Sunday, December 27, 2015

The Family Photo Shoot

We hadn't had a family photo professionally taken since the day Austin was born. A photo taken huddled in a hospital bed because it was assumed it would be our one and only chance. Since then, I have not made an effort to coordinate a family photo. It just seemed too daunting to find a photographer, set a date I could predict that everyone would be home and in a good mood, and select outfits that matched. It also doesn't help that I'm lazy and a professional procrastinator.

However around 2:00 p.m. on a sunny Sunday after Thanksgiving this year, we found ourselves cruising down Sun Valley Parkway, making a U-turn, pulling off onto the shoulder, and parking behind my brother's borrowed pickup truck. In the back of the truck was a large leather couch he and his wife had gotten on loan for this family photo shoot.

In the desert.

It was a cute idea, and when someone else has a cute idea, does all the work and planning, and invites me along, I'm there.

Originally, I figured I'd have all our outfits planned and picked out ahead of time. I figured I would have time to fix my hair and makeup just so. I figured my kids skin would miraculously be clear from teenage breakouts. I figured everyone would be cooperative and do exactly as I asked them. However, what I expect and think I want to happen rarely is what actually happens.

I remember not feeling 100% that morning before church, and so I slept in a bit. I remember running around panicking, trying to find clothes that somehow coordinated thinking we would all just wear them to church. I remember realizing that my hair needed to be washed, and I didn't have time to dry and fix it. I remember wanting to just cancel the whole thing because mine and my teenagers' attitudes were moody. I remember no one wanted to wear what I picked out. I remember everything seemed to be going exactly opposite of how I had pictured.

I eventually gave up on the "perfection" for the moment, and let everyone just wear what they wanted to church. I quickly ran the curling iron through my hair at the last minute.

After church and the rush of the morning, I almost forgot that we were meeting at 2:00. I had already envisioned a nice nap for the afternoon. So, when I realized I really did need to get people to change their clothes and out the door looking presentable, I almost cancelled again.

But somehow we managed. We arrived on time, dressed in somewhat coordinating clothes if jeans and random blues, greens, greys, and beiges count. We had shirts with stripes, patterns, plaids, and bold words across them. It was not a designer collection by any means.

Once we arrived on the side of the road, everyone started piling out of the cars except me and Austin. It was cold and windy out so we hung back until the last minute.

Transferring the couch from the truck bed to the desert location did not go without a hitch, of course. My husband, sons, and brother began the arduous process of unloading the heavy couch and carrying it to an appropriate desert-y location with mountains and cactus in the background chosen by the photographer and my sister-in-law. Unfortunately for the boys, this entailed lifting it over a couple of barbed wire fences. Fortunately for the girls, they were well trained to do what their women wanted them to do. My nieces and nephews carried the cushions.

Someone drove by and saw us unloading the couch and must have assumed we all got dressed up and brought our kids and a photographer to commemorate a desert-couch-dumping event. Within minutes of our arrival, we were also joined by a lone police officer asking us what we were up to. After taking a copy of my husband's driver's license, we must have alleviated his concerns because he kind of sadly laughed at us before jumping back into his vehicle and speeding away. Or he figured if he found a couch out there later, he'd know where to find us. I thought it was also kind of interesting that my brother conveniently didn't have his ID with him.

Once the couch was placed, my husband came back for me and Austin. We loaded him into his jogging stroller, and pushed and carried it over near the couch. He was the only one with a blanket, lucky booger.

The sun was bright and low and casting dark shadows here and there. We spent about an hour or two getting photos of each family, the kids by themselves, all the cousins together, etc. The kids were all being silly and running around, the photographer was friendly and fun, and the wind whipped our hair. I was actually glad I hadn't spent much time on it.

It was not a picture perfect day like I envisioned. However, it was a fun day. My sister-in-law informed me that because of the conditions, the photographer was offering another photo shoot for free at a different location and a different time of the day. The photographer confirmed the offer when the she delivered our photo CD a week later apologizing about the lighting in the photos. I was sufficiently prepared to be disappointed, and a bit distraught about needing to corral my family again.

I loaded the CD onto my laptop and began scrolling through the photos. At first, I was like, yeah, I see what they mean. There were dark areas and washed out areas in some of the photos. The glare of the low sun caused the lighting to not be balanced. Details and colors were lost in the shadows here and there or overexposed in other places. At first I thought, yeah, maybe they could be better.

But I kept looking at them. And yes, maybe this batch of photos were not gallery perfect, and we were not model subjects. However, they captured a moment in time that included lots of memories of that day spent with family, a cop showing up, hurdling barbed wire. The more I looked at them, the more I didn't want them to be different, changed, or replaced. They were, instead, perfectly editorial.

In some photos the kids were smiling and laughing. But in some a couple of us looked uncomfortable. Austin was happy and supported in his brace. And then he wasn't. Patrick and I were trying not to be swallowed up by the couch, our knees almost as high as our chins. But, we were all together in one place, in one photo, making it work.

Just like our life.

Sometimes life's difficult events seem so daunting that I want to call in and cancel. But even though life circumstances may not go just how I envision, the hard times always end up endurable at the worst and surmountable at best. They may not be gallery-worthy and something pretty to look at, but they are definitely editorial and worth remembering.

Tuesday, December 8, 2015

A Summer Respite {Choosing Life: Chapter 4}

July 7 - September 6, 2010

Facebook status, July 12, 2010: “tent-check, sleeping bags-check, tub-o-camping stuff-check, bag of sunscreen, insect repellant, bear spray and first aid kit-check, fear of having to pee in the middle of the night in bear country-check…”

Facebook status, July 19: “dang. my loosest pair of shorts are starting to feel tight. at least my tennis skorts stretch and my skirts can ride high on my waist. i have one pair of jeans I can still wear...putting off buying maternity clothes!”

Facebook status, July 30: “I was giving directions to Patrick and Michael on moving the furniture around in the basement, and Patrick leans over to Michael and whispers 'Nesting...,' all-knowingly.”

Facebook status, August 10: “Happy 19th!!! 19 years of marriage and still barefoot and pregnant! You are amazing…” (posted by Patrick)

Facebook status, August 18: “Wearing my first pair of maternity cropped jeans in 8 years today.”

Facebook status, August 24: “on a pregant emotional rollercoaster today...Weeeeee!”

Facebook status, September 4: "Already had get up to pee and it s only 3 minutes into the game."

That summer she spent her third pregnancy doing all the things she would normally do with her family with the added bonus of anticipating a new member.

They tent camped twice, once to Yellowstone National Park and once locally to Salmon Lake. They hiked and played a little tennis. She did some gardening amongst snakes and yellow jackets and got her fried okra "fix" at Cracker Barrel. By September, they'd even attended the first Grizzly home game for the season, one of the few with perfect football weather, aqua skies, a few clouds, and crisp air.

Although occasionally emotional from hormones, life that summer appeared all rainbows and butterflies. Sunsets glowed sunset-ier, roses smelled rosier, and blue skies reflected, of course, blue-ier.

Wednesday, November 4, 2015

What I Want Parents To Know

Dear Parents,

I’ve finally decided to put in the effort to take Austin to Sunday morning children’s church. I’ve tried in the past on and off, and either his medical issues were too much to deal with, or I couldn’t deal emotionally with seeing the differences in my kid and your more typical kids. However, I feel that now is the time, that he is ready whether I am or not.

After checking in last Sunday, I pushed Austin’s wheel chair into the dimly lit room where they hold the large group portion of children’s church. The kids in his age group, consisting of 3’s, 4’s, and 5’s as well as kindergarteners, filled the first two rows of chairs. I maneuvered him down the outside aisle and parked him next to a little girl. She immediately looked at Austin, frowned with fear or uncertainty in her eyes and shrank as far as she could in her chair away from him.

My immediate response was to choke back a sob and will away tears.

I smiled at her.

She did not smile back and would not look at Austin. I turned my eyes towards the teacher and pretended to listen until I regained my composure. Then I noticed a couple of boys and girls in the row ahead of us that kept glancing back. One boy in particular could not take his eyes off Austin.

He stared hard, drank Austin in, his curiosity unabashed.

And I loved him for it.

I’ve found if I witness staring, instead of eyeing the child (or adult) sternly with that look that says, “don’t you dare hurt my boy, don’t stare at him funny, don’t point out his differences, don’t ask any questions,” but instead assume the best and invite that person to satisfy their curiosity, to ask any questions (including those that force me to be tolerant of what would normally be considered rude), to stare at Austin, to take in all his differences, to not feel like being curious is wrong, that child (or adult) will not be afraid of Austin next time they see him. That child will be the first to smile at Austin and greet him. And that child has the potential to become Austin’s biggest ally and friend.

However, the little girl, if not given an opportunity to indulge her curiosity, will probably remain afraid of what she perceives as different. She has probably been taught not to stare or acknowledge differences, that doing so would be offensive or rude. So without permission to overcome her curiosity or fear, she will instead avoid contact.

I feel sad for that little girl because... I am that little girl.

Our society has advocated (with good intentions) for so long that we be politically correct so as to not offend someone, even inadvertently, that I have become fearful if someone seems different from me. I avoid eye contact. I shrink back. I glance, realize there is a difference, and look away as quickly as possible pretending no difference exists.

But I’m curious. I want to absorb their difference. I want to stare. I want to ask questions. I could become their new best friend. But I live in so much fear of offending them that I will not even acknowledge their existence except maybe with a brief smile before I look (and walk/run) away. Out of my desire not to hurt them because I fear I don’t know all the politically correct rules, I will avoid them.

And I don’t want people to avoid Austin. I don’t want them to escape his presence as quickly as possible. I don’t want them so afraid of offending him (or me) that they won’t even acknowledge him. And I don’t want to teach him to be hypersensitive and easily offended (like I can be in regard to myself or on his behalf). I don’t want him to live in fear like I do.

I want kids to see his smile when they engage him. I want them to know him, including all his challenges. I want them to love him in spite of the wheel chair, g-tube, AFO’s, hip orthotic, lack of words, spastic movements, or whatever other differences they perceive. I want those barriers to be acknowledged, called out, and invited to talk about. I want him to love who he is and be okay with discussing his challenges with other people (even if his mom is doing it for him).

So parents, please tell your kids to stare at Austin.
Tell them to ask us questions.
Tell them to be curious.

And I promise to welcome your kids to Austin’s side.
I promise to answer their questions with as much grace as I can muster.
And I promise to love them like I want them to love Austin.


A Recovering-From-Being-Easily-Offended Special Needs Mom

Tuesday, October 27, 2015

Choosing Life is Hard and Inconvenient {Part 3}

After I wrote the last post on choosing life, I left off with this question:

Since choosing life is hard and inconvenient, is it worth it?

My only frame of reference for this question is what I've personally experienced or experiences I've read about. Unfortunately, I read about these experiences daily because of the Facebook support groups I'm in, as well as articles that friend's post that I assume since they deem it important enough to pass along, it might be worth my attention.

I know I can choose to look the other way when stuff pops up in my newsfeed, and I did for a long time. Unless I was actively searching for stories of hope, I had turned off all notifications from any group that might make me have to contemplate hard stuff beyond what I was already dealing with. I tried to quickly scroll past any shared link that looked like it might touch on difficult illnesses or disabilities. I didn't need other people's stories. I was already living my own.

So in considering decisions to continue to choose life after birth and if it's worth it, my conclusion is...yes and no.

I include "no" because sometimes I just wish I didn't have to choose life. Sometimes it really doesn't seem worth it. I worry that my choosing life for my son has caused him to experience more suffering than what what a typical kid would experience, and I feel guilt about that. Also, as I've mentioned in the previous posts, I selfishly don't like to be inconvenienced and taking care of Austin is hard, and exhausting, and emotionally draining, etc. In fact, I thought about having a nice pity party here and listing all the things I don't like about caring for a medically complex child (I could call it "47 Things I Don't Like About Caring For A Medically Complex Child", and it would be republished by Huffington Post), but if you follow his Facebook page, you probably know the gist of what those things are.

When Austin turned 3 years old, I finally felt able to write the following. It probably best sums up the "yes" answer to the "worth it" question:

Dear Austin, 
Today as we celebrate your 3rd birthday, I marvel at what you have overcome to still be with us. I celebrate your beautiful little soul that seems to love and need us. I thank you for being such a fighter so that we can get to know you. And I thank you for being patient as we try to figure out your needs and explore ways to help you be all that God intended you to be. I still pray earnestly that your body will continue to heal and will provide you with more opportunities to communicate, move and interact with your surroundings and the people who love you. I thank God that he gave you to us to be a part of our family. We would not have been complete without you. 
I love you,
Your Mommy.

Even though it only took me one emotional night on the couch to decide not to terminate my pregnancy and choose life, it actually took me three years to get to the point where I could see past my grief and see the value in choosing life beyond his birth. I finally realized that just like I had a soul connection with him when he was in the womb when I could sense and feel his aliveness, I still had a soul connection with him after he was born, and probably even more so then because I could see and experience his aliveness, if only in his eyes. His body may be broken and often seem useless. I may at times hate his body because I have to exert extra energy to care for it, but I now recognize that his soul is what I've actually been entrusted with, and for that reason alone, as long as his soul seems content and happy to be here with us, I have to choose life.

I say "as long as" because there may be a point where his body has to work too hard to sustain his life, that choosing life means choosing interventions that induce or prolong suffering beyond what is typical, or that choosing life becomes a selfish act on our part while he is in the midst of despair with little hope of being happy and content again. I just pray that we will know, if and when the time comes, the point at which we need to back away and let him be.

God help me.
"There are children who rely on the help of others to survive their entire life," Lee observes. "Many people think it is better for them to go to heaven as quickly as possible, because life on earth would be too difficult for them. But God sent them to the earth with disabilities. They're not the unnecessary ones in the world. God sent them to earth with a purpose. Disabled children teach many people, change many people and help people reflect upon themselves, which is why they are the educators of society." Pastor Lee Jong-Rak, The Drop Box

Monday, October 19, 2015

A Public Thank You Note

I felt the onslaught of distressing emotions coming over me so I hurriedly excused myself. I quickly made my way to my hotel room before I ugly cried in front of everyone. A mix of exhaustion, fear, and feelings of uselessness overwhelmed me again, and I don't remember how, but my sister-in-law noticed or was made aware of my quick escape and came knocking on my door. With apprehension and mistrust, I called out to her to come in.

In my mind, my sister-in-law and I were more acquaintances than friends or family. I didn't feel like we had much in common, and had decided ahead of time we probably wouldn't or couldn't be close friends. I excel at making snap judgements like that.

For example, my sister-in-law has incredible style and always looks put together compared to my own disheveled, frumpy look. My sister-in-law has amazingly smooth hair compared to my own unruly, puffy mess. My sister-in-law looks athletic, thin, and tall compared to my own short, squatty stature.  My sister-in-law feels comfortable in heels where I prefer comfort, period. My sister-in-law has a confident, welcoming smile where my smile is often offered along with a fear of encouraging a relationship I don't have an extrovert's energy for.

My sister-in-law has a gift of public speaking; she can speak almost off the cuff, coherently and with authority, in front of large audiences without seeming to need to refer to notes compared to my own emotionally choked, public speaking attempts that force me to have to read what I want to say. My sister-in-law has the gift of hospitality; she can easily welcome strangers into her home for a meal or a place to stay compared to my own selfish desire for privacy and fears of being inconvenienced. My sister-in-law has been called to women's ministry and leadership compared to my own not being sure of what my calling might be and desire, more often than not, to hide behind the scenes.

So as my sister-in-law came through the door, I knew she came not only as a family member or friend, but in the capacity of women's minister with an offer to council and pray with me in my distress. However, my apprehension and mistrust came from feeling like my sister-in-law could not possibly minister to me because my sister-in-law has not had to endure my challenging life experiences. In all my comparisons, I also considered (unfairly) that my sister-in-law's life trials have been easier than mine so I braced myself to feel no comfort whatsoever from her words. How could my sister-in-law possibly understand what I was going through when she had never walked in my shoes?

But my sister-in-law did minister to me. And I know she did it even though she was tired and emotionally spent from the work of the week, too. She entered my room with humility and compassion; she brought encouragement and comfort. She may not have walked in my shoes, but I know she tries to walk daily in the Word, something I have trouble remembering to do and could do better to follow her example. My sister-in-law brought words of Truth that did not need to be learned from life experiences.

That day I felt more than just being my sister-in-law's acquaintance. I felt my sister-in-law's friendship, and more importantly like I had a real sister, a family member, and a mentor in Christ.

Thank you for taking time for me, Mindy. I obviously haven't forgotten. And sorry I'm not good at saying these things in person and instead wrote it publicly. As my brother, your husband, seems to say a lot, "It's easier to just do it now, and ask forgiveness later." (Or something like that!)

P.S. Mindy has her own blog where she writes her thoughts occasionally (, but I would say her real gifts involve teaching, encouraging, and proclaiming scripture to women either one-on-one or in a public speaking format.

Thursday, October 15, 2015

Choosing Life is Hard and Inconvenient {Part 2}

I feel like I can't just leave things like that. Confessing to the world that I am against killing unborn babies? Check. Peace. But admitting I could be on the fence about when to use medical advances to intervene and extend life? Uncheck. Still an unsettled question in my mind. So the next step in the conversation for me is:

As a Christian, when can/should we step away and not play God and allow a person to pass away when their body/brain cannot support life naturally?  (And don't get me wrong. I am all against suffering and totally for using medical interventions to alleviate any pain that accompanies passing.)

After Austin was born and we realized he was breathing on his own, that God did not take him, I sort of naively assumed we had been through the hardest part of the whole choosing life decision. I didn't realize that we would be making choices for him that involved other medical interventions besides being on a ventilator. I didn't realize that choosing life for him now that he was born meant a feeding tube.

I remember the doctors telling us that he would be physically disabled and mentally impaired, but I don't remember them saying that he might not be able to eat on his own and what the consequences would be if that happened. I remember that we discussed with the NICU doctor before he was born that if he breathed on his own, we would like him to be taken care of like any other baby born with problems. However, exactly how that would look was never discussed. And I think that while we were praying for a miracle, we took the ultrasound doctor's word that he wouldn't be born alive, so why discuss what we didn't expect to happen?

It's difficult to look back now and wonder how we got through the pregnancy without discussing all these possibilities, but really, how would we know unless the doctors had laid it all out? Facebook was pretty new to me at the time so I wasn't aware of any "special needs parent" groups where you can go now and ask all these questions. So all my information just came from googling the internet and reading the few blogs of other special needs parents of kids with diagnoses different than my son's. So if I did come across the information, I certainly didn't internalize it. I really trusted we would be taken care of by the doctors, that they would help us along.

So while the first few days after Austin was born are pretty vague in my mind due to my own need for surgery and resulting pain killers, i.e. morphine (another story to be documented in the future), I do remember that the NICU doctor, even after promising during our pre-birth meeting to care for him if he breathed, did not follow through with her promise and relentlessly argued and tried to persuade us to take him home and let him die. (I assume now, she meant on hospice, but I don't ever remember discussing hospice care.)

We had no idea just how actively she was trying to make this happen. For example, instead of being taken to the NICU, he was put in a crib next to me on room air in my hospital room in the orthopedic wing, not even close to being monitored and cared for with all of his potential problems from his brain malformation. So even though he was constantly moaning, and didn't seem to be getting deep breaths, we just assumed he was ok enough to be there. I mean, the doctor and nurses knew what they were doing, right? Who were we to question his care?

One day, I remember my husband telling me that he went to ask about Austin's yellow color, and that someone in the NICU pointed to the bilirubin blanket and said, "You can put that on him if you want." On another day, I remember my husband asking if they were going to feed Austin, and they said something like, "Oh, you want to feed him?" Then they came in with an orange Nasogastric (NG) tube, threaded it through his nose into his stomach and poured in some formula. I don't remember ever asking or being told why they didn't try a bottle first.

Finally, after 3-4 days of almost non-existent care, a NICU nurse came to my exhausted husband in private and told him that if he wanted to give Austin a chance at life, he needed to get him out of this hospital and take him to Seattle Children's. She said the NICU doc was known for getting on a pedestal about how kids like Austin born with disabilities should not continue to live because they are a burden on society.

It became apparent we were not going to get support from this hospital if we were going to choose life for Austin. And because we are Christians, choosing life for our son felt right so I let my husband do what he needed to do to get Austin to a safe place. And really, in my mind, morally, I did not believe we had any other option.

My husband had no idea how bad things were until we tried to transfer him to the children's hospital on the 5th day. The NICU doc refused to say it was medically necessary so my husband had to sign off on the orders promising to pay for the life flight. Then, once the team arrived to transport Austin, they found out that basic blood work and procedures that all babies have done had not been done for my son. They had to delay the flight until all those things could be checked off the list. They also discovered that his O2's were low, and that he should have been on oxygen for the past 5 days since his breathing was shallow. I remember my husband telling me all this later when I wasn't so out of it, and I can still feel the anger I felt towards this doctor for failing to do as she promised.

But almost five years later, and after all I've been through with Austin since then, I can now look back to those days with some understanding (not sure if it's forgiveness or not) in my heart for that NICU doctor. I can now see where she was coming from, how hard and inconvenient choosing life beyond just giving birth can be. So perhaps she actually harbored more compassion in her heart for parents like us than I gave her credit for. Perhaps she could see into our future and anticipate how challenging things would be or the emotional stress we would endure. Or perhaps she just didn't want her taxpayer dollars going towards supporting kids like Austin.


And of course, I can't just end it here either. Just because I'm being honest and admitting choosing life is hard and inconvenient, and that in a way, I wish I hadn't had the choice, I don't want you to think I have any regrets about choosing life for our son Austin at this point. So the next part in this conversation should and will be:

Since choosing life is hard and inconvenient, is it worth it?

Wednesday, October 7, 2015

The Woman and the Tissue Box {Choosing Life: Chapter 3}

July 6, 2010

Facebook status, July 6th, 2010: “George Patrick lassos stork!"

Excitedly she pulled the glass door open to the women's clinic, breaking the seal between the hallway and waiting room creating a cool whoosh of air in her face from the air conditioning inside. She had brought her husband and two little boys, ages 8 and 11 for her first prenatal care appointment of her third pregnancy, the one where she fills out all the paperwork and agrees to a payment plan, the one where she pees in a cup and gets blood work done to officially confirm the pregnancy, and the one where they would get to hear the heartbeat for the first time!

When the nurse called her name, she followed her down the hallway to the exam room, alone at first. Her husband stayed with the boys in the waiting room. She planned to have them all come back once they got to the fun heartbeat part. No need to freak the little boys out with the peeing and exam part!

The nurse asked a few questions and took her blood pressure and then left her to undress and put on a gown. Once she had the breezy little gown on, she hopped up on the exam table and waited. Her nurse-midwife, the same gal that had delivered both of the other children, knocked quietly to see if she was ready and came in. They went through the routine of discussing her health and pregnancy history, she answered lots of questions and got an exam. Based on her answers to some of the questions, it was guessed that she was 10-11 weeks along. The nurse midwife asked if she wanted to go ahead and hear the heartbeat before they called the boys back to the room, and she said, "yes!"

As the nurse-midwife positioned and repositioned the fetal Doppler around her abdomen but couldn't seem to locate the baby's heartbeat, she began to feel more and more apprehensive. But her nurse-midwife brushed off any concerns and said after she came back from getting her blood work done, she would send her to get a fetal ultrasound.

She got dressed and walked in a daze back to the waiting room where her eyes met her husband's surprised look since he had expected to be called back with the kids to hear the heartbeat. She briefly filled him in on the plan and left them quickly to go to the Laboratory Department for the blood work.

She felt the panic and emotions welling up inside her. She sat down in a row of chairs off to the side out of the way, hoping to get control of herself. But she couldn't stop the flow of tears. She worried about all the things that could have gone wrong, and thought how funny that she could be so attached and so emotional over a 10-11 week old barely developed baby the size of a kidney bean.

As she sat alone in the waiting room of the lab, another woman across from her noticed her distress and without any words, quietly got up and brought her a box of tissues and then went to sit back down. She could barely see the woman through her tears and would not recognize her today if she tried, but she gave her a quiet thank you and an attempt at a smile. The fact that it felt like someone cared helped her finally get control of herself and continue through the motions of getting the blood work done and going back to the clinic where her family waited. She has never forgotten that tiny gesture of kindness.

Eventually she and her husband were ushered into another exam room. They left the boys just outside the room sitting in chairs in the hallway with threats to behave. After getting undressed again, she and her husband held their breath as the ultrasound technician lubed up the wand preparing for the up close and personal peek inside.

Immediately, the image of the baby popped up on the screen along with the unmistaken sound and picture of a beating heart. The baby was alive! He or she must have just been hiding. They both smiled and exhaled sighs and words of relief. Nothing seemed to have come from all her apprehension. The ultrasound technician pushed a button and printed out a tiny picture of a little monkey looking bean. She got dressed again, and she and her husband proudly went out to the hallway to show the boys.

Wednesday, September 30, 2015

Choosing Life Is Hard And Inconvenient {Part 1}

Social media is interesting because sometimes it's not just entertaining, but it forces you to be exposed to and face some hard things in life whether you were looking to or not.

Yesterday, I was forced to confront (in my mind) two issues, slightly related, and now I feel compelled to unload my thoughts about them, once and for all, damned the consequences. I worry about not pleasing people with my words. I worry about offending someone. And I worry that admitting my own desires makes me look foolish. I'd prefer not to talk about either of these stories, but I can't seem to rest or have peace until I do. At least I hope it brings rest and peace. Anyway, here it goes:

Choosing life is hard and inconvenient no matter what age the person is, born or unborn, but our culture, medical advances and technology allows/forces us to have to play God all the time.

When I was 20 weeks pregnant with Austin, I was forced to make a choice about his life. Do we give him the opportunity to live as long as he can, or do we decide for him that his life is not worth living, that his life would be too inconvenient for us to adapt to, that life would be too hard to accommodate him.

I remember sitting with my husband in the obstetrician's office, the only guy in town who specialized in detailed ultrasounds and complicated pregnancies, and receiving the news that our baby was "incompatible with life" and would either die before he was born, or die within minutes, hours, or days of being born which would probably be true if we did not have the medical advances and technology that we have today.

I was devastated while very human thoughts of "how do I fix/avoid/get out of this" entered my head. The doctor went on to suggest that we terminate the pregnancy and said that he would perform the "procedure". I actually don't ever remember him using the word "abortion". He was very matter of fact and technical. I tried to listen as best I could while trying not to be distracted by all the photos of his own smiling, healthy kids and family he had up on the wall behind him.

(I now know four years later after being a part of several special needs and medically complex support groups, that the "incompatible with life" and "you should terminate" speech is the standard spiel doctors seem to give every pregnant woman if they see any kind of blip or abnormality in the ultrasound. It is a dime a dozen speech, and I should never have felt like I was the only one to ever have heard it.)

I knew what "terminate" meant. And, at first I thought, Yes, we have a way out. But for some reason, I went on to ask the doctor how he would go about terminating the pregnancy. So while I could feel my very alive baby flipping around and kicking me, he described what he would do to kill him. Halfway through, I couldn't take hearing any more. I grabbed a handful of tissues since I was crying, we made apologetic excuses, and practically ran out of the office. We made the decision that giving our baby the opportunity for life was worth the risk of inconveniencing our own, that our life path would forever be changed, it could/would be hard, but somehow, we would overcome and reap whatever benefits placing value on life incurred. We only placed the tiny caveat that if he did not breathe on his own, we would allow him to pass. If he breathed on his own, we would use whatever medical advances and technology was available to allow him a chance at life.

So yesterday, I was very much overcome with those same intense emotions because the Planned Parenthood hearing was apparently going on and news about it kept popping up in my Facebook newsfeed. I made the mistake of clicking on a couple of the posts, and reading some of what both sides were saying. Over the past year, as the exposé videos trickled out, I could not bring myself to watch any of them because the very thought of tearing apart a tiny human just makes me physically sick. I had done the best I could to avoid thinking about this appalling daily act of murder that humanity performs everyday, and I just couldn't let my mind go there. I feel like there is nothing I can do to stop it, so I'd prefer to not think about it. So my posting this today, is my one tiny act of proclaiming abortion's injustice.

As these stories were pushing all the buttons of my emotions, another post came up from a page I had recently begun following. The page was set up by a young mother with a similar story to my own (as I said, these stories are a dime a dozen), where the mother was given the same speech as mentioned above, and had decided to birth the baby anyway. Where her story differs was that instead of seeming to pursue life after the baby was born and breathing, she seemed to have already made concrete plans to let her pass with hospice or palliative care (I'm not sure of the difference). Her baby had to be induced early, and they took her home the next day without any stay in the NICU. At home, she attempted and was successful at nursing the baby, but the baby began having problems so they went to stay at the local hospice in order to determine what to do next.

I was torn between conflicting emotions. First, I was frustrated that she seemed to be misleading all the hundreds of followers reading her page including mom's with children with a similar diagnosis, all praying for her, for a miracle, and offering support if the baby lived through the birth. And she got her miracle, the baby lived! That is what she seemed to be praying and hoping for on the support page. So my thought was the baby should have been taken to the NICU to see what needed to be done to help her thrive. So all I could think was the very condemning and human thought that since she couldn't bring herself to abort the baby, she is still looking for a way out of this very hard and inconvenient life that could be in her future. And then I thought, That's not fair! I want a way out too! (While this is probably not what she is thinking, it's unfortunately what I'm thinking as a bystander. But I'm not walking specifically in her shoes so I have to trust she's making the best decisions under her circumstances.)

So the other human emotion that began to creep in was envy. What?! I seem to be taking a stand for life in this post, and I feel envious that she might take the way out that we didn't have the guts or feel ethically we could take?! But think about it, killing a baby before he is born is murder, but allowing the baby to pass after he is born because of failure to thrive is just the way life is. If he can't eat, he can't eat. It was the perfect way out. (I'll admit I had a big ugly cry while I had these seemingly conflicting thoughts.)

Except it isn't the perfect way out and the decision isn't black and white in today's world. We have so many options now to prolong and extend life because of medical advances, feeding tubes, shunts, stints, vents, etc. How do we decide when to use those measures? Where do we draw the line? Is it only in times of anticipated complete recovery to an independent adult life? Or is it also when sustaining that life is inconvenient and hard for those taking care of that person and hard on the person the measures are taken for?

I was then overcome with these emotions related to decisions people make regarding choosing life after the child is born, especially in the case of severe or potential severe disability or medical complications. Medical advances have taken the once "incompatible with life" statement and made life compatible. A shunt here, a feeding tube there, and a child (or adult for that matter) that wouldn't live past a week, can live an undeterminable amount of years.

So my heart breaks for her that she might believe she can't live life with a disabled child. And my heart breaks for me that sometimes I don't want to live a life with a disabled child either. So while it's easy to talk about choosing life on moral or ethical grounds (in my opinion looking through the lens of Christianity, not killing an unborn child seems fairly black and white in most cases), in reality the consequences of choosing life will be hard and inconvenient and life altering for everyone connected.

I wish we didn't have the technology that forces us to have to make life vs. death decisions. But since we do, how do we support those who do choose life?

Tuesday, September 15, 2015

Sometimes Social Media is My Life Line

I’ll admit it. As a mom to a medically complex/special needs child, I use social media as a life line, and (ahem) I overshare. I’m not ashamed of it because many times, it has saved my son's least my sanity.

For example, at the end of February 2015, we were on our way to Texas with our son Austin for a Selective Percutaneous Myofascial Lengthening (SPML, say that five times) surgery in Galveston. After an eight hour drive from Arizona along I-10 through perfectly nice weather, we ended up in Van Horn, TX for the night. However, upon waking we found we would be driving through one of Texas’ freak winter storms for most of the day when we thought we had only nine or so hours left to get to Galveston according to Google Maps.

I was sitting in the middle row middle seat of our mini van next to my son’s car seat so I could periodically suction his secretions. I had a clear view out the front windshield of a gray, snowy, sleety, and cold highway. I started to panic a little as I realized we had stopped carrying winter gear in our car after we moved to Arizona.

My husband wasn’t helping my state of mind. He kept pointing out stalled vehicles, overturned trucks, and commenting that he kept feeling the car lose traction. We were only going 45 miles an hour and could barely see a few car lengths ahead. I kept my eyes peeled for tail lights in front of us. I also looked up the weather map on my phone to see how much longer we might be driving in this. Yikes!

I put out an APB on my Facebook status:

“We are traveling in the winter storm in Texas on I-10. We are supposed to be in Galveston tonight for evaluation tomorrow and surgery on Wednesday. I’m feeling super nervous because the map says we are driving through rain, sleet and ice for the next 200+ miles. The windshield keeps trying to ice up. We have already passed several recent wrecks and vehicles stranded on side of the road. There is ice on the road. We are driving slow.”

Immediately, comments loaded with prayers and concern were posted. And while comforted by the prayers, I was also comforted by the fact that even if we ended up in an icy ditch, friends out there sort of knew where we were.

Needless to say, we made it to Galveston safely, Austin had his surgery, and I stayed with him when he was admitted to the hospital for two days afterwards. As a mom to a kid whose been in the hospital a few times, I have learned the art of keeping myself entertained. Social media. I depend on everyone else outside of those three walls and a curtain to entertain me. I report on what’s happening with my son, and I live vicariously through other’s posts.

After being discharged from the hospital we had to make that same trek home along I-10. The entire trip included 18 hours of driving. For some reason after 17 hours (not including the stop in Van Horn overnight again), I had a vision of my son’s feeding pump cord still plugged into the hospital room wall! I frantically started looking through his bags, and not finding it checked how much battery was left on the pump. It usually lasted only a couple days after a full charge because he is fed continuously for about 20 hours out of the day. It had one bar left.

My stomach sunk with the realization that until I could get the cord back or a replacement, I would have to bolus an ounce of liquid food into his g-tube every half hour for 20 hours out of 24 hours everyday until we got a cord (he can only tolerate about an ounce at a time without puking). And since I had never tested that way of feeding before, I assumed the worst and figured he wouldn’t tolerate it after a while and would be puking it up anyway. The early stages of panic began.

Then the light bulb came on in my head, and I thought, Facebook! I quickly posted an SOS in one of my special needs moms groups, not really expecting anything but commiserating comments. But, lo and behold within 15 minutes, another mom offered her extra pump cord if I could stop by and pick it up.

Where!?” I posted, and she quickly replied with her address. I Google mapped it, and it was only 15 minutes off our current route home. Seriously, I kid you not. Son's life saved...sanity saved. It's all the same to me.

Wednesday, August 26, 2015

Sharing Jesus 'In Spite Of ' Fear {Catanduva 2015: Part 3}

"I need someone at the eye glasses station," the mission leader called out, "People have started lining up." 

She looked around and realized only she and one other gal were standing there. She thought, Ok, no big deal, I can hand out eye glasses.

But when she crossed the street, she found they didn't need someone to hand out reading glasses and sunglasses, they needed someone to sit under the canopy with an interpreter and present the gospel to the people wanting the free glasses. They started assembling plastic chairs in a circle. Lots of chairs.

What?! Not now. Not today. She wasn't ready!


Earlier that morning, she had been invited to go door to door with the pastor's wife who also happened to be her sister-in-law. Not ready to speak out loud, she watched in awe and with a little bit of jealousy, as this gal called out to people in their yard, smiled and easily struck up conversations. 

Questions asked. Answers given. The gospel presented. Prayers for salvation lifted up. Prayer requests shared and prayed over. Hugs given. Invitations to the church extended. 

She stood in the background at each home and prayed for the people under her breath, that their hearts would be soft and open, that the enemy would be bound. It was the only thing she felt confident in doing. 

This afternoon, she thought. I'll go door to door. I'll try to speak this afternoon. But as they say, the best laid plans... (or something like that).

So here she was in the afternoon attempting to "boldly" share the gospel with not just one person at a time, but groups of people, sometimes up to 6-8 at a time! This was not what she thought she signed up for. But apparently it was what God was going to ask of her. 

She trudged through the afternoon, not confidently, but obediently, secretly hoping the interpreter was fixing all of her mistakes. She knew she left out parts here and there, but she had to trust the gaps were filled in, if not by the interpreter, then at least by the Holy Spirit!

She usually asked if they knew about the new church building and then she asked for prayer requests. Many who were obviously broken hearted over trials in their lives would become emotional. Her heart could relate to those people. She's experienced brokenness and despair, and she found praying and sharing the gospel with those people seemed almost easy. She felt their need. She felt them seeking assurance.


A couple days later, she found herself under the canopy again. The groups seemed a little smaller so she thought, I've done this before, this will be easy.

But this day turned out to be more difficult than the previous one. She got in a hurry and rushed through the steps. She stumbled over her words. Her thoughts were not coherent. She lost her place several times. She felt the interpreter was losing patience with her. She was frustrated and just before she let the tears flow, she desperately called someone over to take her place, and then walked quickly away from the booth.

What had happened? Why was today so different? This was too hard. They have asked the wrong person to do this. Someone got their wires crossed.

She sought out the hiding place behind the buildings as she did the other day, but there was already another friend of hers there. She had heard about this friend's boldness in sharing the gospel in the neighborhood the past few days. The thought that she was such a failure compared to this friend was intimidating, but the friend merely patted the dirt and invited her to sit down. Before she knew it, she was confessing all her fears and anxieties about the day to the friend, and the friend calmly prayed with her and assured her that her efforts were not in vain. 

Later she felt led to read the Book of Ruth.


The next afternoon, she had the opportunity to accompany her son in a group that was going to a "tough" neighborhood. This would be his first door to door experience and she wanted to witness it! The friend from the day before was also coming with the group.

They were told they would just be handing out tracts and inviting people to the church. But as she and her friend rounded a corner, they came upon a woman sitting on the sidewalk. They were advised she was possibly drunk. As the interpreters began to talk to the woman, another woman and two teenage girls joined them. 

Then the interpreters turned to her and her friend and asked if they wanted to say anything. Her friend looked at her and said with a smile, "Do the cube." (The cube was referred to as the "magic cube" because of how it unfolded showing various pictures. At each unfolding, it contained the next step in the plan of salvation.) As horror overtook her, she obediently "did the cube". When she was done, they all stared silently at each other as she was at a loss for what to do next. Her friend whispered to share some scriptures from the Bible, but fear enveloped her, and she looked at the friend pleadingly and asked the friend to do it instead.

What she witnessed next was profound, and something she hopes she will never forget. The friend easily guided the women and girls though the steps of salvation based upon scripture. The women began to ask the friend hard questions about the friend's life to which the friend answered truthfully. They made a heart connection, and tears began to flow from one of the women. Because of the friend's honesty and openness, hearts were softened, prayers for salvation were lifted up, and lives were probably changed.


Since returning from the trip and as she reflected on these various scenarios, trying to make sense of it all, sorting out her emotions, she realized that there were at least three things she could take away from these experiences.
  1. She needed those opportunities of following behind friends that were more experienced and bold. She wasn't sure why she was led to read the Book of Ruth, but she thinks that like Ruth gleaned behind the harvesters who made it easy for her to bring home food, she needed to see her sister-in-law and her friend's examples and have the opportunity to reap along with them as they harvested. 
  2. Making a personal heart connection with people seemed to be the key to making sharing the gospel flow more easily. On the first day, when she knew where they were hurting, she could pray and connect with them better. On the second day, when she skipped the conversation part and rushed through the steps, she lost her way.
  3. She better be prayed up and in the Word because the enemy was going to make her second guess herself and feel shame and humiliation, if not immediately afterwards, then within hours. Every experience where she had been the one talking had been followed by a torrent of tears and a feeling of remorse. The accuser is very good at his job.

One day Ruth, the Moabite foreigner, said to Naomi, “I’m going to work; I’m going out to glean among the sheaves, following after some harvester who will treat me kindly.”Naomi said, “Go ahead, dear daughter.”And so she set out. She went and started gleaning in a field, following in the wake of the harvesters. Ruth 2 MSG

  • "For all have sinned and fall short of the glory of God" (Romans 3:23). 

  • "For the wages of sin is death, but the gift of God is eternal life in Christ Jesus our Lord" (Romans 6:23) 

  • "The next day John saw Jesus coming toward him and said, “Look, the Lamb of God, who takes away the sin of the world!'" (John 1:29). 

  • "Jesus answered, 'I am the way and the truth and the life. No one comes to the Father except through me'" (John 14:6). 

  • "That if you confess with your mouth, 'Jesus is Lord,' and believe in your heart that God raised him from the dead, you will be saved. For it is with your heart that you believe and are justified, and it is with your mouth that you confess and are saved. As the Scripture says, 'Anyone who trusts in him will never be put to shame'" (Romans 10:9-11). 

  • "And he died for all, that those who live should no longer live for themselves but for him who died for them and was raised again" (2 Corinthians 5:15). 

  • "Here I am! I stand at the door and knock. If anyone hears my voice and opens the door, I will come in and eat with him, and he with me" (Revelation 3:20).
  • Are you a sinner?
    Do you want forgiveness of your sins?
    Do you believe Jesus Christ died on the cross for you and rose again?
    Are you willing to surrender your life to Jesus Christ?
    Are  you ready to invite Jesus Christ into your life and into your heart?

    "Heavenly Father, I have sinned against you.  I want forgiveness for all my sins.  I believe that Jesus died on the cross for me and rose again.  Father, I give you my life to do with as you wish.  I want Jesus Christ to come into my life and into my heart.  This I ask in Jesus' name.  Amen"

    Share Jesus Without Fear, William Fay, published by Broadman & Holman Publishers, Nashville, TN.

    Tuesday, August 25, 2015

    The Mary/Martha Tug of War {Catanduva 2015: Part 2}

    Emotionally drained from having been thrown into the fire of evangelizing the day before and feeling somewhat unsuccessful at that, she got up the next morning, dressed in her $5 Goodwill jeans and old gray t-shirt, and determined she would work on the church building that day.

    However, those familiar feelings of inadequacy consumed her as she walked around the building site looking for something to do. Not sure of where to jump in, she filled the downtime by taking pictures of everyone else working. Everyone busy. Everyone seeming to have a purpose.

    She had traveled halfway across the globe to be a part of this so if she wasn't busy, she or others might question her purpose for being there (or send her out to evangelize - yes, she may have been hiding out that day). But in the end, her fear of failure and not wanting to impose herself on those who didn't seem to need any help kept her desire to work on the building in check. She told herself to be content to keep record of other's endeavors, knowing they would be grateful to see their efforts documented. But still she ached to be assigned a task.

    Then finally! Someone asked her to do something. She had a purpose. She would be busy for Jesus today and everybody would see it! (hello pride...) But no sooner had she started working on this project, than she was flocked by others also looking for something to do and a need to feel useful. They asked to help, and soon she felt she should delegate the project to them and walk away.

    It was emotionally difficult. She struggled with letting go of the ownership she had already taken for the project and wanting credit for doing something that day vs. giving the project away to others that were obviously feeling the same way she had felt all morning.


    What a horrible feeling. She wanted to cry so she hid out behind the back buildings. She took out her cell phone, called her husband, and cried on his virtual shoulder. He assured her that she had a purpose, that her traveling there would not be in vain. They talked about what her gifts were, and how she had already started using them. They talked about her ongoing struggle between her desire to be in the limelight and get noticed and credit versus her competing desire to hide in the background and just be a support system to others.

    So eventually she changed her attitude. Instead of "doing" for Jesus, she would sit at his feet. She would just be there. She would absorb the experience through others. She would not seek out a job. She would support and document everyone's work. She would listen to their excitement and frustrations. She would encourage their efforts. She would smile when not feeling like smiling. She would submit her will and expectations for that day to perhaps what God willed for her instead.

    And she found rest. And joy.

    The remainder of the afternoon turned out to be one of the most fun and fulfilling days of the week. She made new friends. She talked, giggled and joked while trying to learn and understand Portuguese. She was just present, listening, smiling, and taking in the experience. She was even offered several opportunities to learn some of the building skills even though her efforts did not achieve the desired results. Everyone was lighthearted. Everyone laughed. She had won the tug of war in her heart today.

    The Master said, “Martha, dear Martha, you’re fussing far too much and getting yourself worked up over nothing. One thing only is essential, and Mary has chosen it—it’s the main course, and won’t be taken from her.” Luke 10:38-42 MSG

    Monday, August 24, 2015

    An Exercise in Saying Yes {Catanduva 2015: Part 1}

    Exhaustion set in as the plane bounced onto the tarmac, wing flaps fully extended, its engines roaring in an effort to slow down the large mass of metal. Her flight time had totaled about 15-16 hours in addition to a previous 6 hour bus ride. She was returning from the opposite side of the equator, from a place called Catanduva, São Paulo, Brazil. Catanduva's winter, similar in temperatures to those in Arizona, was just coming to an end, warm for the most part, downright hot under the sun, with shade offering respite in the afternoon.

    This past week. Was it a dream? She experienced it, yet it didn't seem like real life, more like a movie, surreal. Facebook photos and a renewed outlook, the only proof that it had actually occurred.

    Ten days ago she traveled to Catanduva with her sixteen year old son and a group of adults from her church. When the mission leader first visited and spoke about the opportunity for their congregation to take part in this mission project in Brazil, her heart beat wildly in her chest; she almost couldn't breathe. She peeked down the row at her teenage son and thought for sure this was an opportunity he needed to experience. With his own expression of desire to possibly go into the ministry someday, she assumed what she was feeling in her body was the call to sign him up. However, a week later, when the feeling didn't go away, and after she asked her husband if he wanted to go, she submitted to the call herself and signed up too.

    Their mission: erect a new building for a local church as well as share the gospel with the surrounding community.

    • Erect a new building with very little construction skills? No problem. No fear.
    • Share the gospel with others when her own life is not the best example of a life continuously rooted in Jesus? That might be a problem. Extreme fear.

    The last time she remembered having actually presented the gospel to someone was 25-30 years earlier when she was in high school. At that time, she had been part of a church youth group that stressed evangelism and sharing Christ with others, and while attending the youth group's discipleship studies, she was repeatedly encouraged to share her faith.

    She had grown up in a suburban, sheltered environment, accepted Christ into her life at a young age, was surrounded by strong Christian influences, and was easily bold in her faith and sure of her salvation. Life was not difficult, the burden really did seem light.

    Until college. Even though she tried to recreate the same environment she had left behind by joining Christian groups and attending church, she just didn't feel a strong connection at first with the Christians on campus. The loneliness from being so far from friends and home led her to hang out with anyone who would accept her into their circle. Her Christian walk became quite "zig-zaggy".

    During her first year of college, she was more concerned with her own feelings of acceptance than anyone's spiritual destiny, not speaking of her beliefs with someone unless she was sure they already believed the same. And while she would walk the straight and narrow for a while even if lonely, temptation for friendships and acceptance would take her off the path for a time until she felt compelled to redirect her spiritual life again. This became a habit that continued for years even after she was married, had kids, and good friendships. She used God's grace as a safety net rather than recognizing it as the true gift of salvation and a place to rest.

    And while God was patient with her through all those years, perhaps even holding back the dam of consequences that she should have incurred, she felt guilt for the many mistakes she had made along the way. Over time, she felt she wouldn't have much influence if she were to share her faith with someone, telling them they need to turn to God when she could not stay faithful to Him herself. She felt it would be hypocritical, the plank in her own eye was too large for her to remove in order to ever help anyone with the speck in theirs. So as her condemnation for herself increased so did her apathy towards others. They were on their own.

    But then God either quit holding back the dam of consequences, or he just got tired of her apathetic attitude. Either way, in recent years, God has allowed more tests and trials than she ever thought she could handle. In the midst of these challenges, she has questioned God, gotten angry at God, cried out to God, begged for mercy from God. She wanted to run or escape, but he wouldn't let her. He continually pursued her until she finally had to give in. She was miserable while she fought, and only experienced peace and freedom once she submitted.

    So she said yes to going to Brazil even though she felt she had nothing spiritually to offer. She had no plan for what she would do there, but she went with the attitude that she would say "yes" to whatever someone asked her to do. Secretly she hoped she could just work on the building, and it would all be easy. She was totally ok with that.

    But God was not ok with that. The building had plenty of workers. Workers with skill and strength she did not possess. So while she said "yes" to any building opportunity offered such as moving concrete blocks or trying her hand at scattering mud on the wall, to attempting to trowel on the stucco, to standing on a precariously perched scaffold to paint the outside wall of the church, or just sweeping the floor and picking up trash, God also had people ask her to go on prayer walks, share the gospel with groups of people as they came to the free eyeglass station, and walk the streets to share the gospel with people in the neighborhood.

    She said "yes" to all of it as best she could. Her personality compels her to let others lead if they seem to have more experience or confidence, but in the end sometimes there just wasn't anyone else around, or she had someone with her that knew about and seemed intent on pushing her to overcome her feelings of inadequacy.

    She cannot tell you in numbers how many she lead to Christ or prayed with for healing, for their families, for their financial situations. She cannot tell you why she felt compelled repeatedly to pray specifically for peace and comfort and for the Holy Spirit to rain down his presence among these people.

    All she knows is that she had one job to do; the job to submit and say "yes" to God.

    Saturday, July 18, 2015

    Magical Childhoods, Mommy Moms, and Miracles

    I was asked to share some of my story with teenagers this past Wednesday night during their youth group meeting. I was asked to share my perspective of what part Christianity plays in an adult's life.  After praying and asking God what I should talk about, and how deep I should go into my story, I was led to share the following. If you have read other stories in my blog, you know that this is just a glossing over and certainly neither complete nor the end, but I wanted to give them something to relate to, as well as impart the hope the Bible promises. Therefore, I felt led to end on a positive note even though as an adult Christian, I'm not always in a positive place. But maybe, if I assume God impressed upon someone to ask me to do this, the whole point of this exercise was God reminding me of the hope I've experienced and known in the past, and that he has always brought me out of my place of perceived disappointment and despair. I can attest that I am in a positive place right now.


    {Questions for discussion}
    Do you ever make plans for next week or next month? Or what about next year? How do you feel when your plans work out? How do you feel when your plans don't work out? Do ever you imagine or dream about what you will be doing as an adult? What life will be like?

    {Question to think about}
    Have you experienced anything really “hard” where you asked God why? Or got mad at God for allowing it? Or blamed Him for not making it right, or for not fixing things the way you want it?

    {Story #1}
    Once upon a time there was a little girl with long dark hair and hazel eyes. She had a shy, introverted personality and spent a lot of time in her room alone as a child, reading books and day dreaming.

    She lived in a nice house in a quite neighborhood in Texas. She obeyed her parents and got good grades. At six years old, she asked Jesus into her heart and became a Christian. She grew up in the church going to Sunday school, Sunday morning and Sunday night church services, Wednesday night missions groups and later youth group. She understood God loved her as best she could.

    This little girl had a best friend. Her friend was friendly and bubbly and pretty. And through the years they talked about everything – especially about BOYS! She can't remember when they didn't talk about boys - boys at church, boys at school, boys in the neighborhood, boys at the mall. They discussed who they wanted to have as a boyfriend, who was cute, who was funny, who may or may not have looked their way that day.

    Then one day in 8th grade her best friend got asked out. However, SHE did not. Her best friend began dating, but SHE did not. This made her very sad and she cried a lot. She began to wonder what was wrong with her. Why did God made her this way? Why was she so quiet and shy? Why was she so ugly? Why didn't the boys want to ask her out?

    {Questions for discussion}
    Where should she have looked to find her worth? Have you ever experienced a desire so strong that it seemed like the end of the world if it didn't happen? What do you guys do when you experience disappointment? If you were her friend, can you think of any Bible verses or stories that might have encouraged her?

    {Story #2}
    One day in high school a boy asked her out and she finally started dating. This made her happy because she had a plan. She planned that one day she would get married, have two kids, be a stay-at-home mom, and spend all her time being one of those mom's that creates magical experiences all the time for her kids, and they would live happily ever after (this is the kind of mom that she now calls a “mommy” mom or a “gifted” mom).

    When she was twenty years old, she married a boy that she was “best friends” with in high school. They lived in Arkansas trying to make ends meet while completing their college degrees. She graduated first while he went to school part time and worked. Then she got a job, and they moved to Oklahoma and bought a house. He then went to school full time to finish his college degree and then went to Law School full time. After he graduated Law School, they moved to Montana.

    Finishing school took time and they planned to wait until they were out of school to start having those two kids. So EIGHT years after they were married, and once they both had jobs and had bought their second house, she got pregnant with their first boy. His name was Michael. About two and half years later they had their second boy. His name was Jonathan. And so their family seemed complete. All was going to plan.

    EXCEPT. She found working out of the house and being a mom to two small children was extremely difficult. She was not able to create those magical experiences she had planned. There was absolutely NO magic going on when she was torn between tending to her kid's needs and meeting a work deadline. AND, she found out she was NOT a “gifted” mom. She didn't really enjoy hanging out with just kids all day. Her husband worked a lot, and she missed having a friend. She was tired and frustrated, and again, she became very sad and cried a lot. She didn't want to work anymore. She didn't feel like parenting anymore. And she was lonely.

    Again she questioned God. Why did he make her this way? Why couldn't she love being a mom? Why did she have to work? Why couldn't she make a close friend? What was wrong with her?

    {Questions for discussion}
    Is she allowed to question God? What should you do if you feel depressed and sad? If you were her friend, can you think of any Bible verses or stories that might encourage her?

    {Story #3}
    Eventually, she got to cut back on the hours at her job, she made friends with other moms by spending more time at the school, and her kids were growing up and participating in all kinds of activities. She learned the trick to creating a SOMEWHAT magical childhood for her kids was to become best friends with another mom who was a REAL “mommy” mom. This other mom had great ideas, and all she had to do was find out when and where, and show up. This other mom was also good at making friends and soon she had a group of friends that she could hang out with. Life finally seemed fun now. AND easier.

    Her kids were now around 9 and 7 years old, and she and her husband let her husband's brother and fiance come live with them. As an introvert, it used up all her energy having other people in her house all the time. So she was looking forward to when they were going to move out. However, the week before they were supposed to leave, her husband had a knee injury, her father-in-law died from a heart attack, and the rest of her husband's family, his mom and brothers and sister, moved in with them for several months. Her husband ended up having ACL surgery from the knee injury, got blood clots in his lungs after the surgery, and almost died. They also experienced two more deaths of close family members that year. She got REALLY mad at God for a while for letting all these things happen, but with time, she was finally able to be ok with everything and move on.

    {Questions for discussion}
    Should she have gotten mad at God? Does God still love us if we get mad at Him? If you were her friend, can you think of any Bible verses or stories that might encourage her?

    {Story #4}
    In 2010 they decided life was good again, and they would try for a girl. She was almost 40, so in their minds, it was now or never! By May she was pregnant and the whole family was very excited. However, in September, through ultrasound, they found out the baby had a severe brain malformation and that he had several other birth defects. They were told ALL the terrible things that might be wrong with the baby. They were told the baby would die sooner or later, or would suffer a lot if the baby lived. They were told they should KILL the baby.

    She was very scared and VERY sad. This time though, instead of questioning God or getting mad, she did something else. She wrote what she did in her blog a month after the ultrasound:

    “That night on September 8, 2010, I cried.  I mourned my expectations of a normal baby.  Throughout the night, I gave the baby to God, the Creator of the baby - the One who forms in the womb.  I asked Jesus to hold my baby in His arms; to comfort and protect him.  I confessed my guilt and fears - guilt over considering aborting, guilt over wanting God to take the baby if he was going to struggle to live on earth, and fears of the baby dying.  I asked for love and strength to take care of a disabled child who might not be able to return the love.  And then I prayed for a miracle. 
    I had swallowed my pride earlier that evening and asked my husband if I could ask for prayer on Facebook.  My husband had already called the church for prayer earlier too.  Beginning that night, after crying and praying, I began to feel peace.  I felt it had to be the Body of Christ praying for us.  I had never truly felt that before - the peace that passes understanding.”

    {Questions for discussion}
    How did she react differently this time when she got bad news? How could she feel peace when facing something so hard? How can YOU face hard things in YOUR future?


    The following are the three scripture passages I shared with the group:
    Psalm 139:13-16 The Message (MSG) (David describing how God knows him) 
    13-16 Oh yes, you shaped me first inside, then out;
        you formed me in my mother’s womb.
    I thank you, High God—you’re breathtaking!
        Body and soul, I am marvelously made!
        I worship in adoration—what a creation!
    You know me inside and out,
        you know every bone in my body;
    You know exactly how I was made, bit by bit,
        how I was sculpted from nothing into something.
    Like an open book, you watched me grow from conception to birth;
        all the stages of my life were spread out before you,
    The days of my life all prepared
        before I’d even lived one day.

    2 Corinthians 12:7-10 The Message (MSG) (Paul talking about his “thorn in his flesh” after God gave him revelations that could have resulted in pride) 
    7-10 Because of the extravagance of those revelations, and so I wouldn’t get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,
    My grace is enough; it’s all you need.
    My strength comes into its own in your weakness.
    Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become. 
    Isaiah 40:27-31 The Message (MSG) (Isaiah speaking to exiled Israelites when they thought God had given up on them or forgotten about them) 
    27-31 Why would you ever complain, O Jacob,
        or, whine, Israel, saying,
    “God has lost track of me.
        He doesn’t care what happens to me”?
    Don’t you know anything? Haven’t you been listening?
    God doesn’t come and go. God lasts.
        He’s Creator of all you can see or imagine.
    He doesn’t get tired out, doesn’t pause to catch his breath.
        And he knows everything, inside and out.
    He energizes those who get tired,
        gives fresh strength to dropouts.
    For even young people tire and drop out,
        young folk in their prime stumble and fall.
    But those who wait upon God get fresh strength.
        They spread their wings and soar like eagles,
    They run and don’t get tired,
        they walk and don’t lag behind.

    Thursday, May 21, 2015

    Freedom is Slavery

    "Winston, sitting in a blissful dream, paid no attention as his glass was filled up. He was not running or cheering any longer. He was back in the Ministry of Love, with everything forgiven, his soul white as snow. He was in the public dock, confessing everything, implicating everybody. He was walking down the white-tiled corridor, with the feeling of walking in sunlight, and an armed guard at his back. The longhoped-for bullet was entering his brain. 
    He gazed up at the enormous face. Forty years it had taken him to learn what kind of smile was hidden beneath the dark moustache. O cruel, needless misunderstanding! O stubborn, self-willed exile from the loving breast! Two gin-scented tears trickled down the sides of his nose. But it was all right, everything was all right, the struggle was finished. He had won the victory over himself. He loved Big Brother."
    She reaches out her hand and pushes the power button on the audio system in the minivan while the final words of George Orwell's 1984 still linger in the air. Sitting in silence, she holds her breath while she tries to process her thoughts.

    Could God use a supposed atheist's political thriller to reach me? To illustrate His jealousy for me? To give me clarity about His nature and desire for me? To help me discover the spiritual freedom I've been searching for?


    She started listening to the audio recording of the novel about a month and a half ago during the two hour round trip drive to the Foundation for Blind Children.

    Her 15 year old high schooler had suggested she read it as he was also reading it for class. She's not sure what his motive was for wanting her to read 1984, but she does know he has strong moral convictions and political opinions, and he hates she claims not to care about what is going on in the world, she says she would rather be uninformed, and she declares she has enough to deal with in her own life and can't do anything about the rest of the world anyway. She chalks his disapproval up to his idealism or naiveté; he still thinks he can change the world because he has little experience of how life can cruelly change him.

    Based upon some vague idea of what she thought the book was about, it began somewhat as expected with the main character, Winston, struggling with his rebellious thoughts against the government and seeking to record them in a journal. She relates somewhat to this since she has done the same with her own rebellious thoughts and questions about God. The novel sounds instantly familiar, and she starts listening to the book through the filter of her own spiritual struggle with God rather than identifying with the main character's thoughts of resistance against an earthly government. 

    As the novel plays out, there are several other events, themes or ideas that seem relatable to her spiritual struggle, and she contemplates their relevance or similarity to ideas or teachings in the Bible**. Specifically, she can't quit thinking about Freedom is Slavery and the fact that a party member must love Big Brother before they would be allowed to die.

    She shocks herself with the following thoughts:

    God is Big Brother. His kingdom is totalitarian. He commands submission. He commands worship for Him only. He commands love for Him first before all others. He promises freedom and a new life. I must love Him before I can "die". How do I know if I love Him? Is it a feeling? Is it just an acknowledgement and repeated mantra? Can it be a feeling? 

    She really wants it to be a feeling. She wants to experience Winston's blissful dream, the moment she can be unaware of all hardships and only in tune with love for God. She aches for the aforementioned longhoped-for bullet to the brain.

    Like Winston, her circumstances and emotions have led her to become desperate for an escape. Like Winston, loving and being loved by another human is not enough; two flawed beings will always find a way to disappoint each other whether intentional or not. Like Winston, she yearns for freedom. Like Winston, she is becoming aware that freedom might have a different definition than what she assumed. Like Winston, her flesh rebels against the Authority. Like Winston, she can only see what the Authority appears to be taking away. Like Winston, the choice is being made for her.

    Freedom is Slavery. To obtain freedom, she must choose slavery. But that goes against logic; it's doublethink.

    Have human attempts at totalitarian governments resulting in evil atrocities caused me to think that there cannot be a supernatural totalitarian kingdom that results in perfection and love? What if God/Christ is the perfect Big Brother? What if His totalitarian kingdom could actually produce peace and freedom for me if I could just submit to His will? My flesh rebels against God like Winston rebels against Big Brother. How do I fight the cravings of the flesh and submit to God's will? 

    As she ponders these questions, a quiet voice whispers to her heart.

    *Disclaimer: This story is about the effect a literary work of art made on the reader/writer. It is not meant to be a theological dissertation nor an analytical book review, but another glimpse into the writer's spiritual journey and her relationship to God at this time in her life. Please no haters if her words offend your ideas about Christianity or if, to you, they are completely off base. She realizes she could be wrong, but fortunately or unfortunately, this is how God is having church with her today.

    **Thought Police and Big Brother is Watching You, doublethink, thoughtcrime, Two Minutes Hate, torture, physical suffering, mind control, brainwashing, and indoctrination, no family loyalties allowed, War is Peace, Freedom is Slavery, Ignorance is Strength, Must love Big Brother before death