Weddings are dreams…if you do them right.


I got married this weekend!

Everything everyone says about the day going so fast, but being so beautiful, is right. Everything they say about being madly in love being intoxicating, is right. Everything they say about the great blessing of being surrounded by the people who love you, and who you love most, is right. They’re all right. It’s magical, but it’s only magical if you do it right. It’s only right if you’re marrying who you should marry. And if you’re upholding marriage until it’s time for marriage.

The most magical parts of our day were not the flowers (even though they were beautiful!), or the candles (which I got from the dollar store and that didn’t burn right…not that I noticed – I heard from my people), or the hair, or the makeup, or the suits. It wasn’t the “rager” we had after (the whole thing was over by 10pm), and it certainly wasn’t the tight (although also beautiful) dress I was wearing.

What was magical was Jesus. Jesus, who picked us for each other. Who made a love story out of our resistance (see any other blog post from before this about how we thought our lives should go). Jesus who changed us like water into wine, and Jesus, who was our first love. Jesus, who taught us what love is. Who teaches us what love is. Jesus, was the magic. Jesus, is the magic. Today is magical. Because marriage is Jesus’ and it can only be done as marriage, with Jesus. The rest is a sham.

Ray and I didn’t freak out about details while planning. We laughed a lot. We learned how to tie bows, and he got to watch me wander around Hobby Lobby a lot and grow his patience. We made time for our families and extended leases so that we didn’t have to live together before our marriage. We cried in the last three years as we lived in different houses, and states, and had surgery and almost cancer diagnoses, ER visits, hair loss, reconciliation of pasts, and figuring out how to fit into a new life. And we did it all together. It wasn’t easy, and it was magic too. This time with each other and Jesus, was our magic.

One of my two most favorite moments of our wedding was walking down the aisle with my father to greet my groom. After three years of up and down and changing as a person with him, there is only one person who could ever have compared to the love that my father has for me. I was proud of the man I was marrying. I was so blessed that my dad loved him so much and how much he has laid down his life for me. I am thankful that my father taught me to wait for the man who could make my life magical.

My second favorite moment, was when the man of my dreams cried while dancing our first dance with me. I have a hard time dancing – mostly because I am a white girl, but also because I have a prosthetic leg. While most people are busy working on shows for their first dance, we practiced me following him so that I didn’t step on him or my dress. It’s a vulnerable point for me. And it’s a space of challenge that only he could have worked himself into. He led me like the man of my dreams who knows exactly how to let me be independent while empowering me by holding me up in ways that people do not see. He has done physical therapy I didn’t know I needed, and he has wrapped up the broken pieces of my heart into one whole piece.

But he couldn’t do that without being led by Jesus. Half of the letter he wrote me before the wedding was Scripture. Wait for the man who doesn’t just give you himself. Wait for the man who unashamedly laughs with you while you plan for your wedding, who cries on your shoulder because he thinks you’re the most beautiful person in the world, and wait for the man who gets up the Monday after the wedding to go to work so that you can rest. Wait for the man who gives you Jesus.

Wait for the magic. Wait to see your groom until you walk down the aisle (pictures can wait until after). Wait for him to stand up and be a man. Don’t marry someone for the flowers. They will fade. Don’t marry someone for the candles. They won’t stay lit. Don’t marry someone for the sex. Married sex is the only sex that counts, and it’s not about the sex. Marry the person who you can let into the moments that make your heart break.

Wait for the man who will spin you around in front of a room of people because he can’t decide if he wants to look at you, or hold you close. Wait for the magic. Do the wedding right – it’s easy to do when the marriage is right. Wait for the right dream come true.

This is our first dance song. Here are the lyrics. Please listen and read. It is what we want people to see of our lives, which is why we picked it. The first verse is me (speaking to 25,000 this summer) and the second is him. And we have learned…nothing matters…but looking like love, Jesus, to each other, and to the world.

I hope everyone who was able to come and those who we know see that, and only that, in our wedding – and in our marriage. In our forever.

The marriage was worth the wait. The magic was worth the wait. Ray was worth the wait.

More Like Love – Ben Rector: Click here to listen

I use to think I wanted to be famous
I’d be recognized out in a crowd
But the funny thing is anytime I’ve gotten what I want
It lets me down

But now I just wanna look more like love
I just wanna look more like love
This whole world is spinning crazy
And I can’t quite keep up
It’s the one thing around here
That we don’t have quite enough of
So I just wanna look a little more
Like love

I used to think I needed all the answers
I used to need to know that I was right
I used to be afraid of things I couldn’t cover up
In black and white

But I just wanna look more like love
I just wanna look more like love
This whole world is spinning crazy
And I can’t quite keep up
It’s the one thing around here
That we don’t have quite enough of
So I just wanna look a little more
Like love

I find the farther that I climb
There’s always another line
Of mountain tops
It’s never going to stop
And the more of anything I do
The thing that always ends up true
Is getting what I want
Will never be enough

So I just wanna look more like love
I just wanna look more like love
This whole world is spinning crazy
I can’t quite keep up
It’s the one thing around here
That we don’t have quite enough of
So I just wanna look a little more
Like love

Like love

…because love wins.

first-dance

 

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I am marrying someone with a chronic illness.


I didn’t want to marry someone who had as much difficultly as I did in life. I wanted someone who had it all together – who didn’t have a hard time doing the things I do – who could take care of every part of me. Maybe somewhere in life I had been led to believe that I needed that. That I needed someone to take care of me all the time, and that there was only a specific way in which that could be done. I’ve learned differently.

So I had a list of qualities that made me think no one was good enough to do the job. They weren’t spectacular, but they were probably very different than others had. I guess I don’t really know what they all are anymore, because I think I’ve thrown those out the window in exchange for way more than I thought I needed.

Ray is perfect, for me. Not in the blah blah blah cliche way. But in the way that only God can possibly know what I need to take care of my soul, my body, and my heart.

He is a mess. And so am I. A big old beautiful mess.

When he was diagnosed with narcolepsy, I suppose that’s the time that I could have said, “Well, that’s going to be too hard, so nope.” That certainly wasn’t on my list of things I wanted in a husband. There are hard things about it. He can’t be scared because his legs will give out underneath him. (no, I’m not kidding – it’s called cataplexy) And there are certainly times in life when he’ll be scared and we can’t stop that. We have strict bed times. It’s not a lot of fun to live in the night all the way to 9:30pm before saying goodbye, but it’s what we have. The medicine is expensive, and if we don’t have it sometime in the future, we’re probably a bit out of luck. And maybe we’re naive (duh, who isn’t?) but we’ll deal with that when it comes.

Anyway, the point is, I’m marrying someone with a chronic illness. And I would recommend you do so too.

The thing is, we know we are very human because of chronic illness. I am sick, then he’s sick, and sometimes we’re sick on the same day. And those days are hard, but they are also full of love. We aren’t prideful because we are aware that it’s all pretty able to fall apart at any time. And we like our weird illnesses and the unique parts about us that challenge the other. I like to stay up late, but it’s healthier for me to go to bed. So marrying someone with narcolepsy makes me a better human – in a way I didn’t expect. Thanks God.

I’m marrying someone with a chronic illness and I’m really excited about it.

Pray for us, always, and forever, please. 🙂

…because love wins.

Narcolepsy Diagnosis: Details


happyThis bright-eyed guy was diagnosed with narcolepsy two weeks ago. For those of you who do not know what narcolepsy is, here’s a short explanation…

Essentially, the part of the brain that tells us when to sleep and wake up is a little confused (or a lot confused) in someone with the disorder. That means that while it appears often that someone with narcolepsy is sleeping a lot, they actually rarely, if ever, go through a long sleep cycle including the deep sleep that our bodies need.

The understanding by most people is that REM (rapid-eye-movement) sleep is our deepest, most refreshing kind of sleep, when that actually isn’t the case. There are three phases of non-REM sleep that happen before most of us hit REM, about 90 minutes after drifting off. Those stages are essential for immune system strengthening and repairing our bones and tissues. REM sleep is when we dream, and often when our brain processes information we didn’t during the day.

In short, someone with narcolepsy is generally sleepy all day long. And all night, unless they have insomnia, which is also possible, but I’ll talk about that in another post.

Backstory:

Because this is all new to us, I’m going to document our journey as it goes along. To start, here’s how we got to this point.

In 2013, BF (that’s my boyfriend), was diagnosed with ADHD. He was in a doctoral program at the time, graduated a high level university with a big degree in 3.5 years, and graduated with a high GPA in high school. He didn’t fit all the bill, but he had a hard time paying attention, and staying awake, in lecture. So we went with that.

He tried Adderall, which made him like the hulk. Not physically, though he is strong, but in a “I have too much intense energy and this is bad.” kind of way. Then onto Concerta and Ritalin, which helped. He was on 27mg of Concerta with a booster of 10mg of Ritalin at night after the Concerta ran out its 12 hours. (Though it doesn’t work this long for everyone)

Fast forward – he was still experiencing a fair amount of anxiety, so ended up going off of Wellbutrin, which he had been on for a couple years, and onto Lexapro. That did the trick – no more anxiety.

But then he was still reallllllly tired.

He would come home from work and sleep before eating dinner. Then would eat, and then fall back asleep. Weekends would be sleep-a-thons with lots of napping. And he just always felt crabby and tired. He couldn’t get his work done at a pace he was happy with, and had a hard time staying awake for conversations. We weren’t sure what it was, so we were just riding it out.

Diagnosis:

Then one day he fell asleep driving to work, and almost went in the ditch. That day was the end of guessing. He went in to see his general practitioner, who mentioned that he might have narcolepsy. He’s already been treated for sleep apnea, so we got his CPAP numbers checked at sleep med a week later, which were fine, and got a formal narcolepsy diagnosis. Thanks Mayo Clinic!

He also has cataplexy, which means when he feels a strong emotion, his muscles go weak. We didn’t know what that was at all, and thought it was funny that he would fall down when getting scared. (think fainting goats) But, most people who have cataplexy, if not all, have narcolepsy. So we got a name for that too.

Treatment: 

He was already taking stimulants for what now is likely a void ADHD diagnosis, so that dose was doubled to 54mg of Concerta with a 20mg booster of Ritalin in the evening. His doctor said that most people with narcolepsy take a bunch more than that, and he’s certainly not awake enough now, so we’ll see where we go on this front moving forward.

Because we requested that he be able to sleep well and not just be pretend awake his whole life, his doctor wrote him a voucher for Xyrem. It’s one of the most protected drugs in the world, and is often known as the miracle drug for people with narcolepsy, allowing them to hit non-REM deep sleep stages. We’re two weeks into a discussion with the drug company and insurance right now. It is delivered straight from the company, and has to be signed off on by many people before it is delivered to the patient. Stay tuned for updates.

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I think that’s long enough for now – no one likes overly long posts! I’ll write more soon. If you have any questions or would like any more details, please comment or send me a message!

…because love wins.