vision

When I was playing soccer here at UT, we had fitness every Tuesday. We called it 'hell day'. And there was always this tremendous dread you felt about Tuesday. The minute Tuesday was over one week, you would already be dreading the coming Tuesday. Its kinda funny looking back on it now ... how worked up we would get about something so small, but we did. And the thing that always pushed us through the pain was the vision of winning. Knowing that the pain of our 'hell day' was for a purpose. That the pain we had to endure was for a reason ... and we all knew what that reason was. We wanted to win, and we would do anything to achieve that goal.

So much of life I can relate back to my time playing and coaching soccer. I have always loved good quotes and sayings, and there is one that I always went back to on those Tuesdays that I dreaded as a player ...

'Vision gives purpose to pain.'

And as we have been here in Cincinatti this week, that quote has been stuck in my head. Vision is so important. Knowing what the pain is for, helps you endure. I do not think there is a harder thing in this world than watching your children in pain. It is the absolute worst, most helpless feeling that I can think of. And that has been the hardest part of this trip. We know why we are here, and we have to remind ourselves so many times ...

This is worth it. This is worth it for her life, for her future, for her independence ... this, this right here is worth it.

Her pain level the past couple days has really increased, and we have to hold her through this stuff for 45 mins at a time while she screams and begs us to stop, and it absolutely sucks. Worst.Thing.Ever.
But there is a vision for her life. And this vision is full of FREEDOM. And there is always a price to pay for freedom, and its not always easy. This isn't easy, but this is worth it.

The thing about those Tuesday 'hell days' that I remember most, is that those were the days where our team became a family. Those are the days where we were really becoming unified as a group. Its in those moments of pain and weakness and vulnerability that we became stronger. We grew so much because of those 'hell days' that we walked through together...

And I can see that in our family now. I can see how everything we have walked through with Carsyn the past 3 1/2 yrs are tools that God has been using to create an unshakeable strength, resolve and love in our family. I can see how God truly does make everything beautiful - even the stuff that we wish we didn't have to go through - He even takes that stuff and uses it to create something more beautiful than we could have ever dreamed. And right now, on this trip ... this trip that has felt oh so very hard at times, I see Gods hand in it all. I see Him taking the hard stuff and making it beautiful. I see Him strengthening our family and drawing us closer together than we ever have been. And the vision of Carsyns future, of our familys future, is so beautiful and it we have purpose for this pain, and it is good.

the joy of celebration

One of the things that Spina Bifida has taught us, is that life is meant to be celebrated. It is so easy to get so caught up in the busyness of life that you forget to celebrate the little things. I believe God wants us to live a lifestyle of joy and celebration. I think busyness, and the whole glorification of busy thing, has created a generation of people that have forgotten the beauty of simplicity and the joy of celebration. This is a gift Spina Bifida has given us ... the gift of slowing down and recognizing the gift to be had in the simplest things ... the joy that is ours in the seemingly insignificant, if only we have eyes to see.

Riley started walking when she was 9 months ... I remember that. But I don't remember the first time she sat up, or lifted her head up on her own, or the first time she pulled up on her knees. I don't remember the first time Riley put her weight on her legs or the first time she asked to sit on the potty. I remember the day she started walking, the big milestone, and after that, everything is a blur.

With Carsyn, I remember every victory along the way. I have noticed her every first time. And not just noticed it, but celebrated it. I cried the first time I walked in her room and she was on her knees in her crib. I remember the exact spot I was sitting when she pulled herself up on her knees on a pink stool in our living room. I remember the first time she put her weight on her legs. These memories are etched in my mind for the rest of my life.

We miss so many moments because we take them for granted or are too busy to stop and let them penetrate our heart. We miss so many memories because we are too busy to slow down and see them for what they are. Life is full of opportunities to celebrate. There are so many moments of joy to be had. And one thing we have learned over the past 3 yrs is that sometimes the seemingly simplest things can produce the greatest joy. And when we lose the awareness of life's simplest victories, we can lose the joy of celebration. When we save up our celebrations for the 'big' stuff, we can miss so much of this beautiful life that God has blessed us with ... our awareness of the littlest things, increases our joy in all things.

While its not always easy, we are learning to reset priorities and slow down. To take in the moments and celebrate even the smallest victories. We are learning what a lifestyle of celebration, of joy, of thankfulness looks like ... we are starting to see more clearly.

I don't remember the joy in Rileys eyes the first time she used the bathroom like a 'big girl', but you can bet I will never forget the joy in Carsyns.

Friday in cinci...

We are tired ... oh so tired. The past 3 days have been exhausting in every way. But Carsyn has been amazing ... I mean really, i can't even explain how amazing she has been through everything. Giving doctors knuckles and introducing herself when she meets them, making friends with strangers, cackling laughing in a way that makes everyone who hears her laugh ... in so many ways, she has shown the strength and beauty of her spirit. I am so proud of her and her go with the flow attitude through all that she has had to endure these 3 days.

Today, when I was driving, I was praying and asking God for strength and energy and patience as we continue to walk this thing out. I was thinking about the past fews days and feeling so incredibly exhausted. The more I thought about how exhausting things had been, the more exhausted i became. The more i allowed myself to wonder why this sweet angel has to go through all of this stuff and how 'unfair' that feels, the more frustrated and emotional i got .... 

And as all these thoughts and emotions are running through my head and heart, I hear this verse deep in my spirit:

'I do not consider myself to have embraced it yet. But this one thing I do: Forgetting what lies behind, and straining forward to what lies ahead, I keep pursuing the goal ...' Phil 3:13,14

And in that moment, I felt a new sense of focus and strength come over me. I felt God reminding me to forget what is behind ... to keep my eyes on the prize and my focus on Him. To be intentional about dwelling on His goodness. To choose thankfulness in a time where, quite frankly, it was feeling hard to be thankful. I have a choice everyday ... we all do ... to choose to stay focused on the prize, to look ahead and draw strength from where we are going, or to allow the past to drain us. We have a choice everyday to be thankful for what we have, or frustrated that we don't have what we want. We are learning to choose thankfulness and to focus on the prize .... and it is good. We are continuing to discover first hand how God has this beautiful way of making all the hard stuff good ... really, oh so good. 

Dwelling in His Goodness and choosing thankfulness every step of the way ... we are learning so much. So grateful for this trip and the way He is strengthening and stretching me and our family. 

CINCI TRIP

Wow - alot has happened since I last updated this blog! Didn't realize it had been so long ...

But now, here we are ... October 9, 2013 and our sweet Carsyn Grace is 3 yrs old and we are currently in Cincinatti for 10 days at the spina bifida clinic up here. We have been totally blown away by the love and support we have received as we prepared to come up for this trip by friends and family ... i mean really - totally blown away. We both feel so blessed to be surrounded by such amazing people that love our family and our carsyn grace so well.

Its been difficult to respond to texts or return calls the past couple days, and we know that most people don't even really know why we are here or what we are doing here, so we thought the most efficient way to update is to tell people to check the blog ... so here it is :)

There are so many different things that are affected by spina bifida. The most obvious to people is the orthopedic side of things, as they see the braces or the wheelchair or walker or whatever. And that is definitely a big part of it, but there are other areas that we have to tackle on this journey as well. Other less obvious things that you wouldn't know we had to deal with unless you knew about spina bifida or you knew our situation. And one of those is the area of bladder/bowel management. And thats the reason for this trip now.

The goal is to get her out of diapers and doing all things bladder/bowel on her own ... and we want to to get her doing that without surgical intervention. We heard about this bladder/bowel clinic here in cinci close to a year ago from a great friend of ours whose daughter is a hero of ours and is on a similar journey as Carsyn.  Up until we heard about this clinic in Cinci, we assumed she would be having a couple major surgeries in the coming year to get her our of diapers. But, we found out that the goal here at this clinic is to get them independent WITHOUT surgery!!!! So we started doing the necessary paperwork and things to get her in. After alot of back and forths, and several months, we got into this bladder/bowel program and now, here we are!

Carsyn is getting every test possible performed on her while here, and they are thoroughly checking out all of her insides .... clearly i am lacking on the terminology here ... also, my mind is mush and very discombobulated at the moment. But, they are getting her checked completely and in every way possible, and we are hoping to get her started on a management program that is going to ultimately get her being independent without any sort of surgical intervention. This is basically the start of this journey. There isn't a 'cure' for this, and we aren't going to go home in 10 days with some magic potion thats going to get everything working ... its a process ... its a trial and error type thing. Frustratins and breakthroughs ... ebbs and flows ... a process getting this thing going right, but thats what life is - its all a process. A series of ups and downs, figuring out what works and what doesn't ... and here we are, ready to do the work, ready to dig in, ready to do absolutely anything for this beautiful girl of ours.

Today was day 1 ... it was long, but she was absolutely amazing. She had the most wonderful attitude through everything. Jer and I could not possibly be more proud of this kid ... she is without a doubt, the strongest, most resilient person i have ever known.

So, we have been asked for specifics with prayer requests .... pray for peace ... peace for carsyn and peace for Jer and I. There is nothing in the world more difficult than seeing your child go through stuff that just sucks to have to go through ... the whole doctor/hospital world is just not a fun one to be in with your kid ...pray for peace for all of us as we walk this thing out. Peace and patience.

This is one of those blog entries that is in no way eloquent or thought out in any way. And I know i misspelled a hundred words, which normally would drive me crazy, but tonight, i am so fine with writing misspelled words and not making total sense :)

THANK YOU, THANK YOU, THANK YOU for all the texts, messages, love, support and prayers ... it has touched our hearts in the biggest way. I am planning to update this blog a couple more times while we are here, but will post it on the good ole FB when i do in case you want to follow along :)

'And the peace of God, which surpasses all understanding, will guard your hearts and mnds in Christ Jesus.' Phil 4:7

the simple joy of holding hands ...

It is easy to get so caught up in life that you fail to recognize the joy of the simple things.  The joy found in the simplicity of love.   My short story today comes from this place of being aware of the abundant joy found in what is oh so common ... holding hands ~

Riley was on the couch, glued to her favorite show when we first put on Carsyns new braces at home.  Carsyn wanted to walk ... Ri had never seen Carsyn in these new braces or seen what Carsyn can do in them.  We put the braces on, and Carsyn started to walk.  Without a word from Jer or I, Ri immediately jumped off the couch and ran over to Carsyn and excitedly said ... 

 'Carsy - you want to hold hands and walk with me?!?!?!!?' 

And for a couple seconds I think I forgot to breath ... It had never even occurred to me that Riley would have a longing inside of her to walk, hand in hand, with her baby sister.  And in that moment, I remembered all these different moments ... a slideshow of snapshots in my memory ... of Riley holding hands and walking with friends, cousins,  little brothers and sisters of her friends, even little kids she didn't even know ... and it had never occurred to me that walking and holding hands with her sister would be such a big deal to her.  I don't know why I never thought about it, but I just never did.  And in that moment, I was in awe of my first born ... her compassion, her heart, her love that is so so big ... the way she LOVES her sister is seriously SO BIG.  They have the most amazing and special bond.  And seeing my girls standing up together, holding hands, and walking ... well, it's price-lesss ... no amount of money in the world could buy that joy.  It simply took my breath away.

 Sometimes the littlest things bring the most joy.  And sometimes, when you get caught up in the bigness and busyness of life, it can be easy to forget the simple joy that comes from these little things ... like the pure joy found in just going on a walk and holding hands with the one you love ... 

a little walking and some bball :)

Carsyn is learning to step one leg at a time (right, left, right, left) with these braces.  We shift her body (an exaggerated shift), and then she kicks the opposite leg forward.  Its so cool.  The purpose of these braces is to teach her and let her feel what walking is all about, and to strengthen the muscles she will need to walk on her own.  As she gets stronger, the braces will get shorter, until one day, they are no more :) Here is a short video of her scoring her first basket standing up :)

HAPPY BIRTHDAY

We just celebrated Carsyns 2nd birthday.  I am certain that for the rest of my life, with every birthday Carsyn has, I will go through a broad spectrum of emotion as I reflect on where she has been, where she is and where she is going.  Words could never express the feelings and emotions that I am flooded with when I think about my Carsyn Grace.  

I think our greatest blessings are often birthed in pain.  The hard stuff we walk through paves the way for joy. There have been days over the past 2 1/2 yrs where I literally felt as if I could not breathe.  I can remember distinct moments where I felt like I did not know if I could even exist another second ... I don't know if that makes sense or not, but it is the best way to describe the depth of pain/emotion I have felt ... I literally did not know how I would consciously make it through another second at times.  I don't know if there is any pain worse than seeing your child hurting/suffering.  I don't know if there is anything more unbearable than hearing a doctor give you bad news about your child.  If there is something worse, I have not experienced it ... because the hardest and most painful moments of my life have come as I have experienced these things with Carsyn.

But, at the same time, I have felt no greater joy than when I have walked in to a room and have seen Riley with her hands on Carsyns legs praying for them to be strengthened and thanking God for her sister.  And nothing in this natural world has filled my heart more than when I have watched Riley cheering for Carsyn and encouraging her and celebrating her every small victory, telling her 'Carsyn your legs are so strong, I know you can walk, I know you can...'.  Nothing has caused my cheeks to hurt from smiling as much as watching Carsyn smile with pride as she stands up on her own.  I look at this beautiful girl and I am overwhelmed with joy... She touches my heart in a way no one ever has before or ever will again ... 

Carsyns life has changed mine.  It has changed our marriage.  It has changed our family.  The lens in which we view life is different than it once was.  Its more beautiful.  Its more joyful.  There is more thanksgiving, gratitude and love.  Life is more full and more simple all at the same time.  Our family is closer than I ever knew we could be.  It just can't be explained with words, but its something that only God could do.  

'You have turned my mourning into joyful dancing.  You have taken away my clothes of mourning and clothed me with JOY!'

Psalm 30:11

 Standing up in her new walking braces without anyone holding on to her ... she's so proud of herself :)