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!