Surgery is Complete!

 This is David, Ashley’s Dad. Ashley’s C1-C2 fusion surgery was successful! Dr. Fraser Henderson said on Tuesday that it was extra challenging due to some structural issues regarding her spine but fortunately all went extremely well. He’s such a wonderful surgeon; knowing Ashley was a bit nervous prior to the surgery, he prayed with us just before going in! Then, my highlight of the day … Ashley broke out in a soft, quiet rendition of “Sanctuary” with Angela & I … just before they wheeled her in.

She was in quite a bit of pain following surgery, as anticipated, but she’s had to push through a LOT of things in life so this was no different. Dr. H wanted her up and walking immediately so within a few hours after surgery she was up and walking and has continued to do so 3-4 times per day! Dr. H wants her walking a mile within a few months!

As for results, it’s hard to tell so soon after surgery. While a few patients with diagnoses like Ashley who’ve had this surgery have experienced amazing results immediately after, for others the changes occur gradually. One aspect that has changed right away for her has been her ability to communicate thoughts at a normal pace vs. very, very slowly, suggesting she’s getting more normal blood flow to her brain. 

As of yesterday she’s been discharged from the hospital and we’re now in a local hotel for a couple of weeks recovering. Last night was rough; my wife and I managed her pain as best we could with the discharge meds but I think Ash was fearful that our arsenal was not going to be enough. Eventually we got through it but none of us got much sleep. Hoping the rest of this weekend and next week goes more smoothly.

We’ve been inundated with support. THANK YOU!!! We are so encouraged by everyone’s loving support and can’t imagine being loved better. Blessings to each one of you!

David

p.s. Want to cheer Ashley up? Feel free to text or message her; she loves hearing from people. (Just don’t expect a reply any time soon plz.) Want to add cute pics of your dogs, kids, or anything that’ll cheer her up & make her smile? Go for it, Team Ashley!

Ashley’s C1-C2 Fusion Surgery Coming Up!

This is David Roper, Ashley’s dad, writing to update everyone.

Two years ago a friend texted me, “I’ve heard of a surgery that one woman did that seemed to cure her POTS symptoms! I thought I’d let you know because she sounds a lot like your daughter, Ashley!” And the odyssey began. 

I was skeptical at first. “How can a surgery fix what Ashley has? Her connective tissue is just made poorly.” But my friend’s text led me to learn about Jennifer Brea, a woman with, amazingly, all the same rare diagnoses as Ashley … hypermobile Ehlers Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Chronic Fatigue Syndrome (ME/CFS), Idiopathic Intracranial Hypertension (IIH), Atlanto-Axial Instability (AAI), Mast Cell Activation Disorder (MCAD), Tethered Spinal Cord, Gastroparesis … to name a few. Jennifer created an incredible documentary titled “Unrest” (available on YouTube) which documents her struggles with Chronic Fatigue Syndrome (and the numerous doctors that didn’t believe her and/or tried but had no answers). But one doctor saw her film and reached out to her saying, “I think I know what’s wrong with you. I think you have hEDS. And I do a surgery that might help you.” (You can read Jennifer Brea’s fascinating story here.)

Ultimately, this doctor explained what I have come to learn:

Tendons hold muscles to bones and ligaments hold bones to bones. What holds tendons and ligaments in place is “connective tissue.” In people with hEDS, their connective tissue becomes lax, not holding things in place very well. Our brains and skulls are very heavy and sit atop our spinal column, held in place by connective tissue, ligaments and tendons. Over time, as we turn our heads thousands of times a year (and potentially have some traumas from falls, sports, etc.) that connective tissue becomes increasingly lax. Over time, as that connective tissue gets more and more lax, some people who have hEDS experience their head gradually “settling” lower, compressing the top vertebrae (C1) into the second vertebrae (C2). However, there is a crucial artery and nerve that runs to/from the brain to the rest of the body that exits between C1 and C2. If C1 is being compressed into C2 (as in when they stand or sit up, they can experience significant problems as a result of diminished blood flow and nerve performance. (Ashley struggles with chronic headaches, migraines, “brain fog”, intracranial pressure, intermittent vision issues, significant fatigue, slow healing, gastrointestinal issues and pain, hot/cold sensitivity, difficulty with loud noise and bright lights, etc.)

Hence, a C1-C2 fusion surgery (in which they take 2 small bones from a cadaver and screw them onto the sides of C1-C2 to keep that space open the proper amount) can help some patients tremendously! Jeff Woods, a person who has had this surgery, lays this out beautifully in greater detail on his website. (His story is pretty remarkable, with him being in the hospital for four months and figuring out the cause for his problem but multiple doctors refused to read the medical journal articles he had highlighted right next to him on his bedside, explaining what he believed to be the solution … a C1-C2 fusion. His story and Jennifer Brea’s are similar to Ashley’s in so many ways … pain, struggles, some doctors trying, other doctors not believing, struggles to live life, etc. Remarkable to have found people who’ve had similar life experiences … and found something that actually helps!)

So, Ashley will have the C1-C2 fusion surgery on April 29, 2025 via Dr. Fraser Henderson in Maryland, the same neurosurgeon who handled her tethered spinal cord release surgery. Recovery will be hard for 3-6 months and may continue for another 6-12 months after that. 

Note that this is not a “cure” for her hEDS; you can’t “fix” your connective tissue. And there is much she’ll have to do following her surgery and recovery to maintain improvements (extensive PT, etc.). But she (and we) are hopeful that this surgery will significantly improve her quality of life and she can get back to loving on children, hanging out with friends, and engaging with peers in church and bible studies … things that she’s been increasingly unable to do. 

Yet she is a courageous, resilient young woman who continues to persevere and believes strongly in Isaiah 41:10 (“Fear not, for I am with you, for I am your God. I will strengthen you and help you.”). Your thoughts and prayers are much appreciated, and Ashley loves receiving your encouraging text messages! (Just don’t expect her to respond while she is preparing for surgery and healing.)  

Many blessings!

David

care about rare

 Today (February 28th) is Rare Disease Day! (I don’t feel like saying “Happy Rare Disease Day” is accurate because nothing about having a rare disease is “happy”)

The fact that when I type my diagnosis on my phone or computer, spell check says it’s a word spelled inaccurately-is enough of a reason for me to advocate. 

The fact that my parents & I receive messages, texts, calls, etc of friends and friends of friends allllllll the time who they themselves or someone they love/care/know about either has a) only been promoted to talk to a doctor about their medical condition because of my story/symptoms having similarities to theirs or b) have been diagnosed with any of my conditions and feel a little less isolated or have at least some comfort, peace and hope because they’ve seen/heard/read my story-is enough of a reason for me to advocate. 

The fact that I have been told by MULTIPLE medical professionals that “it’s all in your head” or “have you tried taking a warm bath”, often because they have never encountered, treated or even heard of any of my diagnosis or anyone “like me” and/or can’t wrap their heads around the fact that someone could live day in and day out in this amount of pain when you “look normal” or “you can’t know what real pain feels like, you’re too young”-is enough of a reason for me to advocate. 

The fact that the number of doctors who will even take on “a patient like me” is such a small, small number both nationwide & worldwide that are understandably overwhelmed by responsibility of having to all do it ALL-research, advocacy, treating patients & education, etc for the sheer number of us needing specialized & comprehensive care-is enough of a reason for me to advocate. 

The fact we’ve encountered multiple doctors offices who have told us “our doctors don’t see those kinds of patients anymore-they were too frustrating and depressing” (yeah? while imagine living it day in and day out thank you very much!)-is enough of a reason for me to advocate. 

The fact that research for my conditions is severely underfunded, under researched, under educated about and there’s no specfic protocol or treatment-is enough of a reason for me to advocate. 

The sheer number of complex, chronic & also rare comorbid conditions that come along with this root cause diagnosis, conditions that are also often rare and under researched with no specfic treatment protocol & no cure-is enough of a reason for me to advocate. 

The fact that my commitment to not letting my illness define me while sharing my story, while not letting it become my sole identity, when in fact my chronic illnesses are the LEAST interesting thing about me-is enough of a reason for me to advocate. 

The fact that I have to suffer day in and day out with the root cause of my poor health being a degenerative condition with no cure-is sure as heck a reason for me to advocate. 

My question to each of you is, will you join me? #CareAboutRare

Pretty in Pink

Ashley was released from the hospital after 6 nights on Tuesday afternoon. She was thrilled to change into her own hospital gown after leaving the ICU for the last night. The nurses actually came to move her to the regular room at 2:45 in the morning! David convinced them to wait until 5:00 am instead!

She has now settled in to a comfortable and quiet bedroom with a bathroom, downstairs in the basement at our friends' house. We are SO incredibly grateful to Kevin and Yihung for opening their home to us. Being in a home for an extended time is so much better than being in a hotel.

Her progress remains steady, and we are so grateful. The doctors have been pleased as well, and she will see Dr. Henderson on Monday. We anticipate he will release her to fly back home to San Antonio once she feels up to it. She is also experiencing some post-surgery nuisances, so she will be asking about those, too.

David flew home yesterday, and we miss him terribly. He has a way of being stedfast when needed most and of adding humor at the perfect time. Our friends also have an adorable yellow lab named Angel, and the two of them became fast friends. I have a feeling they are missing each other also.

Looking ahead, we ask for prayers for Ashley's continued smooth recovery and especially for the plane ride home. She will have to sit for several hours for that, so she needs to be in minimal pain for that journey.  Our three hour flight is non-stop, fortunately.

Thank you again for all of your support and prayers. The prayers definitely worked as so many pieces we were worried about fell into place, including all three boys being safe in Texas until David's return

.

surgery sidenotes #2

Ashley has asked me to post another update on her post-surgery status. 

She remains in the ICU due a pain medication that she is receiving via IV drip. The doctor wants her to wean off this pain medicine today so that she can be moved to a regular room tomorrow. At that time, he will have her take her regular pain medicine instead to make sure it is effective before checking out of the hospital most likely on Tuesday.

Overall, Ashley has done well through all of this. Her attitude has been wonderful, although she is regularly concerned about her pain being managed due to prior experiences. She has an appetite and has short conversations, yet she is not up for doing much else like watching sports (which is one of her passions), responding to social media, etc. She does love hearing us read messages we receive, however.

Moving forward, we would ask for prayers that her pain be managed well as we transition to our friends' home here in Maryland. Ashley's body does not process oral medications properly in general, and due to previous traumatic hospital visits, we are always concerned about her pain being managed.

Thank you again for your continued prayers and concern. Knowing others are praying and care so much makes all the difference in the world.

surgery sidenotes

Hello to everyone from Baltimore, Maryland! This is Ashley's mom updating her blog on Ashley's behalf. Today is Thursday, January 23. Ashley's spinal surgery was yesterday, and we were thrilled when Dr. Henderson beautifully prayed for Ashley with all of us right beforehand.

Ashley's occult tethered cord surgery went "perfectly" according to the surgeons' reports yesterday. She was in surgery for about 3 hours and then spent a very long time in the recovery area. Due to one of the drugs that the doctor placed her on post-surgery, she is required to be in the ICU.  However, the ICU was full until about 10:00 pm that night, following her 7:30 am surgery time.

One of the surgeons, Dr. Henderson, mentioned that Ashley's spinal fluid pressure is high. While the normal range is from 0 to 5, hers was in the 20's. He indicated that this could be causing her constant headaches and frequent migraines as well as contributing to increased pain in her back. He started her on a medication to lower this pressure.

For today, Ashley will continue to stay on bed rest to protect the surgical site. She could be asked to walk to the bathroom tomorrow and might be moved to a step down unit in another room also. The doctors will make such decisions depending on how she responds to the surgery and on how well her pain is managed.

We are all so appreciative for all of your care and concern yesterday. None of us slept hardly the night before the surgery, so the messages throughout the day were so uplifting for all of us. David and I read each one to Ashley, and she kept asking to hear more of them.

In the coming days, we would ask that you continue to pray for Ashley's pain to be managed and for her body to heal sooner rather than later. We know there is power in prayer and are grateful for each and every one of them as we are grateful for each and everyone one of you.

118

“The opposite of faith isn’t doubt. It’s control.”

It’s official people!!! Surgery to release my occult tethered cord with Dr. Henderson at Doctors Community Hospital in Lanham, MD (a suburb of Baltimore and about 20 minutes from DC, also home to THE Bachelor franchise legend John Paul Jones lol) has been scheduled for January 22^nd, 2020-that’s 118 days from now! To some degree, that seems forever away but at the same time we have been on the journey to reach this point for over two and a half years so hey, what’s another 118 days, right?! As crazy as it sounds, I am EXCITED about having neurosurgery (remind me of that when I am screaming my head off in insane amounts of pain five days post op wondering why in the world I was ever excited about this), because it is an opportunity for improvement and hopefully a reduction in pain. In my journey, I have always said I didn’t want to hit at dead end. I never want to be out of options-this presents us with another option.

I had planned on splitting up this blog post into four sections, but in complete honesty I have been sleeping about 23 hours since I have returned home from Baltimore and am exhausted emotionally, physically and mentally. Hopefully in the future, I will be able to write more in depth: a summary of my Dad & I’s trip to Baltimore last week, a description and explanation of the surgery, a FAQ section regarding the surgery and a brief life update outside of the surgery, since I know there has been so much going on in my life and I have done a poor job of keeping the world updated, to which I say thank you for your constant patience and encouragement, despite my lack of updates but for now, I am going to answer the main questions I believe ya’ll will have. My hope is that this post is a “one stop shop” for questions regarding my surgery and condition is, of course rare, which is seemingly the case with everything in my life! If you are to Google “occult tethered cord”, you are going to get very, very limited results-almost all of it medical journal articles or medical conference reports done by the small handful/half a dozen doctors we’ve been working with for the past three years. They are the ones at the forefront of research, education and treatment of occult tethered cord patients, especially those who are also suffering from degenerative connective tissue disorders, like myself. I feel so honored to have been one of the patients that they have taken under their wing and into their “web of knowledge and treatment”. They are hoping to have a paper out and published in many medical journals within the next year or so, so don’t forget me when I’m famous as patient number 85qst9! **wink wink*

Main Surgery FAQ’s:

What is the exact surgery? I’m going to do my best to explain this in simple terms: We will arrive in Baltimore at least a day early as on the 21^st  (most likely flying in on the 20^th, although nothing is booked or final in regards to travel plans at this moment) as at the hospital on the 21st I will have cross typing and pre op blood work done, we will meet with the pharmacist that we will have had contact with prior to our arrival due to my complex situation and will continue to work with during my time in Baltimore and an anesthesia consult, due to my high tolerance. I will be having neurosurgery on January 22^nd at Doctor’s Community Hospital by Dr. Fraser Henderson on my occult tethered cord. The surgery will take about 3.5 hours (if all goes as planned with no complications) in which Dr. Henderson will remove roughly a three-inch section of the bone around S1 (tailbone area), pull back the dura layer that separates your skin/bone from the spinal cord and then he will clip the tethered portion of my spinal cord. In the average person, this portion of your spinal cord is .5 mm, Dr. Henderson is anticipating this portion of my spinal cord will be 1.5-2mm. Before he clips, he will do a test with the nerves and the spinal cord to make sure he’s clipping the tethered spinal cord potion (called the phylum or filum) and not any of the nerves, as to avoid paralyzing me. He will then put a patch over the dura area (that he removed to get to the spinal cord) and then will place the bone back. He is the only one of four neurosurgeons in the world who does this surgery and the only one who does it this particular way. His experience, dedication to researching these rare comorbidities with other brilliant specialists coupled with a different surgical approach, is the reason he is the best in the world-and has the best outcomes.

What is the recovery period like? To give a definite time period for my recovery period may present the greatest challenge, as my body heals very, very slowly. We’ve essentially started saying that however long they say recovery is going to take, triple it. So, this is the timetable we have been told but please keep in mind, mine will be longer-I am just a slow healer and we’re operating on the phylum of my spinal cord for peep’s sake! I will be strictly bed bound for the first three days in the hospital, and then on day three I will have my catheters removed and will be given bathroom privileges. Baring no other surgical complications, this is the day most patients usually go home, then return to Dr. Henderson for a follow up on Monday, then are asked to stay in Baltimore until the weekend, and then are allowed to return home. However, in order to leave the hospital, you must be able to have your pain controlled by oral pain meds (or in my case liquid since I don’t absorb pills well due to gastroparesis), so there is a good chance I will be in the hospital longer than that. Both of my parents will be in Baltimore with me, both there before, during and immediately following the surgery, and then most likely alternating days and nights, switching off when Dr. Henderson stops by for rounds because if you’ve ever been in a hospital or recovering from surgery yourself, you know that you are in a LOT of pain yet unable to advocate for yourself so it is absolutely necessary that you have someone there with you who’s brain is sharp and with it and can fight for you. His overseas patients (I kid you not, he sees and operates from patients all over the world) usually wait a month to six weeks to fly home, as that is when you are off strict bed rest…usually. Please continue to keep in mind this is all relative. This is spinal cord surgery, so you are recovering and have limits for a long period of time. He requires other patients to stay in the area for seven to ten days following operation as to make sure that there are no immediate concerns or post-operative complications. Again, however, I may have to stay longer as I am worried about the pain of traveling home due to the fact strict bed rest following surgery, and as you know that’s not how flying works.

What symptoms should this improve? Dr. Henderson made sure we were aware that as with most surgeries, there are no guarantees and that the main goal of this surgery is not improvement, but rather stopping the progression of symptoms, which makes sense is as over time my symptoms have worsened. However, he said with 83% of his patients (I believe that is the correct statistic, but it is high, I know that!) saw an improvement. The main areas of improvement they saw were: decreased sensation of numbness and tingling in legs, decreased pain in low back, tailbone area and legs, improvement of urology symptoms (not going to go deep into that but if you want more detailed info hmu), increase in limb strength and possible decrease in headaches, migraines and neck pain. I know this won’t be a cure all, and I am more than aware of that. However, so many of those symptoms have been progressing so to know we can be stopping them where they are sounds pretty darn good to me and improvement?! Dang, I am ALL FOR THAT! Even if it means half the headache days, or only 15% improvement in one area that is all a step in the right direction. Truth be told, we don’t know exactly what symptoms this surgery may improve or slow down because we don’t know what all the tethered cord is impacting.

How do we know this is the right decision to make? One of the things that makes diagnosing an occult tethered cord so challenging is that you aren’t able to view it on any radiology imaging, so the doctors have to go off of clinical symptoms (which I match 95% of) and urology testing that reveals you have a neurogenic bladder, which I tested positive for a neurogenic bladder type two. This is part of the reason it has taken so long to get this diagnosis, not to mention, that there are very few doctors who deal with occult tethered cord and so getting in to see them, having them talk with one another and having them all on board to operate took quite some time, as with anything operating is the last step you want to take.

Will there be a need for future surgeries? Unfortunately, there is a 20% chance that my cord could become retethered. Dr. Henderson doesn’t completely understand why this happens, and it is still something he is investigating as to why it happens. He has seen in two patients the symptoms return after a year, but most of the 20%, their symptoms return after the ten-year mark. If the testing and clinical diagnosis does in fact reveal that the tethered cord has returned, he operates again but at L1 (higher up in the spine); but that is a more difficult recovery. I don’t know what the percentage is that it comes back a third time, but it does happen/has happened, and Dr. Henderson will operate one more time if the tethered cord has returned but then he is done.

Dr. Henderson talked with us about the possibility of needing surgery at C1-C2 in my neck to correct craniocervical instability and/or surgery to address the multiple tarlov cysts in the lumbar and sacral areas of my spine. However, one neurosurgery at a time! We will see how this surgery goes first-how/if the symptoms improve, how my body handles surgery, etc.

What are you most afraid of? At the moment, there are three things at the moment I am most fearful of. The first of these being, the pain between hospital release and coming back home. If you have had surgery before, you know the transition from having IV pain medications and nurses to help you out when needed to being responsible for your pain management care with not as strong pain medication on your own that takes longer to kick in is an adjustment. With that, my amazing pain doctor, Dr. Christian Samuelson, has promised he will do anything and everything to make sure my pain is managed; but that is a much bigger challenge when you are working with other doctors and another hospital and you’re working from two different states! For those of you who don’t know, I have had some HORRIBLE experiences in the past with doctors not taking my pain seriously in and out of the hospital, leading to my pain not being well treated-leading to unbelievable amounts of screams and tears. This is my Dad’s top fear, as he absolutely does not handle seeing me in pain well. Due to prior pain mismanagement, still to this day I have nightmares about my pain not being handled well during surgery (lack of anesthesia medication and management) and following surgery and hospital and at home. It has become so bad that on my list of things to work on with a therapist, is to do EMDR to cope with some of this past trauma.

My second big fear in some ways ties in to the first, I am guessing we will want to get back home as soon as possible so we can be under the care of my pain doctor in our home state, our family can be reunited and my parents can get back to work (tied into the third fear). With that being said, you are not supposed to do sitting due to pain until weeks four to six, but the flight home would be around week two. I am absolutely terrified about the amount of pain I will be in and how in the world I will survive all it takes to get to the airport, get through security to the gate, board the plane, a three hour flight home, deplane and then drive home to San Antonio…truly just the thought of doing so right now gives me anxiety as traveling always increases my pain, I can’t imagine how much it’ll increase my pain and set me back in my recovery. So, with that being said, if anyone has a private jet that they want to let us borrow for a one way trip from Baltimore from San Antonio when I am cleared to come home so I can skip security and all the waiting in the airport and I could even lay down and take my pain meds and possibly even sleep that would be wonderful and I would love you forever! (only half kidding about the private jet part ya’ll…)

Third, I am afraid about the financial and emotional toll this surgery will have on my family. With my parents being with me in Baltimore for the actual surgery and the immediate time following, that means my Dad will be earning limited income as being a private practice psychologist, the only money he will be making is the phone call sessions he is able to take, that he will have to strategically plan. My mom will most likely have to take a leave from her job, meaning she won’t be making any income either. Saying big prayers that we don’t have any unexpected complications leaving us in Maryland for even longer than expected, requiring a longer leave from work from one or both of my parents. Thank you Jesus, we have health insurance, but Dr. Henderson does not take any insurance so yeah…neurosurgery out of pocket isn’t cheap! (Side note: I also told my parents for each neurosurgery I have they have, we have to add another gap year so hi yes this means another gap year at least is happening for your girl) Not to mention, it’s not just the cost of surgery-there’s travel and lodging expenses, medications, physical therapy and a million other little things I’m trying not to think about at the moment and instead focus on the gift that this surgery is for me-which is challenging for my brain to do in all honesty! But holy guacamole, I am so grateful for parents who are willing to sacrifice their time and money to do what is best for me-THEY ARE THE BEST! The often-forgotten ones are my brothers, Christopher will have just returned to UT for his spring semester of his sophomore year the same day we fly to Baltimore and the twins will be a few weeks into second semester senior year, without my parents here for at least ten days. (Ryan joked that my parents would be calling in the SWAT team to keep an eye of them making sure they didn’t take too many breaths which gave me a good laugh…but like no bud that’s what grandparents, family members, friends, neighbors and a community are for lol)

How are you feeling at this point facing surgery? Hearing those words from Dr. Henderson’s mouth no doubt brought tears, but tears of relief and joy. We had continued to stay dedicated to fighting this fight that Dr. Francamano had suggested we investigated all the way back Spring Break of my sophomore year of college, traveling across the state and across the country for appointments and testing, my mom spending countless hours on the phone, my late nights researching where the best doctors are and what we should pursue next, my dad working relentlessly so we can afford the appointments, treatments, surgeries and medications we need, brothers who sacrifice wants they have so those resources can go towards my medical care and sacrificing my parents time and attention when they have to focus on pressing medical needs for me. I knew coming home from our time in Baltimore I was going to be full of emotion just by the nature of all that hinged on this trip and what It represented, but the feeling I felt was not one I was planning on feeling-peace. My Dad & I both remarked that we felt peace beyond understanding, which is a peace only He can provide. Dr. Henderson seemed confident, positive and at peace, his staff answered all of our questions and are working with us in the months to come. I know my family and I are all in for a roller coaster of emotions in the weeks and months to come, but for now I am thankful for the undeniable peace He is providing my heart with, a gift I was not expecting but sure am thankful for.

I am hoping and praying I will have more energy and time to write and share with all of you as we inch closer to surgery date, as there are many more moving pieces going on in my health situation besides the tethered spinal cord, believe it or not. One of the analogies I think that does the best of describing this is the following: “Going to the doctor when you’re chronically ill is weird. It’s like imagine everything in your house is on fire, and you’re standing there, and the fire department comes in and is like, describe the fire to me and maybe we can find what caused it and put it out. And you can’t just say everything so you’re like…well the fire in the curtain is the biggest but the fire in the photo albums might be doing the most damage, also the fire in the couch is really inconvenient. Occasionally the fire guy is like, well your TV is on fire so that might be the electronic fire but that would cause other things like fire in the DVD player. And you’re like, oh yes, that’s been on fire for years. I forgot to mention it because it’s always been a relatively small fire. It’s right next to the bookshelf which has much more fire. And then the fire guy is like oh, I wouldn’t worry about that. Bookshelf fires just happen sometimes.”

Many of you have asked from the deepest kind and caring of hearts how you can best help and support us, and I hope to be able to brainstorm with my family on specific ways and share with ya’ll in the near future. We are so incredibly grateful and thankful for the way our community loves us, supports us, cares for us and continues to pray for us the challenges that each new day brings.

"I cannot tell you where tomorrow will lead, or what will be difficult or what will come with ease, but I can tell you, you are loved, and you will have what you need, and you are still being guided right where you need to be. I can tell you that even when you feel that you have lost an irredeemable amount of time, all that time, you were blooming, and not a stage of growth was missed, and you have been growing ever since. And I just hope this reminds you, your story is far from finished yet and you are allowed to find peace here, even before you know what happens next." -Morgan Harper Nichols