Beyond Difficult {Part 1 - To Intervene or Not To Intervene}

"Not compatible with life"
"A drain on our society"

These are the phrases she hears over and over in her mind whenever caring for her medically complex son becomes beyond difficult. However, looking back, although legal, she still could not have killed him before he was born, but maybe she shouldn't have forced him to live after he was born either.

She had her chance to avoid life getting beyond difficult. The doctors had said, "His diagnosis is not compatible with life" and "He'll be a drain on society." "Take him home and give him comfort care," which basically meant take him home and let him die with the aid of hospice and morphine.

Die?! She couldn't take him home and let him die! How dare they suggest she take him home and let nature take its course just because his body is not compatible with life.

But guess what? They were right. His body is NOT compatible with life. He has an overriding brain malformation which at any moment could just tell his body to shut down, but in the mean time, it causes a condition called dysphasia which means he cannot swallow without aspirating food into his lungs. When she tried to feed him by mouth it created enough pain so that he refused to swallow and probably would have ended up with chronic pneumonia if he continued to try. He was destined to die from either starvation or some kind of lung disease.

Therefore, he would not be alive today without the medical technology and intervention of a g-tube. She forced him to eat when his body could not naturally perform that function. And once she made that choice, she could not change her mind later when things got beyond difficult. It was a one time decision that she can never go back on lest she be accused of negligence at minimum or murderer at maximum.

So now that he had officially become a drain on society with all the expenses of medical technology that entails, she has to play the game of picking and choosing which medical interventions will give him the best quality of life on top of the general maintenance and costs of keeping a medically complex child healthy which includes an abundance of healthcare and mobility supplies and medications as well as hospital stays for common illnesses because they turn into life and death situations so quickly.

She had to choose to get a shunt, a high tech valve implanted in his skull with a drain tube snaked into his abdomen, when his head kept increasing exponentially in size because the fluid around his brain didn't drain on its own from his skull. At the time of his surgery, it was not yet considered a life or death situation. There are cases of children living years with enormous heads from hydrocephalus. But they can't lift their head, and the pressure inside the skull can be painful, and caregivers have difficulty moving and caring for a person with an immensely large head so they elect to have brain surgery where a shunt is implanted to drain away this excess fluid before the head size gets out of control.

She had to request a suction machine to remove excess mucous from his mouth because although he was not eating by mouth, his body still generates its own secretions along with the occasional reflux of stomach contents which he tries to swallow. Because he aspirates when he tries to swallow the secretions and refluxed food, he was still experiences pain along with dropping oxygen levels with the chance of pneumonia. By jamming a small plastic vacuum tube into the back of his throat and along the sides of his mouth while he fusses and squirms, she can help his airway stay clear,  prevent his O2's from dropping for too long, and stave off respiratory illness.

She's had to choose to do another brain surgery called a fenestration where they go into the brain and poke holes in all the non-communicating fluid filled cysts to force them to communicate. Basically the shunt was not able to drain the fluid from these cysts because they were closed off from the other fluid filled areas. They were continuing to grow and put pressure on what brain exists, continuing to cause pressure, head growth, and additional seizures.

When X-rays showed signs of developmental dysplasia of the hips, again not a life or death situation, she chose to get a relatively non-invasive surgery called SPML along with a hip orthotic/brace in hopes of preventing complete dislocation of the hips along with the anticipated accompanying pain.

When that didn't fix the joint migration, she chose the next level of hip surgery with the unfortunate acronym SLOB with the hopes that it would prevent the hip joint from dislocating so she wouldn't have to resort to the very invasive bone-cutting procedure called a VRO. The surgery typically has a four day inpatient stay, followed by a 3 month recovery using a movable brace instead of a cast to prevent loss of range of motion and to promote healing. It was going to be simple, and just another one of those medical interventions that she has had to choose from that would increase his quality of life while draining society.

Beyond Difficult {Part 2}

There Was Only Time To Survive

Shell-shocked.

She's always had words in her head during times of crisis, physical or emotional. Questioning words. Analyzing words. Angry words. Despairing words. Story words. If she could get these words out of her head and written down, the experience has a chance to become more manageable, endurable, laughable even.

But this past month it was all she could do to stay in the moment and not give up. Rest was elusive, and there really was not time to sit and process the situation, there was only time to act or sleep.

Really, only time to survive.

But now as the clouds are slowly parting, and she's getting glimpses of her normal again (even though one of them is still in the hospital), she needs to decompress. She needs to write. She needs to unload this past month and try to make sense of it. She needs to process everything she has thought and felt so that she can move on or let it go.

Yet, she has no words. She's shell-shocked. She's stunned. She's been attacked, kicked in the gut, discarded in the corner of the alley.

Events of this past month have caused her to go back and question again these past 6 years. She's analyzed the crucial decisions. She's gotten angry over naive hopes, and she has despaired over decisions made in faith.

She doesn't know where she stands anymore on a few perhaps moral or ethical issues, and she's not sure those around her, whether it be her family, church, or special needs community (especially them), would support her voicing her thoughts on these issues out loud.

So perhaps that's why she feels she has no words. Perhaps the words she does have aren't palatable or relatable or acceptable, and therefore she fears writing them down.

She might be alone with these thoughts. And being alone is a scary place for her.

Those Cruel Expectations

Standing behind the minivan with the hatch up, she unlocked the wheels of her son's Zippy Tilt wheelchair and rotated it so its side was facing her. The base of the chair sat at waist level in the back of the van. She paused and took a deep breath, exhaling slowly as she remembered the last time she was at this building.

Several months ago, she and her son, Austin, had just left the "wheelchair clinic", an amazing state funded department that provides wheel chairs to kids with qualifying conditions like cerebral palsy. In their possession was a brand new, sparkling blue pediatric wheelchair; a larger replacement chair that would provide for all his growing positioning needs, but also one that felt like it weighed 500 pounds. Because of its weight, she had to carefully remove the back and arm rests before lifting each part into the back of the van, and with the anticipation of having to do that 2-4 times a day in the Phoenix summer heat looming ahead of her, she broke down and cried.

Today however, they were here for a special needs car seat evaluation so without anymore hesitation, she tilted the wheelchair towards her, threaded her arms through the chair, grasped parts of the metal structure on the opposite side, and pulled the chair towards her body so the closest arm rest pushed tight against the top of her thighs. She then performed an awkward arm curl and as the chair started to lift, she bent her knees slightly hoping to protect her back, pivoted 90 degrees, and gently lowered the chair until it rested on the ground.

She loaded her son into the wheelchair along with all of his equipment and entered the building.

After checking in, they were ushered into a room where they met the physical therapist that would perform the evaluation even though the mom had already researched, talked with another mom she trusted, and had decided beforehand which special needs car seat she wanted and planned to request.

"I want to see the Convaid Carrot 3," the mom said with confidence. She had to say it with confidence since she figured that they would initially balk at that request. The Carrot is an expensive top of the line special needs car seat, but she knew her friend had gotten one from the same clinic so she figured she could get one too.

"We don't offer that one," replied the therapist.

"Well, I know my friend got one here so I want one too," declared the mom.

"I'm sorry, maybe they've changed the rules since then, because we don't offer that car seat. It's very expensive," the therapist stated while pointing to other seats. "These are your options," and she proceeded to describe them.

The mom glared at the therapist while her inner voice threw a fit.

I knew it! Its not fair. I had a feeling I'd be told no, but then I thought maybe I'd get lucky. But now I'm going to have to expend a ton of energy and time if I still want it. Or concede to pay out of pocket even though others got it covered. But I don't even know if it's the right one for him since I can't test it. But my friend got one for her kid so I want one. But I'm tired. I don't want to fight. I don't have the energy. And it would delay an already delayed process. We needed one two months ago, and this one they are offering is already going to take up to 3 months to get. I'm not like other special needs moms. I can't fight. I don't want to fight. I'm not a momma bear. Poor Austin. I wonder how many times he gets the short end of the stick because I don't have the energy to fight for stuff. I give up too easily. Anyway, will fighting for stuff really change anything? Will it give me some kind of feeling of accomplishment since I have failed him on so many other levels? I can't believe I came in with an expectation. I know better than that. Expectations are just guarantees of disappointment.

As these last thoughts entered her mind, she realized her stupid red nose and watering eyes were about to reveal the fact that she was going to reluctantly relent so she turned away for a moment to get her oncoming tears under control. Perhaps noticing her internal struggle, the therapist said she needed to go ask someone a question about side supports.

When the therapist returned, the subdued mom submissively began to ask questions about the car seats she had been told WERE available. She chose a style that seemed to have the best features for her son, seated him in a test model, chose the lime green color, and signed the papers to confirm the order.

She left frustrated and in tears. Again. Only this time, she wasn't disappointed in the equipment. The car seat would do its job just fine. In fact, it may have features that actually provide for her child's needs better than those of the other seat. And she certainly hoped they wouldn't be putting her already physically compromised son in a car seat that wouldn't support him and do its job.

She was angry with herself for going into the appointment with an expectation. The one thing she had been trying to overcome the most these last few years since Austin was born was having expectations. Failed expectations always lead to disappointment. And she's tired of living within a bubble of disappointment.

As long as she keeps her expectations in check, there is nothing that can disappoint. There can only be surprises. Without expectations, nothing can come into her life that, while maybe perceived as unwanted, she cannot adapt to or overcome including: Austin's unique needs, an overly heavy wheel chair, and now, a lime green car seat.

I Feel Sad

"I feel sad," announced my internal monologue. Out of the blue. While I was making a salad.

I have no idea where these thoughts come from or why during the day while doing the most mundane things, they pop up in my head. I mean, yes, eating a salad is not my first choice. I would definitely be "happier" with a big bowl of pasta or even pieces of cold pizza. But for my brain to verbalize this in a sentence always catches me off guard.

My first instinct is to start looking around and analyzing my circumstances. "I'm sad? Ok, thanks brain, I didn't realize that, so what's making me sad?" Then it's very easy for my to start identifying all the "problems" around me and to justify that thought with, "Yep, I AM sad. I SHOULD be sad." The longer I search and dwell on all those things that should be making me sad, the sadder I get.

I don't think these thoughts have anything to do with me having clinical depression or at least I'm going to deny they do. They come and go. Of course troubling circumstances bring on and intensify sad emotions, and I have experienced depression and grief, but sometimes I don't feel the sad emotion until the words just pop up like a cartoon thought bubble over my head while I'm making a salad. Maybe it's just the shadow of grief that C.S. Lewis describes in A Grief Observed: "Part of every misery is, so to speak, the misery's shadow or reflection: the fact that you don't merely suffer but have to keep on thinking about the fact that you suffer. I not only live each endless day in grief, but live each day thinking about living each day in grief.”

It's interesting the way that it starts as a thought which in turn, if I entertain that thought, becomes the emotion. And once the sadness has settled in, I am learning I can decide what to do about it. If I can notice and be aware of it (which seems to take practice), if I can stay present which has the affect of shutting off the thought cycle in my mind, then usually I can just watch and experience it until it goes away. I may still cry. I may still have tears. My eyes will burn, and my nose will turn red. It's not about resisting the emotion once it begins, it's about being aware enough that I can identify it, say "I see you", and then wait. And whenever I have tried to do this, the sadness usually fades away. I like that its something concrete I can try to do.

But then again, sometimes I don't want it to go away. I want to wallow. I want to feel the misery. I want a reason to eat the ice cream. I want to let my thoughts run away and indulge my mind in all that's wrong with the world and feel the weight. I want the cleanse. And that's ok too. The point is I can choose. And I am aware that I can choose. The hard part sometimes is just remembering that I can choose.

Balance, Stumble; Balance Again

Summer ending
Hiking beginning
Oppressive heat
Air damp
Monsoon season
Saying farewell
Tight lungs
Deep breath

Rhythmic pace
Crunching footsteps
Brown sand
Tan gravel
Black rocks
Red boulders
Small, large
Sharp, smooth
Balance, stumble
Balance again

Noisy nature
Clicking crickets
Snaps, skitters
Secretive lizards
Squawks, screeches
Twittering birds
Hissing shrub
Startled hiker
Balance, stumble
Balance again

Silvers, greens
Rough bark
Smooth stems
Swollen succulents
Isolated flowers
Ripe cacti
Soft appearance
Sharp reality
Balance, stumble
Balance again

Intense sun
Gentle sky
Whispering breeze
Promised relief
Seasons intertwined
Nature's dance
Full circle
Momentary pause
Balance, stumble
Balance again

Heated skin
Sweaty overlay
Deep breaths
Lungs expanding
Easier now
Lazy muscles
Reawakening strength
Rediscovering soreness
Balance, stumble
Balance again

Silent mind
No thinking
Awareness, presence
Only being
Watching watcher
Quietly watching
Invading thoughts
Reactive emotions
Balance, stumble
Balance again

Tomorrow's expectations
Fear, anticipation
Yesterday's recollections
Sadness, longing
Watcher witnesses
Presence returns
Thoughts flee
Peace emerges
Balance, stumble
Balance again

Maybe Tomorrow

Maybe tomorrow I won't sob at the memory of loneliness.

Maybe tomorrow I won't relive like it was yesterday feeling left out through my kid's eyes.

Maybe tomorrow I'll talk to him about the gift of sympathy he's been given by being the one not invited.

Maybe tomorrow.

The Suctionator 5000 - My Favorite Piece of Medical Equipment

I try not to use the word "hate" very often, finding it rare that I need to be so strong and decisive in my opinion. It's like using the "F" word. I only REALLY need it when I accidentally kick something barefoot or drop something heavy on my pinky toe.

But I HATE Austin's suction machine - the obnoxious lawn mower roar, the slimy mess dripping from the Yankauer, the cleaning of the swirling thick secretions from the canister....

Ugh. Yuck. Dry heave.

*****

I don't remember much from the first 24 hours after Austin was born. During birth, "somehow" I dislocated my pelvis (basically my pubic symphysis snapped apart like a wishbone requiring immediate surgery, an external fixator screwed into my pelvis, and morphine at the touch of a button...a story for another day). But there was a point when I was lucid and lying in my hospital bed when my husband and I looked at one another and mouthed, "Are they going to feed him?!"

Upon my husband's vocalizing this question to the nurse and after the nurse's look of surprise, bewilderment and the comment, "Oh, you want to feed him?! (I know, how dare parents of a medically complex Dandy Walker baby with an iffy prognosis want to feed their child!), a NICU team arrived, shoved a thin rubbery, orange tube up the baby's nose, down his throat, into his stomach, and then through this apparatus bolused a few milliliters of formula. I was told it was an NG tube.

I had never seen anything like it and don't remember asking why they were using one, but somehow they knew by whatever tests they do that he did not have a strong swallow reflex, or his brain couldn't coordinate a strong swallow with his breathing, or his high arched palate wouldn't allow his tongue to create the bolus. Who knows now. These are all guesses in hindsight because I don't remember if we ever questioned or were told the reasons.

I also don't remember trying to nurse him right away after he was born, but my husband said I tried, and Austin wouldn't latch. I don't know if they tried a regular bottle at that time either, but remember trying 7-10 mL at a time at home along with feeding therapy. I guess we thought somehow the reflex would eventually kick in. He just needed practice.

But there was always this wheezing, rattling, and drowning sound in the back of his throat. We were told because of his swallowing issues (dysphagia) that he was probably aspirating as evidenced by his refusal to take any more drops from the bottle by the end of the day. He was in pain. However, he had not been hospitalized for pneumonia so I guess we thought it wasn't that bad and would be overcome.

But just over a year later when I couldn't take listening to Austin suffer anymore, I recorded his breathing and posted the link on Facebook asking for advice from the medically intuitive cyberworld (other moms on Facebook). The post can be read here along with the link to the accompanying recording: https://www.facebook.com/austin.chase.2011/posts/335191056514591.

Based on the sage advice in the comments section from my expert mom friends, I requested a prescription and got the suction machine a couple days later.

We affectionately, as in the most facetious use of the term, nicknamed it the "Suctionator 5000" (my big kids were watching a lot of Phineas and Ferb at the time).

We have used the Suctionator 5000 regularly for almost 5 years now. Depending on his position it may be needed up to every few minutes (we have to use it more often if he is sitting up or lying on his back). It is the most frequently used piece of medical equipment in the house, in the car, in restaurants, in stores, at school productions, at football games, at the beach, at preschool, at church, and every other location where we GET to cart this nasty noisy machine with us.

And I HATE it.

It embarrasses me because it draws attention to his struggle, and because I feel like all eyes are watching us. I can't subtly and quietly save his life. No. The air compressor-like engine along with the dentist chair, wet-slurping sound has to announce to everyone within what feels like a 1 mile radius that I am saving his life.

To make matters worse, it stinks - like feet. Within the first week of operating the machine, I began adding a small amount of mint smelling antiseptic mouth wash to the canister each time I emptied and cleaned it. No one had to tell me to do this. It was a problem that HAD to be solved. A NECESSITY.

The internal battery also has to stay charged to work. All. The. Time. We have accumulated multiple charging cords which are located in the bedroom, the living room, the minivan, and now the school van.

It's heavy, and it always has to be carried or mounted close to wherever Austin is.

And Austin hates it too. He fights occasionally if it's being needed too often.

And did I mention it's GROSS??

So I HATE it.

But I SHOULD love it.

It saves his life everyday. It has prevented his O2s from staying in the 60's,70's or 80's. It has prevented aspiration of his secretions especially when he is sick. It has prevented pneumonia and multiple hospital stays. It has prevented needing a surgery for a trach.

So I LOVE it. I love it because it gives me one more day of that smile, one more day of that giggle, and one more day of that belly laugh.

I love it because I LOVE HIM.

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