“We are almost home.”

Yall bare with me, this may be a little bit squirrely!

Am I the only one who gets discouraged by suffering? Sometimes I feel like all around me there is suffering and sorrow, and it never ends. Especially the suffering that I have to face because of EDS. But we all have an a challenge that we must face, mine is EDS, but yours might be fear, raising children, depression, work, and so on.

One of the hardest things about EDS is that it never goes away. It is a chronic illness. I can face a lot of things for a couple of days, months, or even years but life-long seems like forever. When I start to think about this, the devil takes over. “What’s gonna happen in a couple of years? You are sixteen, most people are in the prime of their life right now, but here you are, only able to walk with compression pants and reacting to every air-freshener there is.” Not today, Satan. He makes me feel like I am the only one that has ever stuggled. But I am not. What about all the people with cancer, the parapaligics and quadraplegics, others with EDS, they are struggling too. I am not alone, nor is this going to last forever. That does not mean that what I am going through and what you are going through is not hard, it just means that we are not alone and that we have much to be grateful for.

MercyMe has a song called “Almost Home.” It talks about how we are almost home. It was a much needed reminder this week that this does not last forever. The suffering does not last forever. This is NOT how it ends. No, this is only the beginning. One day, He will make all things new. One day, we will run and fall at His feet and worship the Almighty forever. We will feel no pain and no sorrow. But right now, He asks me to live here in this body that He has given me. He asks me to live for His glory.

Suddenly, all this suffering that felt so huge and like it would be here forever is small. It is overtaken by His goodness and the promise that He will one day make all things new. Now I choose to trust His plan and leave my life in His sovereign hands, the hands that were wounded for me. I choose joy because I have every reason to. I choose hope, because hope in Him does not disappoint. What do you choose?

Of one thing I am perfectly sure, God’s story never ends with “ashes.”

Elizabeth Elliot

Living In Light of Eternity

Do you ever find yourself in wonder of human life? How incredible it is that the Lord blessed you with the priviledge to be alive today! Isn’t it wonderous how we breathe in oxygen and breathe out carbon dioxide so that plants can breathe in carbon dioxide and breathe out oxygen so that we have air to breathe?! Isn’t it incredible that we have the blessing of a beating heart today?!

But, let’s be honest. Do you ever get caught up in thinking that what your life is mundane? That every day is the same? That we live in a never-ending cycle of sleeping and waking, living and dying?

I think that we probably all feel some of both depending on the season we are in. I know I certainly do!

I am guilty of forgetting to live in light of eternity.

Let me say that again- We need to be living in light of eternity. Because the Lord is coming back and He will gather up His people. Because two things will last for eternity: the souls of people and God’s word. Because we don’t get to be here long. Because we will be held accountable for everything we do and every word we speak.

We don’t get to be here long

NEEDTOBREATHE, Be Here Long

That changes things, doesn’t it?!

I am distracted. I forget to live for His glory and in light of eternity- EVEN IN THE LITTLE THINGS! His word says, “Whether, then, you eat or drink or whatever you do, do all to the glory of God.” (1 Corinthians 10:31) Man, this convicts me.

Let me encourage you, what you do matters. The Lord has placed you where you are for a reason. Our lives are not mundane. Let’s live today for His glory and in light of eternity!

Perspective

I have been thinking a lot about this word lately. Perspective is our viewpoint. Each person has a different perspective, but can we change our perspective?

I think my thinking about this word results from Ehlers Danlos Syndrome and self- pity. Both are things I struggle with. Yall I am not going to lie, EDS sucks. Really bad. But I have a choice.

I can look at EDS how self-pity and Satan tell me to look at it: I hate being in pain. I hate not being able to walk. I hate having to worry about the things I do and if I am damaging my fragile body. I hate having to pop myself in place. I hate having to conserve energy because fatigue is a struggle. I am afraid, afraid of getting worse. This is one of the hardest parts of EDS, it does not go away. I can stand a lot of things for a few days, months, or even years, but EDS lasts a lifetime. And I do not know what that lifetime looks like. The list of my deep dark fears, dislikes, and struggles goes on.

Or I can look at it like this: I do not like being in pain, but I know I do not suffer in vain because He has a purpose for every bit of it. I do not like having to worry about damaging my fragile body, but I have a body. A body that is fearfully and wonderfully made for His glory. I do not like having to pop myself back in place, but at least I can. When my shoulder was dislocated for almost two months, I could not pop myself back in place, and it was absolutely awful. I don’t know what the future holds, but I am giving it to the Lord. My tiny perspective of right here, right now is nothing compared to His. He knows every detail from the beginning of time to all eternity. He is not surprised by EDS. He is not surprised by my doubts and fears. He knew it all. The best part- He has a plan. A beautiful, glorious plan, not free from suffering, but full of learning and hope.

When I trust Him, my perspective changes. I listened to a podcast last night by Nancy DeMoss Wolgemuth where she said something along the lines of this: “Give it to the Lord, trust Him with it. It’s not going to make it easier, it’s probably not going to change your circumstances, but it will change you.” Indeed, it has, it does, and it will continue to.

Our perspective changes things. It changes us. But we can change our perspective.

Avery and I were talking the other day about things that frustrate us. Even little things, like school. We can either choose to be frustrated that school is hard, or we can be thankful that we GET to do school. We can be frustrated we spilled food on our clean clothes, or we can be thankful that we have food to spill on our clothes. When we choose to see the blessings, we are changing our perspective and making life much easier on us, those that live with and around us, and we are honoring the Lord. He has blessed us abundantly.

Rejoice always, pray without ceasing, in everything give thanks; for this is God’s will for you in Christ Jesus.

1 Thessalonians 5:16-18

I think that, as long as we live in this fallen world, Satan is going to try to make us see the “bad” things and block our view so that we are focused on them and not the blessings. As much as I wish that I could just see everything as a blessing automatically, I don’t. It is something I have to choose to do and that I fail at daily. Yet, every time that I choose to look for a blessing, it changes my perspective and makes me so much happier.

So today I challenge you, next time something frustrates you, try to look for the blessing. I am trying too!

Summer Thoughts

Hello, friends! It has been awhile. I hope that all of you have had a wonderful summer and my friends in the South haven’t suffered from a heat stroke yet! I’d forgotten that August here is almost hotter than June or July! This summer, I have been pondering how far the Lord has brought me. I am so thankful that He doesn’t leave us as we are, but teaches and grows us.

About a month ago, I was walking and thinking about how far I’ve come. How far the Lord has brought me. Seven months ago, I could not walk without my immobilizer (who was affectionately named “Peg.” Yup, we name everything!) Six months ago, I could hardly walk with Peg. My right leg was so weak that it was easy to see how much smaller it was than the left. For months, I worked hard at physical therapy and doing the exercises at home. Then, slowly, the progress started coming. To start with, literally all we did was take Peg off, I would stand on my left leg, and then slowly transition some of my weight to my right leg while someone held onto my knee with their hands to keep it from moving side to side. I would try to keep my knee from shifting out, which made my leg look like a “C,” or inward towards the other leg. Over and over again. Slowly, I could do the exercise without anyone holding my knee. Now, my legs are officially the same size and I can walk without any bracing! I am trying to build up enough strength to walk farther because I struggle to walk a mile at a time. But goodness gracious, what an improvement! It still makes me so happy!

It has been not quite a year since my shoulder first came out of the socket. Since then, I have had thousands upon thousands of dislocations and subluxations. One day, I believe it was last October, I decided to count how many times it came out in a day. I stopped counting at one hundred thirty. ONE HUNDRED THIRTY! Since then, I have seen multiple orthopedists and been in physical therapy since December with little breaks here and there, the biggest one being when it was dislocated for seven weeks. That was the longest seven weeks of my life! The hardest part was there was no end in sight, no one knew what to do, or I was just told I was doing it on purpose. One doctor even recommended I see a motivational speaker. Seriously?!? For a dislocated shoulder due to severe muscle spasms?! Mama and I walked out of that place frustrated and laughing. What’s a motivational speaker gonna do? Motivate it back into socket?! Needless to say, I’ve gotten some interesting suggestions! 😉 Now, my shoulder is in the socket. What a relief-I’ve never been so happy to see a perfectly round shoulder in my life (it was a weird square shape dislocated)! It is still extremely lax and comes out of the socket with any movement. We’ve tried bracing, but they aren’t tight enough to hold it. So tape is my new best friend! Peretto, the amazing physical therapist who got my shoulder back in the socket, discovered that, by taping the mess out of my shoulder, I have a significantly better range of motion. It is incredible! Taping has literally changed my life!

Then the doubt creeps in. Satan, whispers, “A year ago, you had no idea. A year ago, you had a little joint pain, but nothing like this. A year ago, you did not even know what connective tissue or a subluxation was. Look at you now. What if you didn’t have EDS? Think of what you could do! You poor thing! Now you are forever doomed to live in pain.” (I know, I can be a little dramatic, but doubt is a dramatic thing. It makes the molehills into mountains by making everything a worst-case-scenario.)

I start to feel sorry for myself, sad that I can’t do more than I can, and the future becomes bleak because it is dampened by doubts and “what ifs.” Isn’t it crazy what doubt and fear can do to you when they take over? I am only beginning to realize what an affect the mental state has on the physical state. The Lord made our bodies to do amazing things, but no one ever did anything amazing by giving up. So, what if I flipped those feelings back around? What if I let faith and hope take over instead of fear and doubt?

When I face hard things (as in anyone in life must), I grow. The Lord uses everything for a purpose. He does not leave us as we are. He grows us. He changes us to be more like Him. It is often painful. We must die to ourselves over and over again. Elizabeth Elliot used the analogy of an acorn. An acorn must die for there to be a magnificent oak tree. But no one ever looks at an oak tree and wishes for the acorn. That is what the Lord has done with EDS. It has changed me, it has grown me, it has taught me lessons I never would have learned otherwise. And I am thankful.

Sometimes I look at this fragile body of mine and I am frustrated. I want to run. I don’t want to be so fatigued that it is hard to function. I don’t want to be in pain. Then the Lord shows me- I am fearfully and wonderfully made. He knit me together for a purpose. He allowed me to have EDS for a reason. And I am thankful.

This summer, I have been reading The Screwtape Letters by C.S. Lewis. It has really made me see things in a different light. I love it! It is a little bit hard to read because you have to think about it, but it is worth it! One thing that it has really made me realize to a whole new level is this- don’t be distracted. I am distracted. So distracted. But in my distractedness, I am missing out. If I am distracted, I am as good as not here. If I am distracted, I am not doing what the Lord has created me to do. We have a higher purpose than being distracted. So I am trying to get rid of things that might distract me from living in light of eternity. My big one is my phone. If I am mindlessly scrolling, I am not investing in what matters! Now, phones are wonderful, they allow me to communicate with people I wouldn’t otherwise be able to. But, scrolling through Pinterest, Instagram, or Facebook more than once a week is distracting and unnecessary. So, I am trying to be less distracted so that I can honor the Lord with my time. Also, I highly recommend The Screwtape Letters! 😉

Thanks for reading this long, squirrely blog post! Happy Sunday!

Self Worth

I think, in many ways, this is a fairly common topic in our day. Everyone seems to have an opinion about what they or someone else is worth. Our culture defines the preborn as worthless through abortion. Our actions and speech towards and about others is often our definition of how much we feel that they are worth. But everyone has a different opinion. Some feel that preborn babies are worthless, others feel that they are worth everything. Some feel that lives of different ethnicity are of no value, others feel that they deserve much value. Some feel that those with any sort of disability are inferior, others feel that they are completely equal. So, in a culture and people that can’t decide who is worth what, how do we know who is right?

We look to God’s word.

The answer: every human being is made in the image of God. It does not matter if that human is not yet born, is of different skin color or ethnicity, or has different abilities. The Bible says that we are fearfully and wonderfully made. The Lord took the time to knit us together in our mother’s womb, He must have a reason and purpose for our life! He gives us life, breath, and purpose. Every human life is worth defending. He gave His life for us on the cross. He died a criminal’s death, in my place. “For God so loved the world, He gave His only begotten son, that whosoever shall believe in Him shall not perish, but have eternal life.” It doesn’t say, “For God so loved those who had already been born,” or “For God so loved those that had white skin,” He said He so loved the world.

We all have something that makes us feel valued, or not valued. Maybe for you it is that you weigh too much, you’re too tall, too skinny, not smart enough, do not have a degree, can’t cook well, or anything that makes you feel like your not worth as much. We all base our value on something.

For me, it was how much I could do. I needed to be able to do things, to help out, to serve. Why? Because it made me feel that I was “earning my keep.” As you can imagine, having EDS sorta crushed my feeling of being worth something, my sense of fulfillment. I could hardly walk for a-while and I had little to no use of my right arm (I’m right handed). It hurt. Really bad. I could do some things, but I felt extremely limited. I couldn’t wash my hair, walk through a store, sweep the floors, the list goes on.

But through that, the Lord taught me something I’m not sure I could’ve otherwise learned. You do not define your worth. I do not define my worth. So if what we do, what we look like, and what we have does not define our worth, what does?

Christ does. He gave His life for me. He gave His life for you. He made us. He defines what we are worth. He loved us enough to suffer great agony, to give up His life for us. That, my dear, is what you are worth.

You’re beautiful
You are treasured, you are sacred
You are His
You’re beautiful

Mercy Me, Beautiful

Created in His image, fearfully and wonderfully made. That is what we are.

Bought by His precious blood, redeemed, adopted, chosen, and loved. That is who we are. Because of Him.

Ehlers Danlos Syndrome

May is Ehlers Danlos Syndrome awareness month! It is crazy to think that a year ago, I had never even heard of it! Many people never have. If you have any questions about EDS, I’d be happy to try to answer them. Feel free to drop a comment. 😉

Because EDS is rare, many people have never heard of it. Including those in the medical field! That coupled with the fact that it presents differently in every person makes it very difficult to diagnose and treat! So, I am on a mission to make EDS known so that maybe more people can be helped, cared for, and treated.

The Ehlers Danlos Syndromes are a group of inherited connective tissue disorders. Connective tissue is in much of the body, so EDS can cause a variety of different symptoms. Anything ranging from random allergic reactions, stomach pain and nausea, dislocations, dizziness, vessel/organ rupture, scoliosis, and pain. But thankfully, just because it can cause all those things, it does not mean that it will for every person with EDS. I love a saying that goes, “If you can’t connect the issues, think connective tissues.”

Connective tissue is pretty much the glue that holds our bodies together, so sometimes EDS causes major stability issues! Our joints easily come out of the socket because the connective tissue is so stretched. Hypermobility is a major symptom from overstretched connective tissue. Braces, splints, and tape are often used to help stabilize “angry” joints. Everyone is different, but so far I have had eight different joints come out of socket!

Sometimes I feel like EDS has wreaked havoc on my life. But really, it has wreaked havoc on my plans for my life. This was what my life was meant to be all along. A beautiful, crazy, God-organized mess, that was meant to be my story all along. The Lord is using this to make me exactly who He meant for me to be. He makes no mistakes.

While EDS has its highs and lows, it does not go away. It is chronic. And often that makes it very discouraging, as with any chronic illness. But it has its bright sides. It has taught me so many things! We’ve also just learned to laugh. Why? Because it is gonna be ok. No matter what. God has got this. And laughter is the best medicine! So, want to know some of my funniest injuries caused by EDS? 😉 Last night, I laughed and popped a rib out! One time I sneezed and popped my hip out! Pretty crazy right?!? I also have an amazing T-shirt that says “I’ve got issues with my tissues,” yup, it is totally my favorite T-shirt! Another bright side- I have the best support group! This journey has been hard and brought many feelings, but never once have I felt alone. I am so thankful for all of you that have prayed and come alongside us through this! Thank you! Happy EDS awareness month!

The Category Six Hurricane

I think many of us have a point in life that we can look back at right before we were hammered by a storm that would forever change us. Do you ever wish you could go back and warn yourself to just hang on, that the Lord would pull you through?

For me, that storm is EDS. Except it is like my own personal hurricane that never goes away! Ever feel like you’ve got one of those? Sometimes you are in the eye and you are at peace though it swirls around you. Sometimes it simply feels like a category one, and others a six (yes, don’t worry, I know that there is only five categories. I ain’t that home teached! ;)). So, when you realize that it is no use waiting for the storm to pass, you take this quote, the joy of the Lord, and His sufficient grace, and you just dance.

Life is not about waiting for the storm to pass, but learning to dance in the rain.

EDS has forever changed me and is continuing to do so. I am not the same girl that was diagnosed with EDS six months ago. But that is the funny thing about storms, they never leave their path the same way they found it. Sometimes it feels like that storm just might wreck you. Sometimes I wonder how much of me will be left when this is over. You want to know how much? Exactly how much God intended for there to be. He took my “good” plan and shattered it and replaced it with His, more beautiful and wonderful than anything I ever could’ve imagined or planned for myself.

Sometimes I tell Him I don’t think I can go much farther. And you know what? He seems to ask me each time, “Are you willing to follow Me even here?” And though it hurts to give myself to Him over and over again when I feel I have nothing left and can’t go on, I cannot help but think of what He gave for me. He left His throne and gave His life for me. Is He not fully worthy of everything I am and everything I do?

The hard thing is, when He changes our plans, it often does not feel like it is for the best. It hurts like crazy because we have to let go of ourselves, our possessions, and lay our lives at His feet and that is not what our flesh wants. Sometimes I mourn for the life I once had because, while it was not “easy,” it was not this hard. But He’s teaching me that if I have to rely on Him every day, if I have to ask Him for strength just to get through the day, if I need Him to just be able to carry on, that is exactly where I need to be.

The thing is, though His plans often wreck us, they are supposed to. Because, in order to make us more like Him, in order to teach us, in order to grow us, we have to be wrecked of our sinful nature. If He never moved us, we would never grow. As Elizabeth Elliot pointed out, the acorn has to die for the oak to tree to grow. We must die in order to live.

So hold on. If you are in the worst of your category six hurricane, just hold on to the Rock. His grace is sufficient. He has proven it to me. He proves it to me every day that His grace carries me through. But I would have never truly learned that lesson if I had not had to endure the category six hurricane.

P.S. For those of you wondering what has me on the hurricane kick: we drove through the area that hurricane Michael hit in October. Apparently, I am stuck on it and it is a wonderful reference when trying to wright about trials! And I could not decide on a title, thus The Category Six Hurricane it is! 😉