves come and go. The panic is kept at bay if she keeps busy, taking the steps necessary to accomplish the final goal. Or when she sleeps. But it floods over her when she just stops to rest or lets her mind dwell on the seemingly overwhelming task of getting everything done.

Sleep

Lying down the weight of the world sinks into the mattress.

Heavy. Release.

Her eyes close as images from light fade into darkness, her mind still yammering.

Escape. Disappear.

One thought over another overlap in a complex myriad of consciousness.

Constant. Noise.

She pulls a blanket over her body as her temperature begins to drop.

Warmth. Softness.

The blessed numbing fog begins to wash over her as her inner voice fights for one last word.

Shhh. Sleep.

A Winter Morning

It's completely quiet now. She has turned off the sound machine and the ceiling fan. The room is gray with the morning winter light. She stands over his crib watching him sleep, waiting for him to wake. 

His breathing sounds fairly clear, just hints of something that might need to be suctioned. Every now and then his arm jerks up to his face and hits his mouth or nose. She wonders if he is intentionally trying to touch his face and yet failing because of his lack of muscle control.

It's been two years now. Two years since her life and the life of her family changed forever. This baby, yes, they still call him "the baby", born with a Dandy Walker Malformation, undiagnosed as to the reason why, is still alive. His mother tries not to think back to the past, a time before g-tubes and shunts, doctor visits and therapies, risk of aspiration and pneumonia. A time before the baby. But unfortunately her mind often goes there anyway. She is getting better at not doing that, working towards living in the present, but finds it challenging.

He stirs in his crib, little moans and stretches, sounds of waking. The arm spastically hits his face repeatedly now as he tries to move around. She goes to his side and gently lifts off each blanket one by one. He looks at her and tries to focus his grey-blue eyes.

"Good morning, good morning, doot doot doot doot doot...", she sings. Their morning ritual begins.