love story

   So I'm well aware that I'm behind the curve, but I just discovered Spotify after years of being a loyal member of Pandora Plus and HOLY MOLY. It is gold ya'll. I'm not a fan of the ads (maybe an upgrade in the works Mom and Dad?) but you can listen to ENTIRE albums. All the John Mayer, all the Taylor Swift, all the David Crowder and all the Ben Rector albums I want! Magical. As a lay in bed the other morning, "Love Story" off Taylor Swift's Fearless album (old TSwift is the best TSwift) came on and I began SOBBING.

  Okay, no, not because I have found the love of my life or anything to what the song describes (to be honest I know my parents will be thrilled when/if I find my future spouse and they are nothing but supportive and the greatest people to walk the planet), but because this song reminds me of T Bar M Camp Travis. Dancing on table tops on Thursday night Boot Scoot night in the Rio (the dining hall) in my Mexican dress and overalls and cowboy boots and braids, screaming the lyrics on the top of my lungs, stomping on the tin table top dancing ridiculously (only to be outdone by the guy counselors across the salad bar) with some of my favorite people surrounding me and soaking in every. single. moment.

   To give myself some credit, I am an emotional person but not THAT emotional of a person to cry every time I hear a popular Taylor Swift song. I have been dealing with some unexplained GI issues the last three and a half weeks (yes, new GI issues, like it was possible for there to be more things wrong with my GI tract?! I really should stop saying that..) that have resulted in me getting on average 30 minute bursts of sleep, with the longest stretch being two hours. (Oh. And there was the 24 hour period where I used my epi pen twice. That sure was fun! What a life!) Alllll my chronic illnesses, coupled with my new found increased horrible sleep...

*Skkkrrrt side bar... Dr. Francamano, the EDS doctor in Baltimore, requested I have another sleep study done, so I had my 10th sleep study done in May here in San Antonio. When her office got the results, they double checked to make sure I actually slept (which indeed I had slept six hours) because my results were so bad from the paperwork it looked as if I hadn't slept at all. Your REM and Stage 3 sleep makes up 50% of your sleep and this is when you actually rest; your body/nervous system goes into rest and digest instead of fight or flight. WELL, guess what percentage of REM and Stage 3 sleep I am getting? 1%/. Yes, you did read that right. ONE PERCENT. No wonder I'm so freaking tired all the time! Due to dysautanomia, all the time I'm awake my body is in fight or flight and then due to my sleep issues when I'm asleep it's STILL in fight or flight! The doctor's office said it was the absolute worst sleep study they have ever seen, and that's coming from an incredible office who has been in the medical field for many years and sees rare cases every day! I felt as if I deserved some sort of medal or trophy for "achieving" this honor, but apparently you don't get a medal for having the worst sleep a doctor's office has seen :/

   Okay back on topic...When I get tired, I get overly emotional. I'm already an emotional and sensitive person, I'll be the first to admit it. Therefore, when I get tired, I get super emotional and cry. I cry a lot. Some people get angry, others irritable, others just shut down, others cry. Considering I haven't slept for more than a two hour period in the last three weeks (I asked my parents if this is similar to how they felt when they didn't sleep well for two years after the twins were born. They laughed.) it's no wonder hearing Love Story reminded me of Camp and automatically brought me to tears.

   This time of year is extremely difficult for me because a large majority of my friends and peers are working at summer camps (which I had always dreamed of/planned on doing) while I do summer school. I truly believe that camp ministry is what the Lord has called me to do, so it's quite painful watching my health hold me back when I strongly feel called to serving in this capacity and view it as my future career. Last time this year, I sunk into my deepest depression since multiple hospital stays and being diagnosed. It's so hard when you feel like the Lord is closing the door on what you feel He has called you to do for the last thirteen years.

   Camp ministry has held a special place in my heart since I attended T Bar M Sports Camp for the first time at age seven. Having attended Day Camp the year before, I already idolized the high school/college age counselors (It didn't "help" that my counselor was one of my childhood role models/mentors and still friends to this day, Michelle Gaffney Miles, I mean every kid idolizes their camp counselors but that brought it to a whole another level!) but I remember Trish White briefly explaining to all the girl campers and counselors what her job was (Women's Director of Sports Camp) and being BLOWN away. Wait. You're telling me she gets to work at camp FOR HER JOB?! And all year round?! That was it. I was sold. The dream of being the Women's Director at one of the T Bar M Camps started on that June afternoon in the Sanctuary over looking the Sports Field and I haven't stopped chasing after that dream since. As I've gotten older I've become realistic and broadened my horizons to the option of other camps and other positions, as there's only four women's director positions through out T Bar M Camps and they're rarely open, but of course that remains the ultimate dream.

   Around this time was also when my Dad was "passed down" the Labor Day Family Camp from the Weathersbee Family. This could be, and may be, another blog post, but my gosh, my love for these Family Camps has no bounds. Getting to watch families experience Jesus TOGETHER is awesome. They can implement changes as a unit. They can play as a unit. They can rest, relax and reflect as a unit. Getting to be behind the scenes with an increasing role each year is one of the biggest honors and greatest gifts my absolutely incredible Dad has given me. I loved getting to see all the facets, details and behind the scenes work that goes into making this awesome weekend happen and then watching it unfold before my own very eyes! It is truly one of the most special and surreal feelings. With each Family Camp, my love for camp ministry deepens.

   Back to T Bar M...In my four years as a Day Camp camper, I was blessed year after year to have outstanding counselors, deepen my relationship with Christ, make friends and have a blast while doing so. My mom often complained that I would come home and talk about camp literally non stop and do the cheers/chants at home (If you've ever been to/worked at a camp, you know what I mean by cheers/chants)...even though I was the only one doing them. I looked forward to that one week every summer all year long, and that I didn't change when I "outgrew" Sports Camp in New Braunfels after sixth grade and transitioned to Camp Travis in good ole Spicewood on Lake Travis, the camp for teenagers grades 7-11. I loved Camp Travis (and even had made some lifelong friends-looking at you Sofi and Lauren!) and thought it was great, but thought there was no way it could ever top my love of Sports Camp and my dream of one day returning as a counselor there, being promoted to leadership and eventually taking Trish White's job after college. Isn't it funny how He works...

   After receiving my POTS diagnosis from Dr. Patel in March 2012 had sunken in more and it became my reality, I walked into my parents bedroom. "I'm still going to Camp, right?" I asked them, positive that their answer would be yes. I mean, we had signed up for the following year on closing day last year just like we had on all days past! They both just looked at each other with a blank stare and then looked at me dumb founded. My dad finally spoke and said he just didn't know how that was possible and how it could happen. To say I was crushed would be an understatement. I felt as if I had already lost everything in my life that made my life my life, now you're saying the one week of the year I looked forward to the most would also no longer be apart of my life?! No no no no no

   Luckily, the Lord had greater plans and T Bar M showed me grace, love, compassion, mercy and kindness in the most incredible of ways. My dad, who had run retreats at T Bar M in the past through being our church's Director of Student Ministry, gave them a call the next day. The following day, I received a package in the mail from T Bar M. Inside it was a t shirt, coffee mugs, all sorts of fun Camp things and most near and dear to my heart, a big card signed by all of the staff sending their love and wishing that I get well soon. The best part however, was signed by Mark Kauffman, the director of Camp Travis. He said that he was excited to have me at camp in August. I WAS GETTING TO GO TO CAMP!!!!! How in the world I had nooo idea but gosh golly I was going to do it!

   In the beginning summer months, my parents and I began to brainstorm how this was going to happen. Mind you, Camp Travis is in the absolute middle of nowhere, and there is no AC-with the exception of the office and the nurse's office. With the diagnosis being new and with my parents, nor I, feeling comfortable with them being an hour and 45 minutes away in San Antonio, or even 45 minutes away at my uncle's house in Austin, it was clear they would have to be there in some form or fashion. My dad borrowed my uncle's camper and set up in the back of Camp, where he wouldn't be visible. He'll be the first to admit he loved being at camp almost as much as I did-if not more! Having him there provided my parents, myself and the Travis staff the reassurance and security that if anything should go wrong, my dad would be right there and able to take care of me. There was no way my heat intolerant body that passes out more and gets even more fatigued in the heat AND requires a daily nap and lots of sleep was going to make it in the 105 degree plus Texas summer heat without air conditioning, so I was set up to sleep in the nurse's office where I would have my own room and bathroom-IN THE AC! As for food restrictions (this was before all the feeding tube joy), Seth (now the programming director with his wife Haley, who he met at camp, yes camp love stories are the best AND and they have two precious boys) sent me the meal calendar for the week and I sent back my own calendar, color coordinated of course! I indicated what food of theirs I could eat, what food of mine I would be bringing that they would need to prepare, what food of mine I would bring for snacks, etc. A sweet, sweet Travis Crew (work crew, my mom calls them the slaves of camp, not inaccurate) girl's ENTIRE JOB for the week was to follow my calendar (which they were much impressed by I must add) and prepare my meals, even though I offered to do so myself. Shoutout to the entire TC Staff for having a servant's heart that week and always, but especially her...even though I don't remember her name.

   Now, here, here is where T Bar M went even MORE so above and beyond anything I could have EVER asked or dreamed for, now and to this day. THEY GAVE ME MY OWN COUNSELOR. Yes. You read that right. A counselor all to myself. And ya'll. Not just any counselor. But Erinn freakin' Overby. Before I was able to write this next section, I just sat at my laptop with a blank stare because there really are no words to describe this incredible human, nor will they ever be. From the moment I met her until now, she has influenced me in significant ways, more so than any of my other absolutely fantastic counselors I had over my ten years as camper and she continues to make me a better person every day since.

   When I arrived at Camp, I was nervous, to say the least. My two lifelong Camp friends that I had requested be in my cabin (everyone can request two people to be in their cabin, I'm not that big of a diva) well I realized I hadn't told them yet about my diagnosis and the changes that would be occurring at camp! Oops! Trying to explain that over text in 15 minutes sure was something. As my dad & I arrived with my mountains of stuff and passed through the familiar gate welcoming me home with the sign reading "Welcome to T Bar M Camp Travis", "Love God, Love Others" I felt a rush of excitement filled with the overwhelming peace of returning home. We were greeted with staff members as we pulled in, and upon opening the car door, I was introduced to MY counselor, Erinn, or as her name tag read, "Ernn." (They had made a typo five summers ago and she chose to go with it since then.) I was anxious getting out of the car by the nurse's house...which is right in the middle of camp, how was a summer camp full of teenagers and college students going to react to a girl unloading, with her father, everything but the kitchen sink at the nurse's office? In the process of unloading, was, of course, my wheelchair. I had just recently warmed up to the idea of accepting using a wheelchair to prolong my energy, but it was still quite humiliating to be a teenage girl  using a wheelchair. Before I could even come to terms of acceptance with my dad pulling the wheelchair out of the trunk, he pulled out a motorized scooter and said "Or you can use THIS!" (yes a motorized scooter like the ones grandma's use at HEB). "This is awesome!!" Erinn exclaimed. "Can I ride it?!" I was speechless and frankly, I didn't know what to do with myself. He explained that he had talked to Mark Kaufmann, and Mark was afraid that my wheelchair wouldn't be able to handle the rough terrain of Camp and all the pea gravel. Mentally, I realized he was correct and my dad was smart to rent a scooter for the weekend, but the teenage girl trying to maintain a "social image" didn't know what to think or do. However, it was at this moment, as Erinn did donuts on my motorized scooter, "testing it out" in the middle of Camp, that I knew the Lord had already provided ten fold.

   You see, what I needed that summer was not an extreme time of spiritual growth, but rather FUN. Now to say I didn't grow spiritually would be a lie, but to say I didn't have the time of my life would also be a lie. Going into that week, I needed to be reminded of the simple joys of life and what it was like to simply be a teenager and a laugh. This social butterfly who had been incredibly isolated since January needed to remember what it felt like to make friends, to have conversations with peers and be surrounded by fellowship. That week provided me with all that and more. Spending time with Erinn, she taught me to accept who the Lord created you to be. She showed me what it looks like to live in freedom to be yourself, fulling embracing joy and all that life has to offer.  Erinn modeled what it looks like to love the Lord with all my heart and how to be myself at all times. She alone has had one of the biggest impacts into shaping me into the person I am today. She continues to bless me by living a life full of zeal, zest and joy. She provides me with comfort, taught me how to make the best of every situation, knows the desires of my heart, listens to my fears and loves me well. She somehow was able to unlock a side of me that I never knew I had. That week was one of the first times in my life I learned that it's okay to accept help from other people; they see it as a way they can serve you and love you with a Christ like love. In that one week, I learned more to embrace who I am than at any other point in my life. That one week in August, those 72 hours, have remained some of the most influential in my life to this day. I could go on and on and on for how incredible that week was, it could truly be a book-as if this blog post isn't a novel length already! When it came time to leave, I SOBBED. I was the last camper to leave the grounds, and I was crying so much and so hard Erinn missed her end of session staff meeting! My mom had to peel me off of Erinn as I left and I cried the whole way home. It truly was the absolute best week of my life and I wish every day I could do it over and over again. If it gives you any sort of parameters to show you how wonderful that week was, Mark Kauffman's daughter, Coco (who is two years younger), and I became friends that week and Coco, who has spent her lifelong summers at Camp Travis, recently told me it was a week she would never forget and was one of the most memorable weeks she's ever had! Here's to you, Jesus, for providing me with who I needed, exactly when I needed her, and for giving me the sweet, undeserving gift of having Erinn Overby in my life every day since. I love you deep and wide, Ernn!

   The next year I returned to Camp, feeling much more comfortable with my circumstances and ready to embrace all that camp had to offer. Erinn was on leadership that summer, so she could not be my counselor, but I was paired with a gem named Ashlyn. Ashlyn is wise. What I needed that summer was for someone to challenge my thinking and theology, and of course, that is exactly what God provided through Ashlyn and the friends I made that summer (hi Sam, Garrett, Ty, Kristen & Alex and countless counselor friends). There was no such thing as a surface level conversation with Ashlyn. Every conversation was deep and went way beyond the camp provided devotional. She challenged my faith in ways I had never been challenged before and therefore stretched and grew my faith. Ashlyn provided wise counsel and for that, I am so thankful.

   As I prepared for my tenth and final summer as a T Bar M camper, I really didn't know if I was going to even make it to those gates. That year (2014-2015) is what I not so lovingly refer to as my hell year(s). When I arrived at Camp, I had already been in four hospitals in three cities in five months, with constant outpatient procedures. I had a feeding tube in my nose. I was receiving TPN (IV nutrition) through my port. I had lost 40 pounds and was weaker than I had ever been. I was on high, high amounts of IV narcotics and yet still in tons of pain. I showed up to Camp worn, weary and feeling low. I truly didn't think I was going to make it through the week and I figured if I did, I would be miserable in the process. It is in times like this, I feel as if God hears our internal thoughts, laughs, and goes, "just you wait and see, My Child".

   This week was the week with Claire Raabe. My goodness, I could go on and on about her as well! Looking back, I realize that she was my age (summer between her sophomore and junior year of college) when she was assigned to me. How she did not freak out and loose her mind when she realized all I entailed is beyond me. She showed love, compassion, grace and patience far beyond what I could ever dream about and I am eternally grateful for her for that. I admire Claire's authenticity and how dearly she searches to know the Lord better.

   Every moment that week was filled with emotion, as it marked the "last" of everything. In the past two summers, I attended all activities, but did not participate in all of them, as my health allowed me, and just slept in some in the morning and took a nap during the assigned camp rest time. This year I was much weaker, and therefore had to be much more selective in when I left the nurses office and also had to plan my day around my dozens of meds, when my TPN bag needed to be changed, when my feeding bag needed to be made and hooked up, when the pumps needed to charge...gosh it was (is) a lot. TPN is something you have to be extremely careful with and it's a TON of work, so my Dad handled that load, but still, I can't imagine what must have been going through Claire's mind. This week was also different because due to being hooked up to the TPN through my port, I was not allowed to get in any bodies of water as my port could not get wet. That was challenging when the camp you're on is ON Lake Travis! That meant no swimming in the pool either. This also presented a challenge when it came to bathing. Claire's servant heart shined through once again as she bathed me in a bathtub through out the week with me in a swimsuit, being extra careful around my port. I'm guessing when she decided to work at camp that summer, bathing a 17 year old girl was NOT what she pictured, but she did everything with a joyful heart full of love and kindness.

   Since I was much weaker that week, we did a lot more low energy activities in the cabin. One of my favorite memories is when I woke up one morning, Claire and a few of the other counselors had built a fort on the porch of the nurse's office covered with words of encouragement. They convinced some of the younger girl campers to join them in the process, and crowned me "Indian princess" complete with a flower crown and face paint. There were so many silly things like that through out the week that seem so small, so silly (At camp, it's cool to be weird), so trivial, but in a year when so many times I was just completely focused on staying alive and making it through the moment, small laughter filled memories like watching episodes of Friday Night Lights, obsessive picture taking, fort building, karaoke contests, flower crowns, face painting and late night porch swing talks mean so much more. I laughed and smiled so much that week in a year where I didn't laugh or smile much ever. That week, I was also shown the hands and feet of Christ and what a servants heart looks like in new ways. This was around the time when my pain had escalated to a new level, and there were countless times Claire would crawl into my twin size bunk bed and just hold me and allow me to cry on her shoulder. She constantly was thinking of new ways to distract me from the pain and suffering of what my life entailed. She provided a week of freedom and fun. Claire is a faithful friend who challenges me, inspires me to think deeper, pushes me out of my comfort zone and I'm excited to see what He has in store for our friendship.

   Two of my all time favorite camp memories also come from that week. One, is being carried down to the gospel ravine. On Wednesday nights, Camp presents the story of the gospel in a innovative way and it is followed by campfires with the counselors sharing their testimonies and then campers sharing their story as well as exploring their faith, if they feel inclined and comfortable to do so. At Camp Travis, the gospel presentation is held at a ravine looking over the lake. It is such a beautiful and sacred spot, however, a spot that is difficult to get to. It is not accessible by scooter, gator/mule or car, only by foot. When I realized this the first year with Erinn, I knew there was no way I could make it down there (it can be a challenge even if you're healthy!). I told the staff it was okay for me to miss gospel presentation, they could simply tell me what happened. They refused, and guys from leadership carried me down to the ravine on their backs. Incredible, Christ like, sacrificial, selfless acts of love in action. My third year, however, Wednesday had proven to be a tough day for me, and I was passing out more than usual. I also had pounds of "gear" with me for my port and feeding tube. I thought there was no way I was getting down to gospel ravine! Camp shone through with selfless hearts yet again. Guys took turns carrying me down, despite me passing out multiple times, and Claire following them with my gear. I remember thinking to myself, "If guys I barely know are willing to participate in selfless acts of service to show Christ's love to me, how much more must my heavenly Father love me?" I truly believe Camp is one of the greatest examples of the body of Christ in action and modeling the kind of community He intends and yearns for us to live in.

   The second memory came from the last night at worship, singing "Heaven Song" by Phil Wickham. I had heard the song before, and we had sung it at Camp previously that week, but that night I was in a lot of physical pain as well as a lot of emotional pain as I struggled to accept the fact that my time as a camper was forever coming to a close. The lyrics talk about what the artist thinks it will be like when we enter heaven-how peaceful it will be and how much comfort we will feel being with our Creator. Thinking about that day when I enter Heaven's gates to be united with my Savior-a day with no more pain, no more fear, no more tears-brought such sweet relief to my soul. Still to this day when I'm in pain, I will sing the song to myself. Doing so brings me back to Camp, a place of so much happiness, while also reminding me that the pain I'm enduring can't compare to the joy that is coming.

   As you can imagine, leaving Camp for me for my final time as a camper was filled of tears. There's several pictures where my eyes are swollen red, tears streaming down my face. Camp was always an important part of my life, but after the last three summers I attended at Travis, Camp had a whole new meaning. Camp had provided a safe place, a place of rest and a place where I was constantly surrounded by His people who consistently and faithfully showed me His love and grace. Camp had gained a greater appreciation in my heart for the people on staff and how tirelessly they worked to make those weeks possible for me. I had always wanted to return to Camp to give back to the place that gave so much to me, and still do, but after those three weeks I know there's nothing I can ever do to repay them for the three weeks they gave me. Camp brought some of the most amazing people in my life who have continued to love me well to this day. Camp has ushered in mentors who have stood by me and loved me well, even when I am not easy to love. Camp is the closest thing I have ever experienced to Heaven on earth and has lead to me living a life of constantly chasing after that feeling of unsurpassed joy that surrounds you when you surround yourself with those who are constantly seeking Him in all they do and keeping you accountable for your actions while loving you with Christ like love along the way. As I left, Meg Cooke reassured me that this was not the end of my camp story, but rather the beginning of a new chapter. Several people from Camp have told me in the past how much my story inspired them, but what they'll never know is how much the love they showed me inspired me, and that is something I'll never be able to put into words to adequately thank them for. The Body of Christ in action purposefully and intentionally serving others is incredibly beautiful to witness and extremely humbling to be in the middle of.

   Sadly due to my health, I was not able to return to Camp on Travis Crew the following summer, or as a counselor the past two summers as I had always dreamed of. No words can explain how long my heart yearns to be there serving. Having a chronic illness has me constantly feeling like I'm trapped in a body that is so full of potential, yet I'm not able to tap into that potential because of an illness my body has that isn't my fault. However, as with all things in life, I'm not giving up on my dreams. I really do not have any idea why in the world the Lord hasn't allowed me to work at Camp when He has so clearly marked my heart with that passion almost thirteen years ago and continues to do so. It's so difficult coming to terms why I'm not working at camp at this very moment, it's not like I wanted to spend my summers committing murder or selling drugs! No, I wanted to spend my summers loving on His children in a place that is filled with His spirit, His story and His people.

   A little tie in from this blog post to the one I'm working on next and hoping to have done by my 20th birthday on July 19th: My dad and I have recently been talking about how God is not fair. He does not say He is fair. God is a lot of things, but fair is not one of them. He is, however, just. He does however promise that His plans are for good, have a purpose and are for the good and glory of His Kingdom. This has influenced how I go about my future and my plans. I believe He is preparing me for something greater that what I could've imagined and a plan unique to my situation and my story. He never once promises that our journey will be easy (I mean, think about it, His own son's life here on Earth was far from easy), but He did promise that He would never leave us. I know the work He does at Camp does not stop simply because I am not there, and connecting with friends who not only work at T Bar M but the many, many, incredible Christian camps across the country remind me of that. We are such a small piece in what He is doing. Our piece is small, but it is not insignificant. I don't know what He has planned for me and my future in camp ministry-life would be a heck of a lot easier if I did! I imagine it as if I'm holding onto this fake pearl necklace-symbolizing all my prior hopes and dreams and what I, Ashley Marie Roper, think is best for me. Yet, here He is in the distance with a real pearl necklace, saying, "My Child! Why won't you look! I know you think you know what's best and what you need, but taste and see! Let go! What I have for you is so much better!" Faith is hard. It's hard to let go of what you think YOU need and put your trust in something you cannot see or understand. However, that's what makes faith, FAITH. So my prayer is that I'm able to let go of my fake pearl necklace and that I'm able to accept that real pearl necklace with open arms, whatever that may look like. It is a scary prayer of surrender, acceptance and trust but the Lord has constantly shown me, despite my doubts, that He is a God of love, and with Him on my side whom can I fear?

years of tears

"Life is a journey, not so much to a destination, but a transformation. Looking back doesn't it sometimes feel like our richest times come right in the midst of our hardest? But God made us to life in community, to laugh and cry. To hurt and to celebrate with each other, no matter what were going through. And transformation is tough, and we dont always end up where we think we will. But we have to remember, that even when we struggle to believe in Him, He always believes in us. He fills our lives with purpose and passion, if we just let Him. And the best part of the journey, is that the God of the universe, sometimes allows us to play a part in changing the world. Isn't that a trip?" ~To Save A Life
   Five years ago today, everything changed. I was diagnosed with Postural Orthostatic Tachycardia Syndrome and everything, everything except His faithfulness, everything changed.
   A few years ago, my dad told me hearing that news was similar to the reaction he had when he heard about 9/11. In the moment when you hear the initial news you understand that it's big and will have a large impact on your life, but you don't understand how big of an impact it'll have until you're a) out of the initial stage of shock and b) the longer that event is in your life. To this day five years later, I still don't think I'll ever fully realize how much POTS has affected me and changed me.
   It's truly incredible all that can change over a five year span. If you would've told me I would've made it through those dark, dark days at CMC, I wouldn't have believed you. If you would've told me I would be a full time student at Baylor two years ago, I wouldn't have believed you. If you would've told me I would eat a meal daily in the nine month period I didn't eat, I wouldn't have believed you. If you would've told me I would have a feeding tube three years ago, I wouldn't have believed you. If you would've told me some of the people I considered my closest friends would leave me through out this daily battle with a chronic illness, I wouldn't have believed you. If you would've told me I would be an active member of a sorority when doctors told me I was crazy for rushing, I wouldn't have believed you. If you would've told me I would have the sweetest therapy puppy enter my life when I was at one of my lowest points, I wouldn't have believed you. If you would've told me this illness would've altered the career path I had seen myself pursuing since I was seven years old when I began college, I wouldn't have believed you. If you would've told me some of the people I have become closest to are doctors and nurses, I wouldn't have believed you. If you would've told me that me getting sick was what brought Casey Fleming and I closer than we've ever been, I wouldn't have believed you. If you would've told me the girl who ran away from her flu shot in fifth grade and hid in HEB would have countless blood draws and painful IV's started, I wouldn't have believed you. If you would've told me the girl who had never been on the inpatient floor that she would spend over a year of her junior/senior year in hospitals across the country, I wouldn't have believed you. If you would've told me that when I passed out in Devon Johnson's bathroom while getting ready for freshman homecoming and she took care of me was just the start of Devon being there for me through all sorts of health challenges, I wouldn't have believed you. If you would've told me when I missed my first Family Camp in eight years that this Labor Day weekend I would be going on my second run as Head Counselor, I wouldn't have believed you. If you would've told me the girl who played high school basketball that one day she wouldn't even be able to walk to class due to fatigue and would require quarterly back procedures, I wouldn't have believed you. If you would've told me the girl who's favorite bible verse was 1 Timothy 4:12 (just because you're young doesn't mean you can't make a difference), that she would soon have people tell her that her life inspired them, I wouldn't have believed you. If you would've told me that the independent high school girl who refused to ask for help even when she was in way over her head would soon require daily help, I wouldn't have believed you.  If you would've told me not being in the "cabin" at Camp Travis and instead sleeping in the nurses office would've lead to me meeting two of the greatest mentors and friends (Claire Raabe & Erinn Overby), I wouldn't have believed you. If you would've told me I would be driving a motorized wheelchair at age 19 instead of a car, I wouldn't have believed you. If you would've told me that I would meet my best friend due to having the same chronic illness (Hailey Watts), I wouldn't have believed you. If you would've told me the girl who lives, breathes and thrives off of social interaction with others would soon face social isolation, I wouldn't have believed you. If you would've told me that passing out at Young Life and being carried out by guys I had never met before (Taylor Sutlive, Austin Greer, Michael Fanning, Hayden Weir & Colton Wilson) would've lead to me finding "my boys", I would've never believed you. If you would've told me that the girl who had constantly chosen joy her whole life that she would face extreme depression and anxiety, I wouldn't have believed you.  If you would've told me at my first Dr. Patel appointment that I would meet the most incredible girl who would forever change my outlook on life (Kaylee Carew), I would've never believed you. If you would've told me the girl who was always searching for inspiration in people who had faced trials would soon face a massive on going trial of her own, I wouldn't have believed you. If you would've told me during those dark days at Texas Children's that I would still be alive and breathing, five years later-there's no way in heck I would've believed you.
   The crazy thing is, all these things DID come true. The Lord's plan for my life is far beyond what I will ever be able to understand or comprehend and some days that's hard to fathom. However, at the end of the day, I sure am glad He's in charge and not me. How underserving am I of a Jesus who loves me through thick & thin.
   Jesus cried, so today I will too, for a variety of reasons. Tears of joy, tears of accomplishment, tears of mourning of a life lost, tears of sadness, tears from depression, tears from social isolation, tears from anxiety of fear of the future, tears from excitement of what's to come, tears of thankfulness, tears of gratitude and tears just because today is hard. Life is hard, but God is good.
       Lord, not my will but Yours be done.

thanksgiving

Freshman year, I am thankful for you. 

I am thankful for a God who provides hope and who preforms miracles and provides blessings daily. I am thankful for getting to sit front row for every home football game. I am thankful for Kappa Kappa Gamma teaching me how to be myself and how to be vulnerable. I am thankful for the fact I’m forever done with dining hall food. I am thankful for Netflix and its ability to transplant me to another world on days I just need a break from everything. I am thankful for homemade Rice Krispie Treats & Reese’s Peanut Butter Cups. I am thankful for the new restaurants that have developed in Waco-and the local gems I have found. I am thankful for the hospitality and family orientated atmosphere Waco offers. I am thankful that my dad hasn't broken his promise-we’ve never gone over five weeks without seeing each other. I am thankful for how my sweet Sadie greets me every time I get home with plentiful kisses and love and snuggles. I am thankful for how decorating made my 10 x 10 dorm room feel like home. I am thankful for ESPN and sports, who keep me company when studying alone. I am thankful for gifts of love delivered at just the right time. I am thankful the ability to live in a college dorm, something I thought I may never be able to experience. I am thankful for technology and it’s ability to keep me in touch with those who matter most to me. I am thankful for timely phone calls and texts of wisdom when encouragement is needed most. I am thankful for coloring books that calm me down and pillows to scream into. I am thankful for the college experience and the further appreciation it has given me for higher education, as well as the incredible home I was raised in. I am thankful for the dozens of pictures on my walls that remind me of where I come from, all the good memories of my past and all the people in my life I have cheering me on. I am thankful for the new appreciation college has given me for sleep and how it has fine tuned my time management skills. I am thankful for how Baylor has made me learn and study in new ways. I am thankful for people who remind me I’m beautiful, especially as I struggle this year with weight gain, self esteem and self concept. I am thankful for a God who loves me and calls me His daughter-regardless of my GPA. I am thankful for the hours of sleep when I desperately needed them and parents who have supported me in every capacity they’re able to. I am thankful for friends who have stayed loyal and true, throughout my trials. I am thankful that His mercies are new every morning. I am thankful that my medical condition has shaped me to be ever more thankful for the little things. I am thankful for people who keep me in check.  I am thankful for the multiple opportunities I have been provided that have furthered my interest in ministry. 

I am thankful that my health allowed me to do what many said was impossible. I am thankful for the world’s greatest parents who show me daily what Christ like love looks like. I am thankful for accommodating and wonderful doctors. I am thankful for modern medicine. I am thankful for prayers that got me through on days I didn’t think I could go on any longer. I am thankful for Kappa Kappa Gamma and the wisdom I have gained from this experience. I am thankful for a Lord who loves me at my darkest. I am thankful for people I don’t even know who have made my dream of going away to college possible. I am thankful for a year of gaining knowledge. I am thankful for being stretched academically in ways I’ve never been before. I am thankful for sorority sisters who I can always rely on to make me laugh. I am thankful for the sacrifices my family has made so I can attend Baylor. I am thankful for understanding and caring professors. I am thankful for the new experiences, cultures and ideas going to a University has exposed me to by giving me a new perspective on a variety of topics. I am thankful for the memory of Kaylee Carew and how her legacy inspires me daily. I am thankful for the city of Waco, that which I have become quite fond of. I am thankful for parents and doctors who have never crushed or doubted my wildest dreams, but rather encouraged and supported me along the way. I am thankful for friendships, both old and new, that have provided laughter, happiness and the reminder that I’m never alone. I am thankful for the abundance of new things that college has allowed me to experience. I am thankful for the way He has revealed to me the weaknesses in my faith this year and has used them to humble me. I am thankful for a major that has allowed me to take classes in a field I’ve been passionate about since I was seven years old. I am thankful for times of thanksgiving that remind me of how far I’ve come but also for a God who keeps me grounded and humble-I’ve got a long ways to go. I am thankful for His provision in decision making. I am thankful for Baylor University-the incredible academic institution it is and for their commitment for the students to grow in every aspect of life. I am thankful that I have a God who is bigger than my chronic depression and greater than my anxiety. I am thankful for the opportunities that have forced me to be independent and problem solve. I am thankful for the many hours of loneliness and weakness, in which He has grown me the most-He truly does make beauty from the ashes. I am thankful for mentors that have sustained me with encouragement. I am thankful for signs from the Lord on days where I doubted my decision to embark on this crazy journey. I am thankful for God continually showing me that while following His plan may never be easy, I can rest assured in that His plan is far better than anything I could ever imagine.

Freshman year, I am thankful for you. Jesus, I am thankful for you.

"You are joy, You are joy, You're the reason that I sing"

Fall Season Update

Ashley started her senior year at the end of August.  It is hard to believe she is a senior and that her brother Christopher is at the same school this year.  She is taking 6 credits to graduate and is working with two Homebound teachers.  The dedicated Debby Villers is one of those teachers, who continues to help her with math.  She actually did not need a math course to graduate but wanted to take a math class to keep up her skills.  Short term memory loss and brain fog are two of the symptoms of POTS, so she is hoping to alleviate some of that with a continuation of her math skills.  Definitely a sign of her determination as math is not her favorite subject and many other electives would have been easier to take instead!!!

About three weeks into the school year, Ashley woke up on a Monday morning and said that she felt as bad as she did when she first had POTS.  I knew that meant she felt REALLY poorly and called the White Glove nurse practitioner to come to our home.  That exam did not reveal anything of significance, but Ashley woke up later with a very high fever of 103.7.  I knew that indicated something more serious and when her fever continued to stay high, David took her to the urgent care that night.  As soon as the doctor there realized how high her fever was and that she had a port, she sent them directly to the ER.

At the hospital, she was immediately placed on IV antibiotics and given fluids while blood tests were performed.  They were admitted to a room for Ashley's 5th inpatient hospital stay since March.  The timing of this stay was particularly poor as Ashley and I were scheduled to fly to Rhode Island for my brother Matthew's wedding on Wednesday!  We were determined we would still be able to go, and Ashley made it very clear to every doctor she saw that she would be at that wedding!

As the week progressed, however, that trip did not materialize.  We traded the excitement of the trip for tears of disappointment.  Blood tests revealed that there was a staph infection in her port, which led to pneumonia.  This meant that she would be treated for at least 14 days by IV antibiotics since the line from the port went directly to her heart.  This also meant that the port would have to be removed.

So, instead of being at the fairytale wedding, Ashley was scheduled for surgery during the time the wedding was taking place in Rhode Island.  Even though David and I had discussed the idea that I would make the trip anyway, I ultimately decided I could not do that and feel comfortable enough being away from Ashley given her condition.  We both truly hated to miss the wedding but are grateful for the beautiful photos!

Ashley responded well to all of the antibiotics, thankfully, but the hospital stay seemed to last forever.    She was inpatient for 21 days and also had to begin eating by mouth again since the TPN feedings had been via the port and since her GI tract was shutting down since it had not been used for so long now.  She also had her fourth feeding tube placed and started using formula feedings to supplement eating by mouth.

Once we were finally home, she focused on her school work and college applications, which she had amazingly kept up with to some degree while hospitalized.  She even managed to finish the first quarter on time due to her hard work AND found out that she was accepted to Baylor University for next fall.  That news was definitely the highlight of the fall as she has worked so hard to achieve that goal despite feeling poorly for 3 years.  Her dad and I are so proud of her!

We continue to search for answers for the constant severe abdominal pain that is made worse by eating or taking medications.  Prior to the hospitalization, Ashley and I had traveled to Kentucky to see a doctor there that places gastric pacemakers.  The doctor felt like Ashley would benefit from having one but would place a temporary one with a scope before doing surgery to place a permanent one.  While this option may eventually be used, we are trying some less invasive techniques first.

There is discussion of Ashley having her gall bladder out and/or getting a permanent feeding tube in her stomach.  She is now on her 5th feeding tube since the 4th one placed during the hospital stay became lodged against her stomach wall, and she claims this one is her last.  The side effects of having a tube in her nose are becoming more than bothersome, and now that we have finally found a formula she can tolerate, the stomach tube may be possible.

Today, she is receiving a PICC line in her arm in order to get hydration therapy and have blood draws.  Her veins are so very difficult to find and cannot hold in an IV for any length of time.  She benefits so very much from the extra fluids but is not yet far enough out from the infection to receive another port.  The three days straight of fluids at a time should alleviate the excessive passing out spells.

She has a few more colleges she wants to apply to even though Baylor has been her top choice for a while.  Her senior year has not been what she has hoped for thus far, but we pray every day for the next day to be better and for answers to be revealed.  There seems to be something else going on in addition to the POTS so finding out what that is remains on our minds.

Thank you so much for continuing to pray for Ashley's healing and continued comfort.  We all need strength and peace to get through each day and choose to always be hopeful that her health will be improved sooner rather than later.

six

1) Thank you to all of you who prayed for me to survive going to one period of regular school in order to be enrolled in Homebound. It was a difficult morning, but we made it through. It was nice experiencing the first day of school with my three brothers-taking pictures, dropping the twins off at middle school, etc. This is my prayer for senior year, and if you could pray it for/with me this year it would be much appreciated:
Dear Lord, may senior year be a year where I grow closer to You & bring hearts to You wherever I may be. May I touch people's lives by encouraging and inspiring them by Your joy that radiates through me. May I use the leadership role given to me as a senior in a positive manner, a manner in which glorifies You by setting a good example. When this special year comes to a close, may I be thankful for the memories made & lessons I learned. Whatever You may have perfectly planned for me after high school, may I be at peace with what happens & wherever You may or may not take me. My senior year is Yours Lord, Amen.
2) Yesterday afternoon, we returned to my main doctor, Dr. Patel after many months (missed monthly appointments due to hospital stays in other cities), who I actually missed dearly. I joked with him that he'll be in my bridal party one day because he's responsible for keeping me alive these last  few years-and probably will be for many more. We had an awesome appointment with him, he spent a hour and a half with us (just another reason he's the best), he addressed all of our issues we had and he spent time thinking out loud of other ideas we could try to improve my health and overall quality of life.
3) This morning, I am going to my pain management doctor to have several, several trigger point injections from down both sides of my chest down to all over every area of stomach. He also will be giving me nerve blocks for my facet joints at three disks at my low-mid back. I will be partially sedated (thank goodness) but am still nervous about remembering the procedure and the pain I may be in during and after. Thankfully, when we had my initial pain doctor appointment last week, it went SO well and was truly an answered prayer that we've found a doctor who wants to help me manage my symptoms and is a strong Christan man with a big heart, so I trust him and what he and his staff are doing. I'm also nervous about how I'll recover from the anesthesia, even though I won't be put all the way under, I have had issues recovering in the past. Our hope is that these injections will take away some of my pain-for some people it lasts a few days, others a few weeks, others a few months. However, with the amount of pain I'm in (and it's been increasing) any type of relief would be wonderful.
4) On Friday, we meet with the surgeon about the GJ tube, which with Dr. Patel's blessing, will almost certainly put in, unless the surgeon says otherwise. Dr. Patel explained to us why this tube would be different than a NG/NJ and why it would help me. Hearing his words of reassurance was a great blessing and provided me more comfort about the surgery. We will learn more details at our appointment Friday, and three doctors have already said the surgeon we're going to is excellent so that was also reassuring to hear. When I get the surgery will depend on when the surgeon is able to fit me in and also when it fits in with our schedule, as you have to spend time in the hospital after the surgery and my body recovers very slowly, so we need to find a time where my parents will be available enough to attend to me. The maximum amount of time it's safe to be on TPN is running out (although it's never really safe to be on TPN in the first place) so this tube needs to be placed soon because as soon as the weekly labs begin showing that the TPN has damaged your liver, you must get off it right away and will have irreversible damage in your liver and will live your life with a chronic liver disease.
5) On Tuesday, we are headed back to Texas Children's Hospital in Houston for some appointments. We have a cardiologist (who specializes in POTS) appointment (every new doctor we goes to asks who our cardiologist is and we knew it was smart to have one for every POTS patient so I'm finally going to one Tuesday morning) and I'll also have an EKG. Following that, I will go to an ophthalmology appointment, as I've been having some issues with my vision. On Wednesday, we will return to a POTS neurology specialist who we saw a month ago for a follow up.
6) Although it's only the second day of school, I'm already having work roll in on top of me still having to finish my college applications. (I haven't turned a single one in yet and I'm worried that someone could be taking my spot at a college I want to attend to.) Both college applications and school work (yes, you do have to work hard senior year...at least the first semester hehe) are stressful and with all that's going on with my body those tasks are increasingly difficult for me.
Those are my top six prayer requests I ask ya'll to pray for right now, but know there's several other issues going on in my life as well. I continue to try my best to make the best of each day and approach every moment with a smile on my face and a positive attitude. I really will do more in depth blog posts about what God has been teaching me lately and what's been going on in my health journey, I just can't give a time frame. Thanks for all of you who continue to pray for me and support my family & I, we are grateful to know we have a selfless, caring community ready to help in many ways (including prayer) whenever asked. What an amazing way to witness the body of Christ in action.

adios nj tube

After multiple complications with several nj tubes, today my mom & I went to the ER and my GI decided to remove my nj tube and not insert another one. We will be meeting with a surgeon as we pursue the possibility of a surgically implanted GJ tube. (I am still no longer able to take anything by mouth without extreme pain and am down to 110 pounds. I've been put back on TPN a few weeks ago, which isn't good, since I couldn't tolerate any nj formula feeds.) Prayers would be greatly appreciated for wisdom, faith and discernment as my parents, doctors and I continue to make choices and decisions in our mission to get me healthy. Once things calm down (College applications, lots of doctors appointments, boys starting football, my dad's upcoming family camp and school starting Monday is keeping my family and I very busy!) I'll do my best to write a complete blog update, because a LOT has happened since my mom wrote the last real blog post. Hope everyone has had a great summer!

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged for the Lord your God will be with you wherever you go." -Joshua 1:9

New News from Houston

We were home with Ashley for about a month prior to making our fourth hospital stop in Texas since Spring Break.  Our time there was filled with the end of school madness that always comes with four kids but was made more intense by Ashley's increased pain, fatigue, and malnourishment, coupled with the fact that she was very far behind in school and desperately wanted to finish on time in order to have somewhat of a summer.

Her pain increased due to the feeding tube formulas not being tolerated by her digestive system and especially by having the NG feeding tube replaced by the NJ feeding tube.  (The NJ tube goes through her stomach and into her lower intestine, thus, bypassing her stomach.) She had weaned herself down to a low dose of the pain medicine that was necessary after the NG was pulled out of her stomach and the NJ was placed in below her stomach.  On Thursday morning, June 12, however, she woke up with an extreme, unexplained abdominal pain and immediately needed a higher dosage of pain medicine. 

Since she had begun the fourth formula the day prior, we surmised that the pain must be due to an adverse reaction to that formula.  We stopped that formula and began to run Pedialyte through the NJ.  By Sunday, though, the pain was increasing day by day, and David and I decided that I should drive her to Houston to the ER at Texas Children's Hospital.  We arrived there at 7:00 pm and were promptly given a bed in an ER room since Ashley passed out in the triage room.  After checking the placement of her NJ via an x-ray, starting her on fluids, and making her pain more tolerable, the attending ER doctor said that Ashley would be admitted overnight.  We arrived in our room upstairs at 3:00 am.

The next morning began with a pediatric hospitalist resident doctor coming in to assess Ashley at 6:45 am.  The resident doctor reported to her team led by the attending doctor, Dr. Han, and they all came by later that morning.  They were interested in finding out what previous tests Ashley had received in San Antonio, and we expressed an interest in having certain specialists on the medical team, based on what doctors in San Antonio had recently recommended.  This process seemed to move slowly the next couple of days, while Ashley's pain increased and lack of nutrition continued. David realized how helpful it would be to come to Houston very early on Thursday morning, so he dropped everything else, got our three boys squared away with neighbors and friends, and came to Houston to be with his girls.

He arrived early Thursday morning, and we were thrilled to see him!  Before he arrived, our previous night had been a long one due to Ashley's pain and due to her port leaking and having to be deaccessed and then reaccessed.  The neurology team examined Ashley later on Thursday morning and met with us with recommendations. 

The attending neurologist, Dr. Wolf, said that Ashley was a candidate for receiving IVIG treatment, in order to give Ashley some new, healthy antibodies in her blood to overpower remaining old, unhealthy antibodies in her blood, to better fight infection.  We also learned that Ashley would have some GI testing on Friday and GI motility testing on Monday.  Overall, that day ended, leaving us all feeling more hopeful than we had felt in many, many months.

All that hope was erased the next day, however.  Dr. Wolf had discussed Ashley's case with another neurologist here at TCH.   That doctor said that he had followed the 4 patients on a long term basis that Dr. Wolf had given IVIG treatment to on an inpatient short term basis, as well as 9 other patients from the Mayo Clinic, and found that those 13 patients had not experienced much improvement in their quality of life.  However, Dr. Wolf indicated that she was still willing to give the IVIG treatment to Ashley and even said that she would give the treatment to her daughter if she was in the same state as Ashley.

We also met with Dr. Chimpintazi, a pediatric GI doctor that specializes in motility issues.  He indicated that Ashley was not in fact a candidate for the scheduled motility testing on Monday.  He said this because the motility testing is basically a two day test that requires an uncomfortable endoscopy and colonoscopy on one day and then a painful six hour motility test the next day. 

He was concerned that the pain would be so great during those two days that Ashley would not be able to survive without getting pain medicines that can skew the results of the motility testing.  In addition, he said the fact that Ashley is malnourished may skew the motility test results.  Finally, he mentioned that since we were considering IVIG treatment for Ashley's POTS, that we may put Ashley through unnecessary pain with the motility testing, if in fact the IVIG treatment worked for her.  He said that he would not have his own daughter undergo the motility testing in such a situation.

So, despite the fact that Ashley had a painful repeat GI test on Friday that may have yielded some new information, we began the weekend feeling very defeated and even more discouraged.  Ashley's pain continues to increase on a daily basis, and we still don't have answers as to what is causing her abdominal pain. 

In the meantime, we have pushed for Ashley to have a couple of tests run for something called Mastocytosis.  These tests have to be sent off site, out of state, so a week is a minimum time frame for results.  We also are waiting on the hospital here to find out if the IVIG treatment will be covered by our insurance.  The treatments cost any where from $20, 000 to $40, 000 per treatment (that is not a typo) and are usually done once a month, for perhaps several months, if positive results are seen after the first treatment.  We must also find out if Ashley can continue to receive these treatments in San Antonio.

Obviously, your prayers are still needed.  Pray for Ashley to be comfortable and pain free.  Pray for the doctors here to keep searching for answers. Pray for David and me to be rested, strong, and discerning during this most stressful and completely draining time.  Pray for our three boys, who are often living without their parents present and who are often living with distracted parents when we are present.  Pray for God to be with all of us and for this never-ending storm to end, once and for all.

And, at the risk of sounding like a broken record, tightly hug your children and fully treasure each and every moment with them.  Enjoy watching them compete in the sport they love, enjoy listening to them play their instrument of choice, enjoy watching them hop in a carload of friends to go out and have a night of fun, enjoy taking them to the vacation destination of their dreams, enjoy treating them to their favorite restaurant in honor of their birthday, enjoy traveling around the country to visit their preferred colleges, and enjoy the carefree life that comes with having healthy children.  David and I would give anything, and I mean ANYTHING, to have those moments once again with Ashley....