Fighting for Peace

This morning she woke with an intense desire to stay in bed and sleep all day. She felt the weight of tiredness, the stress of a busy schedule, and the funk and heaviness of going through the motions of existing.

Her mind bombarded her with thoughts all demanding an emotional or physical response. However, her schedule being full today meant she could not indulge these desires, and therefore, she fought her thoughts tooth and nail, moment by moment, until she was finally out the door and on her way.

She had wanted to escape. But she also knew that escaping and achieving peace through sleep, or by any other means, is only a temporary fix. She is starting to recognize that learning to quiet the thoughts in her mind, that voice that monologues all day long analyzing her every pain and discomfort, rehashing the past, worrying about the future, and stirring up her emotions might be the key towards a lasting solution.

She has not felt the intense desire to write lately, the need to unload all of these thoughts that normally torment her. Instead she has been practicing being quiet, listening instead for the still, small voice; trying to be more of an observer of these thoughts and of herself as she has these thoughts, being aware that she is NOT these thoughts, even imagining them as a separate entity from her, something she can distance herself from at will.

By creating space or distance from her thoughts (which she did unwittingly by writing about them in the third person several months back), she seems to be able to keep them from taking hold, but only if she is alert or present, and paying attention. If she relaxes, lets her guard down, and begins to just react emotionally to the thoughts as they come into her mind, before she knows it, she will be sucked into a downward spiral, a vortex of negativity and funk.

Aha! It's just so easy.

But she is finding that this is the hardest work she has ever done. She forgets all the above and gives into her thoughts, or she is at least tempted because it's easier to just go back to responding reactively, just let all the negativity in, feed the emotions as they pop up, really immerse herself in all her personal pain and the pain of the world. The injustice of it all! Ahh, that feels better (until the next thought moments later).

However, she knows that since she has become aware of something, a mystery revealed, a nugget of truth found, she really can't become unaware of it. And fortunately or unfortunately, she's had glimpses of peace, momentary pauses from just existing, maybe a peek into heaven. And she wants more. Peace of mind. Peace of thought. Peace while existing in the midst of the world's chaos, injustice, and insanity.

*****

1 Kings 19:12; Psalm 46:10; Philippians 4:7

How To Build A Free Platform Swing For Your Special Needs Kid

Austin loves to move, and he loves to be on his stomach. Even when I try to prop him on his side, if he is not wedged into position and has an incentive like something he wants to see, he will eventually start corkscrewing his head and body around to try to get onto his stomach. It takes a while, but he can do it. He just rocks his head back and forth until his body falls in line.

However, because he has a big ol' heavy noggin caused by his Dandy Walker malformation (which resulted in hydrocephalus), he cannot lift his head off the floor when on his stomach so he ends up causing a "rug" burn on his nose and cheeks and even nose bleeds as he repeatedly rocks his head side to side. This happens on every surface we have tried - blankets, gym mats, bed chucks, etc.

So this weekend after watching this happen - A G A I N, I finally decided to try to build him a solution I had been mulling over in my mind for a while. I wanted to build a little platform that would raise his body between his armpits and his waist off the floor 2-3 inches so that only his forehead and knees would be against the floor and maybe his nose and cheeks could get a break. 

I've tried pillows and stationary platforms before, but he eventually rolls off them and back onto his face (or, if you can believe it, has even propelled himself over them). So I was also thinking that if the platform was suspended like a swing, then he could benefit from the movement and feel like he was pushing himself with his legs. And who knows, maybe by some miracle, he might even discover that he has arms while they dangle beneath him onto the floor.

Therefore, this is my step by step photo tutorial with instructions of how I built Austin's little platform swing.

Collect The Materials

Step 1:

Raid your dad's scrap wood bin. First you need a dad who does random furniture repair and refinishing projects and then hoards the scraps. Make sure he pulls out lots of options, and that he almost falls into the bin while searching for just the right piece. It needs to be light weight and to your exact specifications, 10" x 18" (the 10" was the approximate distance from armpits to waist and the 18" was arbitrary).

Step 2:

If the piece of wood that he gives you is the right weight/thickness, but not the right measurement, have your dad pull out his new compound sliding miter saw woodworking toy that he bought a couple weeks ago (after much research he says) so he can see if it will work on a project like this. It works beautifully. Watch him be excited about this.

Step 3:

Casually mention to your dad that you plan on covering the wood piece with some kind of cushion material and then another material that would be easy to clean. Stand back while he miraculously digs out scraps of 2" foam and leftover faux leather. 

Step 4:

Tell him you were thinking of using eyebolts in the corners to loop rope through so you can hang the swing. Let him dig through his hardware hoard to only come up with one eye bolt. Let him think you are going to the store for the hardware, and then let your eyes glaze over as he describes how you need a nut and then a flat washer, and then the bolt goes through the wood, and then you need another flat washer and a locking washer and then another nut. Think to yourself that going to the store for all those parts sounds like too much trouble and will delay the project. Determine you will find something that will work in your own hoard at home. Thank your dad and grab your stash.

Step 5:

At home decide that you will just drill a hole in each corner, feed the rope through and tie a knot underneath. Then be concerned that the light weight piece of wood you chose might be too thin and might break from the strain of the rope in the corner. Try to think of something that could reinforce the corners. Brilliantly remember that you might have some large washers leftover from a DIY decoupage necklace project you were all excited to make once so you had bought like ten washers. You only made five necklaces. You rummage through your sewing table and score four large washers with holes in the center big enough for some rope.

Step 6:

Find some rope. Go into your garage and let your eyes wander the shelves. Spy the abandoned climbing rope that you found tied to a tree at a campground in Yellowstone National Park. The rope is being stored with your camping and G.O.O.D. supplies, but now you decide a swing for Austin is way more important than that chance apocalypse (be concerned for a moment that in the light of world events you could be wrong, but dismiss this idea quickly because it's depressing). Focus on the now.

Assemble The Swing

Step 7:

Take the large washers and decide you might want to glue them in place at each corner so they don't slide around when you add the rope. Before you glue them, realize you should probably drill the hole first in case you don't have good aim and then glue the washer over the hole you create. Take a pencil and mark the inside and outside of the washers on the corners on the top of the board.

Step 8:
Find your drill and a drill bit that will just fit inside the hole in the washer. Search everywhere for these drill bits because you know you bought them once, and they have to be around somewhere. Find them in a drawer you had already checked three times.

Step 9:

Realize the drill bit is going to go sliding all over the place unless you take a hammer and nail and make a tiny hole to get the drill bit started. 

Step 10:

Be really tentative when you start drilling the first hole because you are worried you are going to split the wood. This causes you to not give the drill enough RPMs so that you end up NOT drilling all the way through the wood making the hole start shredding on the backside when you try to finish it. On the next three holes figure you can't screw up any worse and confidently pull the trigger back and shove that drill through each hole making nice clean shapes. Begin to sweat a little.

Step 11:

Find some glue. Dig around in your junk drawer in the kitchen and find some kind of all purpose glue that you bought for another project and never used. Be only a little concerned that you have no idea if it will hold or not. Find some bull dog clips in another kitchen junk drawer to hold the washers in place after gluing since it says on the bottle it's going to take 30 minutes to set and 24 hours to cure. Ignore the 24 hour part.

Step 12:

Since you have no idea how dirty or slimy your washers are, go ahead and clean them with a cotton pad and some alcohol. Do this only because it makes you feel like a professional and not because you know if you have to or not. Hope the glue sticks.

Step 13:

Flip your piece of wood over and squeeze a bead of glue around what looks like the bottom of the washer. Stand back and photograph the glue bead because you can.

Step 14:

Glue a washer on each corner of the board securing it with a bull dog clip to keep it in place. You now realize you are at a stopping point because you have to wait 30 minutes for the glue to set. This will be the hardest part of the project because you might easily become distracted by something else and never come back to finish. It's the risk you take with every project you start.

Step 15:

Go to the kitchen and realize the pot roast you put in the slow cooker that morning is done! Get a little excited because you are hun-gry.

Step 16:

Lift the lid and break the handle off (again). Remove pot roast to rest in a casserole dish while you make a little gravy. Eat said pot roast while watching a DVR'd Real Housewives episode. Ignore future judgements from readers that you did not fix and are not eating any vegetables or salad. Ignore future judgements from readers that you are watching Housewives.

Step 17:

Hoist your butt off the couch because you are losing the daylight you need to finish the project. Everyone knows that daylight makes the photos look better. Go out to the garage and remove the bull dog clips. Bring the board inside. Admire your work. Resist urge to quit.

Step 18:

Cut the piece of 2" foam using a bread knife (see knife in Step 19) so that it is about an inch or so larger than the board. Plan to cut the corners off the foam to allow for the holes in the board to be accessed by the rope. You are not quite sure what the plan is at this point. Keep going anyway.

Step 19:
Cut the corners off the foam using that bread knife again. A bread knife goes through foam like butter on a pot roast.

Step 20:

Cut that free faux leather scrap that your dad gave you a couple inches or so larger than the foam. Try to think of something clever to write here. You can't so move on.

Step 21:

Begin upholstering the board by putting all your weight on it with your knees and pulling the fabric tight over the foam. Attach with a staple gun like a boss and like you've done this before. Channel all the DIY episodes you have ever watched to get this done. This is harder work than you thought it would be, and your under-knees start sweating. Consider if it would be weird to put antiperspirant on the skin behind your knees. Fold the fabric under before stapling for a clean edge since you are too lazy to upholster the bottom of the board. Realize the corners will have too much fabric when you start folding it under so cut off each corner to reduce the bulk.

Step 22:

Play with the corners to get the folding to work and to avoid covering the hole for the rope. Tuck the fabric under the foam on the top and then pull tight to the back and staple. Keep sweating.

Step 23:

Take a picture so that you have an excuse to take breather break then finish the rest of the corners.

Step 24:
Take another picture and wish you were done. Think to yourself that this is taking way too long. Keep adding steps because you have more pictures.

Step 25:

Decide you should probably cut the sharp corners off just in case the swing tries to bash your kid in the eye. Your are not saying you know HOW this would happen, but you ASSUME this will happen and as a mom your are always worried about sharp corners. 

Step 26:

Find your Dremel Christmas gift from years ago and spend a while trying to remember how to put the sanding bit on. 

Step 27:

Use the Dremel to round the corners smooth up against the washer. Be impressed that the washers haven't fallen off yet and the glue is still holding.

Step 28:

Stand back and take in your finished platform and celebrate that you are in the home stretch.

Step 29:

Measure, cut, and thread the climbing rope to the appropriate height for your kid. Get distracted by the Shahs of Sunset all wearing white and screaming and throwing red cake on each other while on a yacht. Forget to take pictures of adding the rope. Figure if anyone actually reads this, they will just have to figure it out by trial and error like you did.

Step 30:

Drape your child onto the swing letting his forehead and knees rest on the floor. Be impressed with yourself because it looks like it's going to work. Smile when he starts getting excited and kicking his legs and swishing his arms and rocking his head back and forth. 

Step 31:

Pat yourself on the back when his nose and cheeks clear the floor and don't rub it.

Step 32:

Add a disclaimer that the child should not be left alone while in this contraption and should be supervised by an adult at all times. Like duh.

Step 33:
Since you are so accomplished with your latest project, feel confident that you can do anything. After your child is in bed, go back to the kitchen and decide you are going to fix the handle on the crock pot lid. Begin trying to remove the bolt and nut that you had tried to epoxy a couple months before with a utility knife. Listen to the glass pop loudly as it shatters beneath your hands. Freak out for a moment until you realize all the glass is still right in front of you and not in your eyes.

Step 34:

Go to bed and count your blessings.

To Austin: I'm Sorry

Well Austin, I had know idea that was going to happen. You were lying on the floor, and I went over and wrapped my arms under and around you and snuggled my face into to your neck...and burst into tears.

You see, you had been making fussy noises which is actually your version of crying, and I had been in the middle of something that I had decided was more important. So I let you cry for a while until it started bothering me enough to quit my project to see what you needed. 

I put my wants before your needs. Or maybe it was just your wants. But how would I know the difference since your only means of communication when I'm not right next to you is to call out with happy or sad sounds? I have to always assume you actually need something. 

And for that matter, I already knew what you needed. For the past few days you have officially been going through a stage. I'd forgotten about stages that typical kids go through because you have been so atypical. There were no terrible twos or trying threes. There were no defiant stages or tantrums. You have mostly gone with the flow unless you were sick or needed a diaper change.

But the last few days, you have cried over what can only be described as boredom, loneliness, and/or frustration. You can't move yourself, you can't play with a toy to amuse yourself, and you don't want to be alone anymore. You have actually become clingy! 

Which is great! And not great. I love that you want to hang out with me. I love that you can communicate that to me. I love that you need me.

But I don't love that you can't just walk over and play near me when you want to. I don't love that you are tethered to a feeding pump which you can tangle up in if you roll around to much unattended. I don't love that you can't just sit in my lap comfortably before you start choking and need suctioning, and that it takes all my attention and energy to hold you in place.

So when I finally got up to see about your needs and wrapped my arms around you and snuggled you, and you went straight from fussing to giggling and laughing, I couldn't help but cry...out of guilt, out of joy, out of sadness.

Grief is a sneaky creature. I thought I had finally put my failed expectations behind me. I thought I had accepted my circumstances as they related to you. I thought I had overcome my hopes being deferred.

Yet there grief was, attacking me from behind when I least expected it bringing with it all of my "I just wish that...", "It's not fair...", "How am I going to...", and "Why did this happen to me..." thoughts.

Oh how I grieve that you are trapped in that non-compliant body. I grieve your dependence on me for your every desire, dependent on my whims and time schedule. How I wish this hadn't happened to you down to the core of my being.

And I'm so sorry...sorry I delay responding to you out of laziness or putting my wants and desires first. But I also want you to know I do love you. I do want to meet your needs. You deserve the best I can offer.

Oh Austin, how am I going to do this?!

Severe and Profound {Choosing Life: Chapter 5}

{Choosing Life: Chapter 4}

September 7, 2010

She and her husband arrived at the women’s clinic together for the highly anticipated 20 week ultrasound. Although she had an ultrasound around 10 weeks or so and saw the peanut that confirmed the pregnancy, this was the ultrasound where they really get to see the baby with all its little bits and parts. But since they did not find out the sex with their first two boys, they were not planning to find out this time either. For them, it's like peeking into a Christmas present before Christmas. It takes some of the fun out of delivery day.

They were ushered into the dimly lit room where the clinic performed the ultrasounds. She had been there before with her other two babies and nothing had really changed. The technician fired up the machine, put the gel on her stomach, warning her it might be a little cool, and proceeded to move the wand over her belly. The only difference this time was that they had a television screen up over her head instead of having to crane her neck to look at the monitor.

And there appeared the baby! Moving around doing its baby thing! The tech began to take a few measurements of its arms and legs. She pushed a button every now and then so that an image of what she was looking at would be printed for them to take home.

She began looking and measuring the head when all of a sudden she seemed to be in a hurry, pushed the print button a couple times, and then left the room. When she came back, they were told they were going to be sent to a specialized ultrasound doctor with a better machine in order to get more precise measurements.

In her naivety, she can honestly say she had no idea something might be wrong. Her husband, looking at the image printouts that the tech gave them, brought one to her and said, “Look at the baby’s hand.” She looked and said, “Oh, it has a funky hand.” (It kind of looked like a claw). So they figured the ultrasound doc would be looking in more detail at the hand.

They set an appointment for the next day.

__________

September 8, 2010

She remembers going to the appointment kind of excited that they would see the baby in even more detail. They had nervously made jokes.

The gal that did the actual ultrasound was very kind. She took all the measurements like the other ultrasound tech would have done at the women’s clinic, only this time, she completed the job. Afterward, the doctor came in to have a look for himself. She remembers he was much more aggressive than the tech was when looking at at the baby, meaning, he applied a lot more pressure to her abdomen to the point that it was quite uncomfortable and it hurt. But she endured it, and they were then asked to come into his office to discuss the findings.

She was so clueless. Apparently this ultrasound doc was actually a doc for women who were having babies with problems. So after being told all the possible things wrong and the worst case possibilities that could result, they decided to break their rule and go ahead and find out the sex in case the baby didn't live to be born.

Facebook status, Sept. 8th, 2010: “Please pray for our unborn (20 weeks) baby BOY. He got a really crappy prognosis from the results of a detailed ultrasound this afternoon. The doc used the words "severe" and "profound neurological defects", as well as, he believes the limbs, especially one leg is deformed. :( “

----------

She now definitely knew what a mom feels like when faced with the absolute (not maybe) knowledge that her unborn baby will face challenges to live. It was a sickening shock, and she was actually surprised at how many (she had assumed) pro-life/Christian friends and family said they would support whatever decision she made, although she is certain now it was all said in love, fear of the unknown, and wanting to be supportive in that moment of grief. And she certainly had to consider it herself. Was she going to live out her faith and convictions and trust her God, or take the easy way out? 

That night after the fateful ultrasound, she spent hours alone on the couch, crying out to Jesus, and begging God to just take him so she would not have to make such a decision. And then she realized that she didn't have to make that decision, that God had her baby's life in His hands. So she began to just ask Jesus to cuddle and hold him (and her) no matter what the outcome. She began to feel the peace that cannot be understood.

{Choosing Life: Chapter 6}

To Austin: On Your 5th Birthday

Well Austin, you turned five today. You woke up with vigor, smiling, laughing, and kicking as if you were really going somewhere, ready to take on the world. You wriggled, arched your back, and threw your head back and forth as if you could propel yourself right off the bed and into a miracle.

I take that back. You are already in the midst of a miracle. In the beginning, I never would have predicted we would make it to this day. I really did think that even if you survived your birth, you would never make it to be 5 years old. Five years just seemed like such a long time to fight the odds that were absolutely not in your favor. Many kids with similar challenges have tried and failed.

Yet here we are. You, continuing to breathe, in...out, like you have done from day one, and me, continuing to breathe, in...out, right along with you. I remember your breaths in those first few days, shallow, raspy, tentative. Yet whether it was merely your human spirit that kept you alive or your body's natural survival instincts kicking in, I'll never know. But I don't think we were completely responsible for choosing life for you. We gave you the opportunity to live, but you had the final say. You chose life too. And in choosing life, here's what you've done for me:

You've challenged me. You have forced me to take on a project that has no end in sight, to get up everyday knowing that I have not fixed things or figured out just the right solution. And yet, you force me to keep trying. I can't give up; I won't run away. And little by little you and I make small progresses, slight changes that aid in your comfort, minor adjustments that aid in mine. And sometimes we regress. That's ok too. 

You've blessed me. I'm not talking about the things we think of when we say we are blessed like your darling little crooked smile, your belly laughs, your happy chirps, or your indomitable spirit. I'm talking about the mysterious, paradoxical, "beatitudal" blessings that occur when life persecutes. You've caused me to be poor in spirit and have to lean on others for their faith, to mourn and experience grief to depths I never have before, to take on meekness as I admit I'm not strong enough do this alone, to hunger and thirst after God for answers. 

You've loved me. You have managed to extend that trusting, dependent, newborn type love out over five years and will probably continue to into the future as long as you are dependent on us for every aspect of your care. It's a draining kind of love. A dependent love. A desperate love. You need me. But I need to be needed.

I had always held out this five year mark vaguely in the back of my mind as some kind of destination. For some reason, I had certain expectations of things that should have happened if you lived this long. I thought for sure that you would be holding your head up on your own by now, perhaps have a few understandable words in your vocabulary, maybe even be moving towards a crawl or even a walk. But now as we are hitting this arbitrary marker, I wonder what my goals for you should look like? What are my goals for me? Where do we go from here? How do we get on?

And yet. We will get on. We will wake up everyday, sometimes with vigor and ready to take on the world, and sometimes with fear and trepidation, feeling puny and needing constant care. We will be challenged, blessed, and loved by each other, by our family and friends, by our God. We will stumble, fall, and fail. We will get back up, shake off the dust, and renew our spirits. We will continue the miracle to whatever its end. We will continue to breathe, in...out.

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.

A Summer Respite {Choosing Life: Chapter 4}

{Choosing Life: Chapter 3}

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.

{Choosing Life: Chapter 5}

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.

Sincerely,

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

Choosing Life is Hard and Inconvenient {Part 3}

Choosing Life is Hard and Inconvenient {Part 2}

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

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 (armslinkingarms.wordpress.com), 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.

Choosing Life is Hard and Inconvenient {Part 2}

Choosing Life is Hard and Inconvenient {Part 1}

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?

Choosing Life is Hard and Inconvenient {Part 3}

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

{Choosing Life: Chapter 2}

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.

{Choosing Life: Chapter 4}

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?

Choosing Life is Hard and Inconvenient {Part 2}