Got Milk? Losing My Identity as a Mom

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Three year old me nursing my baby doll.

My childhood dreams were to be an archaeologist, singer, hairstylist, wife, and mommy.  Truly, all of my dreams have come true.  I mean…I thought I’d be digging for dinosaur fossils, but instead I search piles of laundry for that buried pair of nearly extinct socks!

When my oldest was born, I didn’t have a clue about babies!  I’m sure my Mom prayed a bit longer for us in those early days.  When we brought Cash home from the hospital, we swaddled his little semi-naked body tightly in blankets.  (I kept our condo freezing because hello, crazy hormones of mine!)  My mom mentioned something about dressing Cash, but I was honestly afraid I was going to break his arms if I tried to fit them into a onesie.  I bent my own arm back mimicking the motion of dressing him just to be sure I wouldn’t be hurting him!  One thing that I’m thankful did come naturally to me and my babies was nursing.  My mom nursed all six of us kids.  It must have made a big impression on me to watch my mom feed my little sister because I then began practicing with my baby doll (see picture above)!  To be able to nourish my babies and meet that need the way God designed my body to work was a joy for me.  I had a great nursing relationship with my older two and nursed through the beginning of my pregnancies with Chloe and Lincoln.  I eagerly anticipated meeting Lincoln’s needs for nourishment and comfort in the same way.

When Lincoln was first hospitalized, nursing was an awkward dance of jumping into his crib, moving carefully around all of his cords and wires, while trying to discreetly cover up as a LIVE camera watched his seizure activity.  I eventually gave up the battle for discreet modesty and focused on just feeding my sweet baby.  There came a point where Lincoln was too medicated and sleepy to eat, and the nurses and I lost track of Lincoln’s feeds and his diapers began to get sparse.  His seizures were still uncontrollable and every time we slammed his body with more heavy medications to stop them, he’d be knocked out for maybe 22 hours a day.  Lincoln eventually had to get a NG tube through his nose and down his throat which just wrecked me to watch them place it.  It looked so uncomfortable!   Soon after, the doctors recommended a g tube and diet change.   I think the doctors knew long before we did that Lincoln’s care was going to be complex and involved.

Everything seemed to be happening so fast…talks of the need for future therapies for developmental delays, threats of being moved to the PICU and being intubated, conversations of medical bills and applying for assistance, the next step of starting the ketogenic diet for seizure control, and surgery for a g tube.   It was an overwhelming reality for a diagnosis we didn’t even have yet.

In all of this, it brought me comfort to nurse Lincoln.  If I couldn’t do anything else, I could at least meet that one need and feed him.  It brought a sense of normalcy to the chaos that was our hospital life.  It was something special between he and I.  Just the two of us.  No one else could feed him.  Just me.

Surgery and weaning his diet took place within days of each other.  As we waited on the shipment for his ketogenic formula to come in, I cherished each nursing session.  A few days in a row, I’d nurse for his “last meal” and find out that the shipment was delayed.  I rejoiced in another day to feed my baby!

What’s funny is that in every hard thing we had to face, what broke me was having to quit nursing.  The doctors would round with the residents every morning and I always put on a brave face.  One particular morning, they all gathered around Lincoln’s bed, reviewed his chart, and asked how I was.  I burst into tears and said how much I hated the diet.  I’m sure they thought I was crazy!  Of all the things to cry about!

But for me, I felt like Lincoln didn’t need me anymore.

So much of my identity was wrapped up in the one thing I felt I was good at and the biggest need of my baby…nursing.  If he wasn’t awake to know his mama, and the nurses managed his medications, and anybody could feed him a bottle, then what made me special?  He didn’t know me, right?  And now he didn’t need me.  There was nothing for me to do.  Oh, how I grieved this loss.  My husband spoke truth to me lovingly and reminded me over and over again that I was Lincoln’s mom and he did indeed know and need me.  (He’s so sweet like that!)  Perhaps all of the sorrow of Lincoln’s journey was just expressed in the loss of nursing.  Maybe it wasn’t that heavy on its own.  I really don’t know.

Up to this point, I had been pumping for my own relief when Lincoln slept too much to eat.  Months later when we were preparing to discharge from the hospital, I was surprised at how much milk I had preserved and set it in my heart to donate it to a milk bank in the hopes of helping another fragile baby somewhere in a NICU.

My milk has long been taking up space in my freezer and it’s taken me a year to finally cross this off my to do list.  Unfortunately, the milk bank (yes, they exist and they are awesome) has a time limit on donations and I had exceeded that by at least 6 months.  Recently, I was connected with a milk donation page on Facebook.  Two ladies showed interest and I’m certain I scared one off when I openly shared about why there were hospital labels on each bottle.  Then, God led to me a sweet mom who lives in Charlotte (one of my hometowns) and is adopting a baby girl who just came 10 weeks early.  I was floored by her response.

“I’m so grateful for your labor of love and being willing to pass on to other babies in need,” she said.

But I was the one who felt gratitude.  God was granting the desire of my heart to help a fragile baby!  And she thought my milk was worth driving over two hours to pick up the next day!  And she wasn’t hesitant.  She was overjoyed!  My heart is overflowing just thinking about how God met each of our desires this week.  God granted her desires quickly while I had to wait a year, but His timing was perfect in both cases.  To God be the glory!

I can see now that giving up nursing for the keto diet was in one small way God’s provision for me.  The fact that Lincoln can take a bottle easily from Daddy takes the pressure off of me to be the primary caretaker.  Now Daddy and I can share the responsibility equally which gives me the freedom to recharge.  And once again, experience and perspective have taught me new lessons.  I’m certain I once judged bottle-moms and questioned why they would choose that.  I know better now.  I am so grateful that Lincoln can take a bottle right now.  It’s very likely that one day, he will be strictly tube-fed.  And then I’ll be so grateful for a g tube that allows him to get nourishment at all!  And there’s no way to know really, but maybe the keto diet has contributed to better seizure control this year than last.

Once we were finally discharged from the hospital, I quickly found that there were plenty of needs to be met and God shaped me into Lincoln’s best nurse and advocate.  What has been true all along is that God made me Lincoln’s mommy and I’ll fight for him, love him, and pray for him with all of the zeal I have within me.  And that sweet boy has known me all along.  He knows my voice.  I know him.  He grew right underneath my heart and that is a sweet bond that can not be broken.  I hope one day when Jesus comes back and takes His kids to heaven, that after I’ve hugged Jesus tightly, Lincoln will run up to me, rest his strong hands on my shoulders and with a big grin say, “Mom!!  I’d know you anywhere.”

 

(What I’ve come to learn is that nursing isn’t easy, possible, or desirable for some.  What is also true is that some babies have major GI issues and will never be able to feed orally.  Instead of breast is best, FED IS BEST!)

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My son does not have cancer, but I once wished he did.

Cancer.  It’s a wretched, life-altering diagnosis.  I know it well because my big sister suffered the agony of tongue cancer and won her battle in July of 2014 when she left her broken body and met Jesus face to face; her faith was made sight!

When Lincoln was a newborn, we were living in the hospital fighting for his life and surrendering to an ng and then g tube for feedings, and a broviac for blood draws because his veins were completely blown.  Numerous seizure meds were failing to control Lincoln’s seizures that were literally taking his breath away and the threat of going to PICU for a medically induced coma and intubation was very real.  During this season, I kept thanking God that Lincoln wasn’t suffering from the agony of cancer.

Last summer when Lincoln was 8 months old, we were invited to join a few other families and represent Greenville Healthy System’s Children’s Hospital for a Greenville Drive baseball game.  As we waited for our contact to walk us out to the field, we met a family with two beautiful little girls.  As they began to share their story of the oldest girl’s battle with cancer and present remission, I felt joy for them and deep sorrow for us.

In that moment, I wished my baby boy had cancer.

He’d have a chance at beating it then.  This little girl had a perfectly working body and brain.  One would never know what a difficult journey she had endured.  My little boy will never walk, talk, run, ride a bike, or dig up worms.  My little boy will endure many more diagnoses as his body fights this genetic disease.  I was jealous of cancer that day because as wretched as cancer is, there is a small chance of beating it earth-side, but that is not the case with MMPSI.

Let me tell you what is going on with researchers though.  Dr. David Bearden is a pediatric neurologist who has begun working with a pharmaceutical company to research the KCNT1 gene mutation and the MMPSI diagnosis (Our sweet Linky is both of these.  Some KCNT1 kids have different diagnoses and some MMPSI kids have varying gene mutations.)  Researchers up in Philadelphia are taking blood samples from ten kids and somehow creating stem cells with the goal of creating a medicine that may actually work on our kids.  Lincoln has been invited to participate, so we hope to get up there eventually.   With Lincoln’s disease being so extremely rare, it’s incredible that God has even laid it on a doctor’s heart to study this further and give him the appropriate connections.

We have our own observations on something in particular we strongly want to research, so we are looking into possibly starting a foundation where we can funnel research money specifically for this observation.

While doctors couldn’t name MMPSI until five years ago, it’s amazing that we are here on the edge of discovery and my prayer is that God would unveil the eyes of researchers and give them clarity and wisdom in abundance.

 

To learn more about Malignant Migrating Partial Seizures of Infancy, click here.

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When God came down to a brewery

Twenty-seventeen has been a whirlwind, a medical hurricane, a juicy novel.  Instead of conflict finding resolution or a grand curtain call, our chapter is entitled “To Be Continued…”

November greeted Lincoln with a terrible, awful, miserable cold that severely affected his oxygen.  He was just miserable.  Then December came along and one-upped November.  To make a long story short, on our drive to the in-laws house for Christmas, Lincoln became sick and we had to hospitalize him far from our home and our doctors.  He fought an infection in his broviac and walking pneumonia (that we all got) and all the while, Justin’s grandma was fighting for her life in the same hospital.  She could not recover from the stroke and other complications, and she passed away on Christmas Eve morning.  Believe it or not, we actually had a very special Christmas at the hospital with some family and the kids in spite.  And on this New Year’s Eve, on my daughter’s third birthday, Lincoln and I are sitting in another hospital fighting awful seizures that have come on with a vengeance and we are trying to uncover the mystery of some other medical anomalies.  The blanks and spaces in between this story are just more of the same hard stuff.  It’s been a tough season.

But God…

Let me share a story of how God reached down and lovingly cared for us in a very specific way, of how He said, “I’ve not forgotten you.  I’m right here.”

—-

Thursday, December 28, 2017

After 13 days and one Christmas in the hospital, after a Grandmother’s death and a funeral, Lincoln was finally discharged.  Justin was the final of us five to come down with this walking pneumonia bug and he was physically spent.  As hospital parent this go round, he had reached his limit of round-the-clock hospital interruptions, bland, rubbery hospital food, and the condiment-hostage situation.   I arrived to pick him up around lunchtime and as we packed up, I suggested we consolidate our time and grab food at the deli downstairs.  He was determined not to eat another bite in the hospital – – and I didn’t blame him!  We said our goodbyes to the nurses and made our way to the van.  We were home free and we were together!  Even with daily hospital visits with the big kids, Justin and I hardly got a change to connect so this time was sacred.   We discussed where to go for lunch and decided to try a local brewery where Justin’s nephew works.

We had just pulled up to Local Motive when Lincoln started to cry.  My already heavy heart sunk.  Neither Justin or I had eaten yet and it was already around 2 or 3pm and now what were we going to do?  Lincoln’s cries were confusing.  We had no idea what was causing him discomfort or pain.  We couldn’t fix it.  He hadn’t taken a bottle by mouth in two weeks, so we couldn’t comfort him in that way.  (Linc’s crying spells often come on during family events or when we have something planned and it’s incredibly disappointing & defeating to have to “tap out.”)   Justin insisted that we still give it a shot, and for a man who doesn’t like to inconvenience anybody, I knew he was desperately hungry enough to risk a crying baby in a restaurant.  We walked in and much to my relief, there were only a few people at the bar and one table occupied.  We definitely walked in at the right time.  A table in the far corner of the restaurant was suitable for some baby rocking and shushing as well hoping and praying we could just sit down and eat one meal together.

But Lincoln cried.  And I tried to feed him a bottle, but he couldn’t latch.

And he cried some more.  I felt the eyes of the customers boring a hole into me.  Why would you bring a crying baby to a restaurant?  What can’t you just feed him?  That would hush him up.  What kind of mother are you?  I would never do that.  I imagined how they were sizing up this intrusive, helpless mother and selfish father.

A man in a yellow shirt with a baseball cap walked up to our table and kindly acknowledged us and the baby.  I don’t remember exactly what was said, but I remember sharing that we were looking forward to eating a good meal after two weeks in the hospital.  We placed our order with the waiter all the while knowing that the simple meal we longed for just wasn’t going to happen.  Lincoln was crying out in pain and we couldn’t explain why.  I held him closely and swayed begging him to quiet.  As Justin got up to go to the bathroom, I raised my voice over Lincoln’s crying and surrendered defeat.  “Get it to go!” I said.  We were heavy-hearted and disappointed.  Epilepsy and the all the stuff that comes with it, like crying spells, won again.  We were defeated.

Heavy-hearted and weary, Justin reasoned with God over a urinal.  “I just want to eat a meal, God!”  Epilepsy has stolen a lot from our boy and our family.  It didn’t seem too much to ask for one meal.

When Justin returned to the table, I left the restaurant quickly.  The icy wind whipped around us as I cuddled Lincoln close and mirrored his cries in my heart.  We cuddled up together in the van and I could feel a whirlwind of emotions from the past few weeks catching up with me.  Then my phone rang, “Come back inside,” Justin said.

“But, babe, I can’t.  He’s still crying.”

“It’s okay.  Come back inside.”

I knew in that moment that the man in the yellow shirt and the baseball cap had said something.

In my absence, Billy, the man in the hat, introduced himself to Justin as the owner.   “You aren’t bothering anybody.  I know everybody at the bar.  You aren’t bothering them and I’m sure those folks at the table are fine.” A little small talk later and a peek into our journey with Lincoln, Billy reiterated to Justin, “You are welcome to stay here or…”

And Billy came up with a plan just for us.

I fought back tears as Lincoln and I walked back inside.  To the left of the entrance was a big garage door separating the brewery room from the restaurant.  The man in the hat looked at me kindly and said,  “You aren’t bothering anybody, but if you’d like some privacy, I’ll set you guys up here at this table in the brewery and we can close the garage door and you won’t be bothering anybody.  It will be your own private room.”

We were being shown the great kindness of a warm welcome just as we were – weary, broken, and crying.  And it broke me.

The big garage door shut behind us.  Justin and I sat down with our food, kept company by a dozen giant stainless steel beer barrels, and we wept.  All we wanted was a meal together and to not be a bother to others.  God took our frustration and desperate longing for something simple, and He humbled us with the gift of grace!  God reached down and set a table just for us – in a brewery!  And you know what?  Lincoln latched onto his bottle for the first time in days, and he quieted.

Billy came to check on us a bit later.  “I’d be remiss if I didn’t say two things.  First, your story just broke my heart so I’m comping your meal.  And second, can I pray for you?”

“Yes!  We’d love that,” we cried.  Turns out Billy is an elder at a local Presbyterian church.  We cried and prayed together, and each shared our awe of how God moved in all of our hearts at lunch that day.

The Lord used Billy McBride to show us He has not forgotten us and that He is not withholding good.  He took our longing and expectation and turned it into something even more beautiful and soul-lifting than we could have imagined.  Just when we were at our weakest, God did what ONLY HE CAN DO, and in one small, but grand gesture, He fortified our faith, strengthened our hope, and deepened our love.

*Billy’s family was hanging out at the bar with him.  His kids, aged 5 & 9, asked why he was helping us and why we were eating alone.  In a quick-thinking moment, Billy said, “Well, it’s kind of like Mary and Joseph.  There was no room at the inn.  They are Mary and Joseph at the stable.”  We laughed and I told Justin, “Should we call Billy our angel Gabriel then?”

localmotive_florence_dec2017

Go see Billy McBride at his restaurant, LocalMotive in Florence, SC. Tell him baby Lincoln sent you!

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Linky nestled in the trough of beer barrels.

 

 

 

There’s a first for everything

Ear-piercing cries woke us up as I heard our night nurse rush Lincoln towards our side of the house.  Simultaneously, my 6:00am alarm was chiming as we popped up out of bed in a panic.  It was the end of Denisha’s shift and the start of a day of firsts.

Lincoln had been fussy and not feeling well for the past 24 hours.  He had suddenly come down with a stuffy nose and was miserable.  No matter how much we suctioned his nose, we just couldn’t get him clear.  I told Justin that I just knew we were going to end up in the hospital this week.  Right now, a 7 month old MMPSI kiddo is in the hospital for a cold that is affecting her oxygen levels.  And considering, that 4 little people just passed away (two from breathing issues, the others I don’t know), I’m a little sensitive right now to anything other than Lincoln’s baseline.

Denisha came on at 10pm and I gratefully handed fussy Lincoln over to her care.  I knew we had a long week ahead of us and took my break guilt-free.  Jt and I decided to catch up on my very favorite show Poldark.  It was hard to “clock out” while he whimpered in the other room.  That was hard, but I know it’s good for us to take a step back especially when he has nurses who really care about him.  We recklessly (because really, we should have been sleeping) binged on three episodes and finally crawled beneath our covers at 2am.

We had plans for a busy Thursday.  Jt had some important work deadlines to wrap up and my singular goal was to prep our house for Airbnb renters.   Only God had some other plans for us…a different path to walk.

I hurriedly turned off my alarm and ran to Denisha.  Lincoln was wailing and his throat was full of fluid.  With every cry, his throat gurgled.  It sounded like he was drowning.  Denisha hadn’t a clue what had happened.  She had just set him down from rocking him for hours and had turned her back to mix his morning meds when he had started screaming.  All I knew in that moment was that I needed to clear his throat.  We only have a short nose catheter that wouldn’t do much good for his throat.  I needed something longer.  Mysteriously, a yankauer (pronounced yang´kow-er), a long skinny suction tube, had fallen out of its hiding place in the suction bag and make its way to my bedroom floor just the day before.  We have never used this tubing before, but must have grabbed it after a hospital stay.  I ran to my room, grabbed the tubing, and quickly switched parts.  I had no idea what I was doing with this particular tube, so I tried to be conservative.  Okay, I’ve got to get his throat clear so I’m just going to take this to the back of his tongue, I thought to myself.  Not too far.  Denisha held him as I began to suction.  Everything was going to be fine.  Only it wasn’t.  The blue tubing filled quickly with white mucus and blood.  There was blood!  I quickly stopped and panicked for a moment.  Was he choking on blood??  What was going on?!  If he is choking on blood, I can’t drive him 45 minutes to the hospital like this.  “Okay.  Um, we need to call EMS.  We need to call 911.”

I left the room and dialed 911.  This was a first.  

We once talked about the possibility of calling an ambulance, but this was the first call I have actually made for Lincoln.  Our county EMS wasn’t picking up the phone so they transferred us to Clemson’s EMS and I attempted to sum up what had just happened which is very hard to do, to sum up a scary episode with your medically complex child.  How much do they need to know right now?  Where do I start?

It was a blur.  Poor Denisha had to leave for her second job and Jt was tending to the kids while I made the call.  By the time EMS arrived, Lincoln had calmed down and was stable.  It was like when I was a teenager and I’d tell my dad something was wrong with the car and then he’d drive it and it was perfectly fine, but when I’d drive it again, an engine mount would break or something.  What was disheartening is that EMS couldn’t really help us anyway.  They didn’t have what we needed to deep suction Lincoln and offered to transport him up to the hospital, but by then there was no need.  The paramedics were really nice, but I realized then that we needed to be better prepared for next time.  We needed more equipment.  We had to up our home-hospital room game.

Justin and I had a good heart-to-heart before Lincoln and I headed to the hospital.  I mean it’s surreal that we even talk about maybe planning his funeral now before we get into crisis mode, so that we have eliminated one hard thing.  (We didn’t think we were in a life or death situation, but we were scared.)  I was scared.  I haven’t felt fear like that in a long time and we take for granted the good days, that these precious MMPSI kids can turn so quickly.

When I got to the hospital, I marched straight up to our old floor and saw so many friendly and familiar faces of folks who became like family.  I intended on bypassing the ER and all it’s sickness and repeating his medical history endlessly and asked my friendly, familiar faces to admit us directly.  My people delivered and got us one of our very first rooms right away.  To walk into these familiar four walls was emotional.  To remember the fear and the pain.  To remember weeks separated as a family.  All the while, Lincoln peacefully slept.  And even though I was armed with my organized notebook of medications and cute labelled containers, admission took hours as we poured through each medication and the keto-friendly manufacturers.

“So what does Lincoln do?  What is his baseline?” the nurse asked.

“Well, he doesn’t do much.  He doesn’t hold his head up…”

I paused and my heart ached as I continued.

“…or roll over…or grasp things.  And when he’s awake, you won’t see his eyeballs.  He’ll look like he’s asleep.  BUT he can take a bottle like a champ.  And he can move his arms and legs.”

And then the doctor in the room nonchalantly asked, “So what’s his status?”

“Status?” I said.  “Oh, he’s single.”  We all laughed.

“So what’s his code?” she asked again.

“I’m sorry.  What?  His code?”

“Yes, the DNR.  Do not resuscitate.  What’s your status?”

I sat down beneath the weight of those heavy, heavy words and tears welled up in my eyes.  “I’ve never been asked that before.  I…I don’t know.”

The doctor apologized profusely.

“It’s okay.”  I said.  “I have to ask my husband.”

I quickly texted Jt.  “Status: do we want a dnr?”

“I don’t know how to answer that right now,” he replied.

The doctor continued to apologize as I tearfully told her I understood she had to ask and they needed to know, I just hadn’t been asked before.  We had talked about it loosely, but never had to give an answer.  My phone began to ring.  Oh no!  Jt must have thought we were in crisis mode!  “I’m so sorry, babe!  He’s fine!  I just needed to know what our plan is.  He’s fine.  I’m sorry.”

And that was a first that I would not care to ever have.  And I do not wish for seconds or thirds.  But that is our reality.  Most days I operate in our new normal and think everyday is going to be a little more complicated, but its fine!  We are fine.  And I get comfortable.

Then Lincoln has nights like last night where he can hardly breathe through his congestion and his oxygen was between 81-91 all night (94-100 is normal, by the way) and what is probably a common cold lands us in the hospital.  In retrospect, I think Lincoln threw up while he had a terror seizure.  He has been sleeping well today, but I know when he wakes and night falls, his congestion will ramp up and Jt will be here learning new tips from a respiratory therapist on how to clear his chest.  Sweet boy had a fever of 102.2 this morning which meant antibiotics as preemptive move in case his broviac line is infected.  He had x-rays and labs (one blood draw off his broviac and a needle in his scalp!) to rule out pneumonia and I’m still waiting on those results.  And since I am a new woman this hospital stay, armed with newly acquired medical knowledge and a particular plan of care, I have asked for more tests.  I wonder if my nurse is overwhelmed by me or grateful for such clear direction?  Our next step is to meet with a pulmonologist next week and get a few new pieces of equipment – longer suction catheters, a nebulizer, a chest vest thing, and a cough assist machine.  The more equipment we have at home, the easier it is to keep him out of the hospital.

As I packed my bag this morning, I knew I needed Jesus.  I’ve been worshipping and hiding at the altar of entertainment lately.  I want to escape into good stories, but I’m living one heck of one right now. I know His Word and I’ve hidden it in my heart for years, but I didn’t just need His promises, I needed HIM.  I just want to give him sacrifices instead of my heart.  Maybe it’s just “too risky.”  Maybe I feel like it’s “too vulnerable.”

But this is what is true.

O Lord, open my lips,
and my mouth will declare your praise.
For you will not delight in sacrifice, or I would give it;
you will not be pleased with a burnt offering.
The sacrifices of God are a broken spirit;
a broken and contrite heart, O God, you will not despise.  Psalm 51:15-17

Rend your heart and not your garments. Return to the Lord your God, for he is gracious and compassionate, slow to anger and abounding in love...” Joel 2:13

What could I possibly be scared of?  A Daddy who loves me?!  You would think that my heart would be broken, but so quickly I put my self-sufficiency band-aid on.  I know I can’t be Lincoln’s mom in my own strength, but I don’t actively believe it.  If I did, I’d be on my knees every single day begging God for mercy and grace to help me in my time of need (Hebrews 4:16).  I’d also be searching for Him like precious treasure DAILY, because He is just that.  A treasure.  And even if I lost my whole family and this world imploded, HE is all I need.  It’s hard to say that because I treasure other things more than him today…Starbucks iced coffee with a splash of cream, Netflix, hot baths, my husband and kids, pajamas.  I look forward to these things every day.  I recently was in a place of looking forward to meeting with Him every morning and that quickly faded as I replaced Him with other things.  And it matters.  Because I do need Jesus to bring me back to life, to resuscitate me to abundant living and abiding in Him.

Prognosis: TERMINAL

On the outside looking in, it might seem that every day must be a hard day.

Our normal looks like SAT monitors spread throughout the house, utilizing my Tim-the -tool-man-Taylor-more-power high-powered suction machine to clear a stuffy nose on the regular, oxygen tanks full and ready for an emergency, taking a monthly inventory of meds and a long list of medical supplies, mixing and weighing out formula on a gram scale because every single gram matters, making up a weekly batch of homemade keto-friendly wipies, and religiously washing greasy keto bottles.

The infant car seat, co-sleeper, sit and stand stroller, and baby bouncy seat have been replaced with a big kid bath chair, dreaming up plans for an adaptive handmade twin bed, stroller wheelchair, supportive seat, and an order for a stander.

Instead of buying shoes for a busy body crawler, I’m commissioning my day nurse to crochet some custom-fit booties to keep his juicy toesies warm.  Instead of browsing the toy aisles for special Christmas gifts and looking forward to watching him tear off wrapping paper with glee, we will take his wheelchair up a notch with fun and flashy LED lights.

In the midst of this, we are constantly trying to wean medication or try new ones.  Lincoln’s seizure activity always increases a few days after a change and this past month, we have seen his seizures change to more of the terror/psychic kind, the kind where he cries out utterly terrified as the electrical misfires target the part of the brain that registers fear.  His seizures have also morphed into hollering out and then stiffening.  We can handle seeing those even though it crushes our spirits a little bit every time, but when he does those during church or when we are out, that is hard to bear.  It’s hard to bear because we are re-living the shock, fear, dismay, and sadness of watching a baby seize with people who haven’t seen it thousands of times before.  At the same time, we want to shield Linc and give him privacy in those moments but we can’t predict when they will come on.  I dread the day a stranger sees and panics and tries to call 911 or questions my lack of urgency.

Instead of my colicky baby growing out of endless crying spells, I’m wondering if Lincoln’s crying spells will last a year or two.  They are sporadic but seem to happen 1-2x a week now and always when our night nurse is off!  Good timing, buddy.

And this is our normal.  And these are hard things to do and take in, but we’ve adjusted quickly…really out of sheer necessity.  Raising two other littles doesn’t leave us a choice.  Life keeps on going.

And one day, his life here on earth might cease and ours will keep on going.

Then I’ll be canceling supply shipments, returning oxygen tanks, and re-selling medical equipment.  Those greasy keto bottles will be recycled.  And I’ll give anything to bathe, feed, and snuggle my juicy fruit baby.  I’ll long to hear him cry for hours.  I’ll go out with the other kids and won’t have to think about packing a day bag with particular calculations of meds and formula and I’ll hate the ease of it.  How empty our home and hearts will be!!

This weekend my heart has been struggling to process all of this.  You see, we are a part of a family on Facebook, a group of parents whose children have migrating epilepsy.  This extended family lost three children in five days.

Three children.

Three children like Lincoln.

Stephen, age 8  (September 11, 2009 – October 22, 2017)

Keyon, age 4  (May 19, 2013 – October 26, 2017)

Wiktorek, age 13 months  (September 7, 2016 – October 27, 2017)

That’s not all though.  I met a sweet mom at GHS during Lincoln’s lengthy hospital stay.  April’s son had the SCN2A gene mutation which causes a seizure disorder.  We probably haven’t mentioned it, but Jt passed this same gene down to Lincoln, but it’s the KCNT1 that’s unique to Lincoln which is calling the shots and caused the MMPSI.  Well, sweet Camden had a cold and just stopped breathing.  That was it.  He was with Jesus that quickly.

Camden, age 19 months (March 25, 2016 – October 25, 2017)

So in the past two weeks, I’ve been processing the deaths of four precious little boys and how these are Lincoln’s people.  That we will likely bury a child.  Our people are talking about the children they’ve already lost or the caskets they will get.  There is talk about DNR’s (do not resuscitate orders).

I’ve gotten comfortable in my normal.  I’ve adjusted to life being machines, nurses, and meds.  I’ve gotten too comfortable.  I’ve taken these easy moments for granted.

For there are two little girls like Lincoln who are approaching some hard paths on our road of MMPSI.  One darling two year old’s mama has to decide if she needs a tracheotomy.  A trach, guys.  This is heavy.  There is all sort of talk about chest vests and cough assists and nebulizers and things I don’t know anything about yet.  Then there is another beautiful four year old girl in Norway who is having hip surgery.

Having dozens of seizures a day is only the tip of the iceberg.  This is easy, guys.  This is the easiest its going to be.  Carting my floppy baby around…he’s only going to get bigger and harder to lift out of the tub.  Because these kiddos have low muscle tone, they have more secretions (hence suction machines and such) and they can’t cough or blow their noses or things like that and then infections sit in all of that junk.  Just reading through older posts of other families who have lost kids to MMPSI…I mean these kids don’t pass away from seizures, it’s complications from all of it.  I just read about a child who had passed away from organ failure because of the meds.  So yea, I need to say it…in one way or another, I suppose this is terminal.  A cold leading to infections and not being able to breathe, or organ failure…this is what could take Lincoln from us.

And I don’t live in the future.  I live in today.  But I have to face the possible future and not sweep it under the rug.

If I don’t embrace the possibilities, I won’t cherish the monotonies.

Yesterday at church, I sat backstage in between sets with the band and listened to the guys passionately discuss football plays and I had to walk away.  My heart was heavy with the deaths of these kids and I was forced to face the fact that I am on this path too, that my child has a hard road.  My baby has endured much and has much more ahead of him.  And so do I.

But I won’t be alone.  Christ will see me through and give me all that I need to endure, to finish the race faithfully.  And I have hope.  I know that the best is yet to come for my sweet boy.  I suppose I should save that for another post, but I believe that Lincoln is a sinner by nature, however, I don’t believe he will have the capacity to understand the Gospel or reject God.

Romans 1:19-20:

For what can be known about God is plain to them [that is, to mankind] because God has shown it to them. For his invisible attributes, namely, his eternal power and divine nature, have been clearly perceived, ever since the creation of the world, in the things that have been made. Therefore, they are without excuse.

I believe Lincoln is “with excuse” and that Jesus Christ’s grace covers my baby boy.  I believe Lincoln isn’t deserving of grace, none of us are.  But Jesus stepped down from heaven off of his throne, put on human skin, lived a perfect life, died an innocent man, and came back to life CONQUERING DEATH, and He has gone to make mansions in heaven for the kids He has adopted into His family.  And I believe HIS GRACE ALONE covers all who believe in Him and covers those “with excuse.”  Anyway this short message by Piper is a great listen if this is something you might be struggling with.

And so as I struggle to face the possibilities that lie ahead with my likely terminal son, I am reminded that we are all terminal.  Truly, we will all die.  We just happen to have an idea of what it might be for Lincoln.  My hubby and I could pass in a tragic car accident.  A tree branch could fall on my oldest son or my daughter could choke on a grape.  Proverbs 27:1 says, “Do not boast about tomorrow, for you do not know what a day may bring.”  So how will you prepare yourself?  Have you considered what life looks like beyond the grave?  Don’t get too comfortable in today’s to do’s and tomorrow’s plans that you neglect your soul.  My soul is confident and comforted that I will be with my Hero when I die.  Jesus rescued me from my sin, from my slave master the devil, and He adopted me into His family.  I had everything to gain!  I am a princess in His Kingdom and have quite the inheritance waiting for me.  These troubles are but for a moment in comparison to the glories that await us at HOME!

Letter No. 01 – An Introduction

We have shared Lincoln’s life through Facebook posts for 9 months now, but I have felt for some time now God pressing me strongly to share more, to write, to take risks in being vulnerable and document our journey.  You see, SUFFERING is universal.  SICKNESS is prevalent.  You can’t escape pain in this life no matter how hard you chase success, comfort, love, and wealth.  PAIN will come for you because we are broken people living in a broken world.

It’s not supposed to be this way, you know.  God made man and placed him in the beautiful and perfect Garden of Eden.  Adam and Eve didn’t trust God and chose to believe lies that He was withholding something good from them.  So they did what was right in their own eyes and this world has been broken since.  BUT Jesus left heaven to die for us.  He came back to life and will soon come back to make everything right again, to make everything whole again.  And that is where our HOPE in suffering lies – in Christ, in what He has done and will do, in the promise that THE BEST IS YET TO COME for His kids that call Him Father.

So I’m sharing our journey of suffering and hope with you, friend, because not every hardship and trial can be shared.  Some of you are going through very private, painful ordeals that aren’t necessary or appropriate to share on a platform like this.  God has set us on a path where we feel we can preserve our son’s integrity and privacy while using our discernment to invite you along with us as we traverse the tough ruts of suffering in the road and also the views of hope from the peaks.  I pray God will speak to your heart directly as we navigate the dichotomy of joyous living in suffering together.

Abby