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!

Allergy Testing Revisited

We knew it would have to be done at some point, and since Elias has struggled some with runny nose and a cough since his adenoids and tonsils were removed in January, his pulmonologist felt now, April 22nd, was the time. He is one month away from turning three, and he handled this testing so much better than he did at 16 months old.

I kept him busy by playing with my phone and watching YouTube videos of Paw Patrol. The fifteen minutes flew by! He didn't cry or scratch at all, and that is probably because he isn't allergic anymore and hasn't added any new ones! Praising God for this great news!

Elias Escapades

He really is quite the child. He has turned out to be the most rambunctious, energetic, and hilarious of our three sons, and not a day goes by that he doesn't drive me crazy. However, he can make me laugh more than anyone in the world.  

Just recently, for instance, this little bit:

* decided to pour a gallon of water all over the bathroom floor.

* has taken a liking to dressing himself in the most fascinating ways. Clothes are often inside out, socks are gloves, coats are acceptable in the spring, and anything goes.

* shovels food in his mouth.

* thinks he can avoid bedtime if he's pretending to potty train, which he clearly isn't interested in attempting or accomplishing yet.

* likes pretending to be the bad "die", which is guy, and runs at us with a water gun.

* figured out how to unbuckle his car seat, get really quiet, then fall asleep while we're on the interstate. Oh, yes, he did.

* ate both of his brothers' leftover pieces of birthday cake. Both of theirs.

* likes to have crazy hair... at his sleep study, they put this gel on the electrodes to keep them on his head. When they came off, his hair was everywhere, but he just laughed!

Friday Night Plans

I didn't know I had any Friday night plans, but that quickly changed this afternoon. Thanking God for the last minute opening for this little guy to have a follow-up sleep study tonight! Praying for rest for him and a successful study.

He is having this to determine how well he is doing following the surgery that removed his adenoids and tonsils on January 19th.

Elias' 19th - 21st Months

In Elias' 19th Through 21st Months, He:

Weighed in the 75th percentile.
Was in the 90th percentile for height.
Wore size 18-24 month clothes.
Wore size 5 diapers.
Wore size 5.5 to 6 wide or extra wide shoes.
Had his 18 month and flu shots.
Reacted adversely in his leg to the DTAP shot.
His leg was swollen and bruised for days.
He actually didn't lose the swelling for 4 weeks.
Was super active.
Liked to climb, explore, and play with his big brothers.
Discovered he could take off his own shirt.
Ate a TON.
Loved foods like lasagna, chicken and vegetables, etc.
Went to Pigeon Forge for Called Out's singing.
Enjoyed being at the hotel and hiding in the cabinets there.
Saw his first snow!
Celebrated Thanksgiving!

Loving the play place at McDonalds.

Becoming very brave at the play place!

His favorite place to be is the bathtub.

He had climbed in one morning all on his own.

Celebrated Thanksgiving lunch at Mother's Day Out 

with Pop and GranJu

Took a trip to Pigeon Forge...

Eating with Mom at Ruby Tuesday, looking very big!

Seeing snow for the first time - amazed!

Thanksgiving Day - Mommy and Elias

No one loves Thanksgiving dinner 

as much as this little buddy does!

Really, REALLY liked shoes.
Always wanted them on in the house.
Always took them off once we got in the car.
FINALLY got tested for allergies!
Was NOT allergic to milk, as once thought.
Was allergic to outdoor and indoor pollen and ragweed.
His eczema went nuts.
Crazy red cheeks and chin.
Was scared of dogs but always said, "DOG!"
Was a fan of Elmo.
Really liked to color.
Got to see the lights at Opryland.
Was very fascinated by Christmas lights!
Celebrated Christmas!
Got bitten by a vicious 2 year old at McDonalds.
Had an expanding vocabulary.

Wearing his Elmo house shoes.

Getting out the Christmas tree!

Saying CHEESE before getting his allergy testing!

Praying we aren't allergic to CHEESE.

So, the redness indicated he was allergic to SOMETHING.

Trying on Mommy's boots!

Christmas in West TN, without Mema.  

So sad, but happy at the same time.

Mommy and Elias

This kiddo loves bananas.

Shopping in West TN for their Mema Christmas gifts!

His "infamous" red cheeks...

Some kind of crazy.

They pop out at random times.

Loved watching food bake.

He would stand for minutes just watching!

He enjoyed the Christmas boxes 

more than the Christmas gifts.

He loved to color!

Aunt Ca got him his own Sesame Street crayons.

Playing in boxes, of course.

Hanging out in Mimi's closet during a tornado warning.

Sweet cousins on the church steps 

on the Sunday before Christmas.

Opening Christmas gifts from Mom and Dad.

He loved these dirty dog bath toys.

Next time, we'll just buy him empty boxes.

Showing off his Christmas gifts from Mom and Dad!

How I always found him...  shirtless.

What his leg looked like for weeks

following his 18 month shots.

Redness, swelling, knot in thigh.  

Scary for mom and dad.

Aggravating for active toddler.

UGH, eczema.  

We dislike you.

But we really like our Elias!

Giving kisses to his best buddy, Lily!

Playing in the play place at McDonalds 

just moments before the scariest moment ever.

Moments after the scariest moment ever.

He was bitten repeatedly by another child

while up in the play place. 

Mommy rescued him!

Two major bites:

One under his eye and one beside his ear.

An hour after the bites, it was time for a bath.

Our pediatrician recommended lots of baths.

Shows the extent of the bites.  

Loved going to Mother's Day Out.
Got changed from the nursery class to the 2 to almost 3 year old class.  WHAT?!
Did great with the change!
Still liked coloring, playing, and exploring.
Enjoyed when Mimi, Ca, Pa, or Pop visited.
Hated to wear clothes.
Learned how to take his pants off.  GREAT (insert my sarcasm)
Began to say "poo-poo" or "pee-pee" when dirty/wet.
Loved doing whatever his big brothers were doing.
Made a BUNCH of messes.
Always asked for "beggies" aka veggie straws.
Was such a "ham."  Always made us laugh.
Loved laughing at himself.
Had an amazing imagination.
Loved to play "pretend" with his brothers.
Pretended to be a baby and a puppy dog.
He understood way more than he should.

Constantly was singing and asking for these songs:
More, More, More (More than Conquerors from Seeds of Worship cd)
Mine (This Little Light of Mine)
Book for Me (The B-I-B-L-E)
God We Serve (What a Mighty God We Serve)
BIG (My God is So Big)
This is Day (This is the Day that the Lord Has Made)

Still healing from the bites.

Would proudly exclaim, "GO DORES!"

when he wore his Vandy shirt or saw any type

of sports on television.

Scabs finally appeared.

Pretty regular at our house.

Clothe-less lunches.

Always wanted to take pictures 

and then see them on the camera screen.

Being brave and balancing.

Showed us:

1) he always knew what he wanted,

2) safety locks were no match for him,

and

3) we needed a better vacuum.

Pantless.

Loved to have books read to him.

Had no fear.

Nothing scared him:  not the dark, heights, being left alone, NOTHING.

Loved having friends over to play with.

Always asked for "Bubble."  

Bubble Guppies was his favorite t.v. show.

Really disliked wearing diapers.  

Pulled them off about once a day.

Always said "potty" and tried a couple of times.

(he's just too little!)

Ripped three keys off of mom's laptop. 

Thought he could do anything!

Loved eating strawberries, noodles, chicken, goldfish, veggie straws, and pizza.

He always ate more than his brothers.

Usually asked for "more."

Friends came over to play!

Look how EXCITED Elias is.

Watching the Super Bowl 

with Daniel and family.

Really liked eating popcorn.

Shirtless.

Flying high with Dad 

and laughing the entire way up and back down!

His current vocabulary includes these words and phrases (and A LOT more) at the end of 21 months:
no, more, mine, hi, bye-bye, shoes, I did it!, peek-a-boo, sorry, go, yogurt, pizza, banana, apple, cereal, spoon, fork, yeah, I see you!, Daddy, Momma, night, Why?, please, Mimi, Pa, ouch, see, bible, He hit me!, mean, Be nice!, dog, snow, outside, play, juice