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!