The Beginning:

In March of 2016, I got a terrible stomach bug, the kind that knocks you on your butt, and I actually missed 4 consecutive days of work. I never do that. So when my son suddenly fell ill overnight, I figured I'd shared my germs. But my son always rebounds quickly and even when he isn't better, he's so bored he's begging to get to school. He is too energetic to be sick; I wish I knew what that felt like! However, days later he'd hardly get out of bed. The doctor said it was a bug. But when his school had to call me to pick him up on his first day back after a week off, I took him to the ER. We were told there it could be Crohn's, something a specialist later stated I shouldn't have been told without adequate reason. This possible diagnosis combined with the fact that he was rapidly losing weight led us to a paediatric gastroenterologist. I feel lucky that we happened upon possibly the best doctor for the job right away and "Dr. D" quickly started testing.

The Tests and Hospitalisation:

Dr. D immediately ordered blood work and stool sample tests. But one day in the middle of this process, my son collapsed in our living room and we rushed him to hospital. The next week was misery for him. He had a million blood tests done and had to fast constantly. He had now lost 20 lbs in a month and even though the fasting was necessary, I couldn't help thinking it was making his appetite worse. He had a colonoscopy, endoscopy, MRI, CAT scan, and a barium enema. His body was poked and prodded in every way I could imagine. The colonoscopy couldn't be completed because of an obstruction and it caused subsequent days of pain and bleeding. My son has a high pain tolerance, but it seemed that his intestines were trapping gas and he was simply inconsolable after the colonoscopy. He couldn't sit or stand or lie down in any comfortable manner. I remember one day sitting outside the bathroom hearing him inside crying unto God for help with a maturity beyond his years. I begged God to honour his prayers and sat there feeling so utterly helpless. 

One day, his heart rate started slowing down and no one could tell me why. We were moved to the ICU where he was hooked up to heart monitors for 24 hours with alarms that would go off every time his heart rate dipped too low. They went off all night long. There's nothing like hearing sirens constantly signalling your child's possible death. It was the worst night of my life. The doctors kept saying they had no idea why this was happening and I looked at them and said, "If my son's heart stops altogether are you gonna look at me and say you don't know what happened? Because that isn't good enough." I sat up all night every night in the hospital praying, but that night in the ICU was different. If God had been a tangible man in front of me, I would've clung to his ankles and just begged repeatedly for him to save my child. I would've gripped him for hours until my knuckles were white and given anything, my own life and all it has to offer, to simply watch his heartbeat return to normal. If there's a way to do that just in spirit, then that's an accurate description of how I spent that night. 

The next day, I was pulled into the hallway and told that they had basically tested him for all the things that seemed remotely reasonable. I had been praying it wasn't Crohn's and was instead something that would clear up soon. But now, Dr. D, a very cautious doctor who was careful to not worry me unnecessarily, pulled me aside and told me to start hoping it was Crohn's. I asked why and he said if it weren't Crohn's, it was something worse. I pressed him to clarify what that meant hoping that he would say something other than the terrible place my mind had just jumped to; the place of ultimate medical fear. But upon my insistence, he said it out loud. The word you don't want to hear. The word that rips you of all security and opens up a journey of complete uncertainty that will be shrouded in trepidation. I walked down the ICU hall so my son couldn't see, leaned against the wall, and crumpled to the floor in sobs. I called my sister and when I said the word out loud myself, I cried so hard and breathlessly, no sound escaped my mouth. It was all just trapped inside my chest. It felt like dying.

His heart rate thankfully began to normalise that day and we were able to transfer back to the regular paediatric ward. I had never been so happy to see a hospital room because the ICU accommodations had been truly depressing. It was strange how quickly my standards of comfort and relief were shifting. Downgrading, really. Even though he didn't have the heart monitors on anymore, I continued to stay up all night to make sure his heart was still beating properly. If they didn't know what had caused the decline, how could they guarantee it wouldn't happen again? I was afraid to fall asleep.

At one point, we were told we might need exploratory surgery, which I wasn't thrilled about. But some of the test results negated that and I sighed a huge sigh of relief. After a week of finding nothing, we were released and told he should try to eat normally and increase his activity so he could hopefully regain strength and some normalcy. Since they had ruled everything out that they could think of, Dr. D concluded it was probably post-infection IBS. He told us the intestinal system can be easily thrown off and took the time to explain the biology of it, which my science-loving child appreciated. It made sense and I think it was most likely the wisest conclusion at the time. He said it could take time to overcome, but hopefully he would gradually improve and eventually be better. 

We ended up back in the hospital a week later and my son could hardly handle it emotionally. Despite drinking a lot of water, he had become dehydrated and could barely move. He needed to be hospitalised with an IV for a couple days. That's when we realised just how easily he could become dehydrated in this condition.

The Summer:

By now, it was summer. We had the colonoscopy repeated and it was clear, which was a good thing but only highlighted we weren't finding anything conclusive. My son had been terribly constipated for over two months now and his daily discomfort, pain, and weakness made me restless for a distinct diagnosis and recovery plan. When I asked Dr. D what was next, he said that my son's body needed a rest from testing. So we would monitor him closely and assess in a couple months where to go from there. Little did I know that in a couple months, we wouldn't be anywhere near Dr. D.

In the month or so after the hospital, I searched for signs of improvement hopeful that each day would be a step in the right direction. But my kid just wanted to lay on the floor in silence. Some days I had to persist just to get him to reply to me verbally. He was so tired and depleted, he was practically catatonic. We lived in an apartment building with parking in the basement. Normally, he'd get out of the car and run up the stairs and straight to our second floor apartment. I'd always scolded him for running ahead of me out of sight because it wasn't safe. Now I had to practically carry him and I actually wished I were shouting at him for running ahead. I wondered if I'd ever see him exert that kind of energy again.

Moments of laughter had became rare as I watched the light in my gorgeous child's beautiful eyes flicker out. I feel like for a period, I just watched him disappear and I didn't know what to do. I was basically having to force feed him because he was so nauseated he had no appetite. And when he did eat, he cramped up so badly afterwards, he started to develop a really bad association with eating. I would tell him that if he didn't eat, he was going to die and was devastated to hear his response one day when he replied, "Just let me." He had now been sick for over three months and that hope we'd had that this was something easily solvable that would resolve soon was gone. He kept asking how long this was going to last and I didn't know. I didn't want to give him false hope because he needed to pace his expectations. But the prospect of this lasting indefinitely was looming and his little heart couldn't bear the thought. Neither could mine. 

I'm a single mom who is the sole breadwinner of my little family. But I couldn't just keep going to work with a sick child at home. After the hospital, all my relatives had taken turns visiting so I could keep my job and earn some money, but they had to go home to their lives. And I wasn't making up a full-time paycheque so I couldn't afford the rent on our apartment with so many missed workdays. So we moved out, I quit my job, and we drove to my sister's thinking if I could just spend each day with him during the summer and regulate his eating habits, we'd see improvement in time for the new school year. Surely he wouldn't still be this sick in two more months. My boss said my job would be open to me later and we even ended up getting accepted into the middle school I'd been praying my son could attend the following year. We had been struggling financially the previous year and a half. But things were finally falling into place and I had a plan to put us on a good and sustainable track within the next year. We just needed the summer to get ourselves sorted with this illness. Then we could come home, find a new apartment, and regain our lives.

The Autumn and Decision to Move Home:

It's fair to say that my son perked up over the summer some but significant improvement was lacking. He was much more talkative than he had been, but this just revealed how much he was struggling. Now that he had the energy to communicate, all the frustration and depression was coming to the surface and I was desperate to find a plan of recovery for my little family. Also, his five solid months of chronic constipation flipped to chronic diarrhoea overnight and no one could tell me why. Without a change in diet or alteration of other symptoms, why would it jolt to the opposite end of the spectrum? We ended up staying in my sister's town, which was in a completely different state to our own home, for the new school year just because we had no options. My son was so excited for school! He was going to be a middle schooler. It was a big, new school. In fact, this was the first year in a brand new building. There was an opening ceremony, and a large gym, and lockers! Lockers are super thrilling to a former 5th grader. And no more uniforms! So we went and bought a bunch of new clothes and just kept focusing on the excitement of the new season ahead. He started the first week in a new school and a new state with gusto. Pained, weakened, headach-y gusto, but still. 

This is when I learned just how determined my son could be. He felt miserable. He'd had one long headache for 5 months. He had constant stomach pain, dizziness, nausea, and weakness. But he powered through the first week of full days. The second week, he was out for the count and missed school entirely. He begged me to go but I could see how poorly he was after too much exertion. If I'd taken him to school every single day, he would have powered through the next 7 hours torturously day after day. And we would've ended up back in hospital with him completely worn out. So I realised I was gonna have to decide which days were manageable for him and which weren't. This led to bitter arguments each day that I kept him off because he felt like life was passing him by and friends were moving on without him. I understood the sentiment but I couldn't watch his health continue to fail over attempts to not miss out on 6th grade. The initial joy of school had turned into another source of stress. After about a month of this trial and error with him missing days frequently, I realised this wasn't working. After building up the prospect of this new school year so much in the hopes of giving him something to strive for, giving up on it was so incredibly disappointing for him. I called my parents and asked to come home. We gave away or sold virtually all of our belongings and I sat and watched our storage unit back in our home state deplete of everything I'd fought so hard to accumulate the previous years. Everything that made up our home. We packed just a few boxes for shipping and flew halfway around the world to move back into my parents' house in a country that has truly affordable healthcare. Because, did I mention, I could no longer work, I had blown my savings by living without a job in the summer, and we had a radical amount of medical debt despite having 'good' insurance? Yea, we were kind of screwed.

We moved in with my parents and my son took the rest of the fall semester off starting again in the new year. Again he was excited for a new routine and I hoped this time would be different. He peaked in health around January when his motivation to be in school drove him to be as active as possible. After missing almost an entire semester in the fall and two solid months of school the previous spring, it lifted his spirits to have a semblance of routine again. He thrives under a sense of accomplishment so keeping up with courses even when he was having sick days felt satisfying for him. And for a while, I thought maybe we were getting somewhere. But the sick days increased in frequency until eventually, he was hardly attending a full day of school. What's worse, he stopped arguing with me about it realising he did need to rest more. It may sound weird that it was 'worse' that we weren't fighting but it just proved he was increasingly worn out. This is his last week of school and I think he's only attended a handful of full days in the past two months. And his energy, appetite, and pains are worse than they were a few months ago, which I can't just sit by and watch happen. If he were on some long road of recovery, I could help him handle that. But for us to have no plan, no treatment, and then for him to not only not get better but slowly get worse again is unacceptable.

Crazy Doctors and the Current Situation:

We are now 15 months down this line. My son has grown in height since last year but hasn't gained any weight. His weight does fluctuate a bit up and down, but always evens out around the same range. His personality has mostly returned but all of this is understandably depressing. This condition has taken its psychological toll and he's not entirely the same kid he was before. Some days, he's incredibly strong and wise about it. Other days, he's fed up and ready to give up. I think that's a totally fair spectrum for anyone with long-term sickness, but especially a child. I believe any road to recovery should be holistic. I want to see him physically, emotionally, and spiritually healthy. But now we have doctors who don't know what else to test for so they're looking to write all of it off as purely psychological. We've seen 4 specialists the past 8 months and have not been lucky enough to find another one as great as Dr. D. One insisted on repeated appointments where all she did was interview us. Our first interview lasted over an hour. I understand needing to get a full history of the circumstances. I even understand being careful to assess if this is perhaps psychosomatic or even entirely psychological. I understand needing to get a feel for me as the mother because some parents are the cause of their children's illnesses and there are the rare occasions where some crazy parents want sick kids. It's responsible to rule that out. But pushing for that to be the diagnosis because you can't find one is unfair and lazy to a detrimental level. And that is where we arrived with one such specialist who aimed the entire interview at my 12-year-old son.

She asked him to recall the dates of tests he'd had months prior and to detail his elaborate story for her. When I chimed in because he didn't remember everything, she'd basically ignore me and keep speaking to him as though I were overstepping. I honestly feel like she didn't want me there at all and I very quickly realised she was looking for this to be my fault somehow. She asked if I were still not working with the implication that I should have a job again by now, as though that were her business at all. I said I was teaching part-time at my son's school and she was virtually horrified to find out I was working near my son. She asked me if I'd deliberately searched for a job near him, as though that would be so crazy for the mother of a sick child to do. I also think that most mothers who work in schools have their children attend the same school, so it's completely normal. When I said it had just worked out that way, she dramatically sighed and said, "Oh good!" Seriously, lady?

She then asked about my son's father's medical history, which makes sense. But upon finding out that he wasn't involved in our lives and despite my clear explanation that that was the case in a way that any adult would've understood indicated the sensitivity of the situation, she looked at my son and asked him insensitive and potentially painful questions about this complicated issue. Questions he didn't have answers to and shouldn't at his age. And then she treated me like I was mishandling the situation with my son by not sharing with him all the gory details, even though she had no idea what those details were. As a grown woman, she should probably get that children can't always be burdened with a full knowledge of such affairs. And we weren't in the middle of a counselling session with someone equipped to delicately navigate such a topic. She was a medical doctor with no tact or imagination to consider the plethora of reasons a child might not understand all the possible explanations for an absent father, and she was carelessly tearing through painful topics. When I intervened, she was visibly annoyed I had spoken up again.

We have now had two doctors say that my son's weight is not a cause for concern. He went from being athletic and solid to frail and bony. You can see his rib cage clearly through his chest. You can see his pelvic bones protruding from his back. And when you touch his skin, it feels thin and you can sense the bones in a way that I don't feel you should be able to. It's like there's no muscle in his chest, just pure skin and bones. But he fits into some percentile on some generic BMI chart so they're not concerned by what they're seeing in the individual case before their eyes. When I told the above mentioned doctor that he was 20 lbs heavier when he was younger, she declared that he used to be overweight, never having seen him before. My son has never been overweight a day in his life. And telling any child that they were overweight is reckless. He barely eats and is underweight now so if he starts to regain appetite, it's possible he will be hesitant to gain weight because doctors have told him that too skinny is "healthy" and healthy is "overweight." Way to potentially give my child a body complex! One of these doctors has asked why I won't let him participate in sports. Despite the fact that I keep telling her that he doesn't ingest enough calories to be healthy so I'm not going to let him burn them all off when getting through a full day of school alone leaves him entirely exhausted, she keeps pushing me to let him do more. I bring a skinny, pale child to her office who complains of constant pain and misses school consistently and she asks why we can't just have a normal life. Seriously? That's why we're here, lady! He's currently being tested for allergies which wouldn't have presented suddenly the way his symptoms did. Even I know that, so I feel like we're just wasting our time. No one is listening to me and no one has a sense of urgency with a child who has clearly been malnourished for over a year and cannot eat without extreme pain, let alone gain a healthy amount of weight. I'm not going to watch my son waste away because he has an obscure condition no one seems to have the experience to diagnose nor the impetus to search for.

So now, he is worn out by 3-4 classes a day. He eats a small breakfast, hardly any lunch, and maybe a standard dinner for an 8-10 year old - but he's almost 13. He cannot tolerate anything sweet without throwing it up. He mostly wants to eat crackers. I have to argue with him to get him to intake enough food to stay alive. He has had the same headache for 15 months and it has actually gotten stronger in recent months to where some days, he can hardly keep his eyes open. He is in constant pain, has constant nausea, and barely sleeps. I came to the conclusion about 10 months ago that he must not be properly absorbing what he's ingesting. He eats, but doesn't gain weight and has chronic diarrhoea. He drinks more than enough water, but has all the symptoms of dehydration. He takes medication and it has zero effect on him as though it's just passing right through him. In reading about the SCD, it describes this lack of proper absorption. It says that you retain parts of the food you eat that simply act as soil for microbes in your small intestine to grow and multiply causing and furthering your illness. Meanwhile, the nutritious parts of the food are expelled. Doctors have known this can be the case for at least 100 years. And yet, as I, a non-doctor, have come to this complicated medical conclusion on my own, actual doctors have told me I'm wrong. 

So we're going to do this diet which eliminates the source of these microbes/bacteria so they can be killed off. As they die, one's condition is meant to improve. And eventually, once they are obliterated, you can attempt to pursue a healthy lifestyle again. It's worth it to try even if it's hard. As I say to my son when he doesn't want to eat, "Either way (eating or not eating) will cause you pain. We don't have the luxury of a painless option right now. So let's choose the pain that strengthens you, not the pain that weakens you." He has said in response to this diet, "I know it will suck but if I can feel better eventually, I'll do it. If you'd told me a year ago I could be better by now by just eliminating certain foods, I'd have done it. So I want to give myself the chance to feel better next year." A pretty mature response that I'm awfully proud of and I think proves this kid is not willing this condition upon himself, as some doctors believe. We've come this far, we're ready to have hope again. So, here goes! Thanks for following our journey!