Still trying to wrap my head around what happened last Monday… it was a night we’ll always remember, that’s for sure!

Over the past couple of years, Claire has developed quite the opinion about the Jonas Brothers. When we recently heard they were coming into town, Sean and I hoped we’d be able to bring her to their concert. The day the tickets went on sale, we scooped up some seats before they were sold out. Our tickets were facing the back of the stage, and we knew this upon purchasing them. We were somewhat limited in our choices because the seats needed to be wheelchair accessible however we were ecstatic there were still some available and we were so excited this was happening!

 Leading up to the concert, I kept praying “God, please help her be able to see everything well” because with the set up and being behind the stage, I wasn’t sure how it would all work out. 

When we arrived, there were some cords in front of us, and we weren’t able to see the jumbotron (which is nice for those close-up views, especially for Claire if you know what I mean!)   I was a little nervous but kept praying “Lord, please help her be able to see, take it all in, and give her a great night.”  I also thanked him for giving us the opportunity to come – we never know with her until the last minute if things will actually work out or not (if she gets sick, etc). 

The concert started and omgish – all the chills. We’ve never seen them before, and this was such a treat. They made sure to walk around and sing to the people who were facing the back of the stage, and we couldn’t believe it.  The one time in particular, Joe Jonas walked around and when he did so, he paused when looking up in our direction.  He kind of did a double take and stood there singing for a few seconds.  Then he pointed in our direction, and it almost seemed like he was pointing up at Claire.  I was able to capture that moment with pictures – and woah – how cool!    

Then, about a song or two later, and completely out of the blue, I get tapped on the shoulder. There was a guy wearing a lanyard and he said “Hi, excuse me. My name is Dave and I’m the tour director for the Jonas Brothers.  Joe told me he saw you guys up here and wanted to know if you wanted seats with a better view.”  I was in disbelief. 

Next thing we knew, he was walking us through backstage and he asked us what size shirt Claire wore. He gave Claire a Jonas Brothers bag that was filled with t-shirts, Kevin’s guitar picks, and a program that was signed from all 3 of them!!  He then led us through the curtain from backstage onto the floor. When on the floor, he brought us to two open folding chairs (one for Sean, one for me) with a space in between for Claire/ her wheelchair.  And….

They. Were. Front. Row!!!!!

He asked if this would be okay?  I looked at him – my eyes were bugging out of my head I’m pretty sure, lol, and I said “UM YES!! Thank you SOOO much!!!!” 

We looked up at our new view and Sean and I were absolutely speechless. None of this seemed real.  To see Claire’s expressions – to see her take it all in – had us choked up several times throughout the night. 

During one of the songs, Joe was singing and looked over at us. He saw we relocated (thanks to him!)  and I mouthed “thank you!!!!” He responded with a little head nod, then looked at Claire and waved.  Yes, we melted! hahaha ~ but seriously… we pretty much did! 🙂

At another point, Kevin leaned down and handed the security guy another pick – he pointed at Claire as he kept playing, and the guy gave it to us.  It was the sweetest!

At intermission, Dave the tour director came back and told Claire that Nick wanted her to have his two guitar picks. Now, Claire has a difficult time controlling her hands, however she was definitely locked in like I’ve never seen before and was trying to get ahold of those herself! 

Seeing them all perform right in front of us was just crazy. I mean – ALL of this – I just could NOT wrap my head around what was happening.  It was all so random and sporadic… and just incredible. Here are some additional moments:

As I reflect on everything, I’m in awe and filled with gratitude for so many reasons. First – to the Jonas Brothers, THANK YOU!

God not only answered our original prayers that night, but he also took it to a whole new level for Claire and this is all I could think about.

God knew why we wanted to bring her to this specific concert and how much the Jonas Brothers meant to us.  Almost two years ago to the day, Claire was in the hospital recovering from a major spinal fusion surgery.  She had severe complications post op, which included a sudden code blue, total respiratory failure, a ventilator (which ended up taking away her ability to eat by mouth for quite a while), kidney issues, etc… 

She was in a coma for over two weeks, and we didn’t know the cause of it at the time.  We also didn’t know if she’d wake up from it and come back to us.  If she woke up, we weren’t sure if she’d be the same – we had no idea what to expect.  Because of the coma (and everything her body went through in general) she lost all previous skills she worked so hard to gain and keep, week after week for years leading up to this point.  (Her original loss of skills occurred when she was a toddler and was diagnosed with Rett Syndrome)

Everything about this time was hard, but the thing that was extra difficult was the fact that she lost skills not only once but twice in her life now, and she knew it.  She is cognitively age appropriate and understands everything. Our hearts absolutely broke for her all over again because we knew what she was going through physically, but also mentally and emotionally.

The hardest thing with Rett is being a prisoner in your own body. You know you want to do something, but your body won’t allow it. She’s worked so hard over the years to get where she was at before the surgery, and now we were back to not knowing (again) what would happen from here. We were back at square one.

About a month after her surgery, Claire qualified for an intense in-hospital rehab therapy program and could start it once she was strong enough to be discharged from the PICU and relocate to the step-down unit.  She began this program and worked several hours each day, doing physical, occupational and speech therapy. This lasted for a couple of weeks.  She then continued to work hard months after we were discharged from the hospital where she went to outpatient therapy while working on skills at home. 

Claire missed ½ her school year and this was especially tough because she missed socializing with friends and being with kids her age.

It was through her initial in-hospital speech therapy sessions however, where she told us she loved the Jonas Brothers. We always listened to the Jonas Brothers, but she never specifically made a comment like this about anyone, until now. This was somewhat out of the blue, however she was insistent on making her thoughts known about this.  Claire is nonverbal but communicates through an eye gaze machine as well as through “yes/no” cards and other means. This speech therapist was incredible with her, and it was through these sessions that we discovered the (then) 11-year-old Claire was developing quite the band crush! 

Once Claire transitioned to outpatient therapy, she was paired with another amazing speech therapist who she still sees today. And this therapist – well, she loves the Jonas Brothers as well, so their discussions over time have not only been incredibly engaging for Claire, but also so much fun! (And… who doesn’t love some girl talk?)  

When Claire finally went back to school, her school team brought her to a whole new level academically when they’d use the Jonas Brothers as content for discussions, etc.  Thanks to her school team as well as the continued guidance/support from Rett University (the online platform that helps teach those working with Claire how she learns best) Claire went from writing a few words about them to full blown sentences – which then led to a paragraph!  Unless you truly understand Rett Syndrome, you don’t know how difficult of a task this is to do and all the reasons why. Getting her to read and write was always a dream we had for her – and here she was… now writing full paragraphs!

These moments – using the Jonas Brothers as motivation for her to do her therapy and schoolwork – not only helped bring her spark and spunk back, but it also brought that crazy bright and beautiful smile of hers back.  She eventually returned to baseline, but not only that, has been excelling in so many more ways since. 

What the Jonas Brothers did last week meant a lot more to us than they’ll ever know. They gave her the most magical night a girl could ever wish for!   They also did it in such a way that was very special yet discreet and their actions were so genuine, kind and extremely generous.

Our journey with Rett the past twelve years (she’s now 13) has been filled with so many ups and downs. Our seasons, weeks and even days are inconsistent and not easy, however that’s to be expected with this condition.

The one thing that’s always been consistent though, has been God and all of the ways he’s been with us through everything. He knows how much we absolutely hate Rett Syndrome. He knows what our original plans and dreams were for our family of five before Rett entered the picture. He knows and has seen everything since…

He knew this would be, before Sean and I were created, and well as before the kids. He’s always known this would be our path and there’s a reason for it. We may not understand things at times, but regardless, I can say with 1000% certainty – I trust in Him and in his plans, and as the years go on, this becomes more and more clear to me.

One of my favorite verses from the Bible is: “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a future.”  -Jeremiah 29:11.   This verse is written on one of our walls at home and it’s brought so much peace to me over the years. I truly believe it.

God has seen us at the darkest of days and he’s carried us through them. He’s seen us celebrate victories big and small and we know they were all because of him. He has always provided, whether that was by giving us strength to get us through long hospital stays or just a little extra push to get through the extra tiring days.    

He’s provided by giving us wisdom, guidance and support to help us fight some of the battles we’ve needed to fight on her behalf. We’ve seen him put people in her life (and ours) for a reason and also take them away for a reason – all with her (and our) best interests in mind.

He’s always known what’s needed and why, and most importantly when…  He’s never allowed us to walk one day in this Rett journey alone – he’s always been right next to us.

We are thankful to our family and friends and their incredible support over the years! We’ve seen the kindness of strangers in so many different forms and places – most recently this concert. We’ve seen God work through others to bless us in ways we could never imagine. He’s the source behind all this goodness… He orchestrates it all, and we are so grateful for all of this, in every way.

Living with Rett isn’t easy, but it’s given us the blessing to have a front row seat (no pun intended!) to witness and experience the kindness of others.   

We thank you all, always. We thank you, God.

And so does Claire!