For so many of you who have followed our story I want to express to you just how grateful we are for all of your love, concern, prayer and support. This year was unprecedented and incomparable to anything else we have ever walked through and we cannot imagine having to go through any of these things without the care and encouragement you all have so freely and graciously poured out.
I have to admit I’ve done a lackluster job of keeping everyone fully up to date through all that has happened. There’s been so many shocking events that have unfolded, many of which were simultaneously occurring. Matt and I have spent the better part of the past year just trying to survive each day, keep us all alive, recover from the previous situation and prepare for the next thing that may happen. Sharing on social platforms was often the last thing on my mind which meant my updates came in sporadic spurts…and then I was absent again for extended periods of time. I sincerely apologize for this, but am so incredibly grateful for all of the love whenever I was able to be present with you all.
Many of these stories you all know, but they are now finally written down in one place. What I’ve written below are the major stories, but the minor ones, though still VERY impactful to us, weren’t included simply for the sake of brevity.
Those smaller stories such as when: Matt threw out his back and could barely walk for close to a month, Canon slipped and fell on his face on ice, the two youngest girls were stung by a swarm of red wasps, I stepped on a scorpion and my throat began to close off, the girls got HFM disease, Quinn fell and cracked her two front teeth, the rollover ATV accident with Matt and the three oldest kids inside, I cracked my toe, our family car (a Suburban) began smoking and broke down, Crew was rushed to the doctor for a possible broken wrist, Kai was rushed to the doctor with a possible broken foot etc…these minor plot lines didn’t make the cut, but sure add some even deeper context to just how insane this past year has been for us.
And now for the rest of the story…
In the fall of 2020 I was busy creating new routines, homeschooling the older 5 full-time, and entertaining two very mobile little girls now in the toddler stage. My days were pretty crazy to say the least.
In early December we began to notice some dramatic changes in Corban, our third child. He had lost weight and muscle mass, his hair was thinning, and his skin was pale. He also had a significant drop in energy and loss of appetite. All these symptoms came rapidly and were severe enough to give us great concern.
We set up a doctor appointment for early January. Our pediatrician immediately requested labs, trying to rule out everything from Lyme disease to leukemia to cancer. Within days we were referred to a GI doctor who ran a battery of tests including biopsies and a colonoscopy.
Our 11 Year Old Is Diagnosed With An Incurable Disease
On February 5, 2021 we got the diagnosis that Corban has Crohn’s disease. The doctor informed us that Crohn’s is an “incurable disease” and that he has a drug that will “fix his symptoms right up.” He believed there was no other option for treatment and scoffed at our questions about any possibility for alternative solutions.
But this was all brand new to us. The protocol they suggested would be for the duration of his life! We couldn’t take that lightly. Before putting an IV into our son’s arm every couple of weeks with an unfamiliar drug, we wanted to know more.
So we began to research. It didn’t take long to learn our initial concerns were validated by many medical studies.
We asked for Corban’s records so that we could look into other options. We pursued other opinions, met with doctors all over the country via zoom and also began working with a Nutritional Therapist to continue testing and further our research. We ordered more tests out of pocket and sought diligently to find the best possible treatment for Corban.
Texas Ice Storm Freezes Pipes & Floods Our Entire Home (And No Power)
Ten days after we learned of the Crohn’s diagnosis an unprecedented freeze swept across Texas and disrupted the entire state. Two of our pipes froze and burst in that winter storm.
We woke up the morning of February 17 to half of our downstairs under water. We were without water, and/or power, were running out of food and firewood. We joined thousands of other families who were also in need and friends/neighbors jumped in to help where they could. Insurance adjusters, plumbers, water mitigators, and contractors were in high demand. We were on wait lists, but help was weeks or more away.
The house was freezing. Internet was down, so the kids were unable to do school. No water meant bathing kids in a friend of a friend’s house.
We Hit The Road To Our First (Of 14) Temporary Homes
So we scheduled a trip to visit family. Two different cabins in Colorado were offered for our stay. We rented a van and hit the road. However, we learned pretty quickly on our epic road trip that 3 of our children get carsick…and, yes, it’s just as gross as it sounds!
We also learned just how loud nine people in a van can be, as I tried to make phone calls and continue the research about Crohn’s on the road. A couple of us struggled immensely with migraines and nausea due to the altitude changes. One of the cabins had an oxygen machine which helped Corban while we were there.
We made the most of the time together while we were away. The kids still fondly recall the mountain views, sledding, ice skating, and time with cousins.
Yet we couldn’t escape the extremely stressful circumstances. I still tried to homeschool. Matt worked remotely. We continued extensive diet research, implementing massive diet changes and completed more testing at labs along the journey. We continued to call doctors and setup online visits. We spent time on the phone with the insurance company, water mitigators and contractors.
It was extremely overwhelming to balance all we needed to while also trying to allow the kids to enjoy some of the things they wanted to do.
It took two and a half weeks for an insurance adjuster to show up at our home, which meant the house was soaking wet that entire time we had been gone.
With the growing list of things needing attention back at our house, we knew it was time to get back closer to start repairs.
Back To Texas To Move Out, On To The Next House
Life really starts to pick up at this point. Water mitigation was coming four days after our return to TX, so we needed a place to live and we needed a place fast! Hotels were either wrecked by the same storm or already booked. It was reported that people were sleeping on the floors in the lobbies of local hotels.
The nearest available house our insurance company could find was over an hour away from our day-to-day lives. At the last minute some dear friends offered their own home to us, while they moved into a guest house on their property. It was a huge blessing and bought us some time to find a long-term solution.
Surviving A Tornado In A Glass House
Exactly one month after our downstairs flooded, professionals finally showed up at our house to dry things out. We moved into a beautiful lake house offered by a friend of a friend.
The lake home was the ninth stop for our family of nine in the last month. We were completely exhausted. Yet things were at last beginning to be mended at our place and this beautiful waterfront location might just provide some rest.
The place was gorgeous! Widows overlooking the water below covered the back wall. It seemed like the perfect spot to try to enjoy the spring weather.
As we got the kids down for bed on the second night at the lake, however, our phones buzzed with a tornado warning in the area. Suddenly living in a glass house by the lake didn’t seem amazing at all. I searched the house for places to shelter the kids, while Matt stood at the windows talking with God.
We were in shock. Neither of us knew what else to do. We had nowhere else to go. The heart of the storm literally passed directly over the house. The next morning we found out the tornado touched down about 300 meters from us.
Meg Gets Shingles-The Worst Pain I’ve Ever Known
Transitions are not easy on any family, but the stresses were continuing to pile on and really beginning to take a huge toll on me physically. Being in the car for days on end with 9 people, moving over and over again, the scare of the tornado, the waiting on help with the house, the days full of packing or traveling or homeschooling (sometimes all three simultaneously!), the late nights researching Crohn’s, the learning curve to cook an entirely different way in entirely different homes with entirely different kitchens. At the same time, it was critical that I also be present, attentive, and comforting to seven little ones who are dealing with all of the chaos in their own little ways. It was all just too much!
The fast pace, mounting stress and unceasing demands brought on shingles – a viral disease that causes severely painful rashes, nerve pain, and blisters. I didn’t know what it was for almost two weeks, which means it was spreading like wildfire throughout my body. I originally thought I had pulled a muscle in my back. And when the blisters first appeared, I thought they were ant bites. But the pain became intolerably agonizing so we rushed to urgent care for a diagnosis, steroids and medicines. I have birthed seven children and can honestly say I have never known pain like shingles.
I was down for the count, and people from our church community came to our aid. Matt stayed home to help with kids and homeschooling. Meals were dropped off almost daily. One lady even did our laundry for us! A sweet couple drove our oldest daughter to ballet. Others made grocery runs. We were blown away by the love and support.
We Begin The Long & Expensive Road To Rebuild
Even though I was incredibly sick we still needed a plan to repair our house. As we talked about the need for repairs and budget we were working with, we planned to remodel the impacted area as well as add a much needed additional bedroom. Our home had only 2 bathrooms and no master bedroom or bathroom so the timing seemed great to add on some more space.
We were excited about this. It wasn’t a new idea, but a project we had dreamed of ever since we bought the home. The freeze and flood damaged the exact areas we wanted to change. With insurance covering repair costs, we chose to set aside some of our savings and opened a line of credit to cover the new addition.
The Search For An Available and Reputable Contractor
The contractor search was extremely frustrating. There were so many families like ours that had been impacted by the same storms which made finding help very difficult. Contractors start dates were scheduling 3 to 6 months out.
Some friends of ours referred a contractor they knew had an opening. We checked out some of his prior work, talked through the project, and figured out the budget. We felt good about the price and the timeline. He agreed to take on the job and start right away. We were relieved the work would begin soon and elated at the possibility of adding space for our family.
“You Are Under CPS Investigation For Medical Negligence, We Need To Meet With You Immediately!”
Monday, April 12 was a big day: Matt finally went back to work after caring for me with shingles, the contractor and his crew started demo on the house, and…Child Protective Services showed up to start an investigation. We were completely caught off guard.
Just after putting the baby girls down for a nap I received a phone call that two CPS agents were waiting at my home (the one that had flooded and was now under construction). They took one look at it and said our house was “an inhospitable place for children” and demanded to meet with me “before the end of the day.”
CPS Threatens To Take Away Our Kids
Matt rushed to meet me and the CPS agents came immediately to the lake house. Apparently one of the doctors who worked with Corban believed we should have started his/her recommended treatment by now. As a result, that doctor reported us to Child Protective Services with the claim of “medical neglect.”
We felt utterly helpless as parents. The extent of CPS’s authority is absolutely overwhelming and the possible outcomes are unimaginable. Family and friends, neighbors and co-workers, past teachers and principals were all dragged into the two month long investigation. Working with attorneys, filling out paper work, complying with the demands of case workers, putting our children through interviews…our lives were completely turned upside-down.
The more we learned about the power of an organization like CPS, the more suffocating the experience became.
I cannot adequately put into words how horrifying it is to face the possibility of losing your children. I was broken. We were broken. It is a story Matt and I still cannot share without tears. Amidst the CPS investigation it felt like we held our breath for 8 weeks and the house project seemed insignificant.
Doctors Refuse To Offer Care With Active CPS Case But CPS Refuses To Close The Case Without Proof Of Active Medical Care
In the meantime we finally settled on a treatment route we believed would be the best path forward for Corban. We called every local doctor who possibly fit the profile we wanted. None of them would see our son as long as the CPS investigation remained opened.
Each of the doctors stated their unwillingness to be subpoenaed should the case end up in court. I honestly cannot blame them, but it made things significantly more difficult for us. We desperately needed to get help for Corban and the very organization examining us for possibly neglecting treatment was now preventing us from getting treatment.
After 8 long weeks, the CPS claims of medical negligence were eventually deemed baseless and the case was dropped completely.
As soon as the case was officially closed, we scheduled the first appointment we could for Corban to see an internal medicine doctor in Nashville, TN who specializes in chronic diseases with a pediatric credential. His team has extensive experience in finding the root cause of disease and a track record of success working with Crohn’s patients. Even though we lost a great deal of time, God really provided!
Insurance Stalls, Construction Nightmares & Mold Ruins Almost Everything We Own!
Insurance made some initial payments back in mid-April for the water mitigation costs, then passed us around from claims agent to claims agent for the next three months before we made contact again. Nothing else was paid for during that time. The additional constructions costs and any additional payments made for the rental homes and added living expenses were all made by us.
We were well beyond the 8-10 week timeframe the contractor promised to complete the project. We desperately needed to see progress and instead found a major setback. On a hot day in July, Kai and I went over to check on the house. May and June had been unusually wet months and our contractor had not consistently kept the house sealed.
The rainy weather and hot temperatures created the perfect environment for all our furniture and belongings to be completely destroyed by the elements. We walked in to discover that mold had grown on just about everything we owned.
We rummaged through what had once been our home to dispose of every “soft” item including towels, mattresses, clothing, sheets, bedding, rugs, couches, chairs, lamp shades, etc. We also discovered droppings and even nests from animals who had taken up residence in our rooms while we were away.
We found mold growing in cabinets, in closets, on kitchen appliances, inside baskets, and between books. So much of what we owned had to be thrown into the trash.
Firing The Contractor
Things deteriorated pretty quickly with the contractor. We continued asking for updates on the plan, progress, and budget without any details coming back to us.
Instead of getting the work done he began to blame us for “changes to the plan” when he missed details we provided clearly and concisely in writing from the very beginning. We waited for some expensive materials to arrive that had been ordered with our funds, but they never came. We simply couldn’t work with him any longer and saw the folly in already waiting as long as we had to fire him.
It was time to find a new contractor.
Finding A New Contractor With Record High Construction Costs
Getting new bids from competent contractors was, at first, refreshing. They asked different questions and provided far more details. They planned ahead with expertise and common sense.
But when their bids started coming in, we were absolutely devastated to learn just how bad our situation was: they averaged 3x the original contractor’s estimate…and that was just to finish the job.
We also learned there was a great deal of work done by the previous contractor that needed to be undone, then redone correctly. I am not sure what was worse…knowing that more time was being lost with absolutely nothing being done on the house, or wondering if we’d be able to finish at all.
We watched hope fade along with any end date to this nightmare.
We Must Move Again…But We Have Nowhere To Go!
As we sorted through bids and prayed for a path forward, it was also time to move out of our friend’s house due to family needs of their own. However, we had nowhere else to go.
We sent a grievance letter to our insurance carrier, hoping to get them re-engaged with our claim. To be honest, we simply couldn’t afford another place to live. Months of paying for all additional living costs plus funds spent on the house project had completely depleted us. We were already drowning financially before we even started getting the bids to complete our house.
Three days before we had to move, claims agent #6 called with an apology and offer to help with housing. Yet once again, the closest thing they could offer was over an hour away.
We began to do the work for the insurance company and found an airbnb ourselves, but by the time the insurance company approved it someone else had booked dates right in the middle of our needed time frame.
We moved into that house for only one week to buy us time to find something else. We were scrambling!
Yet again, I did the work for the insurance company and found another airbnb available through the end of November. Thankfully insurance approved it in time, and we moved for a second time in one week.
Kai Breaks His Arm & Attempts To Get It Reset Without Sedation
After so much moving, it was time to take a much needed break. It was a Thursday in early October and we were exhausted on every level. Kai had a football game that night and we had no other plans for the weekend. We were excited to cheer on the team, then take it easy over the weekend.
But just after halftime Kai broke his arm in two places. We rushed him off the field and into the ER only to learn that the anesthesiologist hadn’t come to work that night. Kai opted to suffer through the doctor resetting his bones without any pain meds.
It’s another story I just cannot share without completely breaking down and crying. He was so brave, and we were so proud. He was in so much pain. We spent the weekend at another hospital waiting for an Operating Room to open up so the orthopedic doctor could finish resetting the bones and casting his arm.
While our insurance company agreed to cover the cost of the rental house, they also provided more stress with a firm deadline of December 1 to move back into our home. We didn’t want to drag out this timeline any longer, but the bids to complete were simply too high for us to consider. We desperately needed help…and God provided in so many ways!
Close to 30 people volunteered their time and resources. A contractor friend worked our project into his already insane schedule. On top of that, he also coordinated all the volunteer help to keep things moving forward. Matt and I stood in the front lawn after the first full day of work and felt something we hadn’t felt in a few months: hope.
What was accomplished was no small thing! There was daily activity and progress—friends from church, school, neighbors and even complete strangers were working hard to get our home livable again.
After moving 14 different times and spending 41 weeks out of our home, we finally moved back into the house on December 2. We got to spend the Christmas holiday together as a family in our home.
As for the house, the goal was simply to get things functional for us to move back. But the work is FAR from finished. We boarded off the unlivable, unfinished spaces and set aside any part of the project that wasn’t absolutely necessary. Since we have been back, we have dealt with critical HVAC issues, water heaters breaking down and more. The “master bedroom” is a make shift space off the dining room…I guess the best way to say it would be there’s still a LOT of work to do. We need to repair the existing issues with the house and we need to finish the remainder of the original project.
Corban is on a rigorous protocol to rid his body of some underlying mold toxins found through the continued testing. He continues to manage a very restrictive diet, takes a lot of supplements and has frequent rounds of labs/testing to check on his progress. His doctors are encouraged by the progress, yet the continued care that is required for him to address these issues is very expensive.
Our family also needs a reliable vehicle that fits all 9 of us. Everything we had saved for a new vehicle prior to this past year was used to get our family back into our house. A church donated a very old van (which I spray painted to try to make it look a bit better!) for us to have in the meantime, but we do not feel safe using it long term or for long distances beyond church or school.
Despite our family enduring so much, we are not without hope. We so badly want to stay in our home to be able to create a healthy and livable space for our family to settle into, but we want to trust the Lord in all things.
Our worst case scenario would be to continue to go into debt to finish all of the unfinished work and then just have to sell the house. Regardless of how God sees fit for this to play out, our family has grown amidst the suffering. We hope our kids, especially when life doesn’t make any sense, see Jesus as the absolutely certain and sure foundation he truly is.
Some close friends and family got together and started a Go Fund Me for our family. If you would like to read more or consider donating, click the button below.
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