How the System Failed Us and Things I Said I Would Never Do

 I have been vague because the doctors have been vague, and the only thing I know is the way my heart feels when she looks so sad or scared. Sometimes it feels worse now than in the beginning because this is so normal to her now, she isn't scared anymore. I used to wake her up with the question, "Can you walk today?" Now I don't ask. I just wait and see. And when she can't, it's just normal. 

So, this all started a long time ago, I am sure. It has been a chain of events setting off inflammation like a fire in her body, but I digress. Suffice it to say, it reared its ugly head in April. Little S started having headaches and night sweats. My Husband isn't big on the "wait and see" approach, which is probably a good thing because I am a big fan of the, "Toughen Up" approach, which has put us in a bad place a few times, so we balance each other out. 

So, as he requested, I took her to the doctor. We didn't get to see the lady she saw back when she had serum sickness, but a man instead. He told us it was allergies and that our house is probably just hot in the evenings with Spring coming, causing the sweating. He offered to check her thyroid, but I declined because he seemed confident and I have a needle phobia, which I am certain I project onto my own children. 

Fast forward a week and she began having joint pain. Now, this time I listened and acted quickly because she had serum sickness in the Fall, caused by a bad reaction to only the second antibiotic she had ever had in her life! It was brutal. Painful and debilitating. She couldn't walk, and she screamed if she was touched. She has never experienced pain like it before or since. The doctors said the best way to describe it was like glass in her joints. 

So we went back to the doctor, the lady this time, who sent her for several labs. Little S came home after complaining about pain in her arm muscles. We told her it was just from tensing up during the draw and that she would be fine. 

Some of it is a blur, but she wasn't fine. At some point, she began having issues with her muscles in her arms and legs. She began waking up unable to walk, unable to lift her arms. Some days she couldn't hold anything. Some days she couldn't bend her fingers. She hurt. She was tired. She had headaches and hot flashes and stomach pain. But then, sometimes she was okay. 

Her lab work came back with low Vitamin D and a positive ANA for autoimmunity. We got a referral in April for rheumatology. Their first opening was the end of July. I was not going to accept that. The Pediatrician told us to take her to the Atlanta ER in hopes that they would have the on call rheumatologist see her so we didn't have to wait. 

The verdict? She is constipated. Maybe the toxins are leaking into her body somehow. "Pump her full" of Ibuprofen, and wait until her appointment in July. 

...

I am not sure if any of you have read the back of the box label on Ibuprofen or knew a child who almost died from taking Ibuprofen too often, but I have. It wasn't until later that another doctor told me they should be sued for malpractice. So my choices were give her Ibuprofen daily to take away her immediate pain and deal with it on the back end or give her nothing, because there are no gentle quick acting anti inflammatory medications. Nothing like a catch 22 to make you feel like the worst mom in the world. Sara has an MTHFR mutation, so she really shouldn't have it anyway. This put us in a real bind.

I wasn't taking that for an answer. I refused, so I called every single day to see if the doctor had a cancellation. It wasn't long before she did. We got in mid-May, about 2 weeks after her labwork came back. 

I was thrilled. This was going to be the day we got answers. My baby was going to stop hurting. There is no way this was not the right place for us to be. Imagine my disappointment when the rheumatologist blew us off and told us to see neurology. 

Maybe we didn't explain it well enough? At that point, we were having an issue pinning down things. Her pains moved around. In the beginning, her hips hurt all the time. Now its her neck. In the beginning, the rough pains lasted anywhere from 30 minutes to a day. Now it can last 3 or 4 days or just flare up at night for a week. 

I will give her this. She ran the labs to be sure. All that came back was low IgA, so she referred us over to neurology. 

This was one of my first lessons I learned. Labs are not always reliable. Little S's inflammatory markers were on the high end of "normal," yet she has none of the risk factors that should cause it to be up there. She has a good diet. No gluten. No sugar. Next to no dairy. Her BMI is normal. But nobody questioned that. 

So we went through the same thing with neurology as well as with immunology after that. No openings for 6-8 months, pushing to get in, and finding nothing. (Although, at one point, we were almost certain it was Myasthenia Gravis when her test reflexed. That caused us quite a scare.) The neurologist was absolutely wonderful and so thorough. But again, labs came back normal. Her EMG came back normal. Her MRI came back normal. 

During the waiting, we also had to see a nephrologist and GI. Nephrologist wasn't really needed. She just had a wonky lab come back, so the Pediatrician referred her to be safe. GI blew it off and wanted her on a serotonin blocker, as he suggested her pain was imagined. We declined. 

The GI did find gallbladder sludge, which he quickly dismissed as "something that just happens and would probably go away." This shocked me, as she had been having pain where her gallbladder was at, hence the reason for the scan, and she was too young to have "sludge." Her gallbladder wasn't emptying properly, and we were going to ignore the signs? This is just one example of some things I found  very frustrating along the way. We aren't finding much, but what we do find, we are ignoring?

Not finding "anything" was a relief, but with each visit, I felt like we were getting further away from answers. We were at a dead end. Nobody knew what to do from there. 

After receiving no answers and seeing so many doctors, going to the ER multiple times during a bad flare up, and her symptoms getting worse, we began to look into functional medicine. 

The idea of a doctor who knows how it all works together, who will use multiple different types of approaches, and wants to treat the underlying issue instead of covering up symptoms, was very appealing at this point. Of course, insurance doesn't cover it. Figures. They're  also didn't cover the chiropractic care she began receiving in June. It was the only treatment she had been offered that really addressed some of her issues, and it was lessening her symptoms significantly. She stopped having the dizziness. Her hips stopped hurting so bad, and her debilitating flare ups reduced to once a week vs. daily. But we still didn't answers, and she still hurt. 

So in August, we began seeing a functional doctor for her. He has run tests that I have never even heard of. He was able to go through all of her labwork with me and show me what we need to address as well as all the markers that show autoimmunity. We found things that are causing issues that no doctor would have found. I KNEW something was wrong, but the doctors repeatedly dismissed it. 

I told them that Sara has pain in her chest, and that it wasn't heartburn, but they said it was impossible. 

She had an H. Pylori overgrowth. It has now been treated. 

She had pain after eating carbs. At one point she could only eat vegetables without hurting. They said it was probably just general stomach pain. Lack of a certain digestive enzyme for carbs showed in her labs. Treated. 

Glabladder sludge, not normal. Treated. 

She had parasites, a yeast overgrowth, and an overgrowth of bad bacteria. Currently still treating. 

Leaky gut. That is the next step after we kill the bad bugs. 

He was the first doctor to be able to sit down with me and explain the possible chain of events that made me say, "Yes, I noticed this when..." "She had signs of that years ago. I just didn't know." So the kettle has overflowed. 

We are currently treating her autoimmunity with no nasty side effects. We are downregulating her immune system naturally, and it is working most days. We were down to once every 2 weeks, but diet is a major factor, and Halloween exists, which set us back quite a bit. Now, as I wrote this, she has gone 5 weeks with only a little pain here or there, but no flare ups. 

We had to cut gluten out again, become more strict on sugar, minimize eggs and oats temporarily, and allow nothing processed and prepackaged. 

We have started not just buying grassfed beef like we were, but fresh beef from the farm, quail eggs, and a few other items from the farms nearby to minimize what we are purchasing at the grocery store. It was the push I needed, honestly. 

And my baby is getting better. So. Much. Better. 

Praise God!

Now....

On to the things I said I would never do. This has been a very heard season of parenting to navigate. To me, Sara is special. To others, she is just another person. So when I get frustrated that people are going out places while they are sick, and I start thinking about how sickness is what triggered the final stages of this and how much worse she will get if she does get sick, I have to remember that Little S is not a concern to them. 

There are so many more things to navigate, such as handling school. I am thankful we don't have to make the decision each morning as to whether or not she will go and if she is getting behind or what her peers will think of she needs a wheelchair that day. In fact, it is a huge relief. However, I do have a harder time getting her to focus (as opposed to before when she was quick as a whip and enjoyed every second.) I don't know when to say, "Let's just skip math today." and when to say, "You will be okay. I need you to pay attention." 

Update: I typed this in November during her after Halloween flare up. I am thrilled to say that her brain fog has (currently) subsided, and I feel like I have my girl back for the first time since April!!! 

I am learning to navigate how to figure out how she feels without being overbearing, without constantly asking or trying to help or telling her not to be too rough on her fingers when they are hurting. I have NEVER been that Mom. I said I never would be. I was always okay with climbing. What's the worst they can do? Break something? I was always okay with them venturing off. Kidnappers are NOT around every corner. Kids NEED these skills. Suddenly though, I find myself making sure she knows where her compression gloves are and carrying her padded seat inside for her if she forgets it in the car. I'm getting better. I really am. If she doesn't want those things for fear of what others will say, she will have to decide for herself if it's worth the pain she will have to endure because of it. I tried letting her make decisions on her food, but she kept making bad choices and causing herself excruciating pain, and I just couldn't watch it anymore, so I did take over that. However, as time goes by, she does see the effects of what she eats, and isn't so resentful of not being able to have the same things as others. (I'm sure it helps that we have found some treats she can bring to have when others have treats.) 

And last, but not least, I find myself making kefir and fermenting pickles. That is a bit of a story. 

I have always been into anything health related. I took College Anatomy my 11th grade year and ended with a 99. I went to school for medical language. (I originally wanted to go for occupational therapy, but I also wanted to be home with my girls, and medical language (transcription) seemed to open the door for that.) I read medical books for fun, but I have always been very reserved on any kind of medication, manmade or natural. Manmade for obvious reasons. Natural because it is hard to know what you body needs, how much of it it needs, or how it will react with your body or with other supplements. Too many people do Google searches and decide they need something or overdo a certain amount of something and end up causing issues. I digress, again. 

It wasn't until after Sara got sick and I decided I wasn't going to accept the lack of answers from the doctors, that I decided to get serious. Since April, I have spent hundreds of hours reading medical texts, books on various topics, medical journals, pouring over her 100+ labs, and interviewing people who have symptoms similar to Sara's. I need to understand this better. 

I have never been one to make things. I homeschool, so I am always in the world of kefir, kombucha, and sourdough, so I feel like I SHOULD enjoy those things, but I don't. I don't even like gardening. I just like the literal fruits of gardening. I am a practical person, a person who NEEDS to know why and how. When I get there, I am more apt to put in the effort. Well, I am there. I have seen how probiotics specifically manage her pain...so here we are. I have ordered some kefir grains and I am waiting on my fermenting weights to come in tomorrow. What is happening to me? I used to be cool. Now I am in my mid-30s making fermented pickles and telling my children why gut bacteria matters. 

I love my daughter. I love them both! I would do anything for them. I am doing everything for Little S that I possibly can to take away her pain and try to heal her without hurting her. Honestly, at this point, I am so thankful for the doctors' "refusals" to "treat" her, because it led us to where we are. She is improving and learning good habits for her health in the future. 

It breaks my heart that her "immune kettle" entered the world so full already. I know it isn't easy seeing your friends eat cinnamon rolls at the potluck or explaining why there is no bun on your burger. Some days its a struggle to convince her she needs to take her medicine, and I worry that she will not keep it up as she grows older and decides she is tired of it, but we will continue to take it one step at a time like we have done for so many things for so many years, and we will cross that bridge.....when we get to it. 

Update: Sara is happily taking her supplements because she is seeing and feeling what it is doing for her. FIVE WEEKS without the night sweats and constantly pain. She has minor pain in her legs still, but she can walk each and every morning. And play! And run and jump on the trampoline! This one is especially important because of all the special memories created on that trampoline. When Big S was 5, we bought it because she began gymnastics and wanted to practice at home. I never in a million years dreamed of all the kids that would jump on it and all the special moments that would be spent on it by them-jumping, playing games, camping, laying out and talking. We have replaced countless parts on it and it still leans sometimes. Even now that some of those kids are adults, they return and lay out under the stars. When Little S couldn't jump on it anymore, my heart shattered. I knew she was in pain to give up such a thing. It was a true balm to my heart when she began jumping on it again this Fall. ❤️

We have adjusted well over the last several weeks. We have found natural pain killers that work fast, purchased several heating pads, compression socks, and various items to help with the aches and pains (just in time for them to subside 😅). We are learning, and I am so grateful for the true healing God has led us to through functional medicine.

My girl is back. 

Almost On The Path to "Remission"

Things could be worse. 

And I'm really counting my blessings each day. 

I am tired sometimes. 

That's okay. 

Sleep-wise, I am chronically exhausted. 

Since April I don't sleep as deeply. I wake up tired. Like having a newborn. 

From her sleeping in my bed, to me waking in the middle of the night afraid she quit breathing. To now sleeping in her bed (since she has moved back to the sleep room) when she is in the middle of a flare up. 

But it's all going to be okay. It's just a season. 

In this season, I'm frustrated. So frustrated. 

I have never felt so let down by modern medicine's lack of understanding about the body. A specialist truly is just that. A specialist. They seem to lack knowledge about anything else but that one thing. 

Western medicine is great. If you are dying. I don't mean that as an insult. I was never promised anything more than what they are. It seems however, diagnostically, they are just as uncertain as the rest of us who feel forced to Google symptoms in order to get an idea of what is going on. (Something I have always hated, but recently feel I have to do.) 

And I am INCREDIBLY angry that I have been treated like the enemy, like just a dumb parent looking for attention. Like I just enjoy going to the doctor so I get a referral for every little pain or ache she complains of. 

Have we had some doctors that I felt confident had covered all their bases could before we left? Absolutely. We have had two. Out of....eight...maybe more. 

But never have I ever in my wildest dreams imagined that I would be talked down to the way I was today. Treated like a liar. Practically yelled at. My daughter being called a liar and being practically yelled at as well. Did I feel confident that he even did the first thing to make sure there was nothing he could do to give her some relief? Not. A. Chance. 

I'm beyond frustrated. My daughter is tired of going to the doctor. She doesn't want to be touched or asked questions one more time. She is tired of hurting all day long, every single day. She is wearing down, and I am just praying that her sweet spirit would just hold on a little bit longer. We are SO close. 

The Good News: 

She has started seeing a functional doctor. Not a naturopath. A functional doctor with a healthcare degree who understands how the entire body works together. 

A functional doctor who spent 2 hours with us on the first visit. A doctor who could look at my daughter's labwork up to now and tell me without a shadow of a doubt that she has an autoimmune disease. Not just that. He is a doctor who is still tracking down which kind so that we know what to watch for. A doctor who has already come up with a natural and gentle treatment plan backed by actual science. A doctor who didn't say I had to buy all my stuff from him. A doctor who finally said, "Yes. It looks like 5 different things, but it's all connected. Here is how." He showed me how. He discussed the WHY. 

I have known it. I have seen it all along, and it was a huge blessing for somebody else to finally see it without me having to say it. A doctor who didn't say, "How odd. That doesn't usually happen to children. I don't know why it happened to her. Oh well." But a doctor who said, "Easy enough. Here is how we fix it. Then we follow up to make sure it worked." 

We have some work ahead of us, but we serve a God who prepared us from the start. It was always going to be okay. 

Living With It

 We are getting closer. 

The answer is almost official. 

In my heart, I know what it is. 

And I fought with it.

My heart has ached like it never has before. 

I've cried. 

I wrestled with God.

I've gotten angry. So angry. 

And it was okay not to be okay. 

For awhile. 

But I'm okay now. 

And I know God will use it for His glory. 

We have hashed this out. 

That fire. The one she was born with, He equipped her. 

And Little S and I. We had this talk. He didn't do this to her, but he has been equipping her. And me. For years. And he has given her a Dad and an older sister that will walk forward with her in understanding.

Her refusal to give up. Her determination. Her fiery personality. Those will all help her to get through her life with a smile on her face. 

When there are days that she is exhausted and hurting, she finds things to do while she rests. She listens to an audio book. She colors. She calls a friend.

Some days I think she is handling this better than I am!

But I'm okay. And I'm ready to learn about the enemy facing us. I'm ready to find ways to adjust. I'm ready to find ways to help her get to remission. I'm ready to fight. 

I'm ready to learn how to parent without fear of the enemy. I'm RE-learning how to allow her to have the space and freedom she has always had despite my concerns. How to not constantly ask, "How are you feeling right now?" or, "Do you need help with that?" 

It's going to be a long road, but I'm moving forward and rising to the occasion. 

God prepared my heart when she was born, and now I have to be thankful for His grace in that and keep moving. 

I wasn't okay. 

But it's going to be okay. 

When she hurts, I hurt. We are just looking for answers.

I knew before she was born something wasn't right.

I knew it when she cried all the time. 

I knew it when she had a mouth full of cavities despite consistent care. 

I knew it when she was allergic to everything on the list at the allergist. 

And I knew it when she had a rare serum sickness like reaction to her first and only antibiotic back in September. 

Now it's May, and I am holding her head in my lap while she cries and asks what is wrong with her. I can't fully answer. Not yet. Because I am waiting for answers. We are waiting for answers. 

Everytime I see her dragging herself along the floor because her ankles hurt, I hurt. 

Everytime I see her sit to play with her friends at church instead of running and jumping, I hurt.

Everytime she won't eat because it hurts, I hurt. 

Everytime she looks at me with those big eyes because she has to take another supplement, another medicine, see another doctor, or get poked again, I hurt. 

Everytime she has tears in her eyes because she is terrified to be away from me in case her legs stop working, my heart feels like it is being ripped from my chest. 

Is this minor? Is it a big deal? Is this going to be a forever thing? Why is the next specialist on our list not available until July? Will we be okay to wait until then? 

Ten doctor visits, one ER visit, three specialist visits, four blood draws, and a long line of tests later. All I have is a partial piece of the puzzle. I'm trying to be thankful for just that. 

I am trying to be thankful in the waiting. Waiting for answers. 

One Step Closer

I hate the Internet. 

I really do.

From the very beginning, I have had to make it a point not to scroll...on Pinterest. Not to be active on Instagram. And definitely stay off of Facebook. 

But when I do....

I always feel about this big. 🤏

Why? 

Because I see all the Moms with so many kids. The videos where they have them walk in a line to show you that they have not 5, not 6, not 7,8, but 9 VERY well dressed kids in their beautiful house. 

Meanwhile, my heart refuses to be content with 2. 

Or the videos that show the crunchy Moms who spend their days on the farm and buy bonnets and pioneer dresses for their 4 sweet girls and little boy, showing clips of them dancing around the meadows and gathering flowers by the creek. 

Meanwhile, my heart refuses to be content with our 3/4 acres inside the city limits of our small town. 

Oh, and the videos of people teaching their children hand crafts Charlotte Mason style with a small beeswax candle burning in the background. 

Meanwhile, I couldn't do hand crafts to save my life. 

Or the videos of women who have a new born, sharing about their birth story, and how quiet and serene and lovely it was. 

Meanwhile, I screamed for the last 6 hours straight and then almost died with my last one. 

How about the husband who looks like he spends 80% of his time doting on his wife? 

Well....Come on. We know that's not true. 

Oh, those ungrateful dark areas of my heart that just refuse to be content with what I have. Lord, scrape my heart clean and start anew. 

Things don't have to look the way they look in videos. My heart, however, does have a longing for a simpler life. A life focused on what matters. And we got them one step closer. And if we got them just one step closer to breaking the generational cycle, I would say it's a win.

Whoever Marries My Firstborn

It hit me last Tuesday that my almost 15 year old does talk to boys. I have always known. She is very open with me. But the boys she talks to at church are 3 to 4 years older and more mature, so I know they are just friends. So I guess what hit me was that there are boys who might want to be actual good friends with her or date her. Most of her guy friends are in her drama group. We meet in passing and they yell, "Sam's Mom!!!" And wave and clap when I drive through to pick her up. But that's about it. 

This past week we had several end of the year activities, and I got a good glimpse of her interactions. (I so often just tell her to go have fun and leave her alone while I mingle, help set up, or take care of Little S.) They were innocent enough, but this boy kept trying to get her to go to a weekly teen event that he attends. He made comments about how he thinks she would do well on chorus, etc. Incredibly nice kid. I know his Mom, and we have all been in the same homeschool group for over 10 years. But something hit different this time, and I thought, "She has no idea he might have a crush on her." 

THEN I thought. 

She has grown so much. She is really, truly mature. Not in just a teenage way, but almost in a young adult way. (She isn't quite there, but well on her way.) 

She has grown to learn so much. About the Bible. About God. And when she has questions, she asks them in such a way that they are well thought out. 

She knows sophisticated things that I never knew as a teen and some that I don't necessarily know now, like the names or each dress style, what colors pair well with what skin tones, how to swing dance, Waltz, do the Promanade....how to properly address and interact with someone for a variety of social situations (whether it be in letter, phone call, professional in person meeting, etc.) 

THEN I thought....Whoever marries my girl will have to be one incredible guy. 

I'm not a good enough writer to put into words how amazing she is, how mature she is, how talented she is, how beautiful she is-and she doesn't even know it. 

I pray often for the Lord to send her a Godly man who loves her like Christ loves the church. That he would send her someone who is a true leader in their household and will protect her. Someone who loves their children fiercely and brings them up to be God honoring children. 

We are in a world where those guys are few and far between, but I pray she is patient enough to find one. 

My Heart

My heart is never so full as it is when there is a car full of kids. 

When there are 5 of them surrounding the kitchen table. 

When there are 7 running and playing outside in our backyard. 

When we have 3 extras on the way to church or 2 extra just spending the night. 

My heart soars when we are asked to babysit over night or even just for the evening. 

For that little bit of time, my house is just a tad fuller than before, but my heart is bursting. 

My heart is never so full as it is when the warm weather comes and we venture to the creek down the road or Farmer's Lake. 

"LINE UP, DUCKLINGS!" is how the saying goes. I spend my morning making 5 lunches, packing 5 water bottles, and 5 towels. (These days, actually, they pack their own.) 

Outshine bars, hammocks, and kayaks are but a few things God has blessed us with to have for these kids. 

My heart is never so full until I have them all with me. Swapping kids back and forth. "Mom is coming to get this one, but Dad is dropping off his off, and then we are headed to pick up one of their friends after that."

God made me with these children in mind and he inclined my heart toward them. 

But all good and beautiful things must come to an end. My heart walks outside my body in the form of 2 sweet girls, and they are being taken far away again. Words can not express the depths of my sorrow to see them leave and the worry I am having to release. I'm trying to remain thankful for the 2 sweet girls that are mine by birth, but nothing will be the same again. 

If I had the chance to do it all over again, I would love them anyway. I have no regrets. Our time was well spent laughing, playing, making memories, and learning about God. 

I am quite thankful for the years I've had to love them. No matter how far they are, that will never stop. They have changed me in ways they will never know, immeasurable ways for the better. My heart was never as full as it was that cold February day when God brought them into our lives. 

Just days after I told my Husband I didn't know what we were thinking having a second child. Just months into my exhaustion-feeling like a new mom all over again. And just one short year after becoming a mom of 2, God gifted us with 3 and 4. I didn't know that's what they would be, but that is exactly what they have become. 

And just so we are clear-If I had the chance to do it all over again, I would love them anyway.