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.

 

15 Years Looks Good on Us

 I entered this one, this anniversary, weary. 

I believe apathetic is the word I used. 

Tired of dragging you up the hill just to watch you slide back down. 

I'd had enough. 

And when I've had enough, a switch just flips inside of me. It's like it doesn't bother me....until it does. 

So I told you. I said I wouldn't do this anymore. And I meant it.  

And you did something. 

It was the beginning of a series of battles to get where we need to be. And stay. It has been hard, but worth it. 

15 years looks good on us because we fought through this one and came out on the other side. A very wise mentor once told me, "If you are in the same place with God when the new year comes, and you haven't grown any, there's a problem." I'd say the same applies in marriage. 

You have grown, and I have grown this year.  15 years looks good on us. We earned it.  

I love that we still love to be together.  I love that time flies by.

 I love all the things we do together, just us and with the kids.  From the very first time we went hiking, camped, or played disc golf, to the last time we explored a new town.  

I love that you call me on your way home from work, even though it's right down the road. I love that you always want to go to the store with me, especially on our midnight runs for ice cream.  

15 years looks good on us when we are working on the deck, cars, or even boats. You are the muscles and I hand you tools.... from 9 at night to 1 in the morning.

15 years looks good on us.  While it isn't what I pictured, I have learned pictures can blind and deceive. Sometimes you have to start all over and rebuild the foundation, which is just what we have done.  The first 14 years with you were a blessing. We have always been a good team, but I am thankful for this 15th year to get where we need to be. 

Just a few short weeks to 16. How do we have a highschooler? Hope have we made it this far? Only by the grace of God who I know is bringing greater things.