Why

As a parent of young children, I am asked this question numerous times each day. Sometimes, it is an easy answer, but at others, it requires a more heartfelt, prayerful response to their inquisitive "whys".

About a week ago, Elias fell asleep in my arms, and I was overwhelmed with the seriousness, the sadness, and the heaviness of this. I had so many questions for my heavenly Father, and He answered that night with overwhelming peace.

You know, I never imagined being here, in an ICU following our son's brain surgery, and now that we are, I don't want to question why. I want to look ahead to Elias being healed and God getting all the praise.

The truth is, I really cannot grasp the why right now. Elias was screaming through his pain this evening, and he looked right over to me and asked, "Why did I have to do this?!" Of course, we had to do "this" for his well-being, but honestly, I know there has to be a bigger purpose than that.

In Romans 8, we are reminded that the sufferings of this present time aren't worth comparing to the glory that God will reveal in us. The Lord has a bigger answer to the question, "Why?" I know He wants us to bring our hearts to Him, pour out our prayers and our big questions, and give Him time to answer. Why? Because He is still God, and He is still good.

God is Here

Update on Samuel's Condition:

We respectfully ask that you do not mention his condition to our children.

It came as a shock when Samuel started waking in the middle of the night on September 16th.  The first time it happened, I was in the laundry room folding clothes when he walked over to me without saying a word.  He began to cry but never once looked at me.  The next time it occurred was 5 days later, except he didn't get up.  He sat up in the bed, screaming my name over and over.  I ran to his side, but he never looked at me.  He went right back to sleep.  The following time was the same way, different word/phrase, and Brian handled it just as I had, reassuring him that we were there, laying him down when he calmed, and watching him as he fell back to sleep.  The fourth time was very similar.  We began to assume his migraine medication was causing him to have night terrors, and we had called his neurologist with this concern.  She had scheduled an EEG for late October to check.

However, things changed on October 6th.  With Brian out of town for a conference, Samuel woke up screaming as usual.  I went running.  He said my name over and over, but he never looked at me or turned his head.  He was sitting straight up. His hands were cupped, but he was putting one on top of the other, over and over again.  Then, I noticed that his legs were stiff and toes were curled under, and I started to feel overwhelmed as he repeated my name.  I kept reminding him that, "Mommy is here.  Can you see Mom?  I am right here.  Are you hurting?  Are you okay?"  It felt like it went on for eternity.  I know at some point I started getting worried, and I thought back to the times in which we taught Samuel verses to relieve him from thinking about his migraines.  I was so focused on what was happening to Samuel that those verses weren't coming to mind, but this phrase was, "God is here."  So, I continued to tell Samuel, "Samuel, Mom is here, and God is here, do you know that?!  He's here."  Eventually, he stopped crying, and the intensity ceased.  He didn't lay down, though; he just slouched over.  I carefully laid him down and watched as he continued to breathe.  He never once looked at me.  

I texted a dear friend because Brian didn't answer, and she helped me to make the decision to call the on-call neurologist.  He instructed me to sleep near Samuel, watch his breathing, and call our neurologist the next morning.  

The next morning proved difficult for Samuel as his right leg was very weak.  I soon called the neurologist.  She got us an EEG for the next day (10/8).  Within a few days, we had the results.  His night terrors were actually seizures.  We had an MRI (10/14) a few days later to check his cyst and chiari which showed no significant changes.  He had a terrible time with the MRI and was incredibly nauseous following it.  Days following were fast, and the appointments and calls were many.  We've learned that it seems he is having partial, temporal lobe seizures, and because he's had many at this point, he is considered epileptic.  He has had to change medicine, but because after he changed it, he had two episodes in a row, we had to double the dosage.  He's doing better now and not had an episode/seizure since this past weekend when he had a few.  

We will need to know for sure what kind of seizures he is having by having an extended hospital stay at the end of November.  This gives the medication time to work and him time to prepare for the idea of staying.  Thankfully, the doctors do not believe his cyst and chiari are connected or causing the seizures.

I will be honest... this has not been easy on our family.  It's surprising to us, but it doesn't surprise the Lord.  It has taken our breath away and scared us.  A LOT.  Watching our child hurt and suffer without being able to help is hard.  It's reminded us to remain on our knees in prayer and to ask the Lord (and our family and friends) for HELP and for PRAYER as well.  We cannot do this on our own.  However, our God is big, and He is mighty to save and heal.  I sometimes think that we are stuck in this situation, but this is not the end.  It's only the beginning of the story on the way to God's glory. 

For I consider that the sufferings of this present time are not worth comparing with the glory that is going to be revealed to us. 

Romans 8:18

Please consider our Samuel when you pray.  We're clinging to the fact that God is here.

In His name,
The Johnson Family

Yesterday

Written April 29, 2015

Yesterday was harder than I want to admit. It's probably going to be a day I will always remember. Samuel struggled, and as his mom, I will admit that I struggled too. I cried out to God (and to Brian) a lot more yesterday than I have before, and I made more phone calls to doctors than I have in the past.

It seemed like a normal day when we woke yesterday. We went to the homeschool/classroom, but Samuel was moving very slowly with his blanket in tow. His eyes were dark, and it was almost as if he hadn't slept 9 hours the night before. This child of mine who loves school and learning didn't go to his green desk; instead, he went to the corner of the room, laid down in the floor, and put his blanket over his head.

The rest of the day went slowly. It involved a lot of falling asleep, waking up only to get sick, moaning, very little speaking, and falling asleep again. Yesterday... it was scary for me. I waited on phone calls from the neurologist and from our pediatrician, but I couldn't help but notice how tired and how different he seemed from just a few days before.

In God's sovereign grace and provision, He cared for Samuel yesterday when I was frightened and unsure of what to do. He seemed to lifeless to me, but God was sustaining him and knew exactly what to do when I didn't. How grateful I am for my Heavenly Father! His care is so much greater than mine for both me and the children that He's entrusted me with.

Today... oh, TODAY.

Today, Samuel is filled with laughter and smiles, and he is gladly sitting on the couch, doing his school work because he realized he missed it yesterday. I am typing this through tears of thankfulness because joy truly does come in the morning. Friends of ours are going through trials that I cannot fathom. Their children are facing battles that shouldn't be comprehended by little ones at their ages. 

Yet, I see God. I see him working it all together for good. Romans 8:28. Even through the hard, disappointing, sad, unfair situations, I see that God has a greater purpose that I cannot truly understand at this time. I have to be willing to trust His plans and know that His will is going to be done in each of them... because yesterday, oh yesterday, I had no control. God had it all.

I don't know what tomorrow holds or what next week brings, but I know God already has it planned. I want to be willing and able to trust Him whatever it looks like...

The doctors believe Samuel was having an adverse reaction to his new medication. The dosage will be lowered and monitored for a short time.

With God, All Things are Possible

When we met with Samuel's neurosurgeon a little over three weeks ago, I can honestly say I (Jenna) immediately felt as though we were facing a battle that was impossible. It felt so much bigger than us. I felt small and insignificant. I realized quickly that Samuel's diagnosis was completely out of my hands. As a mom, that was a tough realization.

We were told Samuel needed to see an opthamologist and a neurologist, but that it would be at least six weeks before we could get into neurology.

However, I followed the instructions given by the specialist, constantly journaling his symptoms, and doing my best to wait patiently on the nurse to call us with our son's next necessary appointments despite his symptoms increasing.

Days became a week. One week became two. Two weeks have now become a little over three. Yesterday, we got the call we never expected.

Samuel will be seen this Thursday, April 16th, by neurology!

So many days I have felt as though the struggle is impossible and we won't make it to the next point, but God keeps showing up and reminding me that this is completely out of my hands. It is in His. The neurosurgeon (NS) said it was unlikely to get into neurology in 6 weeks' time, but with God, it is.

God makes the impossible possible. I want to cling to that hope this week! He knows what is ahead for our Samuel, and He made a way through an impossible way to have him seen this week.

Please pray that we can get a better understanding of Samuel's diagnosis and symptoms at his appointment.

From This Point Forward...

We met with Samuel's neurosurgeon this morning after learning two weeks ago today that he has a Type 1 Chiari Malformation and a Pineal Gland Cyst.  His symptoms began in January with headaches and have since progressed this month to dizziness, nausea, tingling/numbness in hands and feet, itching, weakness, etc.  After a spine MRI on March 13th, we were to learn the results.

Thankfully, Samuel's spinal cord is normal and has not been affected by the malformation in his brain!  There has been no tethering or appearance of cysts.  

From this point, we will continue to monitor and journal his symptoms over the next six weeks to provide the neurosurgeon the data needed to determine whether a Chiari decompression surgery is needed in Samuel's case. 

In the meantime, we will visit a ophthalmologist and neurologist to see if they can provide further details or answers regarding Samuel's symptoms.  We will meet back with the neurosurgeon in six weeks.  Pray for continued grace through the daily struggle, adequate rest, and wisdom as we schedule appointments, log his symptoms, and determine whether surgery is needed at this time.

We will communicate from this point forward on this blog to keep you updated and provide you with specific ways on how you can pray for our family.

Please respect that we are shepherding our children through this process and ask that you refrain from speaking about it to them.

http://jennarjohnson.blogspot.com/2015/03/seeing-through-suffering.html

Seeing through Suffering

On Monday, March 9th, we took Samuel into Vanderbilt Children's Hospital for a sedated MRI of his brain.  He has been complaining of headaches since late January, and after experiencing other symptoms of nausea and dizziness, though these could signal a sinus infection or migraines, our pediatrician saw signs of neither.  After his exam, he felt it best that Samuel have this test done.  We were expecting the results but not as quickly as we received them.

On Tuesday, the next day, our pediatrician relayed the news that Samuel, in fact, had two abnormalities on his MRI.  We were informed of them and waited for our next call.

On Wednesday, we heard from the neurosurgeon nurse practitioner who explained the MRI results and gave more details about what we would do from this point.  We were to begin taking detailed notes of Samuel's symptoms, and he would be having an MRI of his spine two days later.  She also informed us that Samuel would meet with his neurosurgeon on Monday, March 23rd.  The seriousness of the situation began to sink in.

On Friday, Samuel had a sedated MRI of his spine.  He handled it all very well, considering how challenging it must be for a four-year-old to process.

Over the next week, we continued to journal Samuel's symptoms, and they progressively worsened. From dizziness and itching to tingling hands and numb feet, he went from what we thought was perfectly fine in December to having difficulty holding his toothbrush and using his scissors in March. There have been moments when he is unable to stand because his feet are numb and nights when he cannot sleep well because his head aches so fiercely.  He appears fine to most, but there were definite changes... and we saw them.

Do you know what we also saw?!

We saw God open doors miraculously.  We saw Him take care of our son when we felt unable at times.  We saw friends love us through calls, texts, and meals.  We saw the church pray, and we FELT it.  We saw the Word come to life.  We saw the importance of staying IN the Word and filling our hearts and minds with truth from it.  We saw how necessary it was to love each other.  We saw the need for being thankful for what we have.

It hasn't been easy, but I KNOW that God didn't make mistakes when He made this precious boy of ours.  The doctors say he has a Type 1 Chiari Malformation which is a brain defect, and he also has a cyst on his pineal gland.  Both of these are making it difficult for spinal fluid to flow freely and putting pressure on his brain.  Although we are, I know that God isn't surprised by these.  God still has a plan to receive glory through this situation with Samuel, and we are praying to that end.

We will communicate from this point forward on this blog to keep you updated and provide you with specific ways on how you can pray for our family.

Please respect that we are shepherding our children through this process and ask that you refrain from speaking about it to them.