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Headed Home Part 4 - Direct admit June 25 2015, 1 Comment

August 31, 2013  

A follow-up blog to this.

Justin had just drove away with Bryer to bypass the ER and directly admit him to the 10th floor (Neuro).  I was left with Remy and Sander who I snuggled with in our bed for a couple more hours.  I know I fell hard asleep and I assume they slept as well.  I can't remember all the details as to where I took the kids, but at any rate, the kids were situated and I headed for NCH.  

I drove as I have so many times both hands clutched on the steering wheel...I remember being so full of fear...feeling that I didn't want to walk in and see him suffering.  I felt like I was headed into battle, but I carried more weary and despair than warrior in my heart.  It was a beautiful, sunny, warm day.  The sun hit me square in the face, but yet I felt engulfed in such darkness.  So much so, I had no words to pray. I needed to talk to somebody.  My mom was sleeping in preparation for her night shift at St. Ann's Hospital, so I dialed my friend Chrissy, who lives in NC.  She is a prayer warrior and Sister-in-Christ.  I talked with her the whole way down updating her on the situation, what had transpired the night before, the direct admit and ALL I was feeling.  I remember telling her I felt as though I was headed into hell and I didn't want to go.  I certainly wasn't feeling brave or full of courage.  My tank was on empty and my trusted artillery seemed to be MIA.  I can't remember exactly what she said, but I know it lifted me enough to keep putting one foot in front of the other as I made my way past the security guard and onto the elevators.  

I ended the call and swiped my badge to allow access into the 10th floor hallway.  As I walked, I noticed a commotion outside a room about halfway down the corridor.  I wasn't sure if it was Bryer's, as I hadn't been to this room yet.  But my step quickened anyway.  As I got closer, I could tell it was in fact his room.  There were 2-3 people outside and when I turned the corner, there was a room full of doctors and nurses surrounding his bed.  

"What's going on?" I stated in my unintentional Mom-has-entered-the room voice.  It was obvious Justin had been so busy, he hadn't had time to warn me with even a quick text.

Our eyes met.  It was a familiar exchange of helplessness.  He was right in there at Bryer's side assisting the 6 others.  I managed to catch Bryer between busy bodies.  He was as white as snow retracting…heaving for breaths, but quickly almost panting, if that makes sense.  His eyes were opened and staring blankly off to the right, rimmed in red and purple from such a horrid night of seizures and zero rest. He jerked in a repeated fashion, the seizures still had their grip. Remember, that's why we brought him in….but now it seemed we were reacting to something new.  His head was turned my way and I could see the sweat on his brow.  

"Oh Jesus, help him." I whispered.  I had a feeling come over me…he's going to die.  Right here.  Right now. Because let's be realistic, HOW MUCH MORE CAN THIS BABY ENDURE!  I fled to the bathroom to grab a rough piece of toilet paper and wiped the tears that had started to spill.  I paused and looked into the mirror.  I had seen her face before.  

I stepped back into the chaos.  Just in a diaper, I could visualize his g-tube site.  I'd developed an eye and keen sense of awareness for that thing.  It was oozing green from around the site as he simultaneously vomited green bile. It was clamped shut like what we'd do at home between feeds.  It shouldn't be oozing like that, I made note.  All the while, his temp is climbing and his stats were declining.  

"Hey, can someone put his g-tube to drain?"  I loudly asked.

"You're right," a nurse responded.  It was put to drain and the oozing subsided, but the green bile was only diverted and began to quickly fill the bag. 

His diapers were filling just as quickly with the same looking green ooze and they couldn't keep up.  Bless Justin, he took over the rapid diaper exchanges and clean-up duty.  I love that man.   

I made it to the head of the bed and began to rub his hair.  He needed another IV access and fast for fluids.  The IV team came, but even with their expertise, they always had a difficult time with Bryer.  By this time, the PICU team had come up to help transfer.  I saw the familiar face of one of the fellows. 

IV team lady was about to stick when the fellow said, "We need to move him first.  I'd be more comfortable if he was downstairs." 

"Ok but his sites will cool by the time we can get him down there," she curtly replied. 

"I don't care, I want him down there now!"  She barked.  The IV lady backed down.  They moved him and I was so glad to be on our way to the PICU.  

Next came IV access.  Six tries for two IV's, one landing in his belly and the other in his left arm. Not bad in comparison as sometimes it took up to 13 painstaking attempts.

The PICU always had a way of getting things under control. They managed pain, decreased his work of breathing, put him on a cooling blanket for his fevers, started fluids etc etc. They got him comfortable, for the most part, which is ALL I could ask for or wanted.  Justin went home to be with the kids.  It was now about 5pm.  I remember sitting on the PICU couch alone taking in the happenings of the previous 48 hours... it was a jumbled mess.  I had no answers yet for what was happening. We knew seizures, but now what did he have going on?

 

In walks my Dad.  I wasn't expecting him, but he could not have come at a better time.  As any frightened little girl wants her daddy, that was me.  I just wanted to crawl into his big lap and let him make things better. And I am sure he felt the same. 

He sat next to me on the couch and with a deep breath said,  "What's going on?" The full awareness that we had JUST brought Bryer home less than 2 days earlier lingered with his question.  He put his arm around me. 

"Oh Dad, " I sighed as I buried into his embrace.


Headed Home Part 3 - Pit Stop June 22 2015, 0 Comments

August 24th, 2013

With sedation on board, we actually had a decent night.  He slept except for when his BP was taken.  Then he'd fuss, but I could soothe him back to sleep pretty quickly.  He loved having his chest pat.

I got a text that Kari would be coming by mid-morning with some coffee.  Praise the Lord!  I was so happy to see this.  It had been pretty lonely.

But at 7am, mid-morning seemed so far away, so I snuck out to get some oatmeal and a yucky, but free, coffee.  It was always so interesting to see the parents venture out from their kid's room. Like walking-wounded emerging each from our own unique battlefield, we were all sleep deprived, disheveled, red and swollen eyed, wrinkled clothes or pajamas.  We wore our P-badges without much notice anymore, as they pretty much became a part of us.  It was almost like a little fraternity, yet no one really spoke unless in an elevator together. We might have exchanged a meek good morning with a forced grin or make the extra effort to hold the door or push the button for each other.  There was just this mutual understanding.  We were hurting. We were stressed.  We were sad.  We were tired.  We were worried and confused.  You didn't ask questions, but your human curiosity wondered what they were up against. You could kind of get an idea by which floor they push in the elevator.  Floor 2 = bad, picu. Floor 11-12 = bad, oncology.  The other floors might be more tolerable, but regardless we were all connected.  Maybe it was strength in numbers? Even without knowing their exact struggle, you knew you weren't the only one.  

Kari came and after some updating and visiting, we decided she'd stay and I'd go home which would allow for Justin to come down.  The medication for the seizures, Sabril, had been delivered to our house and he'd be bringing it down so we could get it started.  I left around 1pm.  

 

It was a beautiful day, so I decided to take Remy and Sander to the pool, something we'd done maybe a couple times that summer. We met our friends Todd, Amber and their son James.  What a vast and welcome change from the 4 walls of the PICU.  It was hard not to look around in a slow motion glance taking in the life, joy, carefree fun, splashes, light conversations and WARMTH of the sun that was happening all around me.  Surreal.  I imagine it's similar to what a weary soldier might feel when re-acclimating to home after deployment. And if it were not for the two popsicle-stained faces that interrupted my gaze, I may not have been able to break out of the prison of guilt to join in the fun.  But I did.  We played hard and for a moment I didn't think about Bryer who was laying in a bed at Children's.  That was until I noticed one of Justin's friend's mothers was there and I said hello.  I knew she was fully aware of the situation and thinking for her (which my mom constantly warns against) I imagined she was appalled that I was there enjoying the pool with Remy and Sander instead of being at the hospital.  What kind of mother was I?  Back to guilt prison I went. 

But the kids had a blast and for moments I did too.  I reasoned that it was healthy for them to see their mom smile and to be with me having fun.  Later that evening, the three of us went to Yabos Tacos with Mom and Dad and then UDF for ice cream.  It was a nice change of pace.  My Mom and Dad had just returned from Indiana where they attended the funeral of my childhood youth pastor.  I had obviously been unable to go, but was shaken to hear of his sudden death and mourned for his wife and two high-school aged sons he left behind. She shared with me part of the message which rang truest for her.  It was about living….Bruce was really living now.  "And we want Bryer to finally live, really live," she said. She went on to express her anticpation for what God is going to do in our situation. She encouraged me, "We just need to keep trusting, honey. We've put Bryer in His hands and that's where he is best placed.  He will not forsake us or leave us in this."  Oh how true that was and would prove to be.  

Before bed, I got an update from Justin.  Remember the night they emergently put his central line in?  They had put it into an artery instead of a vein in his leg.  Thankfully, one of his PICU nurses found the mistake, but not before it had caused a major problem.  Poor baby.  He now had a clot in his leg which left it cold, gray and with a weak pulse.  As with any clot there is always risk it could dislodge and have fatal consequences.  They had to consult vascular surgeons from OSU as to what they should do and surgery was in the wings. But, with close monitoring around the clock they could see he was getting enough flow and with heparin (blood thinner) on board it was slowing improving. Surgery was thankfully avoided. However, it was enough to keep him in the PICU as heparin given to a baby is pretty serious, I learned.  Eventually, we were able to switch to Lovenox which we would later need to learn how to administer by injection at home twice daily.  Hemotology, another specialty was added to the list.  Ugh. 

The next few days were spent monitoring his leg and observing him on the new medication via EEG as he also began to recover from the enterovirus.  He was moved out of the PICU "to the floor" where we spent a couple more days ... and he was less than enthused with the ipad:)

Finally, it was determined he was well enough to go home.  So, later one evening we loaded a red wagon, grabbed the giant dog ballon that one of B's favorite NICU nurses had dropped by, got all his discharge instructions, injections and medications and headed out the door.  

 

Wow, that sentence made a discharge seem WAY too simple.  Ha. We got home that night, August 29th, around 10pm and were welcomed home by a trio of smiling, happy-to-have-you-back faces.  Here's one:

Ahh, home.  After a 10 day admission, I was so happy to have us all there together.  It already felt different.  I looked forward to living my new found freedom of embracing instead of chasing, gazing instead of tracking, snuggling instead of strengthening… Unbeknownst to me, it was a mere pit stop and would be Bryer's last. We'd be headed back to Nationwide Children's hospital in 36 hours.  


Headed Home Part 1 - Embrace Instead of Chase June 16 2015, 0 Comments

I've been going back through my journal.  Some of my writings there are lists of facts, dates, times, doctor's names and stats with short bursts of emotion and some prayer.  I'm trying to go back and fill in more detail.  It's quite the task, but one I am compelled to complete. I just want to get his story down.  So for those interested, here is a part.

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West Syndrome.  Bryer has West Syndrome. We were told this yesterday (August 22, 2013).  Dr. Mytzinger, Director of Infantile Spasm Clinic, delivered the news.  

Let me back up.  

Tuesday evening, August 20,  Bryer was fussy and I could hear that he vomitted.  I went in about 11:20pm and saw he had.  I changed his bed, wiped him down and and got a new onesie on him.  I layed him back down.  He spit a tiny bit again.  I got him up and decided to hold him in the rocker.  He was fussy and I could tell not feeling well.  

Still battling the stomach virus, I thought.  He had had high fevers since Sunday night/monday morning…105 actually.  We took him to the pediatrician who suspected enterovirus as Remy and Sander had just gotten over the same thing.  But, we were managing and thought he was over the worst of it.  Mom stayed Monday night to give us a break.  It was a bad night.  But, by Tuesday afternoon he seemed to be doing better.  His temp was low grade.

Back to being in the rocking chair.  Rocking, patting and singing, I could feel him start to heat up.  Suddenly, he tensed, eyes widening in fright like he was scared out of his mind.  A look I have never seen and didn't want to see again.  It was followed by a cry like he was scared…almost a whimper.  Then he went back to whining and fussing.  Odd, I thought.  His sudden jolt and terrified face had actually made my heart jump.  I had never seen him do anything similar before.

A few minutes later it happened again.  And again, it scared us both.  

I said, "Justin did you see that?"  He was busy readying his feeding pump and about to administer his midnight meds.  I told him to come watch.  He did it again…same thing. 

"I think these are seizures or some type of spasms.  Get your camera." 

He captured a few of them. They seemed to increase in frequency and intensity, when all the sudden he stiffened up, his eyes widened, and he stopped breathing in my arms.  

He turned blue.

Justin swiftly scooped him from me and took him to the floor to assess.  

I had my phone and frantically yelled, "Do I call 911?  Justin! Justin want me to call?"  I wish I could say I calm and collected, but I was not. 

"Just give him a second.  Bryer! (pause)  Bryer! (pause) Bryer!" He called to him.  He laid motionless, his color was returning, but he was still dusky and blankly unresponsive.  

I pressed 911 for the first time in my life.  I gave our address and they were there within 2-3 minutes.  I ran down to greet them at the door. I could immediately hear the sirens.  We brought him down and laid him on the carpet.  He was breathing, but still unresponsive and his color was bad.  His O2 was in 60's.  They took us, no sirens, to Children's.  I rode with him in my arms on the guerny.  They gave him oxygen as he stared aimlessly.  About half-way there, they hit a bump and it jolted the ambulance.  He let out a small erruptful cry and seemed to come out of it a bit.  It was all so strange.

Bryer and I were in the ER from 1:30am-6:45am.  His g-tube was leaking green bile.  He started having white jelly-like stools that were so foul, something none of them had ever seen.  I could get him settled with eyes closed for maybe 5 minutes at a time before he would startle or before they bugged him.  There was no sleep or rest. His camo onesie was soaked with sweat, so I took it off.  I changed diaper after diaper of the white jelly.  After a lumbar puncture and 6 IV attempts, they decided to transfer us to T6, the Infectious Disease floor.  

I was not happy about that.  At all.  I tried to tell them he just needs to go to the PICU.  They were under the impression that the seizures where febrile.  I argued that I thought they were spasms and that neuro needed to be involved.  Having a child with no diagnosis, you tend to read a lot on everything.  I had read of them before.

It was now Wednesday morning, August 21.  T6 is in the old part of the hospital.  It's the strangest feeling being there - like a different universe - or stepping back in time.  I didn't feel comfortable. 

I finally got ahold of Mom to update and Justin came around 9am.  He had stayed at home with the kids.  That's just how we rolled.  

We waited for rounds which didn't happen until 12pm.  Meanwhile B, dressed in a little yellow gown, lay awake and constantly moving. He was unsettled and seemed to be in pain.  Justin and I left at 1:30pm so he could get the kids and I could nap.  

Mom had arrived to stay.  She later told me that music therapy came by.  It struck me as funny and then with sweet sadness.  Oh mom.

She heard music/singing coming from next door.  It sounds like angels, she thought.  

Curious, she peeked her head out and saw many doctors collected outside the door.  Not having any concept of music therapy, she thinks, "Oh my that poor child must be dying and they brought the "angels" to sing for him/her." 

A few minutes later one of them popped their head in,  "Would Bryer like music therapy?"

"Heck yes!" Mom said.  So three "angels", as she describes them, came in to sing.  They sang Twinkle-Twinkle and something else.  

Bryer quieted. 

My mom then asked if they take requests.  Yes!

Can you sing Row Row Row your boat?  Yes!  And we can do it in a three part harmony!  

Oh my goodness, that exchange made me laugh.  But it was one of his favorite songs that I repeatedly sang, so I knew why she had requested.  

Next she requested Jesus Loves Me and they sang it beautifully… just like she'd imagine angels would.  Mom was overcome by it all, and buried her head into my dad and sobbed.

Later Justin returned to relieve her while I stayed with Remy and Sander. They were finally going to move forward with the EEG we had asked for.  Meanwhile, he lost the one IV they got in his foot after 8 attempts.  IV's for him were like gold and every time I heard he had lost one was like a sock to the stomach.  They came back to try again. After one poke with no success, they said, "Sorry there is nothing more to try."

So they went off for a short EEG.  When Justin and B came back, my friends Amber and Brooke had come with cookies and Jeni's ice cream.  They sweetly prayed over B and encouraged Justin.  They left around 9:30pm and shortly after, around 10pm, Justin then went down to Subway.  He had no sooner sat down, when a Dr called him on his cell phone and said he needed to get back up to the room.  "Bryer was failing," they said.  

Justin ran back.  They had tried 4 more times for IV with no success. He needed fluids.  He was in septic shock which means his BP was low, his temperature high, his HR high and his breathing was rapid. They transferred him to the PICU to put in a central line.  After he got the fluids, he did stabilize.  He had still not slept and never did that night even with morphine, chloral and a psych drug. UNREAL.  Justin said he fell asleep for a brief 15 min.  

I got the call just after I had fallen asleep at midnight and he shared the update.  He said it was bad, and I could hear the deep concern in his voice.  He was waiting for them to get a line and would call me after they did to advise whether I should come or not.  

In the time between Justin's calls, I have never felt so broken in spirit. Although my heart had broken several times over Bryer, it felt like the remaining pieces were shattering.  I had gone through many, many situations with him, but in that moment…I had never felt so torn. Things seemed different this admission with the seizures, like maybe this was the end.  I didn't know what to pray.  My heart's desire was that he'd be healed.  But, I was beginning to feel like I needed to pray God's will over mine.  So, I prayed, "Lord have mercy on my son! Bring him comfort, peace and rest.  Help me to accept your will for him and for us. Lord, prepare my heart."  Those were my succinct prayers.  Over and over.  

I got up from bed and walked back and forth in my dark bedroom.  My mind raced in a panic,  "But, Lord, bring him through this so I can be with him if you choose to take him.  I want to be with him!"  

I called my mom. I text Kari and Chrissy for prayer.  I then heard from Justin he was stable.  I finally fell asleep at 3:00am and awoke to Remy standing at my bed at 7am.  Sweet girl.

Remy's stay-and-play for preschool was that Thursday morning. I felt it was important for me to be there, which is was, but now I was completely stressed about being there and not with Bryer.  It was an all too familiar two-way feeling I lugged everywhere I went.  I got the kids up and ready, taking Sander to Kelly's, our beloved sitter.  On our way there, Sander sadly said,  "Me want to go to hospital. Me want to see Bryer."  Remy in the way back pipes up, "Me too!"  She then said something under her breath that I did not hear. I asked her to repeat it. Again couldn't hear.  "I said, POOR THING!" she shouted.

 

Remy went with Kari after the stay-and-play.  She took her and Eli to the zoo and "they had a great day" I later received via text.  It was always a lift to hear things were well on the home front.  I headed down to Children's.  Justin needed relief.  I knew the grueling night he had.  I'd had some of those as well.  He said Bryer yelled all night long and never slept.  It was my turn to stand guard over his electrodes as he kept pulling them off.  He was quite literally out of his mind and it made me sick all over to sit by and watch.  Neuro didn't want sedation because it would mess up the EEG.  Ok, I understood that, but it didn't make it any easier.  A Neurologist came down and said they wanted to keep EEG running for another 24 hrs. UGH.  They weren't catching Spasms, just abnormal EEG.  They adjusted the electrodes and within 10 minutes, we got a call.  They got what they needed and Neuro would be down to talk with us.

Enter Dr Mytzinger, Director of Infantile Spasm Clinic, about 5 minutes after Mom had shown up.  She happened to call off work in order to come down to NCH.  She came at THE right time, God's timing.  Dr. M came to the door.  He was a dark-haired, young handsome-ish man wearing a white coat and dress slacks.  He said, "Can you come with me?  Lets go talk down here. " And with that he made a motion down the hall.   He led us into a family room.  My legs began to shake once I sat in the chair.  I knew he was going to tell us something.

"Bryer has Infantile Spasms.  They are a certain type of seizures we see in children under 12 months that present as a certain rhythm on the EEG.  Bryer has an underlying brain problem.  We don't know what causes his brain problem, but we know the brain problem causes Infantile Spasms and a chaotic EEG.  Brain problems cause Developmental Delays.   Infantile Spasms and chaotic EEG also contribute to Developmental Delays.  We can't fix the brain problem because we don't know what is causing it.  But my job is to take the Infantile Spasms and chaotic EEG out of the equation and hopefully give him a chance to reach his full potential, whatever that is.  We will do this with a medication called Sabril which we will start, August 24, once it arrives.  You will administer it for 2-3 weeks during which time you will be looking visually for Spasms in Bryer.  If you don't see any, then you come back to Clinic for an EEG to see if his EEG has also improved or calmed down.  Basically, this will gauge whether the drug is working.  If it is, we continue on for no more than 6 months.  If not, we talk about next steps."

The other option he discussed for treatment was something called ACTH, a steroid.  Bryer was in no condition to try this drug.  It wipes out your immune system.  It would have killed him.

He went on, "If you have Developmental Delay, chaotic EEG and Infantile Spasms then you are said to have West Syndrome.  The prognosis isn't great."  

I asked if many kids die in his clinic.  "Yes, many, but not all," he answered. 

I asked how the medication would help him.  What could we expect to see as a result if it began to work?  I was so hopeful thinking that perhaps this will help him develop.  He answered, "If Bryer smiled before, he might smile a little more.  If he enjoyed listening to music, he might enjoy it a little more." 

This was the first "something" we had to go on.  But still there was, "He has a brain problem, but we don't know what is causing the brain problem." It was never black and white with Bryer.  Yet, up until that point, no Dr had ever stated that Bryer had a brain problem.  There was always this hope I held, "He could improve if I do XYZ therapies for/with him." This was the first time that any expectation for him had been set or we were given a possible prognosis. 

As I walked back to his room that night, I felt the weighty titles of Occupational Therapist, Physical Therapist, Audiologist, Visual Therapist and Oral Therapist shed from me with each step. 

And when I stepped back into his room, I was just Mommy.

I felt free to just love him.  

Of course there would be time for therapies and of course I have always loved him, but I could now leave the bulk of those therapies to the experts and I could just enjoy being his MOM. Before, should Bryer be awake and pleasant at home, I would feel immense stress to get some type of quality therapy in feeling his progress or lack there of was in my hands, because no one had told me otherwise.   I wasn't giving up.  No, I was just able to let go and embrace instead of chase. Embrace instead of chase; it felt so healthy.

I asked to hold him and since they had gotten what they needed on the EEG, he was sedated enough to be settled and snuggled. 

We rocked in the dim light of his monitors.  In peace.

Mom pulled up a chair and we talked through everything we had just heard as the tears gently fell.  We talked about what it meant and how it made us feel.  We talked about how much we loved this baby and how happy we were that he was resting in my arms. 

Then I called Justin and told him everything.  

 


A Gaze Toward Heaven June 01 2015, 2 Comments

In the acuteness of my grief, in the immediate weeks following Bryer's death, I felt an overwhelming sense of peace and relief.  The suffering had come to an end and he was in glory.  I felt his memorial service was a celebration of his eternal life and the Hope we have in Jesus. To many it was an introduction to Bryer and summary of his earthly life.  I remember smiling more than I cried that day.  

Oh I deeply missed him, but the freshness of his hellish suffering, especially towards the end, was still too close to have wished him back.  And the peace that had consumed me during his last breaths seemed to powerfully linger.  

In those first few weeks, I felt myself recuperating physically from severe sleep deprivation and the deep anxiety and stress that had produced not so pleasant physical ramifications. 

The service was behind us and we were settling back into a normal pace of living.  I thought, ok I am doing pretty darn well.  I existed in this cloud of engulfing peace.  So you can imagine how shook-to-the-core I was when I experienced my first Post Traumatic Stress event.  It was as if a powerful and most terrifying monster had reached up through cracks in the floor boards, and with blackened, long-nailed hands, grabbed my ankles and pulled me down into a torturous sea of images and movie-like scenes from Bryer's most terrible bouts of suffering.  Each time it seemed that there was one "feature film" that was on display.  They would bombard my mind, my eyes, my heart and sear my soul with his suffering. I couldn't escape it.  It completely took over.  I couldn't breathe at times.  My heart pounded out of my chest and I'd heave and sob at the horror as if it were happening for the first time. 

 

 

I was so taken back.  "Why is this happening, Lord? I have your peace.  You gave it to me!"

It was time to grieve his suffering.  All the traumatic events of his life...and there were a lot.  I hadn't fully dealt with them in real time.  I couldn't break then, but boy was I breaking now.  

I prayed through it.  I said the name of Jesus over and over again until the images subsided and my breathing and heaving slowed.  The enemy was attacking and trying to steal my peace.  I battled back with truth and the power of His name. I turned to scripture.

During the several months of these random battles, I feel as though God revealed something to me.  Let's see if I can explain this.

One day, I was scrolling through pictures of Bryer on my phone as I tended to do.  One that I had looked at many times made me stop and gazed a little longer.  It was a picture of him during one of 36 + hours where sleep was traded for thrashing, screaming, moaning, whimpering and seizing (August 22, 2013).  He would not and could not rest. 

He had become still for a rare few moments and I snapped this photo. I recall those hours with tears in my eyes.  We were in one of the top Pediatric ICU's in the country, and not to their fault, but nobody seemed to be able to help.  I have never felt more helpless and insufficient as a mother.  

As I looked at the picture this time, however, this conversation popped into my mind.  

Bryer with a gaze towards heaven, "Daddy, I am so tired and weak.  I want the rest and peace I know is with you. How much longer?"  

God answered, "Bryer, my sweet boy.  I love you so much!  It won't be much longer.  Sweet child of mine, hold on. I am coming to rescue you, but there's still more purpose left in your time on earth!  There is still more I have to teach your Mommy and Daddy." (more on that another time)

Now, did that conversation really happen?  Maybe not.  But it occurred to me that it COULD HAVE.  It was put on my heart that I had no idea this side of heaven how the God of the Universe comforted Bryer during all those times that I anguish and grieve over. I have no idea how He communicated with him….soothed him.  By touch? Sight? Sound? Smell? Angels? I prayed for it continuously, so why wouldn't He have answered? I prayed Bryer would feel held even when we weren't there.  That he would be comforted, protected and feel secure. That love and peace would permeate his body into the crevices where my love and touch could not reach.  

Did he experience pain, of course.  Did he suffer, yes.  But, I believe God was a buffer, perhaps softening it more than I know or could see. Or if not in that way, by being WITH Bryer in ways I cannot comprehend.  

"He holds the whole world in His hands. I'm holding onto His promises.  He is faithful.  He is faithful." Lyrics of a song I often sang to Bryer. 

Yes, our God is faithful like that.

Try as I may, I couldn't be Bryer's all-in-all, but God could.  Bryer had many limitations.  His eyes were failing.  His hearing was imperfect. His brain proved to be deteriorating perhaps not allowing recognition by any means towards the end.  But GOD isn't limited in His ability at anything, let alone finding a way to comfort and reveal His presence to my baby boy.  

Thank you, Lord, for putting that on my heart.  It has comforted me ever since.


Double Reinforcement March 07 2015, 0 Comments

For anybody that's bought a Bryer's Song shirt or read this blog, you are familiar with Isaiah 40:31.

"But those who wait on the Lord shall renew their strength.

They shall mount up on wings like eagles,

They shall run and not be weary, They shall walk and not be faint."

You can read more here on how this verse came to be so powerful and pivotal on our journey. 

A quick summation - A dear friend had written the verse in large print and drawn a cross in the center with Bryer's name in it. I placed it on the wall behind his crib with prayers and scripture from many others.  It stood out and I read it all the time.

Today, I got a text from my drawer-of-the-cross friend, Catherine:)  She sent me a picture she had seen in her Time Hop.  It was a picture of the above scripture she had made 2 years ago today.  She just wanted me to know she was thinking of me and of Bryer.  Sweet.

A few hours later at my niece's basketball game, my sister in law, Lisa, is sitting next to me and pulls out a beautiful blue journal.  I love journals.  I was looking at the back and immediately noticed the butterflies…Nationwide Children's Hospital logo…and said "Oh Lisa, look at those butterflies, this is beautiful!"  Then she turned it over with a smile and there was Isaiah 40:31. Amongst the butterflies, how fitting.  

Isn't that sweet?  Twice in one day.  I love how He works! Yes, I credit this to Him.  He is reminding me of the hope and the renewed strength I gain when I trust in Him as I continue to walk out my days here on earth.  But also the hope turned eternal reality my boy is experiencing this. very. moment.

I can't lie, I've been weepy and really missing B lately in a new way that's hard to explain.  Not sure if this is one of the steps of grieving?  I say that as if someone has it figured out!  Today was one of those days.  It crept up on me after I was at Nationwide Children's Hospital for orientation.  I had to get labs drawn as part of the process.  The lab is down by where all the out patient clinics are housed.  I hadn't been that way since I had taken Bryer on his many appointments the summer of '13.  On my way, I passed by a little corner with couches and a couple of chairs.  I paused.  It was a little nook B and I had taken over one afternoon in-between clinics.  We had spread out and were killing time before audiology.  I held him and he wore a striped yellow onesie and hearing aids.  He was happy and talking and we enjoyed being by the window.  I talked to him and we played with his toys.  As I paused there, I saw this in my mind as vivid as if it were happening right in front of me.  I hadn't thought on that moment for a long time, if ever.  I could smell him.  Feel him.  Hear him.   I think God gave me this too, for it's harder and harder to "find him" like this.  And when I do, it's a gift.  A gift followed by an ache.   

And God knew this would be, so He gave me not one, but two, reminders. He's got me.  He's got Bryer.  And someday He'll have us both in the same place forever.  And that's what I choose to hold onto as I put my weary head to the pillow tonight.  <3


Big Brother Love January 12 2015, 3 Comments

I can't even begin to tell you all the ways people ministered to me and were the hands and feet of Jesus during Bryer's life and after. They picked up the Sword of Truth and spoke encouragement. The helped me fight.  But sometimes it’s wasn't even words they offered.  It was their presence.  They came along side me. The enemy would have me believe many times that I was in this alone...but I wasn’t.  

My husband, my family, my friends and my church all battled beside me. Oh my, there are countless examples I could give from what my army did for me, especially from the women in my life, but I want to share this one.

And it seems like the perfect day to do so, in honor of my brother Aaron's birthday.  

It was days before Bryer died...he had coded in my arms and they had placed him on a temporary type of life support that could not be continued longer than 12 hours.  

As I waited on Justin to get down to the hospital, I sat on the couch alone in the ICU room with Bryer.  I felt heavy and defeated. My head must have literally been hanging with eyes on the floor when I heard the familiar sound of the rainbow curtain pull back - it was such a distinct "rip". I looked up expecting to see another clinician of sorts coming to evaluate Bryer. 

But instead, there stood Ryan and Aaron.  Aaron had been there earlier, but had accompanied my mom down to lunch for awhile. So very unexpectedly, both of my brothers stood before me.

I don’t have sisters (biological anyway:) but God gave me two amazing older brothers.  If any of you know them, they certainly have a presence. They are tall and handsome, not that it matters, but it's the truth. Especially when coming from the middle of their work day in crisply pressed shirts with remnants of summer fishing on their faces as was the case that day.

They had shown up and it was just what I needed.

They couldn’t save Bryer anymore than I could, and there wasn't even much they could say, but they came.  They listened.  I was the little sister, and they were the big brothers in every since of the word. They wrapped their arms around me and they held Bryer’s little hand in the palm of their very big hands while I took time to talk with Justin.  

It meant everything.  If you know the hymn, "Love Lifted Me", that's what was happening.  "When nothing else could help, love lifted me."

Thank you, Ryan and Aaron, for your big brother love in those moments. I am so blessed to have you.

 

 

 


Blessed assurance January 05 2015, 4 Comments

Typically, a bed in the old J4 NICU didn't have a wall or window, just a sweet little neighbor on either side with curtains as a divider.  There was a walk-way that ran behind each bed spot with the mirror image set-up across the isle. When Bryer got moved to Bed 6, we were so happy to have wall space to hang Remy and Sander's cute creations and paintings for him...and the window was a welcome blessing.  Natural sunlight! I loved pulling the blinds and letting the sunshine fall all over Bryer.  It made his eyes sparkle that crystal shade of blue and that made me happy.  It occurred to me one day as I was rocking and staring at the blank wall behind his crib, that we should be intentional about this space.  Yes.  We needed to make the most of it.  It was right by a drinking fountain that other parents, visitors and staff frequented. Hmm. Ok, I thought.  It could possibly make for some encouragement as they got a drink?  Maybe?  So, I reached out to friends and family asking that they send a prayer or encouraging scripture or their kid's drawings and we would put them on his wall.  They started coming in…from our friends and their littles, my cousins, Bryer's cousins, my aunts, Bryer's aunts, uncles, C'ma, Papa….and of course a prayer from me:) I found a place for each one. It was so uplifting.  I read them, sometimes aloud and sometimes silently, as I put them up with whatever medical tape at my fingertips.  There. I stepped back. It was done and it was wonderful.  

In the end, it became this sort of proclamation of faith....if you had read even one of the postings....you'd know just how over abundantly the baby boy in Bed 6 was WANTED and intensely LOVED.  (Writing that just filled my eyes with tears and made my nose sting). Oh Bryer, you are still so loved, buddy.  

As the days went on, wouldn't you know, it turns out that the wall most certainly blessed me more everyday than it did those people at the drinking fountain or anyone taking care of B like I had intended! :)

It never got easier leaving Bryer there…in fact it got harder as time ticked on. I guess I felt a sense of comfort knowing he was literally surrounded by God's word and prayers from those who loved him…especially the prayer from me. I felt like I was in constant prayer for him, but just the fact that I had one of my prayers posted near him felt like I was covering him ALL THE TIME.  I would find myself, when he was settled in his crib, walking over and reading every one of them through, sometimes softly over him, sometimes just to myself. There were other times, I was on the other side of his crib and could only see the ones that were in larger print.  I'd read and pray those over Bryer too.

On one particular night in March 2013, it was dim lit and I had already gone through the necessary steps to ready myself for leaving.  I was standing by his crib.  The heaviness of the black and blue diaper bag hanging on my shoulder mimicked how I was feeling.  The bag had been brand new at his birth, one of the few new things I bought for Baby Largent #3, but at only 5 months old, it already seemed so worn.  If I had to guess, I was probably wearing my reversible Nike blue zip-up…I wore it all the time…oh and a hat because who had time for washing and fixing hair?  His night-light cast a warm blue glow from within his crib and his noise maker played the ocean waves.  

Sigh. I just looked at him as I tended to do.  

His paci had fallen and laid by his head on the boppy. Little Cow was tucked beneath one arm.  I could see the red glow of his pulse-ox monitor from beneath the sheet that blanketed his small body. "What's going on with you, buddy?  Where are we headed?"  As I looked up in thought, my gaze focused on two scriptures posted to his wall.  I read them out loud as I had done many times:

"For I know the plans I have for you, declares the Lord.  Plans to prosper you and not to harm you.  Plans to give you Hope and a Future."  Jeremiah 29:11

But this time, I didn't want to hear it. 

With wet eyes, I questioned, "Really, Lord?  Really?  How does this apply to Bryer?  You have plans to prosper him and give him hope and a future? Please, enlighten me.  I'd sure like to know where we are headed.  Nobody can tell us. Can you please?"  Before I could question anymore, my eyes moved down to read the one below it:

"For those who hope in the Lord will renew their strength.  They will soar on wings like eagles.  They will run and not grow weary.  They will walk and not be faint."  Isaiah 40:31

"But Lord, will Bryer ever sit-up or roll over? Let alone walk or run?  Will he ever eat again by mouth?" I adjusted the weight of the bag on my shoulder and breathed deeply.  I looked at my boy again. So many unknowns.

My heart began to fill with that familiar feeling of angst. 

Back to the wall my eyes went. 

I read them both again.  But, this time, it was as if God, with His warm breath of Heaven, wiped clean the lens.  The foggy lens from which I had been reading had been clouded by the earthly HERE and NOW. But in that moment, I was given Clarity and Perspective.  

This was pivotal for me in our journey with Bryer. 

By the time I finished reading them aloud, the burden on my heart had lightened.  It's amazing how scripture can do that:)

Ok, Lord.  You are right.  

If not here on earth for Bryer…then there in ETERNITY.  Your ultimate plan and future for us is to be with YOU forever.  That's why you created us in the first place!  No matter our condition or brokenness on this earth, we will be made new in Heaven.  We will be made complete with the fullness of life. Yes, we will walk and not grow weary…run and not grow faint all the days of our eternal life. This is THE plan and future for us…and for my Bryer.  

I had known this to be true, but it was a fresh revelation at Bed 6 that night. And oh how I needed it.  

It was also a paradigm shift.  I read scripture differently.  I think about our time here on earth and our deaths differently.  I think about what my hopes and dreams are for Remy and Sander so very differently. More important than any accolade, athletic achievement, relationship, degree, physical appearance or career status for my children, I desire that they be saved from this world, just like Bryer.  Of course, my heart's desire is for them to live a long, blessed life here, and I pray to go home before them.  But I want them there.  In heaven.  I pray they would one day choose to be held by the blessed assurance that is Jesus.

(Pause) Blessed assurance (more pausing and thinking) ... I've not thought of those particular words coupled together in quite some time.  They come from an OLD hymn during my orange church pew days as a child. I am digressing, but let's see where this takes us.  I just googled the lyrics:

Blessed assurance, Jesus is mine!
Oh, what a foretaste of glory divine!

Heir of salvation, purchase of God,
Born of His Spirit, washed in His blood.

Refrain:
This is my story, this is my song,
Praising my Savior all the day long;
This is my story, this is my song,
Praising my Savior all the day long.

Perfect submission, perfect delight,
Visions of rapture now burst on my sight;
Angels, descending, bring from above
Echoes of mercy, whispers of love.

Perfect submission, all is at rest,
I in my Savior am happy and blest,
Watching and waiting, looking above,
Filled with His goodness, lost in His love.

Wow.  Perhaps you or someone needed to hear that hymn today. It certainly uplifted me. When I think of Bryer, yes, this is his story!  This is his song! He is praising our Savior all the day long! What a beautiful and most comforting thought.

Heaven...another beautiful thought.

One of my three is there.  Two to go. It might seem like a weird way to look at it. But then again, I don't look at things the same anymore.


A sea of beds and babies January 01 2015, 2 Comments

Sweet boy was 3 days old and hadn't passed his meconium.  He needed to poop.  My mom happened to be working that day.  I had just been sent home late the night before, but I managed to make it to St Ann's in time for the morning rounds.  I walked through the door and proudly delivered the liquid gold (breastmilk) I had worked so hard for during the night which was probably only 1 oz at that point.  I clearly remember standing next to his bed ready to hear the plan as the attending Neonatologist, Dr. Snyder, (who I eventually came to really like and highly respect) stood over him with his clip board.  He proceeded to go down the list of worst case scenarios. Then he said something like, "…and he's got this smallish chin, floppy ears, pronounced nose….". I knew he was headed down the possible genetic syndrome path, which the realistic part of my brain understood.  But, the emotional mommy part of my brain was more powerful.  This was my baby he was talking about and it felt as if he was tearing Bryer apart feature by feature and issue by issue.  Knowing what I know now, that was not Dr. Synder's intent.  He was simply presenting the facts and wasn't about sugar coating.  At all.  Which I came to respect…eventually. But I was as brand new as Bryer when it came to being a NICU mommy, and lest we forget I was 3 days post partum which equates to being a fragile, hormonal mess.  At any rate, it was all I could do to hold it together.  I just nodded.  He finished and moved to the next baby which was only about 3 feet away.  Not knowing what I should do with myself, I gathered my pump parts and went to the sink to wash them, which was right next to some of the Neonatal Nurse Practitioner's desks.  The plan to busy myself and deflect my emotions failed horribly and I stood there sobbing while furiously scrubbing and rinsing.   Valerie, one of the NNP's, came over and put her arm around me and said, "Don't get caught up in the worst case scenarios, Carey."  She hugged me for a second.  It was enough to help gather myself and get on with it.  

Later that day, when I got home, I received a call from Dr. Snyder, which I found out later, he typically doesn't do.  I think he may have felt bad about how rounds went that morning.   Yeah, there's no way he didn't notice my breakdown at the sink.  His tone was much more gentle.    

*Writing this makes me smile thinking about him:)  We would go on to have MANY more morning rounds and MANY more in-depth conversations.  I came to respect his direct and non-sugary ways because I could see the pursuit for answers in the details.  He could rattle off Bryer's latest labs (which was a lot), meds and stats lickity-split with out a glance at his notes and then turn and compare them to days before from memory.  He mutually came to respect me for all the push back, questions and challenging I did.  I can still hear his voice as he stepped into our bed spot to begin rounds, "This is Brryyer". *

He called to say that he thought it was best that Bryer be transferred downtown to Nationwide Children's to be near surgeons because of his possible bowel obstruction.  I was upset.  I did not want him to have to go there.  St. Ann's, I was familiar with.  I knew the nurses there who my mom had worked with for 30 years.  My mom worked on that floor. It was a convenient 15 min from our house.  NCH seemed like forever away in comparison and just a completely foreign world.  

"Ok."  I reluctantly agreed.  

By the time transfer orders came, it was late.  My mom was still there and said it would be best if Justin and I met Bryer down at Nationwide.  She took care of things on his end at St. Ann's.  

Our first drive down there was together, which would become a rarity.  We didn't have a clue where to park.  The underground longterm parking garage, where we'd eventually get an "extended stay" pass, seemed like it was closed.  When in actuality, it just had a little garage door that would open and shut with motion detection.  So we parked randomly and went to the front desk. We didn't even know where the NICU was!  She informed us of the parking garage, so we re-parked underground and rode the elevators up, walked passed all the little wagons and followed that blue line.  We got our first P badge, but it was just a sticker at this point.  It seemed deserted. It was so quiet, must have been around 11pm.  By the time we got up to the NICU, we were informed we needed to stay in the waiting room as Bryer was getting situated and evaluated.  They'd let us know when they were ready for us.  We sat quietly and waited.  I was anxious and felt the need to pump.  

Finally, they called us back.  Walking onto that unit...Wow, what a vast change from St. Ann's.  It was HUGE and dim.  Most all the babies were tucked-in or being fed, except for the ones in emergent situations which you could see in plain sight as the bright lights blazed and many doctors were randomly dispersed and huddled at their bed-spots.  

It was a sea of beds and babies.  

We  neatly signed our names in for the first time, then I bee-lined for bed 33. The curtain was open.  I saw Cow before I saw Bryer's face.  Our first nicu nurse was named Janelle.  She seemed young, athletic and on top of things. Just my first impression.  In that moment, I was just so overcome with the need to touch him and talk to him letting him know Mommy was there.  He was completely settled and all that did was completely stir him up.  So, I talked MORE and sang MORE to him hunched over his little bed in an effort to calm him.

Soon, I felt Janelle behind me.  I sensed I needed to move out of the way.  

I stepped aside.  I then witnessed my first unspoken lesson in the NICU.  She stood over him silently.  She simply put her left hand on top of his head and her right hand on the bottom of both feet and held them…putting slight pressure as if she were bringing both of her hands closer together.  I swear if you had listened closely you would have heard the faint sound a lightsaber makes coming from each of her hands…"wwoommmm".  Magic.  It was amazing. Within a couple minutes he had completely settled again.  I later learned it's called containment.  Small babies like it - it makes them feel secure.  Noted.  

Each day I learned a little more of the rules, both unspoken and spoken, of this new world we were now in.

A little later, I asked Janelle to hold him and there we snuggled for the first of many times at Bed 33.  It was during that time, two surgeons came by who explained what would be cause for surgery, what they were looking for and what tests they would run. Because of his bowel situation, he'd be on gut rest and be receiving TPN - which is nutrition via IV.  

That meant no more attempts at breastfeeding.  That was difficult to swallow.  

The surgeons left us.  With Bryer still tucked into my bra and against my skin, I put my cheek on his little head and I cried.  I cried at the thought of him needing surgery.  Looking back, if only that surgery is all he would have needed.  I would tell my then-self to stop it.  Perspective, Carey!  But it's nothing I had developed yet.  No, my perspective was only in the beginning stages of being crafted.  

It was very difficult leaving him that night.  It just didn't seem right.  Driving away, I looked back at such a big, almost majestic, place.  I remember thinking, "Wow, my baby is in there somewhere and I am driving away." 


Primary Nurse Kristine December 24 2014, 3 Comments

Christmas Eve 2012

 

Bryer had recently been moved BACK to the NICU after a short 4 day homecoming followed by a one week admission to the PICU. Our group of neonatologists lobbied to get him and we were happy to be back in familiar territory.  He wasn't in good shape.  His breathing was labored, he was overloaded with fluid and he was in constant discomfort and agitation. With all the back and forth and ups and downs, December was an absolute blur.

   

We decided we wanted to make Christmas as normal for Remy and Sander as possible, which would mean Justin and I's presence at the same time on Christmas Eve and Christmas morning.  To make this happen, I had to give up some time with Bryer. I ached thinking about not having him in my arms while Remy and Sander tore open gifts.  But, we worked out a coverage plan so Bryer would not be alone. Between Justin, my dad and I, we'd be there. My mom had to work a 12 hr night shift of her own at St. Ann's, so she was out of the mix, but managed to sew him a little stocking she sent down with my dad Christmas Eve.  It was hanging when I arrived Christmas afternoon. <3

 

My poor Dad aka Papa drew a bad shift.  I think he was looking forward to rocking him all afternoon while reading Christmas books and singing carols. But, poor Bryer could just never catch a break.  He was in a fit of pain and I don't think he settled but for a few minutes the entire time my dad was there. Which put my dad in a tizzy of nervousness.  God Bless him, we typically didn't call on him for such long shifts and rarely if ever 2 days in a row.  My dad is a tall man and those cribs are small.  If you weren't holding Bryer then you were hunched over the crib.  At 5'9 it's back breaking and exhausting when doing it hours on end.  At 6'7, with a knee that needed replaced, he was a trooper. Love you dad!

*Here's a fun fact about my dad.  He used to lead music, yes you heard that right - LEAD MUSIC - at our old church growing up. He is an encyclopedia of old hymns and I think he sang every one of them to Bryer over the course of his life.  <3*

Queue Kristine, the inspiration behind this post:)  She was assigned to Bryer for the first time that Christmas Eve and happened to be working a 16 hour shift.  She drew the short stick too. Bryer had her running ragged.  I spent a few hours with her that Christmas Eve morning and then again the following evening, so I saw first hand. For Kristine, it was a crash course in all things Bryer.

Kristine displayed such diligence and attention to Bryer's comfort during those grueling hours.  She dug right in.  He wasn't easy, but she didn't concede.  Getting him comfortable was her top priority.  It was tri-noted by my dad, Justin and I.  My dad was amazed and spoke so highly of her in his report to me over the phone on his way home Christmas Eve.  I had also noticed how impeccable she was with Bryer's cleanliness and she brought such order to the room.  I loved that.  Simply put, she was a rock-star nurse and I wanted her on our team.  A team we hadn't officially put together.  Yet.

 

Justin called late Christmas Eve from the cafeteria to give an update.  We talked longer than usual as I was filling him in on home happenings and likewise he was relaying the latest with Bryer. But moreover, we talked about Kristine.  In the midst of trying to help Justin get Bryer settled, she offered up some advice and possible explanation for his pain.  Drawing from her own experience with a g-tube (feeding tube inserted directly into the stomach), she talked to Justin of what discomfort that can create which segued into a very natural conversation.  She shared with him a little about a car accident she was involved in many years ago which left her in a coma, riddled with injuries and on a long road to recovery.  An accident that took the life of her almost 5 year old son, Rusty.  

Can I pause for a minute?  That last sentence is so heavy.  It did not flow from my fingers easily. It's so much more than just words in a blog.  It's Kristine's son.  Rusty, you are not forgotten, dear sweet boy, not even by me who never was blessed to meet you. 

I remember Justin relaying this information to me that night…we both sat on the phone, completely gut-checked.  

"Can you ask her when you get back upstairs if she'd consider being a primary nurse for Bryer?" I asked Justin.  

At this point we hadn't made a list of primaries, and it was apparent we weren't going anywhere soon and we needed them for consistency and our peace of mind.  Thinking back now, I recognize this was rather a quick time frame to extend such a request or invitation if you will.  But I had seen enough to know, I needed her as much as Bryer did.

 

She kindly accepted.

It was around the 2nd week of January 2013.  Her and I had developed a comfort level.  A seed of friendship had been planted, and I felt I could ask. So I did. I asked her about Rusty.  Knowing what I know now about having lost a son, she was probably bursting at the chance to tell me about him:)  So over the course of the day as time allowed, she shared with me about Rusty, the accident, his death, her recovery and her grief. She talked about her journey and resolve to become a nurse after yet another life-altering car accident involving herself and her remaining child, Tabetha.   I know, it's almost too insane to be true, isn't it?  It's a remarkable story of resilience.  An incredible story of a single mother who clawed her way out from the pits of grief and pulled herself up by the boot straps from debilitating physical injuries not once, but twice, to be standing where she is today…which happened to be right in front of my son's crib as his primary NICU nurse at Nationwide Children's Hospital. Amazing.

Around this time, we were in the middle of waiting for test results for a plethora of Lysosomal disorders, which at the time was looking like a big possibility, all of which had a terminal prognosis. They were nearing the end of what they could test for and none of us knew Bryer's trajectory.   Every disease or syndrome they tested came back negative.  But, he wasn't growing or gaining weight properly, along with some other issues.  In fact, there was a week where he began losing weight despite the added caloric intake.  The Dr's were left scratching their heads.  I remember asking in rounds one morning, "Is he dying?" 

Anticipating results any day, I sat rocking him one afternoon.  It was dim, perhaps the curtains were drawn shut.  I had death on my mind mixed with the thought of having to say good-bye to him someday and maybe soon?  I had absolutely no idea.  Kristine was on.  She had another patient so she was in a out.  I watched her work. 

I saw that she was still living, breathing, working, smiling, helping, caring despite what she'd experienced and despite what she had lost.  If she could do it, so could I.  Words are failing me to explain what that meant to me in those moments.  

Again, God is so good about knowing what we need.  He knew that as a mother on a path to losing her son, I would need her as a fixture in this journey.  I later came to realize, maybe she needed Bryer too.  

Actually, it's one of the most beautiful parts of Bryer's Song.  At least to my ears anyway.  

I look forward to sharing that part of the story soon, but for now I must say, "TO BE CONTINUED" as there are still far too many gifts to be wrapped by these fingers tonight:)

Merry Christmas!!

 


An Ode to Bryer's PT December 19 2014, 3 Comments

Kim Scott - Bryer's PT.  

There are so many wonderful PT's in the NICU, but I want to tell you about Bryer's.

My first impression of Kim Scott... I remember telling my mom and Justin, "I really really like Bryer's Physical Therapist.  There's something about her.  She is just very sweet and so kind!"  Kim is about 5'6 with dark brown, between-her-shoulder-and-chin hair.  She's is a natural, no need for make-up kind of gal.  Behind her dark framed glasses sits her deep greenish eyes.  I can remember when she did an overall assessment on him at about 5 weeks.  He was very behind, even then.  I watched her work with him.  Gentle, but purposeful. I can still hear her soothing voice.  "Oh, oh don't worry, don't worry.  That's a good boy.  Oh good boy."  I can't pinpoint in words why I knew, but I could see that she deeply cared.  We would chat about our kids while she worked with him.  She had a 10 month old baby boy and 3 year old little girl. She was always very professional, and I could see that she loved what she did.  

We were discharged for the first time about 3 weeks later (only to come back in 4 days) and by the time we made it back to the NICU again (long story) 3 weeks had gone by.  One day I heard a knock on the wall next to the door, I look up and there was Kim.  She found us! I was so happy to see her face. She became a fixture in his care over the next 4 months in the NICU. 

All that to say, I really liked her:)  But one particular Friday evening, it was actually the Friday before Christmas…well just let me tell you about it.

It had been a long day for Bryer and I.   He was just always uncomfortable and in constant pain with some complex GI issues.  I had worked with him all day and had gotten absolutely no where.  

I was tired.  I was frustrated.  I was sad.  

All I wanted to do was to help him, and I couldn't.  It was just after 4pm and the snow was beginning to fall just as the forecast had predicted.  

But it was heating up in room 45.

You see, around that time everyday between 4-6pm, the anxiety began.  Well, I always had an underlying simmer of anxiety cooking, but at this hour it began creeping towards a boil.  It made me feel hot, like after you've taken too many sips of wine too quickly.  If you had looked, I may have had red splotches on my neck and across my collar bone.  If you were his nurse during that time, God bless you, I am certain you could see it and feel it when you entered the room.  Any emotions I had of that day, were multiplied 10 fold.  

My patience cinched.  

It was the time when my two worlds began furiously barrelling towards one another for impact.  My world with Bryer at the hospital and my world at home with Remy and Sander.  

 

I was stressed.  

 

Anxious to get home by a certain time in order to maximize time with Remy and Sander.  I missed them!  I must get home to allow time for dinner, for play, for bath and for bed.  I tried my best to keep it all as equal as I could.  But I was also anxious about leaving Bryer.  So, at that 4 o'clock hour, I would begin my calculations. When would be best to leave?  Could I get in one more feed with B?  Or could I multitask and pump while holding him so I wouldn't have to be anchored to the wall to pump when I got home?  

***I eventually would figure out a way to just pump in the car on the way home cruising down 71 N.  I even got so good at it that I managed to stealthfully go through Starbucks drive thru while pumping thanks to my giant purple scarf cohort.***

Can I get him settled comfortably and preferably asleep before I slip out?  I hated to leave him period, but just wouldn't or couldn't if he was awake or especially in pain. Sometimes there'd be an hour or so gap of time between when I left the hospital and the time Justin would arrive for his evening shift.  And I'll be honest, depending on the nurse, I just wouldn't leave if he was upset.  I don't fault the nurses, they are busy and sometimes just can't get to a screaming baby if their other baby has a care due, especially nearing or during a shift change.  If that scenario was happening, the frustration and sadness would well up and depending on the day there could be tears or just the verge of them.  I was a ball of raw and surging emotions, feeling terribly guilty and torn thinking about the 4 and 2 year old faces at home and my littlest precious one laying before me in a hospital crib.  

 

There was also this perfect window to leave, which if I missed, I'd sit in traffic for 75 min instead of the 35 it should take. Sitting in traffic is definitely not a good way to maximize time or decompress.  Throw in some falling snow, Friday night traffic and the fact that it was Christmas Eve's Eve, which I had barely thought about….  Well, I think I may have over painted the picture.  

So back to Kim.  All this is brewing inside my chest, churning in my stomach and dancing in my head, as I hunch over his crib trying to position and soothe.  

In walks Kim.  

I hadn't seen her that day.  Oh was she ever a welcomed and sweet face.  It was probably past 4:45pm now. I remember it so clearly.  She must have seen the frazzle in my face.  

She said, "Is this a good time to work with him?"  

I remember thinking to myself, "It's almost 5pm on the Friday before Christmas and I know she doesn't work 12 hour shifts, which means she should be getting off soon. She also has two small children at home that she hasn't seen all day, and I think she is still nursing Tommy.  Is she really going to take the time right now?"  

But I was desperate and relieved by her offer, "Yes!"  

So, I released him into her care and busied myself with the preparation it took to get out the door.   When I came back from the pumping room with my clean parts in tow, he was ASLEEP on his tummy over the hoppy.  Asleep is good.

Sigh.  The bubbles of anxiety simmered.  

She looked up from the computer and smiled, "You go, I am just going to sit here for awhile with him and chart.  I want to make sure he's settled.  I'm so happy I got him in that position asleep!"  

It's as if she had read my mind. I felt like I could leave him because Kim was staying.

 

I remember walking to the car that evening with such a deep appreciation for her. I audibly thanked God for giving her to us.  She went beyond in that moment. Might not seem so big to some, but to a NICU Mama, it meant everything.  I knew she was sacrificing her family time for Bryer and I.  What a gift.  I knew she was different, but this solidified her dearness to my heart.  

Kim, she is such a beautiful vessel for God's shining light of caring compassion to her little patients and their Mommy's and Daddy's.

  

Little did I know what a dear friend she would become. 

She went on to become his At Home PT …she went through all the red tape, papers etc to do that for us.  Which was a lot.  She came to our house 1-2 times a week.  

  

She came to the PICU when he was readmitted every time.  Her little Maddie made him cards.  

She came to say good-bye through tears the day before he left us. She went all the way back across the hospital (opposite end of the planet) to the NICU to get us aloe Kleenex's because the ones in the PICU just weren't soft enough. 

She ran The Columbus Marathon in his honor in 2013 the month following his death without proper training.  

She remembers him and misses The B - what she affectionately calls him.

Our friendship continues.  It's been a beautiful gift in all of this.  God placed her in our path!  He is so good.  We even were blessed to train for and run the 2014 Nationwide Children's Hospital Columbus Marathon together.  Who would have ever thought from A2 (unit we met) to 26.2.  Not me!

 

Not many people got to know Bryer or loved him, but she was one that did both.  And for that, I am so grateful.  She put it so sweetly in a note, "I'm not sure when I made the transition from calling you Mom to calling you Carey, but I am sure blessed to call you Friend."  

Ditto, Kim.  


Cow Comfort December 18 2014, 5 Comments

While I was pregnant for Bryer, we knew the baby would need a blanket.  Well, obviously.  But, I'm not just talking about any blanket. See, Remy has Giraffe and Sander has Tiger.  They are made by Angel Dear. A super soft and so darn cute extra layer of love. We wrapped Remy in it, tucked it under her arm and covered her in the carseat with Giraffe.  She developed a sweet and binding relationship with that blanket.  So that's what we did with Sander and Tiger. Same result, maybe even a touch deeper with those two! These blankets are like additions to the family and completely necessary to their physical and emotional well-being.  No exaggeration. My kids never took a paci.  But, these blankets…oh boy, these blankets. 

  

So it was a big deal what he would get. But, it wasn't until the day he was born that it was decided upon, and not necessarily by me.  I think I gave a few ideas; however, Aunt Kari came to visit and brought us a package.  It was Cow, the big, full blanket in all its soft and spotted glory.  Ahh, I immediately fell in love with him and I knew Bryer would too.  Not so coincidentally, I choose to believe divinely, my cousin Tarah came to visit later.  She also had a gift.  A smaller one.  I opened it and to my delight and surprise, it was another Cow, but a little one.  She didn't know we'd received Big Cow earlier.  Little did we know how much we would need both Big and Little Cow over the course of the next 10 months 26 and beyond days.  But God knew, didn't He? :)

And so Bryer and Cow's friendship began in the NICU at St. Ann's hospital.  

Cow was a constant.  Even more so than Justin or I.  After all, more nights than not, we had to leave him. But Cow never left.  Nope. Maybe one would travel home with us for a wash, but Big or Little, Bryer always had one or the other.  He was either wrapped up in spotted affection, Big Cow's head nuzzled right between his chin and neck. Or, Little Cow was tucked under his arm with his little head pressed into Bryer's cheek or lips as if to say, "MOO-wah."

   

Bryer's brain did not work as it should have from the beginning causing many of his issues, and it only got worse as time went on.  We knew he could see, but never knew how well.  He could hear normally in the beginning, but for one reason or another (that might be for another post) that declined.  For many months, he didn't even have the pleasure of eating by mouth and tasting food. 

     

Oh, but he could FEEL.

   

If only you could have seen his face during a warm and soapy hair wash…or saw how he'd melt into my hands during a massage…or how he calmed when his rear-end was firmly pat…or saw him completely soothed during our skin-to-skin time or when I'd run my fingers through his hair over and over and over.  You can imagine and now grasp how and why Cow became so significant to him.  A true blue 'er moo companion.  A constant, familiar and oh so velvety touch.  Of course I always tried to leave my scent on Cow in hopes Bryer would think I was still there with him…. even when I was in bed 35 minutes away:(

And because I knew all of the above to be true.  Cow comforted me too.

And now, Cow comforts Remy, who has all but traded Giraffe for him.  

It's in this spirit, we wanted to give each baby in the Nationwide Children's Hospital NICU a Little Cow. Some Cow Comfort. Some moo-re love. Some Cow kisses from us to you, "Moo-wah!"

But it gets better... I hope you'll keep reading!

For the 2nd year in a row, Bryer's Song has sold T-shirts leading up to and then after The Columbus Marathon.  The first year, we took all of the proceeds and put it towards the rest of the fundraising efforts that went directly to NCH NICU.  This year, we wanted to do something a little different.  We again raised money in conjunction with The Columbus Marathon which was something to the tune of $16,000!  THANK YOU TEAM BRYER'S SONG!!  

     

But, this year, the proceeds from the shirts sold would be earmarked for uplifting, encouraging and supporting medically fragile children and their families at Nationwide Children's Hospital.  We would decide who, what & when.  Exciting, but also not something we take lightly.  We wanted to use this gift wisely and for the most impact. We had been tossing around the Cow idea OR sponsoring a select few families. We were really torn as to which direction to go.  

So I asked Justin….I asked my Mom…. I asked close friends and family.  And above all, I asked God.  I was leaning towards the Cows, so I started checking into some of the details. I decided to reach out via email to Angel Dear in hopes I could possibly buy the cows through them at wholesale price.  So, I typed up an email with a little bit of our story…the what and why…and included a link to our blog and FB page.  

The next day, I received the kindest response from Kim at Angel Dear.  She passed along her sympathy regarding our loss of Bryer and said she had jumped on our FB page and saw the video of me running The Columbus Marathon with Little Cow tucked into my shirt.  She then went on to say, "We'd be honored to DONATE 112 Cow blankies in honor of your son, Bryer".  What?!?!

 God answered and said, "No reason to choose, Dear.  Do both!"

 

This sweet wink from Him said, "I'm still right here in this with you." 

So if you happen to be reading this within the walls of the NICU, navigating your way through those very deep and unchartered waters, receive this as a message to your heart as well,  "God is with you!"  

I pray you will be wrapped in the light of His Presence and that His Peace and the Hope only He can provide would take up residence in your heart on this journey and forevermore.  

I pray this over you, Mommy, skin-to-skin with your delicate little someone whose climb seems so steep.

I pray this over you, Daddy, trying to hold it all together, just wanting to fix it.

I pray this over you Grandmas and Grandpas, who carry the heaviness of a double ache.

And oh sweet precious baby, I am praying for you too.

This season is to celebrate and remember: Emmanuel, God with us!  This is the essence of Christmas!  I pray this truth fills your heart with comfort.  

 

 

 

 

 

 


Sand-man November 11 2014, 3 Comments

It's not lost on me that each one of your children…well ALL the children that God has uniquely created are special.  More than that, they are our very hearts aren't they?  As parents, we get the best and worst of them.  Those hilarious conversations or quips with a 3 year-old that when retold lose all the luster and timing of the moment.  The expressions that you wish you could wrap-up and re-gift, but can't.  The gestures that make your heart feel like it might just burst and leaves a grin on your face. I try to write down a lot of those moments in my journal.  I hope you do too… 

Sander was 3 weeks shy of turning 2 when Bryer came into the world.  I look back and think, "Oh he was a baby himself!"  I see other 2 year olds now and they seem so little.  I guess when you have a new baby, the old baby of the family suddenly SEEMS so big.  Before Bryer, I remember being concerned that Sander wasn't saying much…enough that I took him for a speech evaluation.  Then Bryer came along and we got busy...

It was January 2013, Bryer was 3 months old and still in the NICU.  It was a dark time, literally and figuratively.  Justin and I were like ships passing in the night.  I was splitting time quite evenly between the NICU and home.  We were worn and deflated. But, this one particular night in January, Justin and I were home at the same time with the kids.  We did dinner together and then headed upstairs for bath and bed.  Mom must have been down at NCH with B, so I was able to shelf the guilt of not being with Bryer, and I remember just being so happy.  Happy to be doing these normal family tasks together.  

Bath time had ended and the kids were wet and naked in their towels.  Justin and I were seated on our bedroom floor trying to wrangle Sander to dry him off.  And in this moment, Sander drops his towel, and the "Pee-pee Butt show" was born.  I know.  I know.  It sounds terrible, but I assure you we did not come up with the name nor the pretense for such a display!  No, our just over 2 year old son did.  Yes,  the one that was hardly talking just two months prior.  He proceeded to completely entertain us for 45 minutes.  Not just with the pee-pee butt show! But, he did. not. stop. He kept pulling new material out of thin air.  I have never laughed so hard in my life.  Justin and I were both crying.  And it just fueled him on.  It was one of those times, we looked at each other with question.  See, Justin and I are aren't really that funny, nor do we have big personalities.  Where was this coming from!?  On and on and on he went. My abs hurt the next day from laughing so hard.  For real. 

Our little family needed that evening...those solid 45 minutes of side splitting, peeing your pants laughter. The togetherness.  If you knew Sander, he had always shown hints here and there of this side, but I will never forget this explosive display.   What a gift it was in the midst of such uncertainty and separation.  God knew what we needed.  He knew it when He was knitting Sander together in my womb and gave him to us November 10, 2010. 

Anyway, just some thoughts I had when running yesterday (his 4th birthday).  Thank you, Lord for giving us Sander William.  

A little montage 

  

  

 


Happy Birthday, Baby. October 16 2014, 2 Comments

My kid's birthdays are a big deal…to me.  I know that's not earth shattering.  I don't think there is anyone a birthday is more special to than that person's Mom.  I typically begin reminiscing a few days before.  I become overly sentimental and emotional, lingering longer in their doorway after tucking them in noticing how big and yet how little they still look in their bed.  I bring out the pictures and now we enjoy looking at them together…I journal about the birthday girl or boy gushing my love for them and how much they have changed…what new characteristics I see in them or new things they are saying.  What they seem passionate about.  I make every attempt to capture and bottle-up these moments in time for safe keeping.  I read journal entries from years prior and just sit in rememberance.  In all the reliving and recalling, I somehow am able to recapture my heart from that day and just bask in the joy of each moment. It's like an extra layer of thankfulness comes to tuck me in on those birthday eves...coupled with a kiss goodnight of heart-break about how fast life is moving. Sigh. I love my kid's birthdays.  

Tomorrow, Bryer would be 2 and I am feeling a little stuck. My remembering rituals don't quite apply to my forever baby do they?  Here we are on year 2 of birthday's without him and I still haven't settled in on a good Bryer's birthday ritual.  I remember alright.  But, I fight the woulda, coulda, shoulda's….Why didn't I think to put some cake icing on just one of his paci dips?  Sigh.  I wish I would have done that.  

I had made it to 37 weeks.  The previous 16 I had been monitored 2-3 times per week by ultra-sound and stress tests.  As soon as baby was showing signs it would be better off out than in, they were going to induce me.  Essentially, I had to "pass" each visit.  Baby wasn't growing on target….they thought I had placental insufficiency and there was the possibility it would just give out and that's when baby would need to be born.  So, at my 37 week appointment, Dr. Lang said it was time and I would need to be induced that night.  I remember sitting in the waiting room after the appointment …tears of JOY and THANKSGIVING streaming down my face.  We had made it to 37 weeks and I was going to meet my baby!  The expectation was that baby would be small, but thrive.

"It's a boy!" and she held him up so I could see, but he was blue.  I did not get a pink, wiggly crying baby on my chest.  They whisked him away and began to work.  It was so quiet.  My mom shrank away to the corner in prayer.  Justin went by his side, but then also stepped back.  My Dr. was finishing up with me…I remember her looking at me, but she didn't have any information.  She called out, "Can someone please tell us what's happening?" I don't recall their response.  It seemed like forever, I'm not sure how long exactly.  But I finally heard a weak cry.  "Praise you, Jesus." I whispered. They brought him to me with oxygen on…took the mask off for just a moment so I could see his face and kiss his cheek.  Then he was off to the nicu, Justin following behind.

I hardly remember the first day.  I know after recovery, I went to the nicu to see him for the first time.  I could not hold him.  I just looked at him and touched his hands and feet.  I was so exhausted.  It completely undid me.  Little did I know that the tiny IV that completely devastated me, would be the first of many nightmares with those sticks.  I do remember going back to my room in a wheel chair, not sure who pushed me.  But Aaron, Kari and Mom were in the room.  Upon entering, I just broke down sobbing.  I am so glad they were there.  Those 2-ish days at St. Ann's were so…seemingly dim-lit, dark…empty.  I was in my room a lot by myself.  Pumping.  I had some visitors and great nurses, but I felt empty because Bryer was not with me at all times.  Justin was home with Remy and Sander.  It just wasn't happy and cheery like Remy and Sander's births.  I was pumping…not breastfeeding.  I wanted my baby, but couldn't hold him as I pleased.  Such is the beginning of any nicu Mama's journey, but it was all. so. foreign. 

I was discharged and left Bryer in the nicu for the very first night by himself on October 19.  What a dreadful feeling that was.  So unnatural.  I was broken and sad as I left. It was late.  I was planning to stay an extra night just because, well,  mom works there and they were going to let me keep my room. But they were getting full and there was another family in the nicu who's baby was much more critical and we thought they could use the room more than I.  So, it was all decided around 10pm that I would leave.  The unit, usually bustling, was quiet.  Mom was there.  She walked with me to the elevator.  I was exhausted to the core.  Eyes swollen and feeling heavy.  But I wasn't crying.  I leaned up against the back of the elevator.  Another woman joined us.  The doors close and she looks at me and sweetly says, "My you look tired, Mama." It was as if I was a house of cards buckling from just the weight of her breath.  I burst into tears…sobbing.  I couldn't respond. My mom put her arm around me and said to the lady, "She's leaving her baby in the nicu for his first night." The lady said, "Oh I am so sorry, dear."  I mustered a small smile and apologized for my outburst.  By that time, we had reached the 1st floor and within moments we pushed our way through the double doors. The cold and damp October night whipped us in the face.  And just like that, we were on our way home.  No baby in my arms, no balloons, no pictures, no smiles.  It was dark.  I was chilled.  I needed to pump. The first of many many nights that I would leave him.  

I walked into the house, the kids and Justin in bed.  My mom left.  Again everything was quiet.  I was exhausted, but it was time to pump.  I was also hungry, so I fixed myself a plate of something wonderful a sweet soul had dropped off and I sat at the kitchen table…I ate and pumped and pondered what was happening.  At this point, I only had one set of pump parts.  So, after I was done, I got up stored my milk and washed and dried the parts.  From start to finish my routine for pumping took about 50 minutes.  I got in bed and set my alarm to do it again in 2 hrs.  It's what I could do.

The next morning began the new normal, but i didn't know it as such - this seemingly lose-lose situation of always leaving someone.  Oh the storm that would rage within me over this scenario played out over and over as time went on.  I felt like a crazed mama bear who desperately needed to get to her wounded cub and bring him back with the others.  Wild, instinctual, stirred, compelled… I must get there now!  This day, October 20, 2012, is when they told me he would be transferred to Nationwide Children's Hospital in order to be close to surgeons due to a possible bowel obstruction.  And so it began.  

I remember talking with one of the NNP's when Bryer was maybe 2 days old.  I said, "How long do you think we will be here?" And she said, "Could be 1 week to as much as 4 weeks?"  "What?!  There is no way I could do this for that long!"  

But here is some truth that my heart would come to rely on.

"But those who hope in The Lord, will renew their strength.  They will rise up on wings like eagles.  They will run and not grow weary. They will walk and not grow faint." Isaiah 40:31

"I can do all things through Christ who strengthens me." Phil 4:13

"When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you." Isaiah 43:2

Tomorrow there will be a little birthday tune on our lips, balloons in hand, cupcake-stuffed cheeks and as much icing as Remy and Sander want.  And I will find that place…that feeling of what his tiny bottom felt like tucked into the center of my bra as I held him for the first time skin to skin.  I will reclaim that moment and every ounce (4 #10 oz to be exact) of joy it brought.  

Happy Birthday, baby.


Truth - a NICU memorial September 14 2014, 2 Comments

In church today our Pastor highlighted the song "This Little Light of Mine" in an illustration. We love that song! It prompted me to go ahead and share the following.  I spoke at Nationwide Children's Hospital NICU memorial service this August.  Some may have seen the video Justin posted, but in light of all the reflection I've done this weekend, I thought it was fitting to post the written form.  This was directed to fellow nicu parents.

My baby boy, Bryer, was born October 17, 2012 and left us for heaven on September 12, 2013 at 10 months 27 days old.  He had the most beautiful, thick, wavy hair, a dimple in each cheek, bright blue eyes with the longest eyelashes. And by the time it was all said and done, he had grown one perfect tooth.  He spent 205 of his 333 days at Nationwide Children's Hospital, the first 5.5 months of his life were in the nicu. He had a constellation of issues, but never a diagnoses or trajectory of where we were headed, until his last admission. This is when the seizures began, and they proved to be too much.  A brain MRI revealed swift and devastating deterioration.  He died peacefully in my arms 2 days later.  

  

As I look at all of you, I see wounded mommies and daddies just like me.  Scars earned with each swipe of the access card allowing visitation into the nicu. More each night we left behind our sweet one, the most unnatural of things.  Toiling for grams of weight gain, only to have lost them. A sock to the stomach each time we took a step in the wrong direction or got further and further away from normal. Perhaps you've felt completely beat down by morning rounds.  Or sat through devastating consult after devastating consult. The blows kept coming didn't they?  

And then finally, the crushing weight of death.  We have all felt it.  

We have all made the unthinkable walk out of Nationwide Children's Hospital with arms that were empty.  We have all lost our baby.  We found and still find ourselves in a place we would have never fathomed, experiencing things we didn't even know existed.  Sadly, this is an earthly truth we carry.  Sometimes, don't you just want to tell somebody?  Help them understand? Tell them about your baby and how fiercely they were and still are loved?  Grief can feel pretty lonely at times, don't you agree? But look around, we all understand, and I feel privileged…strengthened to be with you today ...remembering and honoring the valuable and precious lives of our babies.

My days spent at Nationwide were long...Anywhere from 8-12 hrs or days on end. On any given one, I battled exhaustion, discouragement, anxiety, debilitating stress, anger, loneliness, fear, envy, guilt and homesickness. Can you relate? It was a battle in the truest sense of the word.  Typically, I could overcome and press on.  I listened to the same songs - my anthems - on the drive in.  I armed myself with God's truths, promises and scripture, reciting them over and over during that long walk from the garage.  I prayed  A LOT.   But even still, sometimes I felt utterly defeated.  It was one of those days in early March before our April homecoming from the nicu.  We had been moved to Bed 6, the corner "suite" of the old J4 unit.  It had a coveted window and only one neighbor.  It was more spacious and quiet.  We welcomed the natural sunlight.  I was sitting in one of those oversized rocking chairs, my back facing the rest of the nicu.  

Bryer, awake, was snuggled into the crux of my arm.  I was rocking and patting his bottom while singing, "This little light of mine, I'm gonna let it shine...let it shine, let it shine, let it shine..". Unexpectedly, I heard a voice join in from behind.  I kept singing, just a touch louder, and so did she.  Soon, she came around the chair and into view.  It was sweet Billie from environmental services.  She was making her rounds mopping each bed spot.  We kept singing; I rocked and she mopped.  By the time she made it around to the other side of the crib, we had finished the verse.  I stopped, but she started up again, "Jesus gave it to me, I'm gonna let it shine, Jesus gave it to me, I'm gonna let it shine". This time, I joined her, and we sang it through, a little louder still.  I couldn't see who or what was happening behind me, and I still wonder if our mini-revival was heard by anyone else.  When the verse ended, she was right beside me, our eyes meeting for the first time.  She bent towards me and placed her hand on my shoulder.  Looking me in the eyes, she said, "You keep walking by faith… not by sight". And with that, she smiled softly, and was on to the next bed.  

I sat there, completely still.  I knew this had been a devine appointment...this moment.  It was so simple, yet layered with meaning.  So powerful, yet completely sweet and tender... our voices testifying (rather loudly even) to the light He had gifted Bryer upon creation..as well as to ALL the little lights nearby.  It's a treasure I keep tucked close and think about often.

Furthermore, He used Billie to speak truth into my heart.

Jesus was reminding me, "You are not forgotten, Carey. That Hope that keeps you going, it's more than just optimism...I AM your Hope. In the face of this suffering and uncertainty, keep your sights set on me and My promise of everlasting life, not on your circumstance in this world."   

The promise of everlasting life.  Yes.  This is THE ETERNAL truth that will trump all earthly truths. Even the earthly truth that we all share and has brought us together today. Yes, I carry this earthly truth of Bryer's death, But the eternal truth is that Christ has conquered death …Bryer's…Yours...Mine…anyone who believes and accepts Him as Lord... and we will live together in eternal glory.  

This life is not it.  

I assure you there's more.  

This road that we are on, if traveled with Christ, is ultimately a highway to HEAVEN.  When I consider this radiant destination, even in the depth of my grief, I have hope... and Hope will lead me on.  

So, my prayer for us all is this:

Romans 15:13 May the God of hope fill us with all joy and peace in believing, so that by the power of the Holy Spirit we may abound in hope.

 


Surreal September 11 2014, 7 Comments

Kids are asleep.  Justin has been gone all day getting a tattoo in memory of Bryer.  I am anxious for him to get home for the big reveal.  The house is quiet.  I have a half a glass of red wine to my right and a bag of dark chocolate morsels to my left. Just prior to sitting down here at the computer, I sat folding a load of laundry.  I actually like folding laundry because it's kind of a mind-numbing activity.  

It's been a busy, but great day with the kids.  We went to an indoor play park this morning, followed by lunch and the zoo for the afternoon. Just busy.  I love them with every fiber of my being, but they are not the two to go deep into grief or memories or whatever.  Not when it's on my terms anyway.  So, I found my mind a bit occupied.  Thoughts crept in...I would see the time and remember what we were doing at this time last year etc or I saw various FB posts of friends wearing their t-shirts and it would tug. But it was impossible to stay there long. 

Finally, in the quiet of the evening and the dullness of folding laundry, I took my deep breath.  My mind went racing, jumping from here to there with small, random and big moments.  I couldn't find one to land on.  I didn't know if I wanted to.  Wait, did all of that really happen?

Then I look up on the mantel at one of my favorite pictures of Bryer.  Yes, baby boy. You did happen.  And I audibly thanked God for giving him to us.  Then they came.  The tears.

  

I kept folding.  And now I am here at the computer.  I came to look at FB.  I love all the sweet and heartfelt comments.  They lift me up.  But, I couldn't shake the feeling that my last post of just pictures of the kids saying good-bye was a bit empty. Probably shouldn't have shared them without a proper blog post explaining the significance of those God ordained moments.  I don't want to post anything to ensue sympathy or attention. Truly. Bryer's life had purpose. For me to do anything less than be a vehicle to fulfill it, would feel like I'm failing him and my Heavenly Father.  I feel called to tell (some of or most or..??) of our story, because it's part of God's greater story. And if for nobody else, it's for Remy and Sander.

But just not tonight, and maybe not even tomorrow.

Thanks for all the love.  

 

 


Acts of Kindness September 08 2014, 4 Comments

Warning - there will be talk of breast pumps and milk storage if that weirds anyone out.

Any pumping NICU Mom (or regular moms) knows the drudgery of washing pump parts - NICU Dads probably know too.  It's not that it is such a hard job, it's just so extremely time consuming. It's also not one you want to rush because you are talking about sanitizing the parts that your baby's milk touches.  I would never have wanted to jeopardize Bryer's health anymore than it already was.  Yes, we had those microwave bags, but they were limited.  

I had finite time to snuggle Bryer already.  I'm referring mostly to that part where I'd leave him every night for someone else to take care of. (insert dagger here) I can still have bouts of anxiety over that to this day.  It also wasn't possible for me to be at the hospital for every.single.waking moment either because I had 2 other littles who needed their mommy. But, I tried my best.  Beyond that, there were sometimes restrictions on how much stimulation Bryer could have.  Getting him in-and-out was frowned upon, especially when one of their main concerns was weight gain and we were striving for calorie conservation. All that to say, when I was there, I certainly didn't want to spend over 1/3 of my precious time washing pump parts.  It was maddening, really. And because of the kids at home, rarely was I at the hospital with someone else like Justin or my mom. If by glorious chance they would overlap with me, they were sure to roll-up their sleeves and wash those parts. It allowed another 30-40 min of cuddling.  Bliss.  

It was late December 2012.  We were in room #45 "on the wall" of the J4 NICU, I had managed to pump while snuggling Bryer.  I was getting stealthy and ultra creative.  I had to.  He was comfortably asleep on my chest.  Success.  Peace.  I had since disconnected the pump and my milk sat to my right.  We had been sitting there for quite some time, and we both drifted to sleep.  It was nearing the time for the next pumping session (you know every 2-3 hours), yet my milk hadn't even been stored and labeled, which was its own ordeal.  Nor had my pump parts been WASHED.  Grr.  We happened to have a sink in this room.  I was so grateful for that time-saving fountain.  It shaved a good 10 minutes of walking to and from the pump room where I may have to wait in line for a sink.  

I was stirred awake by the sound of running water.   I cranked my neck over my shoulder and there was our nurse, Priscilla, who had already stored and labeled my milk.  And not only was she washing the parts, but she was DRYING the parts.  Do you know how tedious that is??  It's all tedious, but especially the drying part. There are so many nooks and crannies! BLESS. HER. HEART.

It was the first time a nurse had done this for me (it didn't end up being the last - his nurses rocked!).  I know it is not their job, and I didn't expect it.  They are incredibly busy saving tiny lives for Heaven's sake.  Ah, I relaxed back into the big chair and snuggled into him.  It was as much a gift for Bryer as it was me.  Without a doubt his most favorite spot was where he could be lulled by the beat of my heart and the smell of my skin.  I didn't need to disturb his rest or comfort, which was so hard to come by during those days.  I don't even think she knew I saw her.  When she was finished, she left without a word. 

 

As I drank in Bryer's warmth on my chest, his soft little hands and the rise and fall of his breath,  I pondered this all in my heart for a moment.  Wow. What a genuine act of service and pure kindness she had bestowed. She had no idea how that ministered to me and how I was uplifted. She allowed our moment to go uninterrupted.  Priceless, especially now as I look back. She came right up alongside and helped carry the burden.  I know.  We are talking about PUMP PARTS.  But you see what I am getting at?  Being a light and serving others can be and IS so impactful.

Hebrews 10:24  And let us consider how to stir up one another to love and do good works"

She certainly stirred my heart that day. I hope I can stir yours a little too.

I thanked her later in the shift, and she just smiled and softly said, "Of course!"  She became one of our primary nurses shortly after, not because I thought she would continue to wash my pump parts!  I swear!  But because she showed the sweetness of her heart that day.  Those were the kind of hands I wanted to leave Bryer in when I left NCH for home. 

I'd go on to share many other sweet moments with Priscilla.  I can still remember her kind and distinctive voice.  

Wouldn't you know, she brought me She Crab Soup Mix back from her trip to Charleston, SC!  She must have picked-up in conversation that it was my favorite.  She left it on the counter one day for me to find. I think it was in mid-January. A very dark, literally and figuratively, time for me in the NICU.  I think I cried when I saw it.  

She was with us the day of one of his surgeries in March of 2013.  It ended up being a frustrating day as we got bumped to another time, which meant longer without food for Bryer, which meant an unhappy Bryer.  He lost his IV's which was never as easy to replace as you'd think.. She came down with us, and when we had to leave him to wait, she escorted him back.  It was a comfort.  That's her in the background: <3

She was also one of the last two faces I saw when I was walking out of the the PICU room where Bryer had taken his last earthly breath.  After spending several hours bathing, dressing, holding, smelling, singing, rocking, staring, kissing and stroking him…It was time for Justin and I to say good-bye.  We left him in my mom's arms.  I pulled back the rainbow curtain to leave.  It loudly whooshed to the right.  It was as if that yank simultaneously yanked anything left in me right out. Whoosh….breathless.   And there stood Priscilla and Kristine. I think my embrace said what words couldn't.  Their presence and seeing their faces meant more than I can express. 

I love those women.  Thank you, Priscilla.  Kristine, she's another sweet part of Bryer's Song <3  In fact, I have sweet stories and moments with all of his nurses. I have nothing but love for you Priscilla, Kristine, Sara, Katie, Lindsey, Bryn, Jessica and all of the others who cared for B.  And don't even get me started on Kim his PT. God is good.

My family and I have been showered by kindness and love during Bryer's life and through our grief.  I think I could write a short book on that too…or a very long list!  It's humbling to be in a place to allow people to give and help.  To open-up and receive as God works through the hands of others.  We were taught how we should respond, do, give, love and say when we are on the other side of crisis. 

So, let's be the hands and feet of Jesus.! Get to washing some feet or…er pump parts!! Don't ever underestimate the immediate impact you could have, and God only know's the eternal. 


God's Rainbow Whisper September 04 2014, 3 Comments

I think I could maybe write a short book about Remy and Sander in regards to Bryer's life and death.  It's been an incredibly eye-opening, heart-reeling and heart-healing time of motherhood. I didn't give them nearly the credit they deserved for what they take into their hearts and then spit back out of their mouths.  Or the things they would ponder in their spirit until it came bursting forth unexpectedly. For a grieving mom, it can be hard enough to hold it together at any given moment, let alone when these little eternally-inspired, spirit-filled missles come shooting from the back of the mini-van or snipe me in the grocery store or drop in my lap at a restaurant or disarm during goodnight prayers.  Boom.  A beautiful mess of questions, perceptions and declarations from the past, present and/or eternal future.  It all boils down to that phrase we've all heard..."child-like faith", and wow, it's an amazing thing to behold.

Now you might expect for me to launch in to a myriad of these experiences. They certainly are such sweet treasures I've enjoyed sharing here and there with friends and family. Perhaps I will at some point. But for now, I wrote the above to lend a little insight into the heart-happenings of my 5 and 3 year old these past 18 months.  They were certainly stirred up and still are.  They've been ripe for teaching and truth speaking.

Moving on. Remy loves rainbows.  She's been intrigued and a bit obsessed ever since before she turned 4. Her 4th birthday party was unicorns and rainbows.  Almost all pictures she draws includes a rainbow.  She has drawn countless pictures of her and Bryer under rainbows.  If given a choice of something rainbow colored, she picks it.  If coloring anything that can be a pattern...it's rainbow.  A few months ago while shopping she brought to me a "B" charm bracelet..the "B" was striped in rainbow. Of course we bought it.  She corrects me if I get the colors of the rainbow out of order while coloring.  If you ask her what her favorite color is she will say ROY G BIV.  You get the picture.  

On the last day Remy and Sander saw and held Bryer, there was a rainbow stretching from one side of 71 to the other as they drove home from Nationwide Children's Hospital. Did any of you see it too?

All this brings me to last Thursday.  August 28.  I was serving Remy and Sander lunch at our kitchen island and seized the opportunity to go over their sticker chart.  One thing on the list is reading their bible. I hadn't been there the night before at bedtime, so I asked if they had read it with Daddy. Remy assures me they had and proceeds to tell me about what story.  A king worshipping idols.  A short conversation ensued about what idols are etc.  All this talk reminded me that I had been wanting to ask Remy a question. It was a question sparked from a recent meeting at church I had attended about spiritual parenting. We watched a short video of kids answering the question, "How does God speak to you?" The answers were insightful and quite entertaining.    

With that on my mind, I turn around and ask, "Remy, does God speak to you?"

She looks at me and doesn't answer.

I rephrase, "How do you think God speaks to you?"

My back is to the window and she is facing me.  As soon as I got the question out of my mouth, she immediately responds while pointing, "I don't know, but there is a rainbow that went across Bryer's face!"

 

"What?"

She shakes her pointer again at the picture.  I turn around and look at the picture of Bryer that we have sitting on the window ceil. There is a small rainbow going directly across his face. My breath was taken for a second. I look again as I release a smile-sigh.

"Remy! THAT is God speaking to us...right now!"  We all continue to stare at Bryer's face with a rainbow on it.  It's quiet for a second.  

"What's he saying?!?" she innocently asks.

"Well um, I think He's saying 'I love you.  I am here.  My promises are true.  Bryer is with me.  I haven't forgotten you'.  Something along those lines, honey."

I was so touched, of course, I became very emotional.  She got up off her stool and came to me,  "I miss Bryer."

"Me too, baby."

With her arms wrapped around my waist looking up with her new jack o' lantern smile and post tonsilectomy kermit voice, she says, "Well, it's a good thing you took lots of pictures."

I picked her gangly, long-legged body up and took her to the window ceil.  I said, "Remy, I want you to always remember this.  It's just for you.  God knows how much you love rainbows and how much you love Bryer. This is so special".

She laid her head on my shoulder and we continued to look at Bryer's face.

Meanwhile, Sander is sitting on the other stool taking this all in.  

This all gets even better.  

Later that evening, I got dinner on the table.  I was over at the sink getting something when I hear Sander excitedly burst, "Mommy!  God didn't forget about me!"

It was almost too much in one day!  I was comforted.  I was reassured of His presence and His promises.  I was taken back by His impeccable timing.  He gave me such a tender moment with Remy ...a teachable and unforgettable moment. And THEN, lest he forget Sander, who was probably sitting there feeling left out....He drops a rainbow right on his dinner plate. 

Oh He is sweet and He is with us.  My heart is full. I hope yours is a little fuller too:)  

 

 

 


Hope Will Lead Me On September 01 2014, 1 Comment

It's interesting...Bryer's Song was something Justin came up with.  I was very hesitant to have a Facebook page, but he thought it was a good way to communicate.  He put it up one day in March of 2013.  Bryer was 5 months old.  I remember looking at Facebook sitting in the NICU and seeing Bryer's Song pop up in my newsfeed.  "Hmm, how did he land on that name?" I wondered.  He later said it was a metaphor for Bryer's life...a sweet song to be heard.  A story to be told. Yes...ok...I can dig that. I liked it.  It's kind of ironic though...because it was through song, lyric, melody and music in general that God tenderly spoke to me in this desert season of life.  Sometimes He even spoke boldly.  It's not unique to me, I know.  Music tends to be that way right?  Impactful.  Moving.  I had a set of songs that ministered to me on a daily basis...ones I played over and over on the ride down to Nationwide...ones I quietly sang to him over and over...certain ones I would listen to driving home. I had songs pop into my head out of no where that I could NOT get rid of...always a poignant message for my heart.  I even sang an unexpected "duet" of "This Little Light of Mine" with a housekeeper one day which blessed my socks off - but that's another story for another time.  So, just like many others have a soundtrack of their life, I had a soundtrack of Bryer.  The first I shared some of them was at his memorial service.  It felt so good to sing them as a congregation and take them in as dear brothers and sisters in Christ sang them solo.  So, I decided to compile all these songs... and I burned several CD's. I gave to my family and close friends. I wrote "Bryer's Songs" on all of them because, well, that's what they were.  My family loved them. I even gave out a few to other hurting people with the hope they'd be encouraged.

This past spring, I was riding in the car with my brother Aaron and his wife, Kari. We were actually headed to Nationwide to meet up with another hurting family.  They had their Bryer's Songs CD playing.  As we drove and listened to each song, I told the story of what each meant to me...why it was significant...what part of Bryer's life it was linked too...various emotions that the songs evoked.  I shared about "Hope Will Lead Us On". This is a song I made sure to listen to every drive down, multiple times.  It was a track on a "mixed cd" a dear friend had made to encourage me (see you never know the impact you may have when you reach out - thanks Catherine!).  It became my anthem.  I cannot tell you how this readied my heart, soul and mind in preparation for what the day might bring. I could feel the strength welling up within.  I was uplifted.  I had courage. I sang it loudly over and over and over.  

It was a couple months later, early this summer, when Kari and I were sitting at our church's VBS contemplating doing t-shirts again...My desire was to do something that went beyond Bryer and extended into each person's heart who chose to wear the shirt.  Go beyond, but still be connected to Bryer's God-given story.  You follow?  So, we are discussing this and she says, "Well, Carey, I was driving down RT 3 listening to my Bryer's Song CD, "Hope Will Lead Us On" was playing...I know exactly where I was...the sun was shining through the canopy of trees etc... and it flooded me,  "Hope Will Lead Me On". It's what we need to put on the t-shirts."  Bingo.  I couldn't have agreed more.  

We will never forget Bryer.  Of all people, how could I?  He is flesh of my flesh, bone of my bone. A piece of my heart was taken to Heaven last September.  But, we realize it's not ONLY about Bryer.  It's about all of you. All of us. It's about this race we are all running to eternity. And boy, it can be tough. Tragedy, illness, chronic pain, infertility, loneliness, divorce, anxiety, fear, grief...death.  So, yes, buy the shirt for yourself, a hurting friend or a child, and remember our boy.  Be inspired by the story God gave him for us to tell; His song for us to sing.  But furthermore, when you wear this shirt, let strength well up within you..."For those who Hope in the Lord will RENEW their strength.  They will soar on wings like eagles.  They will run and not grow weary.  They will walk and not grow faint." -Isaiah 40:31.  I know this to be true!  Let Hope lead you this day, because the day will come... as we press on.. when the battle's won.  


Joy into my darkness - Headed Home Part 2 August 30 2014, 2 Comments

I apologize ahead of time for the errors, the going back and forth between tenses and all that stuff. It is what it is ..as I looked back on the happenings 1 year ago today. August 30, 2013

August 30, 2013 - We had just got home at 10:30pm the night before from a 10 day picu/neuro admission.  I was bone aching tired, but we were home under one roof.  All a mama wants.  Remy went to play with her friend, Christine.  I decided to take Sander on a little date to Target, then a hair cut and Five Guys for lunch, his favorite.  It had been a few days since I spent proper time with him. I was missing him and he was missing his mama.  Oh, the joy that boy brings!  Bryer really hadn't slept much the night before, but seemed content to nap on the ottoman for a bit.  We had a new seizure med, Sabril, we were trying out.  Also new to his already lengthy routine was twice daily Lovenox injections for a blood clot in his leg - a result of the misplacement of a central line into his artery and not into his vein.  Needless to say, little man kept us busy, but it was so good to be home.  Did I say that already?!?

  

Mom came over that evening to help as it was always chaotic, but especially soon after a discharge as we fumbled to settle back into routine.  She loved giving Bryer baths in the hospital and at home.  It was their special time together.  She is a RN by trade and has been for 30 + years.  She knows what she's doing and is good at it.  Not to mention, she loved and still loves Bryer deeply and I know he felt it...most especially during those hair washes. I didn't worry when I left him in her care.  So, as she gave him his last bath in our sink, I took the kids out to play. It was a beautiful evening. 

 

Really, you took Sander on a date all day and then took them out to play that night?  That seems weird when you have such a sick and fragile baby that just came home from the hospital.  But the reality is, yes.  The pendulum swing between the world of Bryer and the world of Remy/Sander often blew my mind, but even more so as I look back on it. Like being home with R & S and mc'ing a full-on stuffed animal fashion show with run way, spectators, music and twirls... as Justin sat with B on a ventilator.  Then me with Bryer during a significant brain MRI also while on a ventilator, all the while getting video from Justin of Remy riding her bike without training wheels for the first time. Me leaving B at the hospital to get Remy so we can go pick out her first pair of soccer cleats. She beamed.  I sent Justin the picture.  Me sitting in a darkened picu room eating a bag of peanut m&m's actually feeling sick-for-home, so I FaceTime the kids to say goodnight…they are full of smiles, I love yous, freshly bathed and all PJ'ed up ready for bed.  I say goodbye and look at my just-in-a-diaper, all tubed up, unbathed, deteriorating baby boy.   Not sure if I am painting the picture accurately, but swinging back and forth between the two worlds was somewhat surreal.  I digress..

 

  

 

Back to August 30.  We had all settled in for the night.  Bryer had fallen asleep on his blanket upon the ottoman and Mom said she would sleep on the couch next to him.  He slept from 8pm-12am.  Upon waking, he began seizing every 4-5 seconds. Nothing was helping or calming him.  I came down and together we sat for 3 hours.  We thought it was the clusters he had experienced before.  But no, it was different.  There was no letting up. We tried it all. Holding him didn't help…almost made it worse.  He was sweating.  Our body heat made him hotter. We decided to give him another dose of Sabril. Justin came down around 4am.  We called the on-call neuro dr.  He gave us a script for distat which Justin left immediately to get.  He returned an hour later and Mom gave it to B as a suppository.  We waited.  

Those dark hours from 12am-6:30am... passing him back and forth between Mom and I. Rocking, patting, singing, praying, laying on ottoman, trying left side, then his right side. More patting, rubbing, stroking his hair, praying, singing….SEIZING without cease.  He screams, whimpers and moans inbetween.  The beads of sweat upon his brow. Eyes WIDE like he's frightened. Sweat soaked onesie after sweat soaked onsie. We were doing anything we could think of to help.  But nothing did. Huddled around the ottoman, these were some of the worst moments of my life.  

The other two kids slept peacefully upstairs as we waged hell-like war downstairs.  I am not exaggerating.  If I were to imagine what hell is like, it would consist of watching your child struggling and suffering and being completely helpless to do anything at all. Counting on the extra dose of sabril.  Nothing.  Counting on administering distat….still nothing. Soon, I hear little feet on the stairs.  I look up and see Remy peering through the banister rails.  My tender-hearted girl.  Before I could order her back to bed, she scurries down and glues herself to my side.  Sander soon follows with Tiger, his go to blanket, in tow.  It is about 5:30am.  Sigh.  I remember so clearly the feeling of despair, and I could see it on the faces surrounding Bryer as he lay seizing on the ottoman.  My mom was taking a turn at trying to console and comfort, hunched over his little body, singing in his ear.  

"Ok, this disat isn't working," I say. I stand up.

It came decision time, something we had wearily encountered many times before with Bryer.  We HATED making the decision to go.  To go and to admit.  My heart completely deflated…a familiar heaviness sat upon my chest.  Anxiety churned through my veins.  I felt desperate, stomped on, so utterly grieved.  My eyes were dry and burning.  And although we had just brought him home 36 hrs earlier, we knew we had to go back.  

"Is there anyway we can bypass the ER?? There's got to be a better way,"  I plead.  

So, we call the neurologist and he arranges for a direct admit to the 10th floor - neuro. That makes me feel a little better.  

"I've got to get these kids back in bed.  Justin, I can't go.  I just can't watch anymore tonight. I will get in bed with these two and come relieve you later today.  I just… can't, " I say through tears.  

Justin, with quiet resolve, rises to the occasion.  I get the carseat and gather his belongings.  I make sure we are up to speed on meds and his feeds are on track etc.  I get Cow and some paci's.  You know when you are packing up your baby for the sitter? Kind of like that, but way different.  And with that, I send Bryer and Justin to Children's for what would be his last admission.  Mom follows behind and heads home for some well earned rest. 

The door closes.  The pendulum swings. 

I turn around and look at my 4 and 2 year old sitting on the couch.  Dawn is just peeking through the windows.  It is quiet.  I go to them, picking up Sander and taking Remy's hand, we walk upstairs and into my room.  I lay in-between to prevent a squabble and one nuzzles in deep on each side of me.  I feel overwhelming peace, love and joy as I lay there looking up at the ceiling.  Praise you, Lord. He has a way of piercing through the darkness when I need it the most.  This was one of those moments. It's true that mother's have limitless capacity for love, for I poured as much love out on them in that cuddly early morning snuggle as I had all night to Bryer.  I love my kids intensely.  All three of them. But, I will be brutally honest, I was relieved to be settled between them rather than physically and mentally suiting up to forge into the hell of suffering with Bryer.  If I could just escape for a couple of hours...I was so completely exhausted. I think I only got an "Oh Lord, help…" before I fell asleep.  

I think back on that moment with mixed emotions of guilt and second-guessing of my choice not to go that morning.  But, I am reminded of the scripture Matthew 11:28 "Come to me all who are weary and heavy-laden.  I will give you rest" and also Ephesians 3:20 "Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us.."

It was obvious I was weary and needed rest.  But, beyond rest, He even managed to deliver a shot of pure joy into my darkness.  Maybe it's just me since I'm the one who experienced it, but the fact that I can even write of the joy, peace and love I received on a night like that, is pretty darn amazing.  It is a testament to God's goodness and continued presence on our journey with Bryer. He was with me.

After a few hours of rest, I woke up and made arrangements for the kids.  Then I headed down to relieve Justin.  What I walked into, well, that's perhaps another blog post.  


Unanswered Prayers & The Loss Of Our Baby Boy December 21 2013, 4 Comments

I lost my mom when I was 20, she was 47.

We lost Bryer, our youngest son, 3 months ago. He was 10 months 26 days.

I am 31 years old.

The two mainstays of my prayers over my life were crushed within 11 years of each other. Ever since I can remember, I prayed for nothing to happen to my parents: death, sickness, divorce, etc.  Once Carey and I had children, my prayers always asked for protection over my kids...

Growing up, my family and I were your typical "casual Christians", attending church on the major holidays, yet I still prayed to God, not fully understanding who He was. My mom would eventually start going to church regularly once she was diagnosed and I would attend occasionally with her. But during my mom's battle with breast cancer, I lashed out at God, turned my back on Him. I became one of those 18-34 year olds who have vanished from churches. I questioned His existence, the story of Jesus...it just didn't seem at all possible. My heart was closed from anything spiritual. I'll stop with my back story but for those of you who feel that way now, I want you to know that I totally get it, I understand your repulsion from believing in God and The Bible, I was there...

My wife brought me back to my faith. The birth of Remy, our first child, added another level to it as well as the birth of our first son, Sander. Bryer solidified it. I can't begin to describe the impact of his short time here on Earth had on our family and those that were able to care for him. I'll leave those stories to Carey as she is much better with words than I. 

My experiences through some monumental times have shown that God is ever present in this life and it's just a matter of choice to see it. There's much to life that isn't how we would have planned it: bad relationships, losing those we love the most, unanswered prayers...

My prayers were not answered and I'm sure a lot of yours aren't either. God most likely has a far greater purpose for you and I and it can take a lifetime to understand that. Sometimes though, you are able to see the fruition of prayer come to light. The following is a journal entry Carey penned on May 11, 2013:

"Bryer is in the PICU. He has bi-papp on and is sedated. J and I were in the ER all night last night, 9 hours.  Didn't sleep a wink.  So we got home this morning at 8:30 and slept most of the day.  Last night was grueling.  It's gut wrenching.  It's trauma to the eyes to watch your baby struggling to breathe and so very sick and in pain.  Writhing.  IV's and breathing machines descend upon his body.  I long for him to be healthy and whole.  Safe and sound at home in my arms away from all the trauma that comes his way during an admission.  Bright blazing lights, bustles of nurses, many hands on him, holding him down, sticking his skin, poking for IV's and blood, more holding down for X-rays and scans... bright blazing lights. Cold rooms. Oh Bryer, how I wish you were in my arms freshly bathed and in your jammies. I would be rubbing that curly head of hair and singing you a song.  I'd lay you in your bed with cow and turn on your soothing lullabies with aromatherapy.  HOME.  Safely and healthfully is where I want you to be.  I want to see a smile on your face and a look of familiarity and pleasure….joy and happiness.  Lord, will you bring him back to us?  Can you take from him this grip of sickness and ailment, suffering and struggling.  Lord, please have mercy on my sweet boy.  Restore him.  Restore his mind and body.  May it work in harmony. I need you, Lord. I am weak and worn. I am feeling defeated and saddened. I pray I could feel your presence and strength.  

More importantly Lord…Holy Spirit go to him tonight.  Blanket him with your love and comfort.  Surround him with your peace.  Give him rest and healing.  I pray your will would be mine. That they would be one. May your will be done on earth as it is in heaven. Give me this day, my daily bread. Oh how I need it!"

We shared this entry at Bryer's memorial service because her/our prayer was answered. This part, specifically:

"Oh Bryer, how I wish you were in my arms freshly bathed and in your jammies. I would be rubbing that curly head of hair and singing you a song.  I'd lay you in your bed with cow and turn on your soothing lullabies with aromatherapy.  HOME.  Safely and healthfully is where I want you to be." 

God brought him home to us after that stay in the hospital for 13 weeks, the best of his life. God also answered that prayer again on September 12, 2013. After Bryer took his last breath in Carey's arms, she and her mom were able to bathe him and dress him in his blue footed jammies. Carey then held him, rubbed his thick curly hair and sang him songs. He was HOME.