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.

Turning Moments into Memories

When we received the news last week that Elias was going to have brain surgery on June 6th, I knew what I wanted to do in the two weeks we have leading up to it. I knew we had to have pictures, lots of fun, and tons of memories. I have been determined since signing consent forms to make his summer memorable for him (and us) considering the rest of it will be quite trying. I want him to do things he hasn't before, and I hope to let him do things he cannot over the next few months.

My heart is already filled with thankfulness that, in just a few days, we have done some of the things I imagined for him. You know, hearing a certain kind of news shouldn't dictate living our lives with intention and with purpose, but it sure has motivated me to do so. I had no clue this was coming, and while we never do, I have realized that each day being a gift is completely true.

God has given us both a possible answer with surgery and time to prepare for it, but we have known all along that life and what was to come has never been in our control. He has given us another day to rest in Him and to enjoy His glory. Isn't that what every single day should look like?!

In less than a week, Elias has had his five year pictures taken, found out he would be having a baby brother, ran through the Rivers of Tennessee fountains, chowed down on chicken and cheese crepes from the Farmer's Market, experienced the Nashville Public Library and its amazing Storytime, went bowling and had a "lucky" green ball, learned to ride a bike without training wheels, ate blue birthday cake kettle corn, and received the news that he would be having surgery. This sweet, wild child of ours is having a big summer. I am blessed to be a part of it, and because these moments have been so special to me, I wanted to share them.

Heavy Burdens

It still isn't easy to say aloud.  Two days ago, we met with the neurosurgeon to review Elias' MRIs.  Thankfully, the spine MRI was clear, but we still had to face the fact that he has a Chiari brain malformation AND central sleep apnea.  He explained to us that the only option for Elias is a Chiari decompression. We knew it could happen, but when it actually came to signing consent forms for a brain surgery, it became very heavy.

Can I be honest?  I don't want to go through this.  I don't want to watch our son go through a surgery like this.  I don't want to be in a hospital or have him endure the pain.  However, the burdens he has carried in his five short years of life (with having sleep apnea, waking up constantly throughout the night, and always being sick, ill, and angry) makes it obvious that he deserves a chance for things to be better.  It's a difficult thing, but it's the right thing.

God made that perfectly clear through His overwhelming peace last week.  The Lord had prepared our hearts for this.  Why they feel so heavy now isn't that surprising.  The surgery will take place on June 6th.  We are beginning to make preparations for it.  We know that he will be in surgery around 3-4 hours, in ICU for 1-2 days, in a regular room for 1-2 days, at home carefully monitored for 2 weeks, no physical activity or swimming for 6 weeks, and should be ready for most anything in 6 months.

Obviously, our schedules have to change, our lives are being altered a bit, and our son is going to undergo a big thing.  It is just what God has in store for our family.  Life seems to be easy and light at times, and at others, it is tough and heavy to bear.  I am incredibly grateful that Jesus says His burden is light.  He tells us to come to Him (Matthew 11:28-30).  We will lay it down at His feet for rest.  I keep imagining the magnitude of God's love for our son and how He sent His own Son to die for ours (and us), and I am immediately comforted by His Spirit.

Will you pray for our family and lift this burden to the Lord on our behalf?  Specifically, pray for Elias' surgery to be successful, recovery to be swift, no complications will arise, and for peace for his precious heart and mind.  Please pray that his brothers (at only 7 and 8) will act with and be given compassion, understanding, and love.  Pray that we, as his parents, will be patient, peaceful, and prepared for what comes our way.


I wrote about Elias' diagnosis here:
http://jennarjohnson.blogspot.com/2017/05/perfect-peace.html

What is a Chiari malformation?  Chiari Malformation Type I (CM) is a neurological disorder where part of the brain, the cerebellum (or more specifically the cerebellar tonsils), descends out of the skull into the spinal area. This results in compression of parts of the brain and spinal cord, and disrupts the normal flow of cerebrospinal fluid.

How is it treated?  If the symptoms aren't severe, doctors may recommend just monitoring the situation with regular MRI's and treating the symptoms individually. However, if symptoms are interfering with quality of life, are getting worse, or if the nervous system is being impaired, doctors may recommend surgery. The most common surgical treatment, performed by a neurosurgeon, is known as decompression surgery.

What is surgery like? Decompression surgery is a general term used to refer to any of a number of variations on the same basic procedure. The goal of the surgery is to create more space around the cerebellar tonsils and restore the normal flow of CSF. The procedure involves removing a piece of the skull in the back of the head near the bottom (craniectomy). Often part of the top one or two vertebra are also removed (laminectomy). At this point, depending on the individual case and doctor, some doctors will also open the covering of the brain, the dura, and sew a patch in to make it larger (duraplasty). 

For more information about Chiari brain malformations and Decompression surgery:
http://www.conquerchiari.org/education/chiari-faqs.html

Perfect Peace

It didn't come to us as a shock because, thankfully, God had prepared our hearts for the news we would receive today. He was so careful in His sovereignty to plan this in such a way that we weren't overwhelmed by the words we heard or even fearful of them. When the details were laid in front of us, we knew God was already there.

We had heard some of this type of news before... actually just two years ago. Then, it cut deep and made us feel paralyzed by the unknown. We researched and gathered information, tried different medications, and had many appointments. All of that came to mind today hearing what I hoped we wouldn't but knew we could.

Elias has been diagnosed with a Chiari brain malformation (a neurological disorder where part if the brain, the cerebellum and more specifically the cerebellar tonsils descends out of the skull into the spinal area causing pressure and other issues), just as Samuel was in 2015. Their malformations are quite similar in size, but the fact that Elias has central sleep apnea (which causes him to stop breathing during sleep) completely changes things.

He will soon go in for a spinal MRI for further information and to rule out a syrinyx or tethered cord. If he has those, he is definitely going to need brain decompression surgery to help relieve pressure. However, if he does not have those, he still has a strong possibility of surgery because of his current prognosis.

As the doctor explained all of this today, I remembered the worry that overtook me when Samuel was faced with a small Chiari (that, thankfully, hasn't required surgery), but I wasn't feeling that way with Elias... It was peaceful. It was matter of fact. It was out of our hands, as it always has been, and completely in God's. It felt great to realize these simple things and truths.

This might not have been what I wanted or expected to hear today, but it was exactly what we had asked and prayed for... an answer to our son's medical concerns. There was power in knowing now how to proceed, what specifically to pray for, and WHO was blessing us with peace. God knew what we were to learn today, and He granted us wisdom and knowledge from two years earlier to face this news with strength, grace, and peace that completely surpassed all of my understanding!

Hope

As I sit beside Samuel in this hospital bed while the last few hours of his epilepsy monitoring come to an end, I cannot help but feel grateful. He has gone 10 days without an episode, and 3 of those 10 days were in the hospital without medication preventing it. I realize that these facts alone are reasons enough to praise God!

The past year has been a difficult yet hopeful one for Samuel. In January, he began having daily headaches. By March, he was diagnosed with a chiari brain malformation and a pineal cyst. Not long after that, his neurologist confirmed he was having migraines. He has been on different medications, and the side effects have been intense at times. In September, he began having these episodes that were later diagnosed as seizures in October.

However, despite all of this, he began Kindergarten (homeschooling). He learned how to ride a bike. He played his first season of soccer. He knows how to add and subtract. He enjoys writing letters for others and putting them in envelopes. He is a giver and has taken on the joy of blessing others with this. He has learned to save his money and keeps a wallet. He knows sight words and is reading. He loves church, singing, and praying.

I had hoped the doctors would get more information from this hospital stay and that they could tell us exactly what was going on. I wanted to wake in the middle of the night last night, as we have so many times over the last 3 months, to the sound of him needing me. I needed more so they could help us help him.

But God...

In the midst of my wishfulness, God tells me that I already have all that I need. He is the Creator of this unique, precious boy, and He knows exactly what is going on inside of him. He knows when he is waking in the middle of the night, and God is there before my husband and I can rush to his bedside. He tells me that wavy lines aren't the answers I need today. He reminds me to trust that He is in control. He already knew that the doctors wouldn't get what they needed because He has something else in store. What that is may not be for me to know right now, and I have to realize that God Himself is enough.

Whatever you may be facing today, do not let what you want get in the way of what God has planned. Last night, I was selfishly hoping for an episode. However, as I look in the smiling face of my boy this morning, I see that God wanted to bless us with ten days of being seizure free! God's ways are good, and He knows what is best. Allowing Him to have His way makes room for hope. That is what I feel this morning more than anything else.

Perspective

I had a wise man today tell me that he just didn't believe it. He was going to choose to trust that God could heal Samuel's condition of Chiari, and he was going to pray to that end.

Do you know what I said?! I immediately told him it was unlikely. That the same MAN (Jesus) who made the lame walk, blind see, and dead rise couldn't reverse or heal this malformation within my child's head?! Standing there with him, it was easy to state medical facts that I have researched or been told, but my faith perspective wasn't coming into focus.

Oh, but he made me see it so differently. I don't know what will happen, but I sure want to change my perspective in light of this conversation. It is so easy to become focused on the difficulties of this condition and the symptoms we are facing and lose sight of WHO is in control of it. God does not change. He does not love us any less. He wants us to cling to Him that much more. I believe that this will be what God decides it to be, and I pray Samuel's Chiari story (and whatever else he is diagnosed with) will be used to bring the Lord glory.

Perspective... it changes everything, and lately, I am sorry to say I have been looking at links online instead of facts in THE BOOK - the holy, inspired Word of God. My friend today gave me perspective, and I really needed to hear it.

Rest for the Weary

We met with Samuel's neurologist today for the first time. She listened intently to our concerns, asked many questions, went over his MRI scans and results, and spent a great deal of time with us. She had a way of explaining things that brought rest to this weary mom.

She did not discount the fact that Samuel does have a 8 mm Chiari Malformation (CM), but she felt as though his headaches were triggered by anxiety and a sudden life change in January when they first began. At that time, Elias had a big surgery (adenoids and tonsils removed), I left my pre-K teaching job, and we began homeschooling.

After learning more about him and his history, the neurologist diagnosed Samuel with migraines. Many of his symptoms could be attributed to Chiari, but they are more so migraine-related due to stress and fear of being in pain. She said it isn't uncommon for patients with one neurological issue to end up with another, which happens to be the case for Samuel.

Right now, the neurologist believes we can treat many of his symptoms with a daily preventative. We are praying it helps and that he can both tolerate it and begin to rest well again.

We still have to meet with opthamology on May 12th to make sure his eyes are fine, but the neurologist said it shouldn't change her course of action. Until then, we will continue to monitor his symptoms, begin new medication, and wait patiently on the Lord.

Oh, but He's already here... I felt His presence today when I began to feel overwhelmed in describing all of Samuel's setbacks from fine motor skills, losing independence, and lack of sleep. I knew He was there when I began to cry explaining how difficult it had been lately to get Samuel to eat. I realized He was there when I asked if we could see Samuel's MRI scans...

and when I saw our sweet Samuel's button nose on that computer screen and the neurologist pointed to his Chiari, do you know what I saw?!

I saw the hand of God. It was so clear to me. That "malformation" was nothing like I had pictured in my mind. It's there, obviously, but it wasn't as overwhelming as I expected it to be. I felt peaceful sitting there today because I knew God was already there. I was finally ready to fall into His arms and let Him show Himself strong.

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.