support and awareness

One of the things I have never been good at is asking for help. My independence has always been both a strength and a weakness. So the idea of fundraising for anything is not fun for me. I know that everyone has certain things that they feel led to give to, and I think it can be easy to feel guilty for not giving to a friend or family member when they ask. And thats something I always want to stay away from. Raising money for the Walk N Roll has felt a bit uncomfortable to me because of that very reason. For Jeremy and I, money is our least motivating factor as we attempt to raise support and awareness for spina bifida. I know it's important. We need more resources in this community. We need more funds for research. I want to raise alot of money for that reason. I hate asking for it, but I want it. I want more done for those who live with spina bifida. More resources, more help, more possibilities. It has come a long way in the last couple of decades, but there is so much further to go. Money is essential for progress. And it is so needed in our spina bifida community. But, really, when I think of raising awareness for spina bifida, the thing that drives me more than anything right now, is raising awareness of the fact that a disability does not define a person. Carsyn isn't defined by her legs any more than you are defined by the shoes you wear. Looks can be so deceiving because the worlds perception of beauty can be so skewed. I want you to be aware of who Carsyn is, and not just what she looks like. I want you to know her. I want you to know that she is just like any other 5 year old. And I want my generation to raise a generation of kids who know that a friend doesn't have to look like you do in order to be a friend. That a disability is not who a person is, it doesn't define anyone. I'm imagining a world where a kid in a wheelchair is included just the same as a kid walking on their own 2 feet. I'm imagining it, I'm believing it, I'm teaching it to my own kids, and I'm wanting to make people aware of all of this. A persons heart always trumps a persons physical body. A persons heart, a persons spirit ... thats the stuff. Thats what matters. The other aspect of this that is so important for us, is that we want to encourage people to support special needs kids in general. An encouraging word breathes oxygen to the soul for anyone. For a kid with special needs (also for a parent of a kid with special needs), encouragement is so critical. Especially when they are going through difficult patches. What a difference it makes for a kid that has encouragement and support from people both inside and outside of their home. I am telling you, I have witnessed it first hand this past year with all that Carsyn has been through. The support and love Carsyn and our family have received has literally changed us. Its made us more aware of the need around us. Its made us understand a little more what love looks like. Family, friends, strangers even, have just been so very good to us. I understand now more than ever how crucial this aspect of life is. Supporting someone with an encouraging word is the easiest thing in the world you can to give. With social media, you can encourage someone with 10 seconds of your time. It just requires love and intentionality. We all have that, and we can certainly all give that away. So, as we post about fundraising for the Walk N Roll this weekend, I just want you to know that the main thing we want to do is encourage awareness and support for kids like Carsyn all over everywhere. Be aware of the beauty in all people, and be intentional about seeking it out. Talk to your kids about being friends with someone who is 'different' than they are. Teach them to choose friends based on what their hearts look like and not their bodies. If you know someone in the special needs community, be intentional about supporting and encouraging them. Its life changing. All of it matters. No kind word or act is ever wasted. It is so worth it. Thanks for donating if you can, and thank you for helping us spread awareness and support for Carsyn and other some incredible kids and parents we know ... it honestly means so very much. The world is changed by love. Give it away. Team Strong

Team STRONG!

This year has been one for the records! I would say it has probably been the most physically, mentally, emotionally draining year of my life. As most reading this know, we moved from Tennessee to North Carolina. That in itself, with 4 kids, is a difficult task. We found a great home to rent for a year or two until we figured out where we wanted to permanently buy. Jeremy started his new job. We went through the process of finding new doctors and therapists for Carsyn, which involved alot of appointments and paperwork and details ... all of the things that I hate doing. Riley started a new school. We found a new preschool for Isaiah and Carsyn. We started unpacking boxes :) Life started to ease up for a couple weeks, and then Carsyn had her surgery. And it was not easy. Not for a second. I totally underestimated how hard this surgery would be on everyone. Keeping a 5 year old mentally/emotionally happy when her independence has been abruptly taken away from her is just not fun.

What we thought would be a 7-9 wk thing, turned into a 5 month process. We were mentally prepared for 7-9 wks. We were absolutely not mentally prepared for 5 months.

At one point I described it as feeling like you are drowning in the ocean, and you look up and see a raft floating toward you. Hope fills your entire being as you see this raft. But just as you reach out to grab a hold of the raft, a shark comes up and rips it away from you and swims off.
And you aren't quite sure how you are going to move forward, but you know you have to, so you just do. You keep breathing. You try to keep vision. You try to be intentional about maintaining perspective and being positive. You just do what you have to do.
But it was just draining in every way.

In the midst of all of this, we stumbled upon a home. A home that was literally everything, from the covered tin roof front porch to the huge field off the back, to the open ranch layout, it was everything that we wanted in a home. Completely accessible for Carsyn. An undeniable answered prayer. So, we bought the home and we moved again. Transferred schools again. Readjusted again.

So, with all of the chaos, my mind has been worse than ever at focusing on anything or processing details of any sort. Which, if you know me, that might sound like normal, but I'm telling you, its been worse than ever.
I mean, I kept my kid home from school because I swore it was a teacher workday. It wasn't.
I have burnt probably 74% of the things I have attempted to cook, because I forget I am cooking.
More than once I have run errands with my pants on inside out.

We could absolutely have a reality show and it would be amazing. I'm telling you. Prime time television.

I just have not done well planning or even trying to plan things. Appointments, dinners, events, get togethers ... all of it, I have just been so bad at. Moreso than I normally am.
And this bad planning includes an event that we have been super excited about attending ever since we moved to NC. The event is the NC Walk n Roll for Spina Bifida, which raises money for the Spina Bifida Association. It is also a great way to meet other people in the spina bifida community, as well as to support other kids, and encourage our own Carsyn Grace.
We have planned to attend this race ever since we moved here last year. About a month ago, we found out the date was Nov 7, and the event was in Kernersville NC, so we put it on the calendar.

Yesterday I decided to pull up the event to find out if we have to register or do anything before we go. And that is when I found out that actually, the Walk n Roll, is a pretty big deal! And that you can make a team for your kid, and that people all over everywhere can commit to joining your team. And by being on your team, they can help support your kid by donating money, or walking with us, or wearing the team tshirt or whatever they want to do to show their support for your child and your team. Its just a really amazing way to encourage someone that has spina bifida. I was looking at the website yesterday and had the biggest smile on my face. These kids are incredible and have to go through so much that most will never understand. How awesome is it to spend some time celebrating and encouraging them to help them feel like they are the most amazing person on the planet Earth?!?
I love it.

We have always wanted to be more involved with raising support and awareness for the Spina Bifida Community. Now that we are 'home', feeling settled and feeling roots beginning to take hold, we are planning to start being more proactive with this effort. We will use this first Walk n Roll event this coming weekend as a way to get our feet wet with all of this and to meet some new people. And to begin the process of raising awareness and support for many years to come.

Next year we will start asking for people to join our 'Team' as soon as we find out event details. And we  hope to have a whole bunch of you come join us to walk and support our girl and the Spina Bifida Association.
But this year, because we are just figuring all of this out 5 days before the event, and we know we haven't planned well, we hope that you can just join us in supporting Carsyn by checking out our fundraising page and joining our team virtually. We are hoping to get t-shirts made before Saturday, and if we can get them, and you would like to buy one to support Carsyn and our Team in our effort to raise money for the Spina Bifida Association, we would so appreciate it.

Since having Riley almost 8yrs ago, we have come to know that one of the best ways you can love someone well, is by loving their kids. Thank you guys for sharing your support and love for Carsyn. While this past year has felt so hard in so many ways, we have never felt more loved.

Check out the fundraising page below and join TEAM STRONG!

Letter to my 29yr old self ...

With this being Spina Bifida Awareness month, my FB newsfeed has been flooded with pics, posts, videos of different stories of those living with spina bifida. I love it. I love that spina bifida gets some airtime every October. I think its important and I think its good, because really, so few people know what Spina Bifida is and there seems to be alot of misconceptions about it and those who live with it. 

The first time I EVER heard the word 'spina bifida' was when my doctor told me the baby growing in my belly might have it. I hung up the phone and went straight to the computer and googled it. As soon as I saw all the google results, I clicked off the page before I looked anymore. I was sick with fear.

We went to a specialist and had a gut-wrenching, 3hr long ultrasound which confirmed the diagnosis. Once confirmed, the specialist gave us an option of abortion ... never an option ... and so he began to talk frankly about the quality of life, or lack thereof, for our daughter who would be born in just a few months. Again, I was completely sick with fear.

Its been almost 5 yrs since Carsyns initial diagnosis. I have learned and grown so much over these past few years. And I know I have changed, for the better, during this time. Its been hard, but its been good. And now, looking back over the last few years, there is so much I wish the scared, 29yr old pregnant me would've known before I first googled that word 'spina bifida' .... 

Maybe someone reading this has or knows someone who has a baby growing in their belly with SB or some other diagnosis ... maybe you are scared of the unknown ... maybe this will help ... 

Here are the top 10 things the 34yr old me would have wanted my scared pregnant self to know 5yrs ago ....

#1 Your Carsyn Grace is hilarious. She has a smile that lights up a room. Her laugh is contagious. Her eyes are bright. Her will is strong. Her perseverance is unlike anyone you have ever known. She is resilient and her inner strength is palpable. She is full of life and full of joy. She makes you really really happy.

#2 She is stubborn. Really really stubborn. Maddening at times, but you will know that this stubbornness, this resiliency, is a gift from God for her. It will prove to be a valuable personality trait in her life.

#3 She will love you. I mean, really, she will have a deep deep love for you. She will want you to hold and lay with her in bed. She will want you to play dolls with her. She will want you to make lots of snakes and balls out of play doh with her. She will want you to find worms with her and build sandcastles and blow bubbles and go to the park and sing like a fool to her and do the underpants dance ... (you will learn that dance and it will make you laugh for days and days and days). 

#4 This. This special needs parenting thing. This is hard. It will be hard mentally, emotionally, physically. It will be hard on every level, in every way. Other people may think they get it, but the truth is, no one can possibly understand special needs parenting, unless they themselves are a special needs parent. Your eyes will be opened to a whole community of these beautiful people. You will become friends with a handful of them and your life will be so enriched in knowing them, their incredible kids, and their amazing stories.

#5 You will begin to really understand what it means to live a lifestyle of celebration and thankfulness. You will live with such a big sense of gratitude for even the smallest things. No longer will you take the little stuff for granted. You will see how blessed your family and your life is. You will very quickly learn not to compare and not to dwell, for even a second, on the things that you can't do, or the things that are harder for your family to do now that you have a child with physical limitations. Rather than dwelling on what is not, you will  celebrate all that is. You will indeed find yourself living a lifestyle of celebration. I mean, sidewalks! Even sidewalks are a reason to celebrate! Lucky you! You get to celebrate sidewalks :) You find reasons for celebrations every single day! Everything in your life is going to just look more beautiful. I promise ... even on the bad days, you will live with such a sense of gratitude, and will carry such a spirit of celebration, that everything in your life will become more beautiful and more alive.

#6 Every person in your family will sacrifice something at some point. It won't be easy ... on anyone. But with every challenge, your family will get closer ... and stronger. In a few years, you will look back and you will see how your family is different than most, and how this difference has done something beautiful and special in your kids and your marriage ... and you are all stronger and more unified because of it. You will indeed be family strong in a way you can't even imagine right now, and you will be so thankful for this.

#7 You will learn Gods Goodness ... and you will learn it in such a way where no longer will it be just a concept in your head or a thing that sounds good coming out of your mouth. The truth of His goodness will become a tangible reality for you which will forever affect the way you see life. It will be so real that you will never question Him or His goodness again. You are going to have an intimate relationship with God like you have never known before, and it will change everything in your world.

#8 You will be challenged more than you have ever been before. You will watch your daughter go through things that will make you feel like your heart is being ripped out of your chest. There is no pain like watching your child in pain. You will learn this firsthand. And it will cause you to live with such empathy and compassion for others. You will care more about others and less about yourself. You will become more charitable. A deeper, more true, sincere love for others will be birthed in you. The things that are important to you now, won't be as important to you 5yrs from now. What you walk through with Carsyn is going to give you a new perspective on life and the way it is meant to be lived. And you are going to be so grateful for this change because it is going to bring so much more joy and purpose to your life. 

#9 HOPE. You are going to come to understand the true meaning of that word and it will be life to you. It won't be wishful thinking. No, the hope you will come to know and carry will be more real than a wish. It is the confident expectation of good. You will confidently expect to see good things happen in and through Carsyn. You will expect to see miracles. Your face will be set like a flint and it will not matter what anyone else says or thinks or believes about your daughter and her future. The hope you will carry will be bigger and more true than any words that you will hear or things that you will see with your natural eyes. This hope will be as real and life-giving to you as the air you breath. It will fuel your faith. It will change your life.

#10 Hey, 29yr old Jen ... I know you're scared right now. I know you are fighting back fear with every breath you take. But let me tell you something... This girl, your Carsyn Grace, this girl is going to change your world in the most beautiful, amazing way. Everything about you, your marriage, your family, your future ... everything will be upgraded because of her presence. You don't have to be afraid of anything, God is with you. He will lead you, guide you, speak to you ... He will help you every step of the way ... And this sweet baby growing in your belly, she is perfect. Absolutely perfect. 

lots of love

Love is such a good teacher. When you experience it, you're somehow opened up to give more of it away.  In receiving love, we learn how to love better. 

We received a lot of love the past couple weeks. And it both touched us and taught us so much. One thing reinforced to Jer and I is the fact that love is so simple. Its not complicated, it just requires action. Because really, the smallest act of kindness can feel like the most beautiful gift in the world when you're in the midst of a battle, walking wounded and weary. A text in the middle of the night from an old friend saying they are praying, a message from someone you haven't spoken to since high school encouraging you in the place where you are at, a stranger with a kind word or even just a genuine smile ... giving these things to someone takes just a moment of your time, receiving these things from someone can be oxygen when you feel like you are suffocating. 

We all have times where we need some extra love ... we all have times where we just feel too tired and too worn down to pray another word or fight another day, and in those battle weary states, its the arms of friends, and even the arms of strangers, that lift us up.

Sometimes to make love real and active, all it takes is slowing down. Because when we slow down we see the person in front of us. We see needs of others as opportunities to show love rather than as interruptions to our schedules. Love requires a willingness to be incovenienced. It is in our willingness to be inconvenienced that we give love the space to grow. And there were so many people that took the time and even inconvenienced themselves in an attempt to support, encourage and show our family love the past couple of weeks. We have been blessed by so many acts of love. We have been changed by it.

And isnt this what life is about ... people ... relationship ... love ... Family and friends divide our hardships and they multiply our joys. People need people. We need relationship, we need love, we need each other. You can never go wrong when you spend time investing in people. You never know what a smile, text, kind word, message, phone call can do for someone. You never know how much it might impact their lives. But probably more than you would think. 

Jeremy and I were so impacted by acts of love for us the past couple of weeks that we came home with a resolve to change some things about the way we live. We are choosing to be more intentional about slowing down and allowing more time and space to be inconvenienced ... to see the needs in front of us and act on them more. To be more generous with our time. To invest more fully in people, because people, not possessions, really are are the only eternal treasures. 

Thank you for loving us and our family so well. Our lives have been so impacted by it. Because of you, we have learned to love better, and we are forever grateful. 

home

Alot of people have asked how the trip was. Its hard to explain. Though I have never run a marathon, that seems to be the best analogy I can think of to describe it.

Imagine that the most you had ever run before was 3 miles ... and you had only done that a couple of times. Yet, you decide to run a marathon. You have done nothing to prepare, you just have a glimpse of what running feels like, so you can only imagine what running for an extended period of time might be. In reality, you have no grid to even begin to know what this experience is going to entail.

The day comes, and the race begins. Its not really any fun at all. It is challenging, but you expected that when you signed up for this. Mile 17 comes and you start wondering how you will ever survive until mile 26. Mile 19 and 20 feel dark and bleak and there is no visible  light at the end of the tunnel. Feelings of hopelessness begin to arise. You want to quit and go home. Every single fiber of your being wants to just stop, walk off the course and try again next year. Your mind even begins to try to justify why next year would be better than this year to do this thing. But you made a promise to a loved one that you wouldn't quit, so your feet keep going, one in front of the other. Mile 23 comes and clarity starts coming back to your mind. Mile 24, you can finally start to see the light at the end of this long, dark tunnel. And then you hit it, mile 26, you see the finish line and it is as if this ginormous weight is being lifted off your shoulders. You cross the finish line and there are so many emotions flooding your mind. You never knew how hard this would be, could have never imagined how hard, and yet you did it. Its over. You can go home now. And tomorrow when you wake up, no one will be able to see it, but you know that something inside of you has changed. Your inner strength has been strengthened through this experience. Your resolve and determination has grown. You feel more thankfulness and appreciation for life than you ever have before. You have more understanding and more empathy with others who are about to run or are currently running their own race. You feel more deeply. Your heart has grown. And even though no one will ever be able to recognize the change, you know that your life will never be the same.

Though at times, it felt like the race was sucking the life out of you, you realize that all along, life was actually being breathed into you. Its hard to always understand the value of the process when you are walking through it. Alot of times, you can only see that when you are looking back, Its the process that creates growth. Its the process that changes us and makes us better. God blesses us with process, even when it's hard, because thats where real growth occurs.

So, we are home. It was really really hard. Mentally, it was absolutely exhausting. But it was good. Carsyn is equipped to have more freedom and independence. We learned so much about her and her body and how it functions, and how it can function better. We are starting a new bladder/bowel program at home that is specifically tailored to her and is going to get her out of diapers and we avoided having to have a major surgery to do accomplish this 'big girl' goal.

During her colon xrays, a doctor picked up on the fact that her left hip is dislocated. So, not only did we do the bladder/bowel thing, but we were also able to meet with some excellent orthopedic surgeons up there that did a complete check on her and all her orthopedic parts :) We have a new plan in place to get her legs functioning better so she can walk easier. It was such a huge blessing to be able to see those docs up there and get expert opinions on her physical development.

Back to marathon analagy ... I don't ever want to run one again, it was so much harder than I ever thought it would be, but there is so much good that came from it. We are thankful.

'We went through fire and water; but You brought us out to rich fulfillment.'  Psalm 66:12

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.