Random Questions Regarding the Value of Life as Related to School Shootings and Mental Illness

My thoughts are in a jumble, but there's lots going on that’s taking up space in my head. Sometimes clarity comes with writing. But not always. So fair warning. It's pretty incoherent and without a conclusion...

Yesterday there was another school shooting.

Yesterday there were calls again for politicians, government, anyone to "do something, don't just pray, don't just talk, take action...create more laws, fix mental illness, make it stop."

Yesterday there were the usual debates between those desiring government intervention in hopes of eliminating mass murder and those pointing out how we allow "mass" murder everyday in the form of abortions (and even euthanasia) followed by the usual "don't change the subject" admonition from the "more gun control" side.

Yesterday someone pointed out that this is NOT changing the subject if you are looking at the big picture, that if life isn't valued when it starts or when it is ending, then why should we expect life to be valued anywhere in between?

Yesterday these conversations reminded me that legislating any of these issues, whether gun control or abortion, is just a band-aid. We can legislate all day long, but some people will still find a way to express their hurt by hurting other people, some people will still find a way to eliminate an inconvenience or to prevent or end a perceived suffering. They will find a way to live out their egoic selfish natures, to put their wants, desires, hurts, opinions, beliefs first. Some people will still value their own life, their selfish desire for revenge, or their dogmatic adherence to what they believe is a superior belief system over someone else's life.

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Yesterday I sat in a meeting with family members, a case worker, and a doctor. Our purpose was to determine the next steps on behalf of another family member who is currently hospitalized because they are refusing to eat. 

Yesterday we had to decide whether or not we could or should intervene if this person continued down their path of starving themselves. 

This person has adamantly and verbally expressed, as well as recorded in a written directive, that they do not want any interventions, specifically in the form of a feeding tube. 

This person has attempted suicide multiple times in their past. This person has tried every drug known related to depression and/or anxiety with no permanent relief. 

This person has undergone ECT shock treatments with temporary positive outcomes. This person's last experience with ECT went very wrong and they came out of anesthesia too early causing severe psychological trauma, anxiety, and recurring nightmares. This person refuses to use ECT again as a possible remedy. 

This person has suffered from a lifetime of anxiety and depression. This person has been suffering physically from severe tremors for the past couple years that were possibly induced or triggered from all of the culmination of drugs they have tried for treatment. This person suffers from extreme anxiety and doesn't feel safe unless in bed in a dark room. This person states they feel empty inside. This person is unhappy, miserable, and is passively-aggresively committing suicide using the only method they know they can control. This person does NOT appear to value their life anymore.

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What if we are able to cure or medicate mental illness away? What if we are actually able to legislate mass shootings and abortions out of existence? What if the government is able to forcibly bend people's will so that they can't give in to their egoic selves. Is this possible? Can legislation overcome humanity's bent towards putting one's self ahead of another? Will we all live safe and happy and value life then? How do we get people to see the bigger picture of how our lives are connected? How do we get people to want to sacrifice their own desires for someone else?

What if our family member's body finally succumbs to the act of starvation and starts to shutdown? What if this person can't resist intervention anymore? What if we can force our family member to eat at that point by deciding they will have a feeding tube? What if we insist that they keep on living no matter how they feel or appear to be suffering? Will that family member value their life then? Can we value their life for them? Do they need to participate in some way, show some sign that they want to live?

Can valuing life come from an external entity to be forced upon someone? Can we force people to see and know that we are all part of one Life, one Light, one Being, one Body? That by killing another we are killing ourselves? That by not valuing other's lives we can't value our own life? How can people become aware? Can it come through "doing something"? Can it come through politicians? Can it come through legislation?

Or does it need to come from within?

A Hero's Tale by Michael P. HagEstad

A Hero’s Tale

Before I lay my head to sleep
Before I pray my soul to keep
     Tell me a Hero’s Tale

Tell me a story I may recall well
So I may my grandchildren tell
Speak of a man daring and true
Doing great deeds for me and you
Who does not need great powers or luck
Who relies on his skill in the times he is stuck
Sing of a warrior who lives by his creed
Who has great honor and takes care of his steed
Hold him up for the generations to see
How they should live and what they should be
Do this now as the sun sets low
As the campfire crackles and the embers glow
The time for heroes may have come and gone
But there is time yet for a ballad or song

     So tell me a Hero’s Tale
For this time is brief and we must regale
Our values and virtues through a Hero’s Tale


-Michael Patrick HagEstad

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Three days after Michael left for his second semester as a freshman college student, I found this hand written poem on a piece of yellow tablet paper sitting on top of papers that were scattered on our work desk, no heads up, no "hey, I wrote something, did you read it?" 

So after I noticed it, I asked him when he wrote it, and he said he couldn't sleep the night before leaving, and since he'd been mulling these words around for a while, he decided at 3:00 am to just write them down. So of course, I asked him if I can publish it on my blog, and he, of course, says "do what you have to do, mom". 

What Is A Special-Needs Mom's Purpose In Life?

Last night I had the privilege of having dinner with another special-needs mom. I met this mom briefly in passing maybe a couple years ago when her son's therapy appointment was scheduled after my son's. The therapist, turned friend, introduced us, and I'm sure I smiled, nodded and politely said 'hi' in my hurry to leave. But let's face it, usually when I'm introduced to another mom there, I don't internalize the meeting because I just don't have time for strangers in my head or heart these days. And besides that, most of this therapist's clients fly in and out from around the country (or world) as we once did, and I was sure I would never see this other mom again.

Well this therapist/friend must have mentioned my blog to this mom as I know she had done time to time with other clients. I'm flattered that she does this and so grateful because it might be theraputic to unload your thoughts on "paper", but it's a whole nother level of therapy to have your thoughts acknowledged and appreciated by others*. 

Because of my blog and Facebook posts, I got to know this mom a little here and there through her comments on those posts as well as private messaging on and off. However, over dinner, I came to find out last night she might be my number one fan, that she reads just about everything I write in my blog and on Austin's Facebook page, and that because of that she had shed tears during our trauma with Austin last year being caught up in our story and experiencing it right along with us. It was humbling to think a "stranger" could be so attached to Austin and me in that way.

But its not surprising, I guess. At least not with the many opportunities we have to share our stories on the internet and in so many formats. I've been caught up in other mom's stories and their kid's lives whether I've communicated with them or not, inspired by those mom's determination and dedication, amazed at their kid's incremental accomplishments, mourning over setbacks, occasionally envious of those mom's seeming ability to do this better than me, and shedding my own tears if their kid's life ended too soon.

And I think that's why this mom and I could meet up and go to dinner together last night as if we'd know each other forever. When we connect with someone who is going down a similar path, we speak their language and we both "get it". And to have unspoken permission to discuss openly our individual trials and grievances and confess our fears to someone who "gets it" can be like hitting a reset button. It reinforces the fact that we aren't alone, and we have a chance to remind each other what our purpose in life is right now, at this moment, in this life situation. We have a fleeting momentary mission that has been laid at our feet, that we don't have to feel trapped (as I've felt in the past), that we have a choice whether or not to accept and surrender to that purpose.

And that purpose is not to be their doctor, to diagnose causes or to medically explain this or that although we will continue to seek out the best and brightest just in case something is missed. That purpose is not to be their nurse or caregiver, to feed and diaper, to administer meds and clean their spaces and equipment although we will continue to fight for the most helpful equipment and the best medications that might ease their conditions. That purpose is not to be their therapist, to teach and train these frail frustrating little bodies to accomplish the smallest tasks even though we will exhaust ourselves researching and trying every new intervention and therapy that comes along, some beneficial and some not. That purpose is not to start a foundation on behalf of our kid's rare disease or diagnosis, or to sponsor events to raise awareness. That purpose is not to host a Facebook group to connect other special-need's mom's, or to start a blog or write a blog post that might help other mom's not feel alone. These can all be good and noble things that we do and can certainly keep us busy and distracted, but they are not our purpose.

Our purpose and mission in life is one we have in common with all moms, not just the special-needs kind. Our purpose, if we so choose, is to accept and surrender to this gift in front of us, to attempt to make a difference in this one life, this one soul, to make sure this one light feels divine, unconditional love. Right now, in this moment. 

That's our purpose. That's our mission.

(Thank you, friend, for helping remind me of this last night! And don't be surprised if my next couple of blog posts aren't inspired by some of our discussion. Your acknowledgement that I seem somewhat at peace at this point on the journey has me analyzing how exactly did I finally get to this point of acceptance and surrender. And while I'll reserve the right to leave room just in case that changes (nothing is stagnant), it might be nice to document some of the things that helped me along the way, in case it can help someone else.)

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*I feel so lucky to live in this day and age of social media when you can hit "publish" and have our thoughts read and shared within minutes or hours. I think of the "good ole' days" when we might write in our diary or journal and its not until we're dead that someone accidentally discovers our thoughts on life situations or our stories. These days we have a chance to share those thoughts and stories with the world at our leisure for better or worse, hopefully for better, I suppose. So remember, Sharing Is Caring!

Skin-To-Skin {Choosing Life: Chapter 8}

{Choosing Life: Chapter 7}

January 4-11, 2011

The next 24-48 hours were a blur. And one of the events that she attributes to that time frame may have actually occurred sometime the week before since all of the memories for a few days prior to and immediately after Austin's birth sort of run together. In her mind's eye they are like a highlight reel for an upcoming movie that fade in and out or snippets put together as a slideshow that crossfade into each other. She remembers weird specific details that have become embedded as part of the story in her mind while not necessarily having any bearing on the actual birth events and may or may not even be accurate. She blames this on the anticipation and accompanying adrenaline.

Fade in. She and her husband arrive at a foyer in the hospital and wait at a counter until the NICU doctor arrives. The doctor introduces herself and proceeds to lead them through a door where they worm their way through a maze of brightly lit small rooms, squeezing between office chairs and desktop computers, into a dimly lit room in the back. 

The doctor, dressed in a long full skirt, sits on a couch-like bench. They sit on vinyl upholstered chairs across from her. The doc had just come from lunch and occasionally tries to muffle a belch. She also keeps fluffing her skirt which over time fills the room with the acrid smell of gas. These are the details that punctuate the upcoming life and death discussion. 

They are there to discuss the birth plan, what their desires are in light of the baby's ultrasound with the assumption and anticipation of his imminent demise. She and her husband had already agreed before the meeting about what their plans for Austin would be. Basically, if he breathes on his own and does not need to be put on a vent, then they want the hospital to treat the birth as it would any other complicated birth. The NICU doctor seems to be on board with this plan and repeatedly affirms their decisions. They discuss that the baby might be in the NICU to receive whatever resources he needs above and beyond breathing on his own. They leave with assurance that this doctor is part of their team and will fight for what they want. Fade out. 

Fade in. She is in the delivery room with a crowd of people milling around the room waiting for the big event. Obviously she is the center of attention. Her nurse-midwife, who delivered her first two children years before, is there to hold her hand throughout the birth while an OB is scheduled to do the actual delivery due to the unusual circumstances: inducing a medically complex baby at 37 weeks who they think is measuring as a 40 weeker. 

However, her contractions begin to get closer together, and the OB is still tied up with another delivery. At some point, her nurse-midwife is sitting at the end of the bed telling her when to push. A nurse stands on her left to help hold her left knee up, and her husband stands on her right holding her right knee. Eventually the OB shows up to join the show, but he agrees to only stand close and supervise while allowing her nurse-midwife to finish the delivery. She's very happy about this. She loves her nurse-midwife. 

All those faces. Everyone encouraging and coaching. And she's gotten the epidural, so in between the painful contractions and pushes, she feels pretty good. She even feels like she can entertain. She laughs and smiles and makes jokes, probably just a coping mechanism to distract from the surreal circumstances. At one point, she feels and hears a loud POP. She jokingly turns to her husband and accuses, "You broke me!" Everyone laughs. Fade out. 

Austin was born on January 5, 2011 at 5:06 pm. He was 6 lbs. 14 oz. His length was 20 1/2", his chest was 12 1/2", and his head measured 15".

Fade in. She is holding him skin-to-skin. He is still alive and breathing on his own, albeit not deeply. His breathing causes a faint whistling sound. She subtlety examines his abnormalities: a couple of fingers stuck together, one crooked finger, short thumbs, a wide flat, crooked toe on one foot, and what appears to be an extra toe or growth on the big toe of the other foot. His chin appears small and his ears seem small and low. Maybe his head is large, but she can't tell. Otherwise, he looks like a baby that had just been born, trying to adjust to his new environment. 

Her big kids arrive and are invited close to see their new brother. Photos and videos are taken. She is overwhelmed, trying to make sense of the situation, excited her baby is still alive, scared her baby is still alive, wondering how much longer he would be with them, wondering how long they would be waiting before the inevitable. The baby squints one eye open. The nurses cheer and tell the big kids to look at his eyes opening! Fade out. 

 

Fade in. She is still in the birth room. The epidural is finally wearing off, and she can tell she needs to pee. She sits up and swings her legs over the side of the bed and tries to stand. Pain shoots up through her body and she begins to fall. She realizes she can't bear weight on her legs. It seems like they aren't connected. She grabs onto the bed. Two nurses come along side her and support her to the bathroom. It feels like she is dragging her legs, they aren't working. The nurses blame it on the epidural, that maybe it hasn't worn off all the way yet. Fade out. 

Fade in. She is in a brightly lit recovery room. A photographer who volunteers at the hospital to take pictures of newborns and families who's babies are not expected to live has arrived. Her parents are there too along with her boys and husband. The boys still have their school uniforms on. Because she can't get up to walk or even sit up very far in bed, they stage photos with everyone gathered around her. The baby is on her chest and all the boys lean in around her. Her mom reaches in and moves hair out of her face. When she sees the picture later, all you can see is her face. She notices she is the only one with a fake pasted on smile. The rest look worried and tired. 

Right after this photo is taken someone comes and says they are taking her to get X-rays. Most of the rest of the photos are taken while she is not there. They wheel her bed out of the room and down a few hallways and into the X-ray room. The technicians tell her they need to get her off the bed and onto the X-ray table. She offers to help by using her arms and upper body to hoist her body off the bed and onto the table. One technician grabs her left leg to lift it off the bed to go with her upper body, but doesn't think to grab her right leg too to keep them together. She yelps in pain as she is straddled between the X-ray table and the bed until they finally realize she can't lift or move either of her legs on her own without pain. Fade out. 

Fade in. It has been at least 8 hours or so since he'd been born. She and her husband briefly whisper between themselves whether or not anyone should be feeding Austin yet, and if so, why hasn't he been fed? She decides to attempt to breast feed and tries to get the baby to latch on just like she did with her other babies, but he didn't seem interested or able. Shouldn't someone be concerned? Shouldn't someone be talking to them about feeding him at some point? 

The photographer is still in the room and happens to also be a NICU nurse so her husband runs some of these questions by her. She seems concerned too and advises him to ask the next NICU nurse that comes in to check on Austin. When a nurse arrives, her husband asks if Austin is going to be fed. The nurse replies, "Oh, you want to feed him?!" She leaves for a while and then returns with a tiny orange tube which she threads into the baby's nose. She then proceeds to pour a tiny bit of formula into a large syringe at the end. She doesn't explain anything, but she says she will be back later to give more. Fade out. 

Fade in. Two doctors are standing at the foot of her bed, the OB and an orthopedist. Her husband is standing beside her bed. The OB is grinning in a goofy manner, almost giddy. He said he's never seen anything like this in his entire career. He said he did find a couple of records of it happening in some of his research.  

They are telling her their options. The X-ray shows that her pelvis is dislocated. Officially, it is called diastasis symphysis pubis which is the separation of normally joined pubic bones. In her case and the reason it is unusual, the ligaments had completely snapped apart (hence the POP she heard) instead of just loosening or stretching. The options she is given are to either have internal plates or an external fixator installed, both achieving the goal of holding her pelvic bones in place until the ligaments could regrow from nothing between the pubic bones. It would take 9-12 weeks. If she chooses the internal plates, she would have to return to have them removed during surgery in about a year. If she chooses the external fixator, she would return to have it removed in an outpatient procedure in about 9 weeks. She chooses the external fixator and surgery is scheduled within the next few hours to have it placed. Fade out. 

Fade in. It's dark. She isn't on the OB floor anymore, she is on the orthopedic floor. She shifts her body and tries to raise an arm. It hits a metal contraption that is apparently attached to her body. Hitting it sends vibrations throughout her whole system. She pushes the button in her right hand for morphine. Fade out.

The external fixator or what
she fondly referred to as her "erector set" 

Fade in. Still dark. Through squinted eyes she can see a bassinet with a sleeping baby to the right of her hospital bed. She wonders why he is there and not in the NICU. She doesn't care. She pushes the button for more morphine. Fade out. 

 

Fade in. She's awake and holding the baby, wheezing and whistling as he breathes. She has an oxygen cannula in her nose and wrapped up over her ears. She wonders if she should take it off herself and put it on him. Fade out.

Fade in. The baby is in the bassinet on the other side of the room. Her husband is sitting in a chair a little to her right. She is still woozy from pain killers and not that interested in the in and outs of newborn care at this moment. But she wonders why is he still alive? And why is he in the room with them with no NICU attendants? Fade out. 

Fade in. They have a nurse friend who also has experience with her own medically complex kids who has been showing up for moral support. Her husband confers with her to get her thoughts. She also seems concerned that Austin isn't in the NICU, and that he doesn't seem to be getting the care he needs especially since he now seems jaundiced and nobody has done anything about it. She encourages her husband to go over to the NICU, find the doctor and start demanding answers to questions. He leaves and tracks down the doctor and tells her that Austin seems jaundiced and asks why he isn't being treated with a bilirubin blanket and given more care like the other babies in the NICU. She points to a bilirubin blanket in the corner and tells one of the nurses she could put that on the baby "if he thats what he wants." Fade out.

Fade in. The room is flooded with natural light from the window to the left of her hospital bed. A meeting has been called and her husband, parents, and the NICU doctor are sitting at the end of her bed in a semi circle. She is just listening from her reclined position, still a little groggy from pain meds.

Even though in their meeting before Austin was born the doctor had said she would support whatever decisions they made, that if he is breathing on this own, she would give him the same kind of care she would give any other baby born with challenges, she repeatedly advises them now to take him home and quit feeding him. "Comfort care" is what she calls it. Fade out.

Fade in. Nothing seems to be making sense. Her husband starts to get really suspicious and peppers each NICU nurse that comes into the room with questions. Eventually one of the NICU nurses confides that the NICU doctor's personal soapbox is that she believes keeping babies like Austin alive puts a burden on society; the nurse hints that if we want him to have a chance to live, we need to get him out of this hospital.  

Their nurse friend stops by to visit, and he rehashes the meeting we had with the doctor. She suggests they request to take Austin to Seattle Children's for a second opinion, a hospital with staff that has regular experience with kids like Austin, and a hospital that treats her own medically complex children.  

Her husband tracks down the NICU doctor again, and tells her we want a second opinion; we want to give Austin a chance. He requests the doctor transfer Austin to Seattle Children's. The NICU doctor seems pissed that her advice is not being taken and storms out of the room.  

That afternoon with encouragement from their nurse friend, her husband makes phone calls to Seattle Children's NICU to find out what they need to do to get a second opinion there. They say the NICU doc needs to put in the request for the transfer. This seems like an impossible task since he'd already experienced her balking at the idea this first time it was mentioned, but he asks the NICU doctor to make the request anyway. Fade out.

Fade in. It's now been about 5 days since Austin was born. They are sitting in the hospital room chatting about what the next step needs to be when the NICU doctor surprisingly arrives with papers to sign and announces they are taking Austin to the NICU to prep him for transfer to Seattle Children's for the next morning. For some unknown reason the doctor has decided to comply and makes the arrangements against her will with no explanation. Perhaps Seattle Children's' doctors has helped convince her. Fade out.

She and her husband found out a few months later when a large bill for the life flight came in the mail, that since the NICU doctor refused to admit it was a "medically necessary" transfer, insurance was denying the claim. They had to spend the rest of the year appealing and collecting every document they could to prove why he needed the transfer. The NICU doctor continued to claim throughout that fight, that she could have provided the same amount and quality of care that Seattle Children's had so the transfer wasn't medically necessary. And while the Seattle Children's doctors adamantly disagreed that our local hospital could have provided the expertise Austin's challenges needed, it still begged the question if she believed she could, then why did she not?

Fade in. The ambulance crew has arrived and are ready to take Austin and her husband to the airport. However, it is reported to her that they are delayed because they find Austin still not ready for travel. His O2's are dropping too low as well as not meeting other basic criteria like standard blood work that they require. The NICU doctor has still not put him on oxygen or seen to his basic care. Fade out.

Her husband reminded her later that as part of Austin's prep for the transfer, they had taken him to the NICU to run all the tests, put him on a monitor and brought him back to my hospital room. However, the monitor constantly alarmed so my husband asked them about it. They took him back to the NICU for a couple of hours and returned him without a monitor. They had decided the monitor was malfunctioning and told her husband nothing was wrong so Austin didn't need a monitor.

Her husband also reported later that that the medics told him during the flight to Seattle that Austin was briefly stopping his breathing which caused him to d-sat for a up to a minute before recovering. They had to keep increasing his oxygen in his box on the plane to prevent the d-sats. They asked him what he knew about it, if Austin had been on oxygen at the hospital, and if this was typical. He told them no, Austin had not been on oxygen, and he had no idea if it was typical. He told them about the monitor being "broken" when they tried to monitor his oxygen at the hospital. The EMT's couldn't believe that Austin had not been on oxygen at all the entire time since he'd been born, how a doctor wouldn't see to that basic need.

Austin finally getting oxygen
and basic medical care at
Seattle Children's Hospital

Because of that NICU doctor's attitude, she has felt especially responsible for having decided to give Austin a chance at life even though her husband was there making decisions with her. Because of this doctor, she has felt determined that Austin not be a burden on anyone, hence her reluctance to ask for help even from family members or friends. She was even reluctant at first to seek financial support through the government programs he was “entitled” to or to appeal reimbursement for things the insurance company had denied. For her, it was not anyone else’s “burden” to bear. It was a decision she made between herself, (her husband, of course) and God.

The End

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I began writing the story of Austin's birth on December 25, 2013. After Austin was born, I was sitting with friends in a coffee shop, friends that had been there through each event as it occurred, who suggested I write his story. They said they would for sure read it and were sure others would want to also. They may have been joking, but I took it to heart even though it took me two years to get to the point where I could sit down and begin recording his story. However, I'm pretty sure they've kept their promise and read every chapter.

Austin's arrival shook my belief system and everything I thought I knew about faith and God to the core. I'll be honest, I had the blind faith. Once I got through the initial shock, I was gung-ho that this was going to be THE miracle story. Glory to God! With every doctor's appointment, I half expected they would come out and say, "Well, we don't know what happened, but his brain has totally been restored. We can't find anything wrong. It's a miracle!"

I even believed this into the first couple years of his life, that there was a miraculous restoration just waiting around the corner for him, for me. If only I believed hard enough, if I said the right words in prayer, if I yearned for it with enough intensity, if I had the mustard seed sized faith, if I announced publicly everyday that "God's got this!", if my husband and kids did the same. God had always had my back, right? I mean, I'd never had to experience anything hard so in my mind that meant he had my back. I was blessed. And if he was going to give me something hard, then it must be for God's glory, and he would be faithful to give me a miracle. I just had to trust.

But there were no magic words or formula. Nothing dramatic changed. Yes, there were things that weren't as bad as we thought, but there were also things that were worse. So what can I claim is a miracle and what isn't? It seems to me its all luck of the draw. God isn't causing bad things so he can perform miracles. Bad things just happen. It is what it is.

It's taken me four years to finish writing all the events of Austin's birth story. I originally thought I'd sit down and write it like a book, submit it as a short story to a publisher (which I know absolutely nothing about since I'm not a real writer). But instead I found I needed to go very slowly. That I could only dribble out a little at a time.

I also found that I'm impatient. I want instant feedback, hence the blog format worked quite well. I could write a "chapter", get a little encouragement before I geared up for the next one. So in a way, my "short story" is now in outline or rough draft form sprinkled amongst other blog posts that reflect the changing state of the rest of my life over the last four years. I wonder how disjointed it sounds if someone other than myself were to read it from Chapter 1.

I'm not the same person I was when I got pregnant with Austin. I'm not the same person I was when I gave birth to him, and I'm not the same person I was when I started writing his story 4 years ago. But over the entire 7 years, I've survived grief, anger, and depression on my path to overcoming my disappointment, both the initial disappointment and the later disappointment when I didn't get that miracle I expected.

So guess what I learned? Overcoming is the miracle. Learning how to accept and surrender is the miracle. Surviving the grief is the miracle. I love this quote from a book I read this past year:

"And whether you believe in miracles or not, I can guarantee that you will experience one. It may not be the miracle you’ve prayed for. God probably won’t undo what’s been done. The miracle is this: that you will rise in the morning and be able to see again the startling beauty of the day." William Kent Krueger, Ordinary Grace

My Morning of Mourning The Loss Of Something I Never Had. Thank You #Supermoon.

Early morning on Dec. 3, 2017 my eyes pop open as I realize my stomach is doing that queasy thing. It is the third morning of recovering from the "Please God, Kill Me Now" stomach bug that had just ravaged our family. I roll over in bed and look at the time, 3:33 am.

Well, of course it is. I'm not surprised. I've been seeing repeating numbers all year. Usually it's 11:11 or 4:44, but sometimes its one of the other combos. At first it was kind of fun, but now it seems ridiculous. I doubt I'm actually seeing them more often than they ever occurred before, but for some reason my mind is super aware of them these days.

I toss and turn the rest of the morning trying to go back to sleep. However, at 7:00 am, I watch my phone alarm chime. I hate being awake for the alarm. For some reason the anticipation of watching the numbers turn to the time I set the alarm for and then bracing myself for the sound is much worse than waking up to the alarm from a dead sleep. Usually to prevent that from happening, I just grab my phone a couple minutes before and turn the alarm off.

If I'm going to have any chance of getting Austin and myself ready for church (husband is already up packing for the airport), I know I have to force myself to get out of bed immediately. I have learned that I can't permit myself to have a snooze option because I will resist and resent getting up the longer I lie there. Plus, I would have to anticipate that alarm again. No thank you. I put my feet on the floor.

Sitting in the dining room, I have zero energy and can't decide at this point if I am hungry or still nauseous. I slump forward onto the dining room table while trying to choke down a small bowl of soggy Cheerios.

With my head on my arm, I stare out the window past the wooden blinds at the terra-cotta colored wall 5 feet from the house, and I ponder the colors. That burnt orange color gets to me sometimes, but it seems to be the official color of the desert so everything has to be painted burnt orange to "look natural" and "blend in" with the dirt (I mean, desert). It does do a nice job of setting off the green tree leaves in front of it, though. So I'll take that. I watch the leaves wiggle in the breeze.

My attention moves to the collection of things stored in front of the window: a collapsible wagon that isn't collapsed but filled with random things, a special-needs stroller, two child sized cots, and my shooting gear in the corner -
one small, black duffle bag containing my shooting jacket, a fleece liner, an elbow pad, shooting glove, sling, eye protection, ear protection, and notebook; a scope stand; and Michael's toolbox I've been borrowing filled with small bore ammo, an ammo box, various hex wrenches, and scope among other things Michael had needed for shooting small bore and air rifle over the years.

And...wait for it...I start to cry. Surprise, surprise. And oh yes, I am grieving shooting gear.

For months, ever since Austin's brush with death last January, I've been wrestling a decision about whether or not to move on from learning to shoot small bore. And suddenly I knew the answer in that moment. I am giving it up. Sorrow washed over me for the loss of what could have been, but never was. How can I grieve the loss of something I never had? It is my super power, that's why.

I started learning to shoot from the coaches at my son Michael's practices over the last couple years. Over the weeks, they gradually loaned me an amazing gun followed by fantastic sights, some basic equipment, and with their encouragement, I imagined myself as being pretty good. It was even mentioned I might be a natural like Michael. And with that ego stroke, I thought, if I could find the desire and discipline to practice, practice, practice, I could probably be great! Plus, I really wanted to make these coaches proud of me and feel their time wasn't wasted getting me equipment and training me. I am a people pleaser, you know.

Oh, the stories I made up, too: "Overwhelmed, Anxiety-Ridden Special-Needs Mom Finds Stress Relieving Outlet By Shooting Small Bore In Her 40's. Becomes Famous." Because, we always become famous in our dreams and imaginations. Otherwise, why bother dreaming? #amIright?

But reality has finally set in. While I used to be motivated to shoot with Michael, he is off to college now and on to other pursuits. Which makes me happy. Small bore and air rifle served its purpose for him. However, without him, I don't have any desire or discipline on my own to get up early on a summer Saturday morning to drive an hour away to practice for 3 hours, get super sweaty, and then drive an hour home. Or get up VERY early on a winter Sunday morning to go freeze my fingers at a practice match all day.

So while in theory becoming a famous, female small bore shooter sounds very rainbows and butterflies (because, I'm not going to lie, once at the range, its really fun, and you think you want to come back all the time), and it sounds remotely possible (except for the hard work and lack of desire and discipline), the truth is, I want to be lazy and slow moving on the weekends, a feather in the wind, or a slug. I want to have all the options and not have to do any of them. So I cry.

And then I stop and realize I am accepting that that's who I am. And I feel light! Like this weight I've been carrying for months has lifted. I don't have to shoot anymore. I don't have to shoot anymore. While its fun, and the people are absolutely awesome, and I got to spend so much time with my oldest son doing something together and creating memories, I can walk away. I can walk away. I can go on to other pursuits that maybe include Austin and my husband and middle son, Jonathan. I can.

4-8-17 I was finally getting my groups tighter.
Sights just needed slight adjusting now.

4-8-17 Patrick and Michael travelled to
Colorado Springs so Michael could compete in the
2017 Air Rifle JO National Championship.

4-22-17 Last day I practiced. Last bull of
the day shot with 5 rounds.
I had finally gotten everything aligned.

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

P.S. Where can I get a set of football pads and helmet...Jonathan? :-)

P.S.S. I got cool pictures of the #supermoon2017 rising at 5:55 pm on the evening of Dec 3. That's right, people. :-)

Supermoon 2017

6 Ways I Deal With The Funk

Every now and then I wake up and feel a depressing funk or sadness wash over me (you can read a couple of my descriptions here and here), my very own dark little cloud. I don't think its clinical depression (although it runs in my family) because I eventually emerge from it whether after a day or so, or a week or so (or even a month or so). So looking back, I've found it can usually be chalked up to one of a few things.

• It might be an unrealized expectation and subsequent disappointment. I'm a planner, and when things don't go according to plan, I feel it. I mean, I REALLY feel it. I would go so far as to say that I experience a short round of grief (denial, anger, bargaining, depression and acceptance) sometimes even over what should be a minor disappointment.

• It might be cyclical grief. Although I've surrendered and accepted certain hard, life circumstances, the day to day of those circumstances can still trigger a short period of anger, sadness or longing for what could have or should have been, again and again. 

• It might be project related. If I have an upcoming deadline or commitment that I know I need to set aside time for, my procrastination tendencies kick in, and I delay starting and/or finishing until I've made myself and everyone around me completely miserable about it. 

• It might be hormone related. Every month that physical cycle we all know about involving the cleansing of the old and replacing with the new can potentially wreak havoc with my emotions. Mentally I resist change so maybe my body does too in its own debilitating manner. 

• It might be health related. If I'm feeling sick or tired (or both), I also find I'm much more sensitive to the weight of the world (even if that "world" is just other family members). Sometimes overeating or eating too much of the "wrong" food seems to trigger the funk.

So over the last couple years, I have discovered a few ways of dealing with this depressing funk if I remember to take a moment and realize what is happening. But I also have to remember what the ways of dealing with it are, too. So I decided to make a list for myself that I'm also sharing here with anyone else who might need some ideas:

1. Give Yourself Permission and Grace 
Give yourself permission and grace. Try to discover what triggered the funk in the first place. Set aside time to nap/rest/think. Give your body and mind time to process. If you are feeling overwhelmed with work or a deadline (or life - period), and you have procrastinated, acknowledge and accept this about yourself and give yourself forgiveness. Be realistic about yourself, that this is who you are, or this is how you work. Don't let it surprise you. Accept it. Anticipate it. Plan for it.

2. Unload on Someone
Tell someone you trust about the funk and everything going on in your head, whether good or bad thoughts. Tell someone as soon as you notice the signs. If you don't have someone to tell, get a spiral notebook (or join a private Facebook group that allows venting, or start a blog) and write about it. Write however it feels helpful. (I found writing in third person helps me distance myself from some of the more difficult circumstances.)

3. Breathe Like This
Sometimes the depressing funk can feel like and/or cause anxiety or panic so remember to breathe. (There are many descriptions of how to breathe in order to alleviate anxiety on the web, so just I'll describe what I discovered by accident - and through observing my medically complex son - that works best for me.) Breathe in a big breath through your nose, down into your lungs, and hold it as long as possible. Let the held breath push on your lungs and back of your throat like you are about to let it out, but don't. Then when you can't hold it any longer, let it out in an uncontrolled exhale over the back of your throat and through your nose, keeping your mouth closed. You can allow a moan or a hum when you do this, but you don't have to force it. Don't push the breath out, but don't hold it back either. Once you've exhaled that breath, give in naturally to the next few breaths as your body recovers and takes in oxygen. Don't force these breaths, just allow them to occur naturally. Then, after your body has recovered, do it again. (I usually do it several times until I reach a natural stopping point where my body feels calm, and I don't have to do it anymore at the moment.)

4. Let Out Noise and Silence Your Mind
Find a space where your can be alone (like in a car), where no one can hear you. Listen to whatever music or white noise will drown out your thoughts. (Usually for me it is something with an intense driving beat and lots of electronic and percussion instruments where you can't really discern a melody, voices or words - probably whatever music my parents would call noise.) Play it loud enough so you feel it in your chest, but don't hurt your ears. I call this volume "just below painful". Then sing, yell, or scream as loud as you can. It's possible this could be another form of the breath work mentioned above. But it also serves the purpose of drowning out the negative commentary in the mind that often accompanies the funk. It's after effect is like white noise for the brain so that it has time to forget and reset.

5. Make a Tiny Check List
Make a list of 2-3 small goals to accomplish the next day before you go to bed the night before. Set an alarm and don't allow it to snooze. As the day permits, work on those 2-3 small things. Once you accomplish them, reward yourself even if that means allowing yourself to take a nap or sit on the couch and watch a movie. Do this everyday until the funk passes.

6. Only Think About the Very Next Step
Take your eyes off the big picture for a moment. Determine and only focus on the very next step that needs to be done right now. Sometimes just putting a word on a page, drawing a line on the paper, or picking up one piece of dirty laundry and putting it in the hamper can get the ball rolling.

So that's it. A reminder list for me, and maybe an idea list for you. I would love to know if any of these methods work for you. I would also love for you to share your own methods with me.

Pelvic Floor, Duct Tape, and a Voice from Beyond {Choosing Life: Chapter 7}

{Choosing Life: Chapter 6}

September 10, 2010 - January 3, 2011

The next four months went by in a blur, and the rest of the pregnancy was, well, a pregnancy. Between the bouts of crying in the closet or at church and putting on a brave face laced with dark humor (sarcasm) in between, it wasn't much different than her other pregnancies except for the looming new expectation. Only three things happened that specifically stood out in her mind.

One of the things included the baby stretching or extending out in a way that would cause extreme pain. Instead of that lovely feeling when a baby rolls or stretches and a little foot or elbow draws an arc across her stomach or pushes out and a little lump appears for a second, it would instead feel like a foot being jammed down into the floor of her pelvis for several seconds at a time. She wonders now if that could have been some kind of seizure.

Facebook status, Sept. 11th, 2010: “Every morning I wake up and wait to see if I feel movement from our baby as every expectant mother probably does. With his death sentence already pronounced, I praise God that Austin is alive and kicking one more day :) I sure love this little guy, but then i have always been a sucker for the underdog.”

Facebook status, Sept. 28th, 2010:  “23 weeks tomorrow! Austin's still movin' and a groovin' :)”

Facebook status, Oct 13th, 2010: “25 weeks :)”

Facebook status, Oct 16th, 2010: “thank you to everyone still praying for us...had a bit of a reality melt down last night consisting of thoughts of "I can't do this..."...much better today though. especially when I don't really know what it is that "I can't do" yet. :)”

Facebook status, Nov 3rd, 2010: “28 weeks.”

Facebook status, Nov. 14th, 2010: “My back hurts! (you have to say this like Jim Gaffigan so it sounds like a joke and not like I'm complaining, although…)”

The other unusual thing she experienced was the most painful stretching of the skin across her stomach. She attempted to relieve the pain by using duct tape over a wash cloth to try to "pull" her skin back together thus reducing the burning and tearing sensations.

Facebook status, Nov. 25th, 2010: “can the skin on your stomach just completely split open? I don't thnk my stretch marks can stretch any further.”

Facebook status, Dec. 8th, 2010: “33 weeks. Jonathan was laying his head on my stomach last night talking to Austin...got kicked in the head three different times...the look on his face was so funny.”

Facebook status, Dec. 26th, 2010: “Lamentations 3:19-24”

Facebook status, Dec. 29th, 2010: “Went for ultrasound Monday and 36 week appt. today. I'm measuring at 40 weeks and Austin's weight is estimated to be 7.5 to 8 lbs. But nothing is going on down there. So I'm at full term uncomfortableness, waiting for something to start so they can induce. :)”

Looking back she wonders if the painful stretched skin which left wide shiny, silver stretch marks, the fact that she measured 40 weeks at 36 weeks, and the unbelievable amount of amniotic fluid that came out when they broke her water when being induced, meant she had polyhydramnios which apparently can accompany fetuses that have an impaired swallowing reflex.

Lastly, the day before going in to see about getting induced, she was sitting in her room on the edge of her bed. She was alone, feeling scared, crying, and for some reason, she was thinking about her grandmother on her dad's side. She and her grandmother had gotten close for a time before her grandmother passed away. Anyway, she wasn't just thinking about her, she was talking to her in her mind. She was considering how hard life must have been back in her grandmother's day and thinking how strong she must have been, so she was asking her grandmother how she was going to have the strength to get through this birth and the subsequent expected death.

A few seconds later, her husband nudged her and handed her the phone. She took the phone in a teary daze and said hello. Her grandmother's voice answered back!

At least it sounded like her. It took her a moment to realize is was actually her aunt, whom she rarely heard from, but who had a similar sweet, southern accent that at this moment when she was thinking about her grandmother and wishing to consult her, was her grandmother's voice. Her aunt asked how she was doing and proceeded to speak encouraging words to her.

How did her aunt know to call right then?

Facebook status, Jan 3rd, 2010: “Thanks for everyone's notes in my messages, comments and on my wall. It means alot that ya'll are still praying for us. We might be getting close...going in tomorrow to see if we can induce before my stomach splits apart and i explode.”

{Choosing Life: Chapter 8}

Where Do I Go From Here?

I sat next to Austin's wheelchair in the clinic waiting room intently focused on him and his needs. Or at least I was pretending to be. He was actually fine at the moment and didn't really need my attention, but "attending" to him has become my defense mechanism when we are in public.

Unfortunately, even though I write about being ok with the stares of strangers and being ok with questions about Austin, I still find myself avoiding those situations if at all possible. I avoid eye contact. I busy myself with "entertaining" Austin. I dig through the diaper bag. I adjust his harness. Or I just look at my phone, the ceiling, the floor. I do not make eye contact unless absolutely necessary.  And I don't know why because I really don't mind answering questions about his differences or letting children or adults try to interact with him. I want those things. I really do. 

However, deep down, I probably do know why. I'm still afraid of those instances when I catch someone staring or being curious, and I begin to smile or encourage an interaction, and they shy away instead. Somehow, when that happens I feel all the lovely rejection emotions for either myself or on behalf of Austin. Or I feel shame. I know. I mean there's nothing to be ashamed of. He's just a kid with a few medical challenges, none of them his fault. And of course, everyone says they aren't my fault either. So it can't be shame....

So there I was being all busy with Austin when a young mom bottle feeding her new baby plopped down on the bench next to me and started asking all the probing questions. I braced myself to be happy, enthusiastic, and positive. I mean this is who I want to be. Let's do this.

"How old is he...?"

"Does he have Downs or ....?"

"When did you find out about...?"

"Oh! That's when we found out too!..."

Wh...wait...what?

And that's when I came out of my little internal world of "all about me" and noticed for the first time the baby she was holding was a tiny newborn, probably a preemie, with Downs Syndrome. The young mom was in her teens.

I'd never seen a preemie up close before. I'd also never seen a newborn baby with Downs.

"...yeah, my mom is going to be here in a minute...she's helping me...my boyfriend won't even touch her yet..."

"Oh", I stammered. And as the gears in my brain slowly shifted away from me and my anxiety over being questioned about Austin, I realized this overly chatty young girl was looking for support from another mom who appeared to be surviving this special needs life. 

But I had no plan. My mind was spinning, searching for the right thing to say.

I asked if she was getting support services. She said yes. At some point, I warned her that she might experience a period of grief over unrealized expectations, and that it was ok and normal. She said she thought her boyfriend was experiencing grief. I assured her with the most confident smile I could muster that eventually all of this would feel very normal. That things wouldn't seem so daunting. I think I told her it took me 4-5 years to come to this point of acceptance. Not sure that was the best thing to mention.

Then her name was called at the front desk.

"Can you watch her for a minute?" she asked as she set the baby in a carseat and nudged her in front of me.

Caught off guard, I stuttered an "um...sure" and watched her go check in. She was so young, and yet already being handed a huge challenge in life, something I didn't experience until I was 40. She was just a baby herself, nervous, searching for hope...from me.

I stared at the baby in the carseat, so tiny, so innocent and beautiful, and beginning to fuss and cry just like any other typical baby. I spoke to her in my high, mommy voice trying to soothe and assure her she was going to be ok, that her mommy was coming back in a minute. I rocked her carseat with the toe of my shoe.

I thought about how young this mother was and how she was just at the beginning this journey. How much strength she would need to get through the next few months or next few years. How many tears she might shed. How scared she might be. How strong she was going to become as she advocated for her child's health, education, and acceptance.

This whole encounter was a wake up call I haven't been able to shake. While not always easy, caring for Austin has become my normal. So it makes me wonder what my role is in this special needs/medically complex world? After having been consumed with my own disappointment and grief for so long, and now that I'm finally coming out of that phase, do I have a bigger purpose? Do I even have time "to give back"? Do I want to?

I don't have these answers yet. I'm reluctant to jump into something just to be doing something. I guard my energy fiercely. I've even been thinking lately that I don't identify as much with other special needs moms. There was a time I lived and breathed every word other moms wrote about this life. But lately, I find myself impatient with the words they write. It was as if they were needed for a time, they served their purpose, and now will serve their purpose for someone else. But maybe not me anymore. I've actually been having sort of an identity crisis. 

So for now, I think I'll just try to be more aware of my surroundings especially in a clinic or hospital where I may be more likely to encounter someone looking for support. I'll try not to be afraid to make eye contact. And at minimum, whether in person or here on my blog, I can continue to share my story, and say with some degree of confidence, that I eventually perceived my situation as manageable.

Faith of a Child {Choosing Life: Chapter 6}

{Choosing Life: Chapter 5}

September 9, 2010

The following night she found herself curled up on the couch, crying into her husbands arms, second guessing all of her heroic thoughts from the night before. Fear of the unknown dominated her mind.

She remembers details like the overhead ceiling fan light being on and seeming too bright, the sage green of the carpet, the floral pattern on the couch cushions. She also remembers her oldest son descending down the stairs. With each step he was telling her that he had prayed and it was going to be alright. He was convinced it would be. And that the baby would live.

In the simplest way they could, they had told their kids about their unborn baby's deformities and brain malformation, preparing them for the worst possible outcome. So at the time, these words coming from her now eleven year old washed over her with assurance and comfort. She so wanted those words to be true. She wanted her son to experience positive results of a childlike faith even though she secretly feared her he would be let down and challenged in his faith at what she considered too young an age.

But she let him keep speaking, keep assuring, keep being positive. What else could she do, but grasp onto those words coming unprompted from a child and hope they were truly inspired by God? Even if they weren't, she thought often throughout the rest of the pregnancy about his willingness to lay it all on the line and declare his faith as a result of having no previous experience of doubt or disappointment to cause him to do otherwise. Oh to think and trust like a child again.

So whether they were inspired or not, she took those words from this child and held on tight. Whenever she doubted, she thought of him coming down those stairs full of intentions to comfort and care for her. She's not sure he ever knew or even knows now how much he confirmed her decision to continue the pregnancy, come what may.

Facebook status, Sept. 9th, 2010: “We are overwhelmed by the wisdom and faith God has given our kids right now. The things they are saying about their little brother and our circumstances can only come from one Spirit. We can certainly feel the prayers of the People right now. Thank you.”

Facebook status, Sept. 9th, 2010: “We let the kids pick their little brother's name today: His name is Austin Chase HagEstad! Michael chose Austin "b/c that's a cool name and cool people have the name Austin." Jonathan chose Chase after Chase Reynolds who plays for the Griz "b/c mom, when he is a big man, and if he plays NFL football he will need a football name!’ “.

Speaking of childlike faith, that second son soon to turn 9, brought a brief moment of innocent levity by wanting to give his baby brother a "football name" as if there was no doubt there could be a chance. She was later told about one of his prayer requests during classroom devotions at school, that his friends should pray for his little brother because his leg was on backwards! She was told he figured he could at least be some kind of cool kicker.

Austin's short leg and club foot ("leg on backwards")

{Choosing Life: Chapter 7}

I Am Not A Caregiver

She jolts awake to an ear piercing screech that sends shockwaves through her nervous system. Hoping its just a startle from a bad dream, she allows herself to start drifting back to sleep when another screech jars her system again. She lies there with her eyes wide open now waiting to see if it will continue.

It does. And now its becoming louder and more incessant, demanding. She huffs and sighs, flips back the covers, slowly rolls up to a sitting position on the edge of the bed and rests her feet on the floor. She reluctantly stands up and walks the 8-10 feet over to her son's bedside. He is six years old and still sleeps in their room because of his penchant for having seizures, choking on secretions, and his inability to reposition himself.

It's 2:00 am this time. Sometimes its 3:00 am or 4:00 am. But this time its 2:00 am, and on a night her husband is out of town. This is key to note because most of the time she will lie in bed and wait, knowing her husband, the true caregiver, will typically jump out of bed, multiple times in a night if necessary, to check on their son.

Her husband continues to get up until he figures out the problem whether their son just needs to be rolled over, suctioned, have a dry rag put under his face, a diaper change, or just comforted due to a seizure or bad dream. He does all this without complaining, and even though his sleep is interrupted and lost just like hers, he is able to lie back down and immediately start snoring. The next day he is business as usual even if tired.

She, on the other hand, once she has gotten up, especially if it takes several times to figure things out, will take 1-2 hours before she can eventually fall back to sleep. The next day she is often tired, resentful, and grumpy, often lashing out at family members for no reason. She might sleep all day leaving the care of her son to her husband, who has a home office, or the nurse if they have one scheduled.

Once she arrives at his beside, she proceeds to go through the motions, checking items off the list, trying to solve the problem as quickly as possible, knowing every minute counts if she hopes to accomplish anything the next day, even if it's just successfully getting out of bed and seeing to her son's basic needs.

But the screeching and crying doesn't stop. So as a last resort, they usually assume their son is in some kind of pain whether it be a headache from the hydrocephalus, soreness around his hips, some residual pain from having a seizure or choking, or from constipation. She trudges to the kitchen in a fit of angry tears to prepare a syringe of crushed ibuprofen and water.

Returning to her room, she pauses his food pump, administers the medication through his g-tube, and pushes "run" on the pump. She leaves the lamp on across the room in case she has to get up again, and slumps back into bed.

Everything within her wants to scream or throw something. Her mind fills with angry resentful thoughts regarding her life situation. She turns up the white noise app on her phone, puts a pillow over her head, and sobs.

"I am not a caregiver!" she laments.

She did not seek out this role. She does not have a special gifting or heart to care for the long term sick, the terminally ill, or those approaching death. She did not pursue a career as a nurse. She is not a trained therapist. She is not a doctor. At minimum she has a heart for the underdog, and that's about it.

This gig chose her, fell into her lap, and she hates it. And she hates that she hates it. She wants to feel "the calling" as some might refer to it. And on some days she thinks she feels it. But usually those are the good days, the easy days, the days she thinks she's got this. Those are the days she's met his needs successfully or came up with an out of the box solution to one of his challenges, or just left his care to her husband or nurse so that there was the appearance of ease.

Instead, most of the time, especially on the hard days, the beyond difficult days, she carries the heavy mantel of guilt full across her shoulders, the mantel of guilt for hating the caregiving role as opposed to the glorified superhero cape caregivers are normally attributed.

So unless being a caregiver has the minimal requirement of not running away...and she's at least met that (so far), she is NOT a caregiver and does not want to BE a caregiver.

-----------

P.S. You might be thinking, "If she isn't a caregiver, then maybe she shouldn't have taken on the roles of wife or mom either." And you would be right. She barely succeeds in those roles too.

To Michael: On Your Day Of Graduation From High School

I know today is not the end of our relationship, that you aren't being kicked out the door into adulthood, never to be welcomed back. But it's a day that represents the culmination of all the blood, sweat, and tears that have been shed for you since the day you made your debut into this world. You were born on your due date, with a relatively short labor until the very end when you made us wait 30 minutes while you took your own sweet time. But that thick dark hair, those long eyelashes, and that irresistible smile were worth the wait.

You have always been that way. Taking your time on things. Not conforming to how everyone else does it. Finding your own path that made sense to you. And not wanting to fail when you did finally try something. We would attempt to teach you new words, get you to repeat them after us. But you would sit there silently listening. We would wonder if you had even heard us. Then three days later you would use the word perfectly in a sentence. You also had excellent descriptions of the things around you, using words you knew to describe the object you didn't know. We knew exactly what you meant when you said "milk, cold door".

You were often a quiet child, reserved, with a big smile with moments of silliness. So sweet to everyone around you. When something did bother you, we often didn't know because you suffered quietly in a corner by yourself or in a heap on the floor. Your big hazel eyes and the previously noted eyelashes had teenage girls at the dude ranch where we vacationed fawning all over your three year old self. You could easily carry on a serious conversation with adults. You loved being the center of attention.

You loved people and new experiences. We found an innovative preschool that you attended three days a week. They encouraged unstructured play and led you on many excursions throughout the city. But it wasn't enough for you. You looked across the street at the kids playing at another preschool and asked if you could attend that school too. You didn't want to miss out on anyone or anything so you attended both preschools.

You were a bright kid. Academics came fairly easy to you, and we rarely had to help you with your homework. You still loved people and got along amazingly with most of your teachers and adults in general. You also loved the kids your age and yearned to be included in their groups, however, you were often challenged as to how to relate to them. You seemed to be the true definition of an old soul, and sometimes there seemed too much of a disconnect between their interests and yours. We could only hope that time would eventually shrink that gap as we watched you begin to build walls to protect your heart.

You had to learn to march to the beat of your own drum and be ok with that. You tried many sports and activities throughout elementary and middle school that kids your age were doing, and while you liked the activities, you didn't find anything that just clicked with you or that you excelled at until you went to a Christian summer camp that had a riflery segment each day. You discovered you had a natural ability at shooting targets, and although unconventional, you finally found a sport that you enjoyed and that would end up giving you the confidence that would propel you through your teen years.

In high school, academics still came fairly easy for you. You also sampled several clubs over the four years. You surprised us by dropping out of the rifle club your freshman year and eventually immersing yourself in clubs where you had to debate or give speeches in front of audiences as well as onstage activities like choir, school musicals, and plays. You had a chance to display more of that love of attention and (re?)discovered a love to entertain.

For what seemed like forever, you only claimed to have acquaintances and not friends. You kept your walls up with most and doled out your trust sparingly. You were careful who you called a friend, weighing their commitment and loyalty over time. It's been nice to see you let your walls down a little more during your senior year and let more people in. I hope they realize the gift they've been given.

You are independent, determined, and opinionated. You found a college that seems like a perfect fit for you almost 2000 miles away from me. You can't wait to spread your wings and prove yourself without me looking over your shoulder. And although perhaps unwittingly, you've been working hard at making me ready to let you go. Because while you make me laugh, you challenge me to think, and you are one of the lights of my life, you also make me want to pull my hair out, scream, cry and slam doors.

And that's a good thing I guess. I need some kind of reason to let you go. And I know down deep you will be fine without me. So maybe that's what I'm fighting against. YOU WILL BE FINE WITHOUT ME.

(I just don't know if I will be fine without you.)


Loving you no matter what,

Your not-always-able-to-keep-her-emotions-intact mom

Beyond Difficult {Part 3 - You Know He's Complicated, Right?}

Beyond Difficult {Part 2}

They returned to the rental where their other two boys were waiting. They made Austin comfortable as best they could on the floor in the living room so he could be around the commotion even if he was sleeping.

There were no gifts to open, but only requests of Monkey Bread which was their Christmas morning tradition. Her husband had purchased the ingredients, but they had found out the oven was broken when they first arrived. She quickly googled "microwave monkey bread" on her phone and soon they were eating bowls of brown sugar and cinnamon soaked biscuit bites.

They found a pack of Uno cards and started a game. She kept glancing over at her son thinking since it was a couple hours past 6:00 pm, he would soon start fussing for meds or something. At least, she thought, he would start waking up. Or become less puffy.

The Uno game went on for awhile. Finally someone won and they could be done. She got up from the dining room table and went to sit by her son on the floor. She lifted his arm and it just flopped on the floor. She couldn't get a response from him even when she pried an eye open. He was lethargic and still completely puffy. He hadn't had anymore wet diapers either.

She made her concerns known, and they debated what to do. The thought of going back to the hospital was not desirable at all. She especially was looking forward to sleeping in a regular bed that night since she had pulled all the night shifts so far. And the last thing they wanted to do was to arrive worried about something that ended up being insignificant. They looked through their paperwork for a number to call, but their choices were to go to a minor emergency clinic or go to the ER at the hospital.

Her husband had been looking on his phone while she read through the discharge papers. He found a number to the pediatric floor that he had been given back in 2015 when they had forgotten the feeding pump charging cord. He dialed it and it rang straight through. He was able to talk to the floor doc that had cared for their son the night before. She told them to go straight to the ER, she would meet them there.

They both took him, but as soon as the hospital started running tests and trying to get an IV in, she left her husband in charge and went back to the rental to get a night's sleep. She was running on fumes and finally had to let go of whatever control she thought she had.

"...This includes all pain meds (even Tylenol), muscle relaxers, and seizure meds. He can't have ibuprofen bc he is already at risk to bleed bc of the edema or something about his blood vessels already leaking into surrounding cells. Therefore he is in extreme pain from the surgery. We can tell bc his heart rate in high 160s and 170s, his body is tense, he is shakes if you move his legs, and he moans if awake. They did allow him to have a little morphine, however it did not touch the pain. His daddy is with him bc I cannot watch him in pain without being able to help him."

"...whatever it is, and his liver would then have a chance to recover. We decided he had been through enough suffering, and we would risk it. I had to wake up and tell the boys what we were doing, and then go to the hospital immediately. There were tears and it was a scary decision, but not a place we hadn't been before. We had to make life and death decisions when we got that 20 week ultrasound, and again when he was born. So after having given him a chance at life in the beginning, we now had to decide about his quality of life vs interventions (or non-interventions) now. So we decided we would make him as comfortable as possible knowing the risk, and then he could decide if he wanted to fight to stay here with us. We met with the pediatric liver specialist to discuss options based on 2-3 scenarios. This included discussing the possibility of full recovery, but mostly the possibility of complete liver failure, possible liver transplant, or palliative care. The main doctor in charge (not liver specialist) was so concerned about Austin's condition that he was worried that if we sent the boys home on their scheduled flight Wednesday without them coming to see Austin, they may never see him again. He said these things fighting back tears. That. Was. Hard. The floor docs continued all day to analyze the different scenarios, run tests, do scans, wait for results, and attack the various possibilities from all angles. He got meds to make him pee, protein meds to make his blood vessels quit leaking the water causing the edema, antibiotics just in case, and even a dextrose drip to raise his very low glucose, plus the muscle relaxer and Valium. All we could do was wait to see what would happen and pray for the best for Austin. I know I personally spent some time reading y'alls encouraging comments and prayers. At the end of the day (last update by doc at 11:00 pm), we are told we are not out of the woods. His liver is still considered to be failing at this time based on the liver enzymes and needs to recover. However, their are glimpses of things possibly turning around. Words like "guardedly optimistic" were used, and some numbers were showing a slight trend towards the better. Liver transplant was taken off the list. However, chronic liver damage could still happen. And while they are encouraged by some numbers and the trend, the numbers aren't at normal levels yet. And some numbers are going the wrong direction and causing them to be perplexed and without an explanation why. We are also still waiting on virus tests to see if we can even know what caused all this. The funny thing is, none of this is a direct result of the actual hip surgery that we came for. That part all looks good. Dr. Yngve has been here to visit just about everyday except Christmas, and twice today. The only thing I'm concerned with is the fact that Austin had been in so much pain and been having the prolonged muscle spasms, that I haven't been able to do any ROM the past couple days. Small concern, I know, but one of the few things I was supposed to be in control of. Where we sit right now though, is that most of Austin's spasms and pain now seem to be taken care of which was the initial concern that sparked the plea for prayer. So that prayer was answered (for all you checklist types like me). All I can say is continue to think of us."

"...thing is that his heart rate has been in 100s-120s all day with no meds on board. We also haven't really seen the spasms anymore, but we have been told to watch for seizure activity, and they are prepared to give him something for that. He seems really comfortable and quiet, almost too quiet. We know he's been through the ringer, but we will feel like he's recovering when he starts to become a little more interactive. It's still hard for him to keep his eyes open bc of the puffiness so maybe that's all it is. I like the docs here, they seem to be really trying to figure this out. It was a little disappointing when the Christmas crew left, and a new New Year's crew came in. You always wonder if there will be continuity of care. But so far all seems to be fairly seamless. Tomorrow he is scheduled for a biopsy of his liver. They are hoping to get more clues into what caused his liver to stop working, and clues to how to prevent it from happening again after it recovers this time. There really is no end in sight right now. We don't know. We will probably send the boys home Friday, and continue camping out here in Galveston."

"...were very short, but were happening every few minutes. They decided to give him a low dose of Valium that seemed to have curbed the cluster. I've seen one short one today, but no clusters or long seizures. If you have been following along, you also know he was scheduled for a liver biopsy. While I was at the rental trying to sleep off a cough and sore throat that tried to attack me last night, Patrick told me it went smoothly and fairly quickly. And the funny thing, when he came out both eyes were open instead of swollen shut. He's also had more energy today and has been binge watching Go Diego in between short naps. He's becoming more vocal with lots of little hums and sighs. Lots of super cute yawns. However, the old teeth grinding has resurrected. Not sure what that's all about. He is also peeing and pooping all by his little ol' self. This is huge since the liver and resulting edema meant an infusion and a med to make him pee and to retain the water in his blood so it wouldn't leak out. As I understand, his body is doing it mostly on its own now. They also took the catheter and foley out, and he just has a diaper now! He's still slightly puffy maybe, but WAY better than when we brought him in. So anyway, everyone seems hopeful he is on the mend. Still don't know what caused it. Prelim biopsy results maybe tomorrow with final results in a few days. Their biggest concern now is the worry that it seemed to happen so fast, and how to prevent it from happening again now that we know the liver may be very sensitive or compromised. This is a positive post! So please share with anyone that might be spiritually or emotionally invested in him. And we just thank God as he continues to carry us through, whether the report be dire or hopeful."

"...so far. Also, the docs seem to feel lucky that this case went the way it did. They don't always end this way. Basically if we had delayed bringing him in any longer... What does this mean since he survived? It means we get to learn all about the liver. It means no more ketogenic diet for seizure control, and his seizure meds will all have to be reevaluated. It means I'm tired and not sure I'm ready to take on a new diagnosis or disease."

"...huge blow out that probably happened during his last seizure. It. Was. Nasty. Up his back, all up and in and on his brace. It was all hands on deck and we used soooo many wipes. We flossed the nooks and crannies of his brace with wet wipes, but there are still smudges and places we couldn't get to. Could you imagine if that happened in the 3 hour flight?! 😆 We had a huge entourage waiting for us when we arrived. They were all talking about how impressed they were with the docs in Texas and how thorough everything was and how everyone already felt like they had a good handle on what has been going on. He got weighed and has had an X-ray. He just got a new IV, and he was NOT happy about that. Waiting on feeds too. He hasn't had any food or fluids since we left Galveston. I forgot some things move a little slower in a big hospital. We had gotten spoiled in Galveston where supplies mostly appeared quickly, and docs were right outside the door. Is it weird I'm going to miss them?"

"...It's the never ending song..."

"...connected to the oximeter tonight. I've unpacked, received new supplies, figured out new food and med routine, and he's tucked in bed. Unfortunately the Dora The Explorer "We Did It" song has been going through my head all night. I'm attaching for your enjoyment too."

The next 3 weeks were very challenging not only because she had to care for this little guy who had just had surgery and been brought back from the brink of death, but she had to do it alone (with sporadic nursing help) because not mentioned in her Facebook posts was the fact that her husband ended up going to the ER and being hospitalized about halfway through the stay at PCH. She was in the middle of trying to recover from her own bout with the flu when she got called by hospital staff to return to PCH to take his place. She saw her husband for a total of two hours over the next 3 weeks until he got discharged himself.

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While there are three parts to this story, she wrote the first part about a week after coming home and posted the second and third parts almost 2 months later. She was quite bitter and shell shocked when she wrote the first part and considered revising or removing the first post since her words contained quite a bit of sarcasm and disdain for medical technology and interventions. She decided to leave it though. She feels the words and tone were exactly how she felt at the time, and often how she feels when her son's care becomes beyond difficult. She has a love-hate relationship with medical technology and interventions.

It should also be noted that this experience has pushed her towards pursuing palliative care when considering the need for future interventions. She feels this has always been how she thought she was handling these decisions, but she's ready to make it official and get a team on board.