It’s happening. September 3rd 2005 (the day of my son’s brain injury) keeps happening every day. Kernicterus keeps coming for us. Somedays it rushes and somedays it just rolls softly. Today was a gut punch. In plain black and white, it was more than clear – another swallow study fail. Food just keeps slipping down the wrong pipe.
Last time this happened it seemed temporary and fixable. Today we went in hoping and praying that things were better, that we’d regained ground, healed up. But these past few months, when it came time to eat, I always wanted to hide. I felt like the worst mom ever. I didn’t want to feed my son. The panic inside of me was paralyzing. Now I know why – mommy sense – all wasn’t well.
I fell into deep sobs tonight as we sang “It is well with my soul.” All is not well. This is not well. And yet the song rings true. It’s not well in my body. It’s not well in his body. And it’s not even about currently being well in my soul. It’s becoming well in my soul. As I sing, as I say the words, it is becoming well in my soul. I am becoming.
We grieve as our boy looses another ability / a central human experience, another barricade built around him, and we maybe sneak our food and abandon family dinner times for a while as we reconfigure…and we pray.
And we’ve been praying, and today God answered. He said, “No, not this time.” He didn’t forget. He didn’t abandon. He said, “This is isn’t what you wanted and yes it hurts like hell – but it’s for a good reason – a reason I won’t fully reveal on this side of eternity. Trust. Be still. Rejoice. I love you. I love your boy. You are becoming. In this, in Kernicterus, you are becoming.”
It’s the question I keep hearing/asking myself. It comes at me when I’m on my phone, when I’m cuddling with my youngest on the couch (and also on the phone), when I’m going to bed…and window shopping on my phone – I hear it. I hear it in that catching moment – in that split second where I experience something good or different and have the overwhelming desire – the desire to share. When my fingers run to share my world through the world. wide. web.
Am I slow enough?
I’m not sure. Slow? Slow enough to be present? Slow enough to experience joy with my family? Am I slow enough to share a moment with my actual voice?
It’s the topic of our time. It’s an enormous challenge for our kids. The glare of perfection. The collaborative sharing of our best moments makes for something harsh, somehow. It’s burning so many of us.
My friend is working diligently on the “Wait Until 8th” / “Wait a bit” movement here in Kansas City – helping kids be slow enough – slow enough to enjoy their lives in real time. Slow enough for us to enjoy our lives in real time. As I’ve been watching her work and struggle to balance it all in her own little family, it inspires me to ask the hard questions of myself – what am I modeling for my kids? Do I want them to be as busy on their phones as I am?
What if. What if we all could all extract ourselves for our alternate realities for a day? No facebook for a day? Uninstall the app/apps for a day? What if there were crickets on all social media platforms, just for a day. It makes me laugh out loud. Facebook a ghost town?! Impossible. And hey, a gimmicky name isn’t enough, right? Hash tags. #handsfree2 #handsfreetue #slowtoo #slowtue? More to the point – I CAN do this. We can. Right?
I’m not sure if I’ll ever completely part with social media. It’s a LIFELINE for our family, for my son’s rare condition. Facebook groups have helped us in thousands of ways – in navigating therapies, surgeries, meds, finding resources. With our friends’ help we’ve been creating a way for our son where there is no way – no treatment plan, no cure. Through our kernicterus group we’ve been empowered with loads of information that is available no where else on the planet.
Social media is by no means the root of all evil for us…but it is a new and unpaved road. We all move so fast and often upon it that it has deep ruts, ruts deep enough to tip us over. And I have fallen, so many times, many. When I run in the deep paths of the wagon wheels in front of me, I just can’t get out. I have to find a way to move alongside the ruts but not in them – to be slow enough. I must consciously choose to use social media, but not let it use me. I no longer want to not run in the racing rutted path – one vehicle racing ahead and a thousand other perfect images right on my tail – all. the. time.
So for now it’s just the questions:
Am I slow enough?
How can I run outside the ruts?
Can I hack a Hands Free Tuesday?
A friend asked me how she could be a good friend to her friend in crisis. This is my text (yes, be very glad I don’t text you this much!). It’s just one point of view, but maybe it helps.
There is a time to weep. So often we all feel like we have to end things on a good note and project positivity…but that can leave someone in crisis feeling very isolated and they may need a friend to just BE with them.
And a lot of the comfort that I’ve seen people offer to myself and others in crisis seems to be more to the purpose of making it so that the speaker can walk away comforted, to give them enough of a degree of separation to go on functioning in their own life. It’s not intentional…it just is. I saw my daughter start doing that at FIVE, so I’m pretty sure it’s deeply programmed in our bones…but on the receiving end it can just hurt sometimes.
When my boy suffered his brain injury almost everything anyone said to comfort fell flat, or even worse, cut. “Kids are resilient.” “I read about someone who is wonderful and has had a great life with cerebral palsy” …those things stung. We were grieving the altering of my son’s life, hearing that he may never hear, walk, talk etc. He lost a big chunk of the future he was born into and those words put a gulf between us and dear friends and family that breathed them. We trusted that God would use it, but denying it or projecting someone else life on our boy just left us feeling more alone.
Lamentations, 3 – I think, spoke to me during a dark year of isolation – “it is good for man to bear the yoke when he is young.” “It is good for man to sit in silence.”
Those aren’t words I’d say to someone in grief, ever. But it’s good to be mindful of while they are in crisis. This may be that part of their journey – where they need to pull in. So would pray even more deeply for them and realize that God will use all of this…and that they simply have less time for friendship. Anticipating needs, providing meals, helping arrange care for other kids…that can be what they need more than words. Care packages with little things and sweet cards were so nice during the first years of our crisis. At this point I have a hard time remembering who sent the date night in a box or the popcorn and chocolate, but they were such sweet kisses, some of them from folks I’d never met.
A friend came over once when I was sick and home with my baby boy that never slept, struggled to eat etc. Her lemon and honey soaked tea spoke more than any sermon. My mom reading me psalms until I fell asleep while my babe was on the other side of the wall in the ICU was one of the sweetest moments and the very best comforts. Feeling David’s laments and his tears and outcries – I knew this could be bad and sad and He was still there and greater things were at work…that I could fall asleep with tears in my eyes and He would hold me.
A lot has been going on out in the wilds of Kansas these days. As many of you know, I lead a non-profit called pic-K, a calling that guts me and fills me up!
In October, just 1 month after my son’s brain surgery and weeks after our VP Susan’s daughter’s brain surgery, God had great mercy and we were able to throw together an amazingly fun and special gathering for well over 100 folks that we highly esteem. We had incredible help and I count them in that number. At this very last minute conference, we got the chance to work with Oliver Hughes Productions and throw together an even more last minute video, a video that we are very proud to share and to encourage you to pass on as well.
This video needs no into. It tells our story and it reflects it through a hall of mirrors…and I’m not sure where/when that hall ends.
Perhaps you can spread the story too.
One click. One share could save one of the 9 babies who will develop Kernicterus today.
#jaundicecandothat #jaundicemattered #preventableraredisease #rarediseaseawareness
I wrote this a couple weeks ago. At this point we are closer to a new normal, but in order to keep you folks updated, it is worth posting.
Her wisps of hair-sprayed brown granny curls shook a bit as she pointed in our direction and said the words. “Look at that good little boy!” and turning to her grandson, “You need to sit still and behave like that good little boy.”
And there we sat, or at least the late 20’s versions of ourselves, pretending we didn’t hear. We pretended for what seemed like a very long hour. We were trembling somewhere deep in our souls while we sat in our booth at the seafood dinner, first vacation, new baby girl in my arms and our 3-year-old son strapped into his adaptive feeder seat.
She said it a dozen times if she said it once, pointing to our young boy every time. Our little boy who was clearly restrained and mute with what looks/looked like spastic quadriplegia as the exemplary little boy to her able bodied, and by all appearances – well behaved (at least by our standards) grandson.
We never said a word. I think we were just struggling to breathe.
A month ago our boy was injured in a new way, and a word that I’ve feared his whole life became a reality. Aspiration. Two weeks ago it was confirmed…and it was bad. The swallow study revealed that even tastes of food, sips of drinks could mean pneumonia.
And of all the surgeries, all the struggles, this is a blow right to my heart. Maybe because food is my love language, maybe just because it’s a mother’s first job – providing nourishment for her babe, maybe because I know too much about the roads kernicterus kids can travel. Maybe because HE knows. Maybe because my son is sad and fearful too. He’s growing up, and growing up with so very much on his plate.
This past week the pulmonologist walked in the room and immediately told me he was aspirating on his own spit.
Cough assist machine, suction machine and pulse oximeter are now new parts of our life.
The same day I sat in my husband’s appointment to discover that he needs shoulder surgery. Full rotator cuff tear and tearing of the labrum as well. December 29th, that adventure will begin.
We powered the DBS completely off for a week, and discovered a few things – 1 the DBS has really helped his body, big time, 2 – the swallowing didn’t get better with the thing off. The CT came back with no abnormalities, aside from the metahuman-like impressiveness of the cochlear implants and DBS in that noggin.
We don’t eat dinner as a family anymore. It’s too hard to see silent tears slip down his face.
We sneak food. We walk around the corner to take a sip of water.
Somewhere in the coffee aisle, I very nearly fell to pieces in the grocery store the week of thanksgiving. That would have been a pretty site – the ugly cry with howling for no apparent reason? But in my defense – one huge building full of food that my boy cannot even taste, sip…nothing, it was just too much in that moment.
Kernicterus rocked his senses in so many ways – hearing, vision, touch and now taste too. Smell is something more like torture to him now.
And my boy is getting better access to his computer with eye gaze, and we hear his frustration. His rightful angst comes out. And what do you say to the smart little boy who has had so much taken from him? What do you say?
I wonder if what the cover in Sunday School get’s anywhere near the mile-long ache that my boy is feeling.
No one has been able to explain it to me – the why, the how. But I know the when. October 19.
It happened on the day we had DBS programming. Significant changes to the voltage being delivered to my boy’s brain made his lip quiver all day long with a couple of other (in retrospect) stroke-like symptoms. It was only on those settings for a few hours but they did quite a number on his body.
For 2 weeks we watched, worried and brainstormed as he choked on nearly everything, including his own oral secretions. On a school field trip he even turned purple. We knew something was wrong and just kept asking.
On 11/4 it was revealed that my boy’s ability to move food and drink safely was badly altered. He aspirated everything. In every position, consistency, presentation. “Aspiration. Penetration. Aspiration.”
I heard those words for an hour and so did my boy. This wasn’t my first rodeo either. I’d been to 3-4 of these gigs with Blue and he always passed with flying colors. He’d been successfully eating and enjoying food for his whole life, supplementing with his feeding tube.
I suppose the majority of folks with his level of severe physical disability have some cognitive impairments. He has none. Blue has been the happiest kid I’ve ever know.
In these past weeks, sorrowful looks, tears, and lots of words like “can’t,” “sad,” “eat,” “drink,” “please,” “bad” keep playing on repeat. Now that the DBS is off, communication is much tougher. Not words. Just quivering lips and eyes full of sadness.
I read Joseph’s story with him tonight and his face grows long, lip out, stray tears falling. He hears the story. He knows the story. He feels the story more than any 11-year-old I know.
I’m not sure how much of the story I ever really heard as a kid. I’m not sure I gave much thought to the pit, the betrayal, the enslavement, the imprisonment – the long tormented years, the isolation. Maybe I only saw the virtues of the man, not the battles that got him there. Maybe the path to being exemplary, to being holy, to being a hero isn’t so painless. My boy is already a hero, I just pray that in this silent struggle to breathe, to swallow, to speak, to heal that he holds tight to the God of Joseph, David, Daniel…all of the lonely heros.
“Joseph was a good boy. Look at the good boy. Can’t you just sit still like him?”
“Everything is better now, right?” The poor girl had the misfortune of being the 20th person that night to ask for an update on my son. At that point my husband had nothing left.
He literally just had nothing left and didn’t want to be rude and say the obvious truth, the truth that she seemed so exuberantly oblivious to.
Don’t get me wrong, we are incredibly grateful. It is NO SMALL THING that our son got through 3 surgeries in 2 weeks time with no complication…and deep brain stimulation, no less.
But yes, my son is still in a wheelchair with his body strapped down in more ways than I care to count. We still assist with every element of his needs, as much or actually more than any 4 month old child would need. He’s a smart cookie, so in addition to the physical needs we have to have a lot of supports in place to help him express and interact with his world. But never enough. We rarely know his feelings and thoughts, which is no small thing on a parents heart, especially when your child is undoubtedly going through pain and odd sensations of all kinds.
As for the DBS, this is a long game. We knew that the hard part would be the additional strains and needs post-surgery, but now we are IN it. And knowing a thing and being immersed in it are 2 very different realities.
DBS programming is a long and tedious process, especially for Blue’s diagnosis and inability to communicate. Every week we spend 3 hours at the hospital messing with the voltage in his brain and guessing and praying that it will help. It’s all guess w0rk.
I try with everything in me to understand what hurts and what helps.
And it saps me. I skip social events just to sleep. My neck spasms more. Homework keeps coming. We still are interviewing and searching for nurses and helpers. We currently have 4 of our 60 allotted hours filled. Other doctors appointments. In several sectors of life we are fighting to get what our boy needs.
I’m also in a position with pic-K.org where I am seeing what is sometimes a daily influx of new cases of horribly mismanaged newborn jaundice…other babies forever altered by something so preventable…something labeled as “extremely rare” happening way too often.
We actually did a conference here on October 1st and I got to share a room with 20 amazing families. We shared tears and smiles as we both mourned what happened to our kids and celebrated their indomitable spirits. That is a chapter in and of itself…and I have no idea how myself and 2 friends pulled that miracle together in 1 month of planning and post-surgical living…but by God’s grace it did come together and I pray it blesses and encourages each of these families in their journeys.
So as an update, no it’s not all better. It’s harder in many ways, and I can’t say that it will all be okay (we’ve had a recent setback that has gut-punched us and I’m still processing that one). I might not be able to offer you any comfort that can leave you able to walk away with a smile and a nod…although I mostly really wish I could.
But even on the hard days like today where I spent too much time battling on the phone and in offices and sleeping and dealing with my own pain in PT – I know that hope never dies. It is rearranged and reconfigured, but it never dies.
The expectation of wellness, of happiness of function may be forever altered, but hope and joy are not dependent upon circumstances. It’s not all better now, and it doesn’t have to be.
One breath. One step. One Prayer at a time.
As we leaned over his bed and said bedtime prayers, his hand slowly drifted up, fingers open.
For the first time, my boy, ever so gently, caressed my face. (Previous attempts had quite a punch behind them due to the movement disorder.) This was entirely different and sacred.
Thank you Jesus for the miracles every day!
The laughter, the controlled and tender gesture from son to mother. This new territory that we live in while sisters flit around in fairy costumes and climb doorways….I’ll take it. I will gladly dwell in this place.
There is a corner out there. You turn left and the brackish water curves this way and that. Then you are in it. In the sound. My girls knew what “the sound” was. We’d been going to the outer banks of North Carolina for a few summers. They had looked out on it from a distance. Driven beside it. We’d driven over it – all the scenic bridges. Seen it form the windows of the rental homes we’d stayed in.
But there was something about this time. In the water, rounding the corner, the expanse of water suddenly surrounded them. It took their breath away. What looked exhilarating from a distance was terrifying for my girls. No end to the water. No land in front of them. The still expanse of water as scary as any monster.
Vast and foreign, they were overwhelmed. Too much unknown. My 4-year-old went into a panic. She could not settle down until we were back in the winding canal. The big-ness was too much.
I’ve seen DBS first hand. We’ve watched the ups and downs that our friends Lexi has endured for the past 7 years. We have read about this since our boy was a babe, watched hours of webinars, read many articles. We’ve seen the expanse ahead. But to actually round the corner and be in the water? It’s honestly more than a bit terrifying, and challenging.
It’s no small amount of water we’ve just paddled into.
Settings are tricky. Programming is complicated. Pain, frustration, fatigue, they come and go and it’s going to take time.
When the was first turned on it seemed okay. But then it wasn’t. Our boy was in pain and of course he couldn’t tell us what any of it felt like. But at 4 in the morning after a night of moaning and tossing, my husband and I decided that we had to turn it off. Tears piled in my boy’s eyes in those wee hours of the morning. I saw a different pain in his eyes, a fear that this was all not worth it. Perhaps this was it. We were able to explain that this is trial and error, that it won’t always hurt, that we will keep trying to find settings that work for him.
Today started rough, but turning the thing back on and tweaking settings was very encouraging. He had perhaps his best PT session ever this afternoon. Calmer body with some intentional movements. Hard work. Lots of hard work, and really good work too.
It’s an unsure first paddle into the expanse, but we are not alone. Never.
Ready to go.
Although I had a hard time staying awake on the drive home I was so elated to be outside and to be headed home!!!
And as I pack away hospital bags full of medical supplies it starts to hit me.
I go into full on panic over the setup in in his room, earlier today the same sense of panic gripped tight…about finding my sandals.
Only it’s not the sandals or the messy room. 3 surgeries in 2 weeks. The reality is just now hitting my body like a train.
Acting as nurse/mama even more full time than usual (with a month off school and more recently bedding over a hospital bed for 4 days). So yeah, I may have had a few little meltdowns today. My neck may be back in full spasm, and I’d be lying if i told you I am doing good.
But my boy is doing very well! Aside from the idea that he has a major power cord running along his skull/neck (that might have been source of panic attack 3 today). He’s only taking the heavy pain med once a day and he’s just on Tylenol and Motrin the rest of the time.
His stomach isn’t back up and running yet, and by that I mean I have to maneuver the big boy into like a pelvic tilt and manually get air out of his belly with his G-tube every hour and we are waiting for the bowels to wake up. But really those are expected post surgical things for us and we are very glad to have him home and doing well!
Thank you all so very much for your fervent prayers and kind words and gifts and food!!!! We can’t even process it all, it’s so humbling and amazing to think of how many people are petitioning and cheering for this crazy DBS apparatus to be rocking awesome for our boy and his grand adventure! (Adventures being big scary quests that forever change you and your impressions of life, right?).
Never alone. Always loved. Home.
We asked the kid if he wanted to go home, or no.
He stared intensely at the the “NO” hand.
(We hold up hands as we ask a question, so he can look at the choice he wants.)
Comfy bed. Pretty nurses. Food on command. Both parents to take care of your every wish. Endless TV.
I might say no too.
At the moment he and dad are zoning out to some Sponge Bob while kicking back some eggs, sausage and hash browns.
The doc estimates at least a month of neck pain from all the tunneling, so we will keep up the pain meds. He keeps that shoulder drawn up. My neck cramps up just looking at him.
Normally only 1 or at most 2 wires pass through on each side of the neck. In Blue’s case they had to do 4 on one side. So after they pushed the rod through to tunnel for 1 they then had to expand the space and cram 4 wires through…ouch! But this may make things easier with the cochlears and revising and stretching things later for growth…I hope.
No word yet on when it will be turned on.
Momma may miss these night nurses coming in every couple hours and giving meds… Our stay here has been absolutely great! But there is no place like home, and fresh air.