Tuesday, May 14, 2013

close call

Venturing through emotion - especially pain is always more fruitful when I write about it.  When I get it out of my head.  I feel less 'stuck' and less 'trapped' this way.

To those of you unaware of the trauma we've just come through, while on our final evening on a week long trip to Mexico for our anniversary, we got the 'call' - the one you hope to GOD you will never get.  The call that your child is in danger.  Not just 'gashed his head and is going to need stitches and some ice...'

Real deal danger.  Like....he's on a ventilator and they hope he will be breathing on his own soon.


Was I not just skipping through Riviera Maya....bartering for hand painted maracas to bring home to this very baby?  Was I not JUST about to get together and go grab dinner with my husband and celebrate our final night in Mexico?  Weren't we just at a Starbucks that had a Mariachi band singing at it?

And in a moment.  We panic.  We fear.  We freeze.  I couldn't even cry yet.  I just sat there wide eyed wondering if there was any way to feel any more helpless than I did at that moment?

My Dad and Mom were with our children while we were away and it was my poor Mom who had to see the entire ordeal take place.  An 11 month old.  Having a seizure.  That would not stop.

Just like we do, as women, we rise to the occasion and we act.  She swiftly called 911 and they were to our home in moments.  Off they went and he went on to have 2 additional seizures.  The 3rd one would not stop.  20 minutes....finally they had to put him into a coma that slowed everything down, including him needing to be on a machine that would breathe for him.  11 months old!  Tiny!

With a fantastic NICU at the hospital he was at yet not as much by the way of helping a 22lb baby, they felt he needed even more precise care and proceeded to life flight him to the downtown Cleveland Clinic campus.  My poor Mom is handling this all like a pro - and with a dear friend of ours (who happens to be a NICU nurse and stayed by her side) but still - who wants to be the one dealing with all of this with SOMEONE ELSE'S baby?

My sweet Dad cried over the phone explaining how awful a sight it was to see.  He was worried and when you are a girl and your Dad worries, it's scary.  This was truly my nightmare.  Joel's brother and sister (who were with us on the trip celebrating THEIR anniversary) started getting the ball rolling - securing an earlier flight home, helping us pack, speaking life over us and trying to keep things light.

Alarms were set for 2:30am to catch a 3:30am cab to catch a 6am flight out of Cancun.  From the moment we left the hotel, we no longer had a wifi connection and had to wait 7 hours until landing in Miami so we could switch on our phones and find out if our boy was breathing....had brain activity....or not.

He did.  He was breathing.  His brain looked awesome.  We sighed.  We cried.  We just wanted to hold him.  The planes seemed to go in slow motion.  I tried to eat and I tried to sleep but how do you do anything that could seem pleasurable when you are away from your suffering child?  I couldn't.

Finally, we arrived in Detroit - sweet friends actually drove our vehicle to the airport so we could just leave from there - and off we went.

I remember holding him the first time and he was restless but sleepy.  He just didn't look like my Simon.  He looked so pale and so exhausted.  He'd been through so much.  All I could feel was, 'I should have been the one that was with him.'  So.much.guilt.

Hours went by.  They kept him a bit longer in ICU as he was just not coming out of his groggy state well.  He wouldn't make eye contact and only slightly seemed to know us.  I freaked out. I tried to keep composure but it was in THAT moment, I lost it.  Worrying over every thing that could have happened.  Did he lose oxygen long enough that his brain will forever be affected?  Is he even going to be the same boy I knew?  I felt like I was suffocating under all this worry.  I told Joel I needed to walk around the clinic a bit.

I went down to the chapel.  A quiet man was on his knees praying and I went to the back corner and knelt down.  I thought, "I'll just be real quiet and offer my prayer up...."  and I sobbed....so loud I couldn't control it.  Body shaking, tears flowing and gasping for air in between.  I wept.  I truly wept. I didn't even know what to pray at this point.  My child was alive but what if he wasn't going to recover?  What if What if What if What if.............every sentence I began to think started with those two words.

After about 8 minutes of this.  The sweet and small little man spoke, 'Excuse me, can I help you or get you anything?"


I looked his direction but couldn't even look him in the eye and said, 'Please pray for my son, Simon." He said he would and I threw my head back down.  Embarrassed at what a mess I was.

I saw him write in a book and shortly thereafter leave.  I finished my prayer and got myself together.  I noticed the prayer book he must have written in.  I decided to leave my own prayer.  I don't even remember what I wrote but I do remember what others wrote.  I looked back at the entry just before mine and it said, 'I trust you, Jesus.' and that's it.

That's all he wrote.

I looked at the page prior and a woman prayed for her husband - ending with 'I trust in you God."

The one before that....someone praying for strength for that day and for results they would receive.  They wrote, 'I trust in you.  I put my hope in you.'

I felt so feeble and small.  I could have written blog paragraphs but that sentence would have been found no where in any of them.

I sat still and asked God to forgive me for my lack of trust and my incredibly large fear.  I told Him I knew He must adore Simon and care for Him since He made him....and added one last sentence to my page.  "I trust in you."

Easy to write.  Hard to do.

The morning after, we noticed our Simon started to smile.  I sang him 'You are my sunshine..." (or as much of it as I could get through) and he smiled at me like he always had.  He was as wobbly as a 3 month old and couldn't hold any body parts up but he smiled.  I saw him in there finally.

The following day, he was holding his head and babbling...'Dadadada....mamamama....babbababa...."

The next day, he was sitting up and acting SO close to himself.  That day. The day before Mother's Day we were told we could go home.  I wanted to cry and jump around all at the same time without yanking cords off of him, of course!

The diagnosis of all he had been dealing with was called a complex febrile seizure.  If you're unfamiliar, I highly recommend reading this article as it clearly explains it and how common it is. The main risk he has from this point is having another febrile seizure.  So, we're doing all we can to avoid him having a fever but ultimately....we are learning the difference between 'trusting in God' and saying we trust in God.  It's really really different and we're not super great at it.  We're trying, though....and thankfully a mustard seed is small which means, I can't be far off. (Luke 17:6)

I have SO many people to thank - as it was remarkable to see how a family stretching across the globe came together for this one little Simon boy.

To all of those who prayed, shared the image I posted....or just wrote/texted to encourage.  Thank you for making me feel like I wasn't alone.

To the beautiful staff of the CLE clinic...from docs to nurses to the guy/gal who flew the helicopter...I'm trying hunt you down so I can bring you muffins or a pie or something....

To my sister inlaw's family who helped secure our flight change....arrange our vehicle coming back to us, you moved fast and you loved us through your actions!

To our precious neighbors who watched our sons and tried to help them not be afraid.  You were there. We will never forget that.

To our friends who have/are bringing us meals....dropping off coffee...calling, texting.  Thank you!  Means more than you know - to a Puerto Rican, food is LOVE.

To the amazing staff at Twist Creative - for offering to send us our favorite meal from anywhere in the city....what a treat - we loved our Greenhouse Tavern to-go....

To those 3 friends I facebooked right away - you prayed.  you paced.  you cried.  you made me feel like I wasn't alone because that was the truth.  You've since visited, cooked and been such a blessing to us with words and faith.

To my brother and sister: Ryan and Kim - you are more than family, you are the people who can see the pain, the ugly, the lack of faith and speak life and beauty into it.  Thank you for coming and being in CLE when all you had was Mexico luggage and it snowed here.  Thank you for loving my older sons and giving them a great 'bacation' at the hotel pool....you were such a ray of light in a dark moment.

To Karla...our friend, NICU nurse, angel.  You stayed by my Mom's side and you spoke to Simon even when he was stuck with a million tubes and probes...and simply told him you were there....you held my Mom through a dark night and you were a presence that gave us all strength and peace.

To Dad...I'm so sorry you had to make that call but I am so thankful those boys were in such good hands....and that you kept the older ones safe and protected from fear.  I always looked to you for that growing up and you gave them that in this time.

To Mom - words won't do it.  The action.  The prayer.  You were by his side and you kept my son alive with your faith.  I will always love you because you are my Mom but you are SO much more than that to me.  You are truly my hero.  I am so blessed that this happened when they were with you - and that your knowledge and experience could provide you with wisdom and perceptive ability to move quick.  I have thought of a million 'Omg what if he had been here....' and I truly believe he's here alive, smiling, giggling and getting stuck under the piano every hour or so....because of you.

There is the story.  I was encouraged by several of you to write it down.  Truth be told, I just wanted to forget it all but I think there is purpose in writing it all down.  The next time I write it will be about the fabulous 6 days PRIOR to this event.  I am trying to separate the two as we really did have a remarkable vacation - more on that later.

All our love and thanks.....

Joel and Jess