From the Pediatric Intensive Care Unit

Today. Today was the day I have dreaded for months. Today was the day I would leave my precious 16-year-old son in an operating room knowing they were going to cut his back open when I left.

I am not superwoman. Today was hard. I was a mess. Today was hard. I was an emotional basket-case. And yet, I did not shed one tear until he was sleeping under the influence of the lovely gas mask, and then I fell apart. Briefly.

Because the thing about motherhood that I have realized over the years, it is not about me. I have moaned, worried, fretted and written one or ten blogs about the stress of this scoliosis surgery. But all along I knew that today was a day to pull myself up by my bootstraps and help him get through it -- and help my other amazing kids get through. Today was about letting the tears fall and then getting about the business of helping my son.

Not by my strength. But through the multitude of arrow prayers I shot up today...and more importantly through the amazing prayer support Benjamin has received from one side of America to the other -- from Ireland to Argentina -- the messages flooded my Facebook and bathed my heart and soul.

And our beloved staff at Phoenix Children's Hospital -- oh my goodness. We walked in the door and were immediately met by support, hugs, love and the promise of prayers.

Before and after.

Tonight, as I type and the nurse works on changing one of Benjamin's dressings, I am humbled by your support. Humbled by the blessing of your prayers and love.

And honestly, humbled by the strength of my son. He has been witty and charming while under the influence of all these painkillers.  (He just overheard the nurses welcome me to the "PCH Hotel" as I settled in for the night...looking completely asleep, he smiled and said, "It's a five-star resort!") He has been polite and kind.

Tomorrow may be another story -- for tomorrow the work of learning how to function with this new straight, inflexible back will begin. But for tonight, I am resting in the blessing of today. And asking you shamelessly, to keep praying as you have been for this amazing kiddo.

You are a blessing.

A visit from the most amazing siblings!

Confessions of a blue-nosed-do-gooder.

My 20-something-year-old self was editor of my college paper. My days of managing the content of the newspaper at Mississippi State University seem very long ago -- well, not just seem they were very long ago. And yet, I remember a letter to the editor lambasting me word for word. Oh, I can not remember the entire letter, but I remember the meat of it. The writer called me a blue-nosed-do-gooder.

I remember looking up the term for clarity back then -- I understood the gist, but wondered what the blue-nose part actually meant. According to Mr. Webster it is a term for someone that advocates a rigorous moral code. Synonyms include goody-goody, nice nelly and prude. Letter writer probably was not far off the mark.

And this week, I have been pondering those words -- not in a beat-me-down sort of way but rather in a contemplative, is-that-how-my-writing-looks sort of way. Earlier in the week, I posted about the wealthy hiring special needs people to accompany them to Walt Disney World so that they do not have to wait in line. I was seething when I wrote. I ranted in my head for hours before I started typing. And yet, repeatedly after reading my post, people kept telling me that I was reserved, not harsh, held my tongue. And so I went back and read the post and they were right. What happened between my fingers typing and the wrath in my head: I didn't want to hurt anyone's feelings. I didn't want anyone to read my writing and walk away feeling unloved. I wanted people to understand how wrong I think such a practice is, but I also feel strongly about never being a hater.

Sigh. I am a blue-nosed-do-gooder. Still.

I read blogs from some courageous women who speak boldly about their opinions and are heralded for their strong words regardless of offense. I admire them. Yesterday, I was reading one such post by Rachel Held Evans regarding how abusive the theology of "deserved" tragedy is. She was discussing the horrific tornadoes in Oklahoma and how some pastors will erroneously explain this devastation as God's judgement on sin. I applauded her points, nodded in agreement and was fairly shouting "amen".

When Benjamin was asked to share his story last summer in Argentina, he quoted from John 9 where the disciples ask Jesus why a man was born blind: "Who sinned, this man or his parents that he was born blind?"

Praise the Lord, that Jesus answered: "It was not that this man sinned, or his parents, but that the works of God might be displayed in him." (John 9: 3)

But even while I am praising God for the ability to show his works in our family, I understand those who try to explain tragedies away. I get it. See, if we can "blame" a tragedy on sin, or wrong-doing then we take away the randomness of the horror. Do you follow me? We embrace the "well, I follow the rules, and live a morally upright life (blue-nosed, if you will), therefore bad things will not happen to me."

And oh, my friends, that doctrine sells. Doesn't it? A feel-good gospel promising health and safety for you and your loved ones? The ability to avert tragedies with your do-gooding. Who wouldn't sign up?

But here is the truth: that theology only works until it doesn't. Profound, right? Please hear me, that sort of feel-good gospel might offer you a false sense of comfort and safety for a few years as you walk through life with healthy children, lovely home and a generous income.

But what happens when the economy tanks? Or your child gets sick? Or the storm comes? Where is your faith when you can no longer trust in your ability to do what is right and keep everyone safe? 

Because you can not.

Those sweet babies in Oklahoma did not deserve to have that tornado hit their school. Neither they nor their parents sinned and caused that. No way. Now how.

There is no easy answer to tragedy. There is no wrap-it-up-and-make-everyone-feel-better answer to horrible things. They happen. We hurt. And the question that remains is simply this: Will you trust God still?

And here is my confession: 20-something-year-old do-gooder really thought she could avert bad things by being good. And then I began to live life.

When my amazing, wonderful Daddy was diagnosed with cancer, my world was shaken. Seriously, I could not do enough good to save him. I had to decide if I still believed. Would I still praise God in the storm? I chose yes. Yes.

When I delivered triplets far too early, I had to decide again. Would I trust God? Would I still praise Him in the heartache and fear? I chose yes.

When my boys were diagnosed with Cerebral Palsy, oh you know the drill, I had to choose. I had to decide between my faith in an awesome God and my fear. I chose to trust God to carry us through. And to beg -- beg -- Him to be glorified through my family.

This week my Benjamin will have spine surgery to fix this curve that is affecting his life. And though I like to think life has deepened my faith, and given me a steady walk with the Lord, I confess that I still want to scream, "Enough. Enough lessons. Enough testing. Enough showing me that I can not be 'good enough' to avert crisis, heartache and pain for my family."

It would be so much easier to believe that horrible things are not random. Wouldn't it be so comforting if bad things only happened to bad people? But that is not the case. Bad things happen. And I believe that just as Jesus wept when his friend died, he weeps for our pain, our suffering.

He is a God who loves. A God who promises to comfort the hurting and care for the suffering. He interprets our groanings when our words fail. He bridged the gap for us between our own inadequacies (we simply can not be blue-nosed enough to earn a place in heaven!) and Heaven. He is the only way to the Father.

And I am on my knees this week, asking Jesus for mercy for my boy. Asking for protection for his health; for success in the surgery; for discernment and wisdom for his surgeons; and for peace for his siblings who love him so. Will you pray with us? Oh please, will you pray?

Surgery is early on Friday, May 24. Benjamin will have a spinal fusion and Dr. Greg White and Dr. Lee Segal will perform the surgery. He will be in the intensive care unit for a few days after surgery to closely monitor everything.

This boy did nothing to deserve having Cerebral Palsy. He did nothing to deserve having scoliosis. He did nothing to deserve this surgery and lengthy recovery. Rather, all of this happened so that God could be glorified in the wonder that is my Benjamin. So that God could be praised through the prayerful hearts of our loved ones.

You are a blessing to us. Such a blessing.

On waiting in line...

There should be all manner of disclaimers on this blog post. I should start by saying my amazing Benjamin is having major surgery this week and my emotions are all over the map. You should know that.

I should also say that the timing of the article causing me to post what will undoubtedly be a rant came just as we returned from a wonderful (wonderful, amazing, precious) trip to Disneyland where we did what our family HAS to do and so I am tender about this particular topic.

And then I should warn you once more. But really, I hope you'll take the time to read what I have to say. Because the bottom line should be that we ALL care about this. Really. (Besides, I am including some really cute pictures and you don't want to miss those!)

So, have you seen this article? Please click now. Take a moment. Read it. Soak in what is happening here. And then forgive me for asking you to read it. Because if you are like me, your blood pressure has escalated to a very unhappy number right now. I am seriously so angry. So mad. So...oh so sad that anyone would even think to do this that my heart physically hurts.

Really? "Hiring" disabled people to help you bypass lines at Disney World? That is an all new level of decadence for this country. An all new level of exploitation. An all new level of "what in the world made you think to do that??"

We frequent both Disney parks -- Disneyland (in our backyard so to speak) and Walt Disney World -- for many reasons but the main one IS in fact because of our two amazing boys who have Cerebral Palsy. 

We go because at Disney our entire family can enjoy the attractions TOGETHER. No one has to sit and watch. That is a big deal. A huge deal, my friends. Because so often in life, the world is completely UN-accessible for Benjamin and even for Mason. We realized early in their lives that Disney works for accessibility and we embraced a place where our family can have intense quality time to laugh, make memories and have a blast!

But let me tell you that it is not easy. Not at all.

So what does a day at the park look like for a REAL family with disabilities? Can I share?

We get up early. Very early. Not because we are chomping at the bit to get to the park (Ok, Benjamin IS chomping....) but because if we DON'T, we will not be able to navigate the crowds with two wheelchairs. It just becomes too much. We start early and when the crowds peak after lunch, we head to our hotel for a rest break.

So we are waiting in line to get in when the gates open. Always. And guess what, two wheelchairs does not bypass that line. Not at all.

And when the gates do open, there is a mad crush of people. A mad rush of those people trying to get to their favorite rides. Benjamin is careful not to run anyone over. He works to keep up with his Dad pushing Mason in his manual chair while working (and yes I mean WORKing) to avoid hitting the people who jump in front of him in their rush. I follow him, anxious to make sure no one is lost in the crowd and trying to keep my husband in my line of sight. All the while, urging my dear Benjamin to keep driving, reminding him that he has as much right to move in the crowd as those walking because his impulse is to stop when people jump over him. All the while, working for a break in the crowd to find a ramp to access the sidewalk. All the while, trying to keep my "happy", my "joy", my sense of fun.

Let me assure you that I have never, not even once, thought "Boy, am I glad we get to fight this crowd with TWO wheelchairs so that we can bypass the lines. WooHoo." (Did I warn you there might be sarcasm?)

Love the newer rides that have vehicles where Benjamin can load IN HIS CHAIR! But guess what, we waited in line for this just like everyone else. Even longer because we had to wait for the ONE special vehicle to get loaded on the track!

And while we do miss some lines -- we MISS some lines. Meaning, my Benjamin enjoys the thrill, but what he really loves is the story. He misses a ton of story in the line for the Indiana Jones ride because it is simply not accessible. He misses the story in the Star Tours line because of the same reason. We have actually asked to walk through those lines as far as we can before stairs hinder us, just so he can experience them.

Because this was HIS trip, Benjamin picked Oswald shirts for us to wear -- Walt's first character. The rights for Oswald were stolen from Walt and only recently did Disney re-acquire the rights to Oswald! My boy LOVES the history!

And not to throw a big old pity party, but honestly, even though Disney does a beautiful job with accessibility, some rides are still just so hard for Benjamin. Dumbo is one. The load is a challenge, his knees can get stuck going in. He opted to ride it this trip because it is Mom's favorite and he wanted to do that for me, but he often opts to watch. Such is his nature. My amazing amazing Benjamin.

So maybe, what I am most angry about, is that my boys would opt to stand in line after line after line, if it was possible for them. But they can not.

But somebody -- obviously more than one somebody if it warranted an article and investigation -- thinks that having able-bodied children and having the means to travel at will are not enough blessings. They must also manufacture a way to bypass any attempt to delay their pleasure-seeking. Oh the lessons they are teaching their children. I am disgusted. I am appalled. I am so sad.

Dad was trying to get Benjamin to smile and completely cracked Merida up...

My only hope is that their behavior might mean someone with a disability was able to enjoy Disney when perhaps they otherwise would not have had the chance. That is my hope.

Please do not misunderstand, I LOVE our trips to Disney. But I assure you that my love for these trips is not because occasionally we miss a few lines. No. Not at all. My love of Disney is that IN SPITE of all the work these trips require, we laugh a lot. We work together as a family. We make memories together as a family. 

And guess what? A lot of those memories are made waiting in lines! Shame on these families...they are missing out. They are bypassing memory-making moments with their families and emphasizing all the wrong things. All the wrong things.

So thankful for my family. So blessed to be the Mom to Benjamin, Mason, Claire and Cate. So blessed to have children who know waiting for our reward is often half the fun!