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}

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