#BentNotBroken: Curvy No More

*Disclaimer: This is a longer post then I typically write. It contains a few images that some may find upsetting. I do not feel like I can adequately share this experience with you without sharing the images. I promise they are not overly graphic.

Evie is now two weeks post-op.

It feels like we just came home yesterday and at the same time it feels like it all happened months ago. Maybe sleep deprivation does that to a person. Makes them loose all sense of time.

I want to tell you that I've been an emotional wreak. That I have wept and wailed. That anger and fear consumed me leading up to and after the surgery. But I would be lying.

I felt at peace. Sure I worried a bit. Was this the right decision? Would she forgive us for the pain that was coming? Does she understand why this was the path we (her parents) chose for her? But those were just passing worries that fled back into the darkness that is fear whenever I remembered that I have no control. This wasn't no longer in my hands. That, in truth, it has never been in my hands.

When I acknowledged that I had absolutely no control in this situation, that is when peace started to take over. While binge watching Longmire (video clip) on Netflix a character put into words how I was feeling:

"Peace is not the absence of conflict. It is the acceptance of conflict." 

I accepted that we would end up at this crossroads many years ago. We hoped and prayed that it would be when she was older, but with each x-ray that hope dimmed a little more. So this was the path we chose to take and we have no regrets. The acceptance of this inevitability, the acknowledgement that it was not in my hands, the knowledge of whose hands it was in, and my mad research skills came together and peace blossomed from the inside out.

Now let me get down to the nitty-gritty stuff...

We checked into Wolfson's the night before her surgery. It looked like we were moving in and essentially we were since we were there for 8 days. The PICU team came in to get Evie's IV's placed (this took longer than anticipated) and they had to get at least two that night (a third would be placed the next morning). She smiled and giggled the entire time! When it comes to the traumatic stuff for kids they have people come in the room (if available) to help distract the child. It worked like a charm! *Tip: Try to make sure your child is well hydrated for easier IV placement.

The next morning we were off to pre-op to wait and for a minor buzz cut (sorta). I have a few things that I like to send with Evie when she goes into surgery (yes, we've done it often enough that we have surgical support items). Those items include: her quilt with pink and orange flowers our dear friend Leslie made for her, a crocheted lovie (they help keep her from mouthing her hands) from my mom, and her best friend Moe-Moe the monkey. I forgot to slide her superman leg warmers on before we left the room so they missed this trip (oops!). You'll see the haircut in a bit.

Bye sweetheart, we'll see you soon!

I was very fortunate to not be alone while waiting for the surgery to be completed. Of course her dad was there and so were my parents. I don't think there was anywhere else they would have been. Times of uncertainty brings our family, friends, and our Rett family together. Those we love and those that love Evie texted, called, and emailed us their encouraging words, prayers, and healing vibes (ya bunch of hippies! love ya!) My dear friend Hot Mess came to sit with us during the entire procedure! We all laughed and cracked jokes. It's how we deal with stressful events.

Dr. Eric Shirley was able to place the MAGEC growth rods in Evie's back. This is a great thing because it means lengthening procedures are controlled externally using a magnetic tool that will allow him to extend the rods as she grows (and trust me this girl grows!). The surgery went really well and we anticipated 5-6 hours, but she was done in about 4 and a half! The surgery was a success! We were able to see Evie shortly in her private PICU suite.

Ellipse Technologies: MAGEC Rod & Controller

Once she was settled and we spoke with her surgeon, we were able to see Evie. It wasn't the easiest moment. I couldn't pick her up and cradle her in my arms. I also knew that jostling her too much would hurt her. So we all settled for letting her squeeze our fingers and stroking her hair. She was still intubated when we saw her. They also brought in a portable x-ray machine to take an image of her spine. This gave us an internal visual of how drastic a change these growth rods made for our little girl. The external change was apparent immediately and we could barely believe our eyes. She was so straight and long! Heck, we were all so accustomed to seeing her curled over that seeing her straight felt like someone was playing a cruel trick on us.

Getting her x-ray done.

Before at 70 degrees
After with her spinal upgrade.

Now you may be asking yourself why Evie needed to have her hair shaved off on the sides (yes, both sides) for a back surgery. One word...Halo.

We call it the Dr. Shirley special.
I think he was inspired by Natalie Dormer from The Hunger Games.

Evie was placed in a halo for the surgery to secure her position and keep her body held as straight as possible. In order to achieve this they had to place her in traction (just for the procedure) and screws were used to hold the halo in place (four to be exact). This was not done before she left us (thank you Jesus) so I don't have a picture of what it looks like and the images I've found online aren't really right  (it wasn't gravity traction). As a result, she has two little boo-boo's on her forehead and one on each side of her head. We've made an appointment for Friday next week to have her hair style updated. Embrace the buzz cut!

The first night in PICU was filled with the beeps from various machines, nurses and assistants coming in to check vitals and administer medicine, and me never really getting comfortable. That's hospital life for ya! Our goal was to extubate Evie that evening. Well, that happened...and it wasn't pretty.

Extubation was successful and a bit painful for Evie.

Her little face was red and swollen, which I was prepared for before surgery. Hearing her soft whimper was like music to my ears. It was like hearing a newborn cry for the first time. A sense of relief flooded over me. Unfortunately, her breathing wasn't as strong as everyone would have liked and in order to maintain her oxygen levels she was placed on a bi-pap. Whee! This is obviously not what we would have wanted, but better this than intubation again. It was removed the next day for which we were all thankful and happy.

*Tip: Evie does not expel excess air the bi-pap pushes into her body. As a result, she developed excess air trapped in her intestinal tract which caused some distention of her stomach (she swelled up like a ripe watermelon). We know now she needs to be vented if she is ever on a bi-pap again, which can be done through her g-tube with her tube extension or a Farrell bag.

Once the bi-pap was off, her pain well managed, and she wasn't sleeping we managed to get a few smiles, a faint giggle from her, and a attempts at mouthing her lovie. All joyfully celebrated! These were good signs. She was also quite the social butterfly and everyday of our stay someone came to visit her (not just the nurses, therapist, and doctors). By day two the physical therapists came to get her sitting in her wheelchair. That was a three ring circus because of all the cords, tubes, and iv's stuck in her. Sheer will and determination on their part made it happen and of course I photographed it!

This is an important part of recovery.
One major benefit: It helps clear gunk from her lungs.

The last visitor during our stay in PICU was Miss. Jacksonville, Amanda Hatcher. We met her a few weekends prior to her surgery at the Tim Tebow Foundation Golf Classic at TPC Sawgrass (we had a blast!!!). Unfortunately, Evie was asleep and did not wake until a couple of hours later. She loved tugging on the balloon strings and making them bounce around. While at Wolfson's, Amanda went to visit other patients living the hospital life like us. Thank you Miss. Jacksonville!

Later that evening we were moved to our new suite. I wasted no time getting settled (we were going to be there awhile) and decorating her room for Easter. She was gifted a Easter baskets from some of the staff and one of our fellow Rett mom's that came to visit. It has taken some getting used to that the children's hospitals bring her goodies when we stay for any length of time.

We continued getting her in her wheelchair to sit up. Slowly introduced nutrition back into her system (a long grueling process). Watched a lot of Disney Jr. and discovered she really likes the movie Strange Magic (I was surprised).

More visitors came, with more goodies and lots of love for our girl. My Rett family was in full swing along with so many others. We are so thankful for their friendship, support, and visits. It really does help make the days at the hospital pass by a bit quicker.

Art with a Heart
They came and painted pictures for Evie.
She was enthralled with this particular volunteer.

Evie and her G-Boss on Easter.

Brad "BigPoppaChive" Zahn
ChiveON!

Evie and her BFF.
These two crack me up!

The wound care team came in to remove the wound vac and change her dressing. It was time for me to see her incision. Deep breath!

Not exactly what I expected, but WOW!
Now I was responsible for keeping it covered and clean.

These wonderful ladies did a great job removing the bandages.

They took their time and used this awesome spray to make it easier.

I watched this process very closely and assisted (just a bit) so I knew what I needed to do if/when I needed to change the dressing at home. Which of course I ended having to do a couple of times because of that darn liquid diet she was on. C'est la vie!

Before we knew it, we were all set to go home. The doctors signed off on our walking papers, we got our prescriptions filled from the hospital pharmacy. *Tip: Always get them filled before you leave the hospital. Just because they have the medication prescribed, doesn't mean an outside pharmacy will.

We were finally on our way home!!! A little nervous, but I was confident we'd be ok and we have been (a little sleep deprived, but its getting better every day).

Our last nurse for this stay at Wolfson's.

I promise she was in the van.

Goodbye Wolfson's Children's Hospital! Until we meet again (cause let's be honest...we'll be back). Your nurses, assistants, therapists, managers, and support staff rocked  (we really need to have a talk about your food service though...except the Jazzman Café...those ladies are AWESOME!).

More Than I Can Handle

You might want to get comfortable for this post...it's a tad long. I have wanted to write on this topic for months, but just needed to really get my thoughts together before putting them out there for the world.

Are you comfortable? Got something to drink or nibble on (you might need it)? I'll give you a minute.

...(humming Jeopardy theme song)...

Ok...let's get on with the post...

I have my hands full (most of us do). At times I seriously doubt whether I can bear much more emotional weight on my shoulders. There always seems to be one more hurdle (quickly followed by another) or one more emotional upheaval (we've had three deaths in my immediate family this year). It is exhausting. It can be depressing. It usually just downright sucks!

But you know what sucks more...hearing, "God will never give you more than you can handle." It nearly drives me over the edge of sanity once spoken. I have to fight back my snarky retort aimed at the person who honestly believes they are offering some form of comfort (its NOT a comfort...please STOP saying it!). The theme of this phrase has even found its way into the song He Said by Group 1 Crew (I can kind of let this one slide though). This misnomer is not founded in any book in the Bible, but it is derived from a misinterpretation of an actual verse, 1 Corinthians 10:13. How in the world did 1 Corinthians 10:13 become the foundation for this offering of encouragement?!?

Let's look at the verse (New King James Version):

"No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it."(emphasis added)

This is the verse that has been used to support the misnomer of God not giving us more than we can handle. I believe there are two key words to this verse...temptation and escape.

• Temptation is defined by Merriam-Webster as:
• The act of tempting or the state of being tempted especially to evil
• Something tempting; a cause or occasion of enticement

Let's deal with this word first...

I believe people are confusing temptation with burden...they are not the same thing. The burdens and struggles I am carrying don't have anything to do with temptation (unless I'm tempted to run away from my daughter...uh...no). I am not being tempted to evil by hearing devastating test results, researching new therapies, burying a family member, or seeing Rae fall further behind developmentally (unless you count being tempted to break a few dishes in my back yard purely out of frustration to be evil). I am not dealing with temptation. I am dealing with very overwhelming emotional/spiritual battles with myself, with my faith, with my friends/family, with our doctors, labs or insurance company, and with my daughter (she is a stubborn little stinker at times).

Let's review the second word...

• Escape is defined by Merriam-Webster as:
• To get away
• To avoid threatening evil
• To get free of
• To get or stay out of the way of

This word deals primarily with leaving or avoiding a situation. It's pretty cut and dry. I can not "escape" my emotional battles (especially since some of them are internal) or avoid dealing with my daughter's medical quagmire. Escape is not an option. God delivering me of my burdens is not an escape plan. He's more like a support group leader. Offering me His strength during my weakness and helping me carry the load that I am unable to carry on my own.

So, why does this cliche bother me so deeply? Because I believe it is derived from a biblical verse that has been taken out of context and does not in any way offer real comfort. I also believe that if we never had to endure anything we could not handle then we would never need to turn to God in time of need, sorrow, struggle, or weakness. If I could "handle" any situation then I can rely solely on myself. I don't believe that is what God intended.

Paul, the same man who wrote 1 Corinthians 10:13, later wrote in 2 Corinthians 1: 8-10,

"For we do not want you to be ignorant, brethren, of our trouble which came to us in Asia: that we were burdened beyond measure, above strength, so that we despaired even of life. Yes, we had the sentence of death in ourselves, that we should not trust in ourselves, but in God who raises the dead, who delivered us from so great a death, and does deliver us; in whom we trust that He will still deliver us," (emphasis added)

Paul was at a low point in his life. He felt burdened beyond his own, earthly, ability to handle and felt his earthly life may soon be over. He recognized that there are times when the burden is more than we can handle on our own and we should trust that God will deliver us. Paul was given more than he could handle! That is a huge contrast from the verse being offered as encouragement that God will "never" give us more than we can handle. If Paul was given a burden he could not bear on his own, then why would we not be given a burden we too could not bear without God's help?

Lisa Copen, founder of Rest Ministries, writes:

"Let me tell you something that may come as a surprise. God does give us more than we can handle. Every day He may place us in the position where the pain is too much to bear. Why? Because we were never meant to do this life without Him! He gives you more than you can handle–but not how much you and He–together–can handle."

AMEN!

So, why do we continue to say this to people?

When someone is in the middle of dealing with illness, death, or just about any situation that causes doubt, pain, or depression...a common feeling is that the situation is too much for them to handle. It's swallowing them whole. It creates overwhelming doubt about their ability to overcome this life altering circumstance. Hearing, "God will never give them more than they can handle," may generate more doubt (or anger) or cause a serious fracture in their faith. They are already fighting a mental battle as Lisa shares,

"Over and over I have heard the saying, “God doesn’t give you more than you can handle.” But what about the pain. . . the grief. . . the depression. . . the darkness? It is more than we can handle. Much more. There are days that we wonder is life worth living if we have to get up every day and fight to be strong?"

Why are we adding more fuel to the fire? During the course of your life, you WILL have more than you feel you can handle. You are not designed to deal with everything on your own (even if you cling to family or friends and not faith). Here's my solution to those that wish to encourage and support those in pain... Stop saying, "God will never give you more than you can handle." It's not true. Instead, look for meaningful, scripturally based (if that's your thing) words of encouragement. Here are a few verses I have found comfort in:

"Cast your burden on the Lord and He will sustain you;

He will never allow the righteous to be moved."

Psalm 55:22

(God wants to help you carry your burden, but you must give it to Him.)

"You hear O Lord, the desire of the afflicted; you encourage them, and you listen to their cry"

Psalm 10:17

(He sees and hears you. Your pain, your fear, your sorrow. He sees and hears it all.)

"Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus."

Philippians 4:6-7

(When you feel your anxiety rising...stop, take a moment to collect yourself, and give that anxiety over to God. He will protect you. Accept the peace of mind He offers you.

I need to remember this one more often.)

"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."

Joshua 1:9

(You are NEVER alone! He is ALWAYS with you!)

*I didn't come across these verses on my own. I had some help from a friend that invited me to join her in a Bible study called Brave Honest Questions Women Ask by Angela Thomas. I highly recommend this study for those struggling with a burden(s) or thorn(s). It's great with a group, but if you don't have a group please try it on your own.