I wrote this in January, when we hit 6 months. More current update at end.

——

Somehow, this planet has continued its orbit without the sunrise of your smile, sweet boy of mine! Somehow. For 6 months and a day, this impossible phenomenon has occurred, and I cannot reconcile it – ever.

I cherish every one of these smiles. They are finite now. No more to be commissioned by your beautiful mind, and so, I hold onto these diamonds, from the first to the last.

As I hold your smiles in my hands, I feel and see the pain that haunted you for your last 5 years and I hurt for you still,

but you,

you hurt no more. Mercy and murderous theft, working in conjunction?!

You were.

and now you are not.

Not here.

You were,

and you are.

You were here, and now you are. You are there.

Death stole you away from us, but he was only a courier. 

A courier to eternity, to God. To infinite beauty.

To your home free of pain.

To the vault in which all superhero’s dwell where your smiles know no end. 

To joy with no bounds.

You were the greatest gift, or was it a loan? Perhaps it was a loan of indeterminate duration. I got to hold, and laugh with and love the marvelous work of art that you were for almost 18 years. Your frame was broken, but it made you no less beautiful, it only added to the intensity and beauty of that smile that could never be stifled.

As your sister whispered to you in your dying hours, I will never stop fighting for you. Never.

Thank you, sweet son, and precious God for these gifts that linger and spur us on, in this world of heartache!

For I would wander weary miles
Would welcome ridicule, my child
To simply see the sunrise of your smile
To see the light behind your eyes
The happy thought that makes you fly
Yes, I would wander weary miles
To simply see the sunrise of your smile

The Sunrise of Your Smile, Poiéma (1994) – Michael Card
Written By Michael Card & Phil Naish

——

We are now at 7 months and change. We just went on our first vacation without him. We enjoyed family and good weather while the pang took a backseat, for the most part. My heart broke when Mr. Blue Sky played by the pool.

We went to Disney for the first time last week (man I hate that we never made it there with him!). On the Avatar ride, you feel as if you are really flying through paradise. Avatar was one of Blue’s many favorite films and I had tears streaming the whole way through that ride. The tears flowed as a felt both the distance and closeness with my boy in full intensity. Blue is now experiencing the elation of a paradise beyond our comprehension. His smile and the joy behind it know no limits now.

Oh how I miss him. tonight as the sun sets and its amber light streaks across the yard, I feel the pang that I cannot change, that is just a deep part of me now. The pang of love and loss and all that was and is not and forever more will be. What an incredible gift Blue was to us all!!!!

I’m doing “normal” things like altering a dress for homecoming for one of the girls, and taking up silversmithing. Both involve a lot of doing and undoing. I think I’ve pulled my daughter’s dress apart a dozen times and then stitched it back together – to make it what it needed to be. It’s also been surreal – making lunches and breakfasts for the kids for the first time in a VERY long time. And then there are Sundays.

Sundays are tough for one particular reason – singing in church. I avoid mascara for a reason. As we worship, I can’t help but be overcome with the feeling that, in those moments, Blue and I are doing the same thing at the same time – worshiping the most holy and magnificent and awesome being in the universe, the super hero of all superheroes. Blue’s excitement and pure joy over hero’s has been one of my greatest joys over these past 18 years and I can almost hear his happy squeals of delight down here when we sing.

But I’m also sad and confused and not even nearly 100% on board with this new way of being an incomplete family.

In short, I think those tears are rooted in 2 opposite feelings about Blue and God – the joy of feeling a little bit nearer, and the heartache of the distance. With Blue it’s about the lack of his physical presence and with God it’s about the distance between my understanding and his methods.

That dual feeling of adoration for the good and loving God who has cared for me so well, while also mourning the things he allows on this planet – the heart ache and ridiculous pain? They tear me in two…and they stitch me together.

And these songs, they came into existence out of the same types of paradox –

My 4 daughters all just drowned?- “It is WELL with my soul.”

Unable to leave bed for years? – “Just as I am.”

Horrible illness that would take her life at 43? “Take My Life and Let It Be“

Just discovered drowned fiancee? – “What a friend we have in Jesus“

Contemplating and nearly acting on suicidal thoughts? – “O The Deep Deep Love of Jesus“

Doubting faith? – “Come Thou Fount of Every Blessing“

Fiancé ditches you because you are going blind. You actually become blind, then your sister/caregiver is getting married. On the night of her wedding the family leaves you home alone to attend her wedding festivities. What do you write? “O Love That Will Not Let Me Go“

Today we sang, “Be still my soul.” I don’t love this one for the backstory, (it’s mostly been lost to time, given that this hymn is from 1600’s) but because it has the melody to match the beauty and the ache -a tune to mirror a faith in which God uses the brutal death of his own son to redeem an unworthy and wayward people from eternal demise, all whilst using some shitty turns in our lives for His glory and our benefit. If only I can have patience to see where these “thorny ways [lead] to a joyful end.”

1 Be still, my soul; the Lord is on thy side;
bear patiently the cross of grief or pain.
Leave to thy God to order and provide;
in every change He faithful will remain.
Be still, my soul; thy best, thy heav’nly Friend
through thorny ways leads to a joyful end.

2 Be still, my soul; thy God doth undertake
to guide the future as He has the past.
Thy hope, thy confidence let nothing shake;
all now mysterious shall be bright at last.
Be still, my soul; the waves and winds still know
His voice who ruled them while He dwelt below.

3 Be still, my soul; when dearest friends depart,
and all is darkened in the veil of tears,
then shalt thou better know His love, His heart,
who comes to soothe thy sorrow and thy fears.
Be still, my soul; thy Jesus can repay
from His own fullness all He takes away.

4 Be still, my soul; the hour is hast’ning on
when we shall be forever with the Lord,
when disappointment, grief, and fear are gone,
sorrow forgot, love’s purest joys restored.
Be still, my soul; when change and tears are past,
all safe and blessed we shall meet at last.

A massive thank you to the friends and family that came and organized and made today an absolutely beautiful moment to cry and laugh and celebrate a hero that we all miss terribly!!!

Every moment, every syllable and every note was utterly beautiful! If you have a minute I highly encourage you to watch it all.

Our pastor-friend did a poem/spoken word that blew us all away. AMAZING!

Can Blue give a piece of himself, after kernicterus takes him, to help stop this madness?

For those families before us that were connected with researchers, we honestly don’t know what came of their contributions, or if they were able to make them, and we understand why – there just isn’t a path – yet. (If you are one of those families, please contact me.). We knew we only had hours or days to get things lined up, and so, we did.

As kernicterus was pulling Blue from us, we had to engage in emails, phone calls, in-person meetings were taking place in the name of preserving our precious son’s brain for a research donation. Why? Because, like all things with kernicterus – there hasn’t been a protocol, a path or precedent…which made it all the more pressing. Blue was generous, to a fault. He was passionate about kernicterus – support, prevention, research…all of it and even in his passing, he had an opportunity to make an impact.

Blue cared deeply for all those impeded by disability, and most especially those trapped within the shell of kernicterus. He had tears stream down his face every time he saw a newborn, and if the kid was jaundiced…all the more. He well understood that what happened to him was 100% preventable and devastating. Blue also loved giving his time to pic-K and advocating alongside me. He made videos and helped write letters for the cause.

Now, Blue’s brain is going to Italy, to a group of renowned researchers that have been working tirelessly to understand more about prevention and treatment for decades…but only in animal models, tiny animals – usually rats. I asked one of these doctors why they haven’t been studying this in human remains and he laughed, a frustrated laugh. He said there just aren’t specimens being offered up to study, and yet, Blue has lost more friends to kernicterus than I care to count…and these children have exceptional parents who have been passionate about stopping kernicterus – but they haven’t been given the option of contributing to this research.

Kernicterus is considered rare, and is grossly under-diagnosed. There hasn’t been a path to get human specimens to the right scientists. A diagnosis is an instant red flag for a lawsuit and general awareness of what jaundice can do could and would prompt additional lawsuits for those who’ve already been unknowing victims of kernicterus.

Negotiating the preservation and dissection methods with the pathologists at our hospital in my son’s last hours? It was horrible…and I very much want to ensure that no parent should have to go through that in order to honor their child and help others.

So, we’ve created the Nathanael Blue Charitable fund. The goal here is to gather donations in Blue’s honor that can be used to further propel this research, ultimately funding a fellowship in his name for kernicterus research. The generation of researchers who’ve done millions of NIH studies in these animal models are reaching retirement age and there is a desperate need for a new generation of doctors/researchers who both understand and passionately pursue solutions for prevention and treatment.

When parents get the catastrophic diagnosis and first learn that their once healthy baby may never walk, talk, have coordinated movement, impaired vision and hearing, and so much more

they are told that there is NO treatment.
This is why we went into every surgery – cochlear implants, g tube, j-tube, nissen fudoplications, deep brain stimulation, MACE, central line – not knowing if any of it would “work”,
every medication, every therapy –
We were throwing darts in the dark,
at our boy.
Would these things that cost him so much help? No one knew. We could only guess based on anecdotal evidence at best.
This must change.
Our hope and prayer is that Blue’s donation will yield important information to change the game for kernicterus, and pave a pathway for others families to contribute to the research and make legacies for their loved ones as well. It’s an impossible thing for a parent to consider, but hopefully we can make the path a little easier for those who would like to do the same.
We’ve started the Nathanael Blue Fund in Blue’s honor for the purpose of furthering the cause, helping his brain donation yield maximum results and helping other causes both locally and internationally that empower those living with disabilities. This is a donor advised fund that will hold donations and then only distribute them to registered and vetted non-profit organizations. Gift’s can be made in Blue’s memory here: https://gkccf.kimbia.com/blue50

Blue’s service can be viewed here:

Nathanael Blue Iliff
August 26, 2005 – July 20, 2023

Nathanael Blue Iliff, age 17, of Overland Park, Kansas passed away at Children’s Mercy Hospital, succumbing to a long and painful battle with the sequelae of untreated severe newborn jaundice – kernicterus. A visitation and memorial service will be held at Colonial Presbyterian Church, 9500 Wornall Rd, Kansas City, MO on Friday, July 28th; Visitation at 5pm and Memorial Service at 6pm.

Blue was born on August 26th, 2005 in Fayetteville, North Carolina to Miriam Iliff and John Iliff. His family then moved to Overland Park, Kansas in 2014. Blue attended Mary McArthur Elementary (Fayetteville, NC), Morse Elementary (OP, KS), Aubry Bend Middle School, and Blue Valley Southwest High school.

Blue’s battle with kernicterus began when he was 9 days old. The hospital and pediatrician entrusted with his care diagnosed his jaundice, but discounted its dangers. They allowed it to continue elevating unmonitored in spite of continued visits and inquiries from his parents. At day 9, Blue’s life was altered as the jaundice became so elevated that it would have taken his life without an emergency double blood exchange transfusion. Blue was left with a condition called kernicterus. In the aftermath, kernicterus affected his muscle control, hearing, digestion, vision… every faculty except for his intellect.

Blue was an exceptional young man who touched hearts of everyone he came in contact with in spite of his growing number of physical ailments. He excelled in academics in spite of his communication issues. His rascally smile was engaging, his laughter was infectious, his hair and flashing blue eyes were the envy of all. He cared deeply for others, especially his peers who were also struggling with limited abilities. He loved watching movies (Transformers, Avengers, King Kong, Lord of the Rings) and watching his Dad, family and friends play Xbox. He loved nature, fast cars, motorcycles, and was game for any adventure. Most importantly he loved Jesus and was looking forward to the day when his body would be made perfect again.

Blue is survived by mother, Miriam (Mitchum) Iliff, father, John Iliff and his two sisters, Miriam Anne Iliff and Kathryn Grace Iliff; grandparents, Miriam Mitchum and Scott Mitchum, of Fort McCoy, Florida; grandparents; Sally Iliff and Stephen Iliff of Hoyt, Kansas; Para and Best Friend – Holly Bolick; many aunts, uncle’s, and cousins.

In lieu of flowers, memorial contributions may be made to The Nathanael Blue Fund – a charitable fund dedicated to enriching the lives of those living with disability and kernicterus prevention and research here: https://gkccf.kimbia.com/blue50

It is not.

Watching your child ebb and flow from this world to the next – those contractions??? They tear something deep within that will never be mended. And then – the guttural ache that infiltrates every cell of your body? There is nothing else.

Blue has left us. He gave so much, and his gifts remain, but his physical presence is forever cut off and I can barely breathe. He took his last breath in his daddy’s arms yesterday. It was something like watching him slip into the depths of the ocean (and yes, that cliche scene in titanic comes to mind, but with all the gravity of it being REAL.) The vicious and easily avoided iceberg of kernicterus collided with his perfect little body at 9-days-old, and it has been tearing away at his hull every day since, but yesterday it took his “mortal frame” for good. But Blue was and is so much more.

Blue left some things behind – gifts, and my God, they are so many!!! His laughter. His smile. (May they never fade from our memory! NEVER!) His love. His compassion. His generosity (more on that later…so incredible!). His brilliance. Man, did he shine!!!

In his final days, the stream of nurses, doctors, RT’s, social workers all crying and adamantly telling us over and over how he enriched their lives, brightened their days, and made them better at what they do…it was something to behold. And that was just in the confines of that one building.

Not just the end, but the whole thing seems unreal – his whole extraordinary life. John and I feel like witnesses to a UFO – something so unbelievable, terrifying and wonderful that it barely seems real. Blue was no UFO, though I’m pretty sure he would be the FIRST to sign up to ride in one….but man, he was something else, defying odds, persevering and shining so much light into so many lives, most especially ours. Born PERFECT and just days later being sentenced to live in the confines of a body that would not allow him to sleep, eat, move with any control, hear and much more, and the ways that he found to triumph over and through that body, being a straight A student in advanced classes, developing his own faith and walk with Jesus, enduring a ridiculous litany of surgeries (each one a physical prayer for relief in one area or another), and in these last few years, smiling and putting a brave face on every day through impossible pain.

I wrote this last bit the day before Blue passed.

What a wild ride and an IMMENSE blessing it has been to be the mother of this incredible soul!!! Blue, how were you smirking at me as I danced with you, in the theater, just 3 weeks ago, at the end of the transformers movie? How can this be happening?

Thank you Jesus, for each and every day I have with Nathanael Blue! He is a good and perfect gift from above and I am so very grateful to have gotten a front row seat to his amazing life…and Blue, my only consolation is in your destination, sweet boy of mine, where every tear will be wiped away, where you will RUN and not grow weary, where all can hear your gorgeous voice, and where kernicterus no longer has a hold on a single cell of your being, but you are as you were designed to be, absolutely perfect and getting to hang out with the ultimate transformer, super hero – Jesus.

I love you son! With all of my heart and for all eternity. I do not know how to walk forward, but I trust the same God you did, and man, if you could have the courage to face each day, surely I can.

Today we wrap up our third week in the PICU for what began as some midnight vomiting, then escalating his body into what is called status dystonia (or status dystonicus) and necessitating a medically induced coma. A CT that day revealed a bowel obstruction. Emergency surgery was performed that same day to remove a section of tangled bowel. In the days that followed, our boy wasn’t progressing, and still wasn’t moving his bowels. A second CT of his belly revealed that an abscess has formed in his abdominal cavity, as some contaminant or stool may have escaped during the surgery, causing this pool of fluid where it shouldn’t be.

2 days prior to this midnight wake-up call, we had put down our almost 3 year old pup, and I’m currently running faithful old Malcolm (Blue’s service dog of 8+ years) to the emergency vet for some more labored breathing while my husband waits in the hospital for our boy to come back from another CT. Tough as this all sounds, we’ve seen friends with children who have kernicterus endure far far more for much longer. (Take away: kernicterus is a four lettered word!) There are positives in the midst of this – the stable past few days our boy has had, the girls being able to visit with family, step away from the chaos and have fun during their spring break.

Today’s sermon was about worry and the Ebenezer’s that reveal God’s provision along the tough paths we’ve already endured.

I’ve been obsessed with painting rocks for the hospitals chapel rock garden this admission, and had totally been forgetting about this thing the Israelites did – posting rocks along the way as reminders, landmarks, of how God had carried them through impossible trials in their yesterdays.

Not sure what tomorrow holds, and feeling every bit of Micheal Card’s song, “In the Wilderness.” Here is an abbreviated version of the lyrics:

In the wilderness
He calls His sons and daughters
To the wilderness

But He gives grace sufficient
To survive any test
And that’s the painful purpose
Of the wilderness

In the wilderness we wander
In the wilderness we weep
In the wasteland of our wanting
Where the darkness seems so deep

We search for the beginning
For an exodus to hold
We find that those who follow Him
Must often walk alone

In the wilderness we’re wondering
For a way to understand
In the wilderness there’s not a way
For the ways become a man

And the man’s become the exodus
The way to holy ground
Wandering in the wilderness
Is the best way to be found

But He gives grace sufficient
To survive any test
And that’s the painful purpose
Of the wilderness

Groaning and growing
Amidst the desert days
The windy winter wilderness
Can blow the self away

In the wilderness
In the wilderness
He calls His sons and daughters
To the wilderness

But He gives grace sufficient
To survive any test
And that’s the painful purpose
Of the wilderness

And that’s the painful promise
Of the wilderness

From the wilderness…Ebenezer!

Blue is in the MRI scanner.  I’m in a waiting room. The girls are a thousand miles away on a pickle ball court.  John is at work.  My heart is fractured and full to the brim.

Enya plays.  It was my labor music.  John made me mixes for each of our babies. Breathe in. Breathe out. Breathe.  Let go…of pain…of fear.  Don’t tense against contraction.  Don’t impede the babies progress.  Surrender to the pain and it becomes less, the baby pro, let the child advance their way into this world.  Release tension that would hold on.

Electric soothing cords somehow drown out the Nick Junior toons that the little kids are all busy ignoring, playing with tablets, asking questions, keeping busy.

Tomorrow and tomorrow creeps in this petty pace…

– Shakespear

Broken dirt, hard clumps in the garden last night, I break them in my hand as I put seeds into the soil.  I want to talk about my garden.  I want to tell you about the good stuff growing in the middle of all those weeds, the bricks full of purple splotches below the mulberry tree…not medical lingo and projected futures and hopes, but Enya pulses and I remember that the story growing in this sterile-ish place needs sunlight too.

Since loosing DBS last summer (the infection had gone all the way into the brain, so the whole system, wires deep in the brain, had to come out).  In the months that followed we didn’t see what we expected to. Blue’s tone was not horrible right away, but he kept indicating that he wanted it right back in, that it helped his body more than we’d ever see and he needed it back.  Months of antibiotics and treatments with side effects (some life-threatening) and surgeries followed.  Over the months the dystonia slowly worsened, muscles grew more tense (the benefit of DBS can last many months after it’s gone as the brain has used it to make better movement patterns).

Horrible headaches kept coming and staying longer and longer.  Here and there treatments would help…for a while.  We had to go to the hospital many times as pain drove his heart rate up and headaches, migraines, got tougher and tougher to break. In April we stayed for a week.  In May we stayed 2 weeks and then finally left in frustration, headaches unchanged.  Spinal taps / lumbar punctures brought complications and also revealed building pressure in his brain…not quite enough for a shunt, but enough to warrant new meds that have been tough to handle.

Blue’s current migraine has not broken since it began in late April/early May.

A 2-month-long migraine.

And what do the doctors say?  Their best guess is that the increased tension in his body leads to worsened migraines and the migraines then lead to more tension.  Their best hope – repeating the DBS.

Tomorrow at 6:15am we begin this journey again.

D-Day was a costly day that turned the tide.   That exactly how Blue feels about DBS, even with the casualties, the permanent swallowing difficulty, the pain and frustration that programming can bring, the horrible ordeal of the infection, it turned a tide in his body, it gave him better control, it tricked the injured part of his brain into firing better, giving him some precious bits of relief and control.

As we are on the precipice of on our second DBS day we pray again that this tough battle will the shift in tide needed for relief.

I took the turn and turned to

Begin a new beginning

Still looking for the answer

-Enya

Multiple surgeries to follow this summer (one with the same wack haircut he got last summer).

We wait for a phone call…days, weeks, a month? 

Much on the line.

They talk of things looking infected, of pulling all or part of the whole Deep Brain Stimulator**, the implanted system our boy’s body relies upon.  (This would mean long months with no DBS to help him.)  OR there could be miraculous news that will allow him to keep the DBS and move the implanted batteries to new spots on his body where they won’t threaten to rub their way through his skin.  It will take up to a month to know. (Be sure to read the footnotes if you want more info.)  Movement disorders, wheelchairs and implanted devices sometimes don’t play nice together. 

For now, he heals.  

He smiles. 

He laughs. 

He enjoys the kisses and entertainment his sisters dish out. 

(This surgery wasn’t so bad.  The next one will be tougher.)

My husband and I? Honestly? We feel like we’ve been run over a train.  Kernicterus happening.  Old wound opened with new trouble.  On the flip side we’ve been incredibly blessed.  And strange as it sounds, the trauma of a disability and the blessings in a life can dwell in the same sentence.  The two emotions can live on a see-saw gone mad.

In that doctors office on Tuesday, as one-more-thing had my boy in the cross-hairs, as the doc confirmed my suspicions and we began to plan for the surgery that would get bumped up twice – I saw him, I saw my healthy gorgeous baby.  Next came an image of a nail being pulled from a horse shoe played on repeat.

We aren’t just very unlucky people in the world.  A very bad thing happened to my boy when he was new, and it’s just still playing out, still affecting everything and everyone in our world…for want of that nail.  One thing taken from him back then – face reaching consequences today.  Kernicterus.

So we wait.  We wait to see what happens at this fork in the road, how the cultures come back.  We take time to absorb the shock and lift up heartache while we work on being present, on soaking in the precious things happening all around us (things we would take for granted in that other life).  We solider on and we cherish.  We cherish this boy’s smile that cuts through grief.  I cherish my garden that grows in the oppressive heat of summer, and the way that our house echoes with kids arguing sisters (well, maybe not that part…but I have to throw it in so as not to leave you with an illusion), and ridiculous antics and the ever growing zoo of creatures here that light up this boy’s life.  We soak in the squeals of laughter of delight our boy has over his favorite movies and things.  And we cherish our precious friendships!  We don’t do much to pay in, other than to share our raw existence in bits and pieces, and you give freely!  We love you very much!

One. Day. At. A. Time.

UPDATE: The DBS is infected. The team is now working on plans for removing/explanting the DBS. The neurosurgeon’s office is talking about surgery in one month. Blue is in pain and we very much hope to convince them to do it sooner but have not yet been able to talk with the surgeon. 7/9/18

UPDATE: surgery Friday. Pulling it all. Beginning to power down today. 7/10/18

One of Blue’s DBS batteries migrated/shifted under his skin on his chest and began actually eroding through the skin last month.  Despite our best efforts to reach out to his docs, contain his movement, and cushion the site, a top layer of skin broke on the 4th of July.  (The implant did not come through.) When the neurosurgeon performed surgery to look at the area and scoot over the battery on the 5th he said that it looked very suspect w a lot of gelatinous fluid around the battery.  He cultured the area, looking for slower growing bacteria, moved the battery 3 inches over, cleaned Blue out w antibiotics, closed Blue back up, and sent us home w more antibiotics to wait for the lab to see if a slow growing bacteria appears in the culture. The “what’s next?” possibilities are worthy of a wall covered in expo marker.  We will pray and we will see.     

**DBS was a 4-part 20 hour*** brain surgery that Blue had in 2016 to decrease his severe movement disorders and tone. Prior to DBS Blue’s body would writhe for hours every night, and he would cry out in pain as his wheelchair rattled. After DBS, his movements were much more calm, and evenings were no longer filled with that particular torture. He still moves a lot and has a lot of tension in his body.  Our reality means that what others might call a marginal improvement can make a big difference in quality of life.

In 2017, this same battery was also relocated because of it had shifted/migrated higher towards his neck and was causing him significant pain.

***Twenty hours is much longer than most.  Blue’s was longer than most because he has 2 cochlear implants with magnets that are not MRI compatible.

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

For my boy, and for all of the beautiful babies at risk…watch, share, follow, or give time or resources!

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?”

Blank stare.

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.

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! 

His dad, of course had to follow up with his own silliness.

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. 

There is something about fresh air. Blue and I got outside for the first time in 4 days today…and we got to go home! 

He smiled to be outside, but later he squealed with laughter over his new bb8 toy. 

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. 

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. 

Despite his wishes, home may be in our future (as in tomorrow). He’s doing well but we want to be a little more comfy with his stomach, bowels and pain management all running well.

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. 

We loved seeing a few smiles and laughs here and there, especially when his buddy Malcolm (our service puppy) came for a visit. 

Hoping to get home tomorrow! 

Ps – I never knew it was possible to love a hospital bed…but this is a GREAT bed for our wiggle worm! 

Now to figure out how to recreate this cushioning at home.

This is not a crisis. We won’t be likely to be here for long. But it was a bit of an uncomfortable night for Blue with a fair amount of breakthrough pain on maximum doses of meds. 

The precious champion of a boy is sleeping now though, so I’m going to do the same. 

Blue is now recovering in a room.  And when this tall boy’s bed wouldn’t fit through the door?   Dad was on the floor in his bunny suit before the crowd of nurses even knew what was going on.  (Narrowing the frame of the bariatric bed.)

Pain is quite an issue. Incisions all across chest, and all (and I do mean all) over his head. We counted 50 stitches last time and I imagine he has at least 3 or 4 times that now….and I have no desire to count them.

The good news is that (thanks to our friends with Kernicterus who also have a rough time with pain meds) we’ve found a pain med that is helping so far.

Chewie, unfortunately is out of commission.  He took the blast when Blue got sick to his stomach, but iron man is standing in now. 

Our sweet funny boy with the horrible hair cut had big smiles when he saw his new DBS equipment. He is something else! 

Blue will get his DBS turned on some time next week. 

We are so grateful that the surgeries are behind us now.  God has truly blessed us in so many ways. 

And the shell-shock is still there.  We cannot quite compute all that has gone on…today, this month, the past 11 years.  

Let the recovery begin!  And may the pain be under control as the anesthesia continues to wear off.

They are being careful about the cochlear implants and had to take time for additional imaging and planning. 

They made the first incision around 11am and it will probably take another 3 hours to get everything in place.