Happy New Year!

We hope that everyone reading this finds peace and joy in the coming year, even as you are likely dealing with scoliosis and a back brace, or know someone who is. We know it can be difficult, frustrating, and sometimes physically painful, but we also know that you can come through it with grace and strength.

We are almost at the one year mark in the brace and are looking toward Dancer Girl being free of it this year, hopefully by the time the warm summer weather rolls around. But, nothing is certain yet so we take it one day at a time.

My prayer for Dancer Girl this year is that she will realize how strong she is, how much she has grown, and how much her friends & family love her.

My prayer for us is that we will realize the same - that Dancer Girl is growing up and is able to handle more than any of us may think, and that she is surrounded by wonderful people. For that I am truly thankful.

My prayer for those of you reading this who are struggling with scoliosis is that you will discover your strength and that you will be surrounded by loving, understanding people who will walk with you through this journey.

And, my prayer for those of you reading this who know someone with scoliosis is that you will know how to be supportive and encouraging in the pains and the triumphs in the coming year.

Songs of Hope and Encouragement, part 2

We have added to our original list of songs that bring us hope and encouragement through their lyrics. Songs are chosen because they might be...

- a song of friendship
- a song of finding hope in hard times
- a song encouraging you to push past difficulties in life
- a song of faith
- a song of turning to God for strength

The first one is the song Dancer Girl has chosen to use for her very first competition solo this year. The rest are either recent finds or rediscoveries of old favorites...


We hope you find that some of these speak to you, offering encouragement in some small way.

"Unwritten"                                    Boyce Avenue with Diamond White  
"A Beautiful Life"                          MIKESCHAIR                            
"Home"                                          Phillip Phillips
"Do Life Big"                                 Jamie Grace         
"Firework"                                      Katy Perry
"Where I Belong"                           Jenny Simmons                           
"Glorious Unfolding"                     Steven Curtis Chapman                
"He Knows My Name"                 Francesca Batistelli                      
"You"                                             Britt Nicole                                  
"Hands of God"                              Francesca Batistelli       
"Fighter"                                         Jamie Grace                                  
"Just Be Held"                                Casting Crowns                           
"Run to Jesus"                                Francesca Batistelli                      
"I Look to You"                             Whitney Houston                          

Same old thing

Today was a follow up appointment with the back doctor.

Dancer Girl was nervous about the unknown - would he make her wear the brace more often, how much longer will she have to wear it, what if her back is getting worse...


Before the appointment we talked through the possibilities: needing to wear it more often, keep it going as is, wearing it for fewer hours each day or only at night, not needing it anymore...

In the end he told her to keep doing what she is doing.

They didn't do an x-ray because he doesn't like to do them too often for kids & teens - every other time unless something unexpected comes up.  Since the external measurements were holding steady and she is not in any additional pain and the brace still fits he opted for no x-ray today and told her to just keep wearing it as much as she can each day.

She will go back in about 4 months for the x-ray out of brace to compare it to pre-brace.  The hope is that it will be good news and she will be able to reduce her hours in the brace, eventually being able to get out of it completely within 4-5 months following that December appointment.

Time will tell, but for now she is relieved that it isn't getting worse.  So are we... relived and thankful. We will keep praying that things continue to progress as planned over the next few months.

Rough nights

Last night was hard.

For some reason Dancer Girl couldn't sleep.  She couldn't get comfortable.  She just couldn't sleep in the brace.

She has been doing so well lately but last night was frustrating & painful, and there were tears.

Lots of emotions were voiced...

         "I hate this thing"

                        "I wish I didn't have to wear it anymore"

                                                 "I wish my back was normal"

                                                                  "I wish I could have a real good night's sleep for once"


But, we were able to move on to the realization that going through this will make her a better person.

She will have a better understanding of what it is like to live with pain.

                   She can be truly empathetic and understanding as a result.

                                   She can be a better friend to others.
                             
She can learn that her friends and family love her no matter what, even when she is angry & frustrated & upset, and she can learn to give the same grace to others in return.

She can learn that others are praying for her, and she can do the same for them.

It is difficult in the midst of it all to truly grasp all these lessons but it was a good beginning for this sort of conversation.

My prayer is that the lessons learned will stick with her, but also that the rest of us will learn them and apply them too.

Troublesome chairs

Dancer Girl is back from camp.  Back from her week off from the brace.  It was probably the best week at camp she has had yet and I am so happy it worked out that way.

Putting the brace back on today was rough.

But she did it.

She had it off all week so we decided to have her wear it to church this morning.  (She has rarely had to wear it to church because we can usually take that time out of the 6 hours she can have off a day).

We ran into problems with the chairs.  They look a bit like the ones in the photo.  At first glance it would seem OK because they are padded.

               The problem was the gap at the top.

Dancer Girls' brace hits right in that gap. So when she leans back her brace gets wedged in there and pushes it into uncomfortable positions.  She was in a fair amount pain just sitting.

I eventually figured out to put my arm around her in between her back & the chair right at the point of the gap to prevent the brace from slipping in, but that was not entirely comfortable for me.  Now my arm was being squeezed by the brace and the chair!  It seemed a small thing though compared to wearing a brace so we went with it.

Still, it makes the idea of wearing the brace to church a bit more difficult unless we can figure out a solution that doesn't draw too much attention to her - maybe bring a pillow or find a different chair.

Who knew a simple chair could cause so much pain?

At camp without the Boston brace

Dancer Girl is away at camp in New Hampshire this week WITHOUT HER BRACE!

She is thrilled to get the break from it for a few days and be able to fully enjoy the camp experience.

Her back doctor said that because the correction in the brace is so significant (50%!) he thought she could go without it for the week.

The activities at camp would make it hard to wear much during the day anyway and nights are short so it would be good for her to get some real sleep if possible. That hasn't been happening consistently in the brace and camp beds are not going to make it any easier!

She was thrilled to meet her counselor who is also tall - "finally I am not taller than my counselor"! - and who understands the frustrations of being the tallest in the group.

It gets tiring to hear people exclaim "you are so tall!" everywhere you go.  Not that people mean anything negative by it, it is just an observation and it is true, but it gets tiring nonetheless.

The counselor also seemed to have an understanding of scoliosis. It wasn't clear to me at drop-off if she has dealt with it herself or is just aware of it on some level but still, this was encouraging for Dancer Girl too.

We are looking forward to hearing how camp week went when we pick her up on Saturday and are praying that her back will not cause her too much pain during her time there.

How Much Longer...

A year seems like an eternity in a Boston brace.  

Dancer Girl has made it through four months of her "about a year" time in her brace.

Four long months.

While her attitude is generally very good, even with bits of humor now and then, she also has her moments of sadness and tears.

We had one of those the other day.  Well, a couple of days in a row really.

It is hard to do this day in and day out - being physically restricted and forced to sit or stand a certain way, unable to do simple things easily.

And the heat of the summer is looming.

The tears often come at night with "how long do I have to wear this" or "I am so sick of this stupid thing" or "I wish this would all just go away"...

Me too.  

I wish I could do it for her.  Take the frustration and pain in her place.  But I can't.

And, I can't really answer her question about how much longer with any degree of certainty.  There are too many variables.  Maybe it will be a year.  Maybe less, but maybe more...

So, sometimes we cry together.  And give each other hugs.  And pray together. And figure out how to get her the most time out of her brace while still maintaining her 18 hour goal.

We are a third of the way through "about a year" and soon it will be halfway, then almost there.  I pray that the doctor is right in his estimates about the year and that Dancer Girl will know she has the support of so many who love her as she works her way through this difficult time.

She has already grown up so much as a result and it is inspiring to see her face this challenge head-on, even as there are tears.

I know there are many in this world who are going through a lot worse than Dancer Girl is facing, but when this is right now day after day it is naturally what consumes our thoughts and our family plans. We are thankful for so much that she can still do - especially dance - and know she will come out on the other side with grace.

Songs of Hope and Encouragement

One of the first things we did when our daughter was getting her Boston brace was to compile a playlist of favorite songs that provide hope and encouragement.

We listen to a lot of Christian music artists in our home so the list is mainly selected from that genre, but not entirely.  A few are simply songs of friendship and support.  We find many of the lyrics talk about finding hope in God in the midst of hardship and pain, and about finding our worth in Him rather than in the world.

Here is what we have so far:

"Gold"                                  Britt Nicole 
"Angel by your Side"           Francesca Battistelli   
"The Sun Will Rise"            Kelly Clarkson
"Worn"                                Tenth Avenue North
"You're Not Alone"             Meredith Andrews
"Let the Waters Rise"          MIKESCHAIR
"Beautiful, Beautiful"          Francesca Battistelli
"Come to Me"                      Jamie Grace 
"The Sun is Rising"             Britt Nicole
"Always Enough"                Casting Crowns
"Sovereign"                         Chris Tomlin
"Be Still and Know"            Steven Curtis Chapman
"Not Alone"                         Jamie Grace
"Here"                                  Kari Jobe   
"He is With Us"                   Love & the Outcome
"Blue Sky"                           Francesca Battistelli
"Hold on to Jesus"               Steven Curtis Chapman
"By Your Side"                   Tenth Avenue North
"Lift Me Up"                       The Afters

I am sure we will be adding more to this playlist - we are open to suggestions for more songs to add to the list!