“I feel bad.”


It’s late and I should be sleeping, but there are just moments in life that ask to be written about.

Tonight was a Brighter Tomorrows night. Those who know me know this is my favorite night of life, every single time it happens. Those who don’t know me now know that it’s my favorite. Moving on.

We had 37 kids RSVP. That’s amazing to me. I don’t want kids to have cancer, but if they do have cancer, I do want them to come to Brighter Tomorrows to play games with us, to laugh with us, and to have summer camp with us once every month.

One conversation (among the many that are seriously the most inspirational things in life) tonight struck me and just keeps playing over and over again in my head. That’s why I am writing and not sleeping.

There is a 7 year old boy with Ewing’s Sarcoma, a rare form of bone cancer. I know most of his story because I’ve read it, met his family, talked with others who know him. But he doesn’t know that. He just thinks I know him for him. So we’re making some crafts and I mention that he still has his port accessed (most of the time kids don’t leave with a line in if they are just going for chemo) and I ask him why that is. He tells me that it’s for radiation and goes on to explain the burns that he has from it.

He rolls down the edge of his comfy pants, and I see the red line where that burn starts. I ask him casually if it hurts (because to him, cancer is casual and a part of life…I remember) and he says “Nope, not at all.” I’m sure at some points it does because his skin is all a deep, deep red and has a rough look to it, but he gave me the right now answer which is technically what I asked for. (Kids are amazing and I love them.) Then I go on to explain to him that I had cancer as well. I explain my leg and why I didn’t need any radiation and why he does but how we are similar. And then he listens and he and his brother start asking questions.

“Do you have a scar?”
“Yes, one here and here and here.”
“How did they hook it back on?”
“With a plate and screws.”
“So you have metal on you?”
“Well, sort of. Technically I have metal in me.”
“Does that hurt?”
“Nope, not at all, and it keeps my leg on there safely.”

We giggle.

He persists…

“Does it hurt to wear your leg?”
“Nope, it’s made just for me.”
“So your foot is just in there like that, huh?”
“Yes, just like you’re doing it!”
“Wait, so you lost your hair!?”
“I sure did.”

He stops.

“I feel so bad,” he says.

I tell him not to. He tells me he feels bad for me. I tell him I’m okay and everything is good and life is great. He insists that he feels bad for me.

Life is about perspective, my friends. Look without yourself.

…because love wins.

Advertisements

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

 

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.

Words I support.


I’m tired of people romanticizing overexertion. Exhausted is not the new chic. Coffee (though {sometimes} a delicious necessity) is not a food group, and running on fumes is not admirable. Why do we hold pedestals for sleepless nights, break downs and inner turmoil? Are those things really to aspire to? Self care, balance, the ability to  know when your body, mind, and spirit need to take a step back. Those are things we should admire. We have to stop blurring the line between ‘commitment’ and self endangerment, because too many people are burning out before they have a chance to truly shine.Exertion

…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.

——

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.

 

 

The 25th year!


I think I’ve evaluated that life is often a walk to find the line between remaining optimistic and leading, and being jaded and hiding away. When I was 18, I was like most 18-year-olds and thought I knew just about everything that there was to know. And I did know enough to live through college, collect some awesome friends, do some jobs I love and decide on a wonderful boyfriend. But I certainly didn’t know everything.

It’s amazing to watch little kids look up to me and other people my age. I remember the first time that I realized they expected me to know everything for them. It’s amazing – and somewhat terrifying. But it’s a wonderful thing how loving someone and leading someone teaches you to make up your mind and be what you know you should be. That was one of the most memorable catalysts for growth in these 7 years.

So now I’m 25. I learned a lot since age 18. Here are 25 of those things.

  1. Eating healthy isn’t a fad. It decides an awful lot about how you succeed in life.
  2. You don’t know everything. Neither to do I.
  3. Apologies are real, and if they work, that’s awesome. But sometimes they don’t, and that’s likely not your fault.
  4. You never, ever, need to apologize for who you are. What you have done, yes, but who you are – no. Don’t. Ever.
  5. Mental illnesses suck, and are real, but also don’t decide a person’s character.
  6. I love Justin Bieber.
  7. God can take it when you’re angry at Him.
  8. You really aren’t likely going to know what God is always doing, but eventually you’ll make it through.
  9. Dating people is fun. Don’t be afraid to do that. Heatbreak heals. You’ll grow a lot.
  10. You don’t have to be friends with people that you don’t like.
  11. It’s okay for you to say no and have boundaries.
  12. LOVE YOURSELF. Do things that make you happy.
  13. Never stop dancing. Especially when you’re sad.
  14. Your mom and dad are people. They are different than you, and make mistakes. Not everything is their fault.
  15. Changing poopy diapers is a life skill everyone should have.
  16. Roommates found on Craigslist can be character building.
  17. Listen first. And sometimes just listen, if you have no idea what to say. You don’t always need to know what to say.
  18. Don’t walk away in the middle of an argument.
  19. Arguments and conflict are okay – learn how to fight fair and express emotions.
  20. People who look awesome sometimes make big mistakes. And things are redeemable.
  21. Driving with the windows down doesn’t get old.
  22. Smile wide, and often.
  23. Say what you mean. Try to figure out what you mean.
  24. God holds me so so so close. And I am so important.
  25. I am valuable, and should be treated as such. So are you.

So there you go. I have lots of cool things planned for the 25th year of my life. And Justin Bieber released a song for my birthday. What a guy. Have a wonderful day, lovelies!

…because love wins.

17 things I learned in the 17 years since I was diagnosed with childhood cancer.


March 11, 1998.

We never forget the days that change our lives. We never forget the moments that change our lives, as a matter of fact. I had one of those on that day. I haven’t forgotten it. I never will.

I had been walking with a limp for about 3 weeks. I was a totally healthy, vivacious, excited little girl. Here’s a picture!

Age 6. :)

Age 6. 🙂

See? Right? Totally healthy. But that knee pain I had wouldn’t go away.

On March 11th, 7:35am, I was walking to the school bus. About halfway there, I fell down. There was a serious sharp pain in my left knee. I remember thinking I didn’t want to look dumb (classic 3rd grade thought process) and it hurt. A lot a lot a lot. The bus was waiting, and it was a shorter distance to get on the bus than to go home, so I got on the bus. I went through my day, limping along, trying not to walk. I have no idea how I was even moving at all.

We had an appointment scheduled with my family doctor that afternoon. When I walked into the office, he told me that he hadn’t seen anyone ever limp like that. The reason? My femur was shattered. The reason?

Bone cancer.

I was 7 years old. I played basketball and giggled and tried to avoid going to sleep at night.

Cancer?

CANCER?

The next day started 49 weeks of chemotherapy, the removal of my leg and a procedure called Rotationplasty (You can learn about that here.) and way too many sharp needles, anesthesia and brokenhearted moments than I can consciously remember or that I should have had to go through as a human being, regardless of age.

So, in honor of the days that I have lived (happily) since then, I want to share with you 17 things that I have learned since March 11, 1998.

1. Life is short. 
Not in the cliche, “Yeah, people say that all the time…” way, but in the “Don’t wait until someone you love is dead in a car accident before you figure this out.” way. Seriously, it can all end right now, and you need to not worry what everyone thinks of you or feel bad when people don’t like you. Choose the way you want to live those short days and then do that. Live, please.

2. Kids die. 
And it sucks. It sucks way worse than someone who has lived to 80 years-old dying. I’m not saying any one life is more important than another, but I am telling you that burying my best friends (4 of them) by the age of 12 is horrendous and wrong. It’s so so so so wrong. Parents should not have to live all the years their kids were supposed to without them. Which leads me to…

3. There is a pathetic amount of money allotted for childhood cancer research. 
I had 49 weeks of poison (chemotherapy) that potentially ruined my heart, potentially took my ability to have children, and certainly made me throw up burning vomit way too many times. The saddest part is that it’s been 17 years and kids today are still taking the exact same awful drugs. With an 80% survival rate. (Which I would say is definitely much lower than 80.) And they haven’t figured out why a lot of my friends never lived and I did. There aren’t many people who took this stuff and grew into adulthood, so there’s not really a way for me to know what my future related to this stuff will bring. Please help. Follow this facebook page and do what it says: TheTruth365.

4. Haters are gonna hate.
There is a saying that goes something like, “In the world people are going to hate you, and people are going to love you, and none of it has anything to do with you.” People make bad choices when they’re mad or scared or stressed. (Thanks, Frozen!) So be graceful and don’t worry too much.

5. God is everywhere. 
You just have to let yourself listen. Even when the truth hurts. Especially when the truth hurts.

6. Illness isn’t terrifying.
Sometimes it is, I suppose, but for anyone who is the friend of someone with a chronic or serious illness, don’t leave said person or family alone. And don’t be upset if they want space or you say the wrong thing. But answer the phone at 2am, expect nothing, give real hugs, and be willing to be whatever they need.

7. You should love yourself. 
There is a complex that tends to come after someone has been through a near-death experience which includes putting everyone else first. And then putting everyone else first until that person is basically dead from never paying attention to themselves. So it’s good to take care of yourself. Paint and laugh and don’t let people use you. You deserve the best too.

8. I am handicapped. 
Lots of people are. In fact, we all are – face the fact. We all have something really wrong with our broken souls. And I think that’s a really important thing to remember when someone can’t help themselves and you have the opportunity to love them.

9. It’s not easy to talk about pain. 
I’m a professional speaker, but that doesn’t mean that it’s easy to talk through the agony that I experienced. There’s this fine line between people wanting to hear the truth and people thinking you’re asking for pity by sharing what you’ve felt. Pay no attention to those people. If you have pain, talk about it. If they choose not to listen, they lose.

10. People won’t always leave, and they won’t always leave you.
There’s my greatest fear. Now you know that. (Yay vulnerable!) I’m sure this grew from holding my friends’ hands while they died and thinking I would never be fully understood again, but in the years since that and some wonderful people in my life, I have learned that people won’t always leave. And I have learned that some people really really want to stay and love me if I let them be inside my heart. Give people a chance.

11. Healthy food isn’t just a fad. Tubing 2
Having a life threatening illness was pretty awful. But it also benefited me in great ways. Because I don’t like toxins because of that experience, I avoid them. And I am pretty particular about taking care of myself with what I put inside my body. And I know I live a more full, happier life because of it. Eat less Doritos and more broccoli. It’s worth it!

12. Downtime is not wasted time.
I laid in my bed for a really long time when I was sick. Like, about a year. And it’s clear that that time has not been wasted, even though I was doing nothing for 49 weeks. You’re human. Slow down. Life will come to you.

13. Sometimes hope just doesn’t feel real. 
There will be times in your life where you can’t hope. Where you realize that the thing that you have been hoping for for so long just isn’t going to happen. And that’s okay. Give up, cry, get mad, do whatever you need to do. Just because we don’t think there is hope doesn’t mean there isn’t. And it doesn’t mean that the days won’t get brighter again. They will.

14. Tie your brain to your heart. 
If you want to do something that really helps people, don’t just dream. Figure out what skills you need to tangibly do the work. For example, if you want to travel the world and feed homeless, start learning languages now. If you want to start a business, learn how to start a business. And then put your heart into your intellect.

15. Don’t take boredom for granted. 
I remember being 15 and telling my parents I was bored. But then I realized that I may be bored because my life is just okay at that time. And it’s not falling apart. And that means there’s goodness – and that’s not boring at all.

16. Bad things can still be bad years later, but they don’t have to rule you. 
I realize that there are some things from cancer which totally left me with PTSD. That’s the reality for my life, and I’ve accepted it. That’s pretty lame, but so are tsunamis, and I haven’t been through one of those. And some other people have to accept them in their lives. So it’s okay to not like things that happened to you. But that doesn’t mean they are in your now, or that they will take you down. Nah, there’s always healing, and always growth. And you’re good now. Just learn and live.

17. Jesus loves you. Jesus
I have tried this one out. I have searched the depth of my heart and society many times. I have watched people die, kids without parents in hospitals, and kids around the world who have no medical care and die just because of that. And there is still love – and love is the currency we should really use. Jesus is the only way to God, and there is one God, and He is Jesus’ father. And you know what? Whether you know it or not, He loves you. And He’s going to come back. Don’t wait to talk to him until your life doesn’t make sense anymore. Someone will always, always love you.

Here’s to 17 more years!

Love to you all.

…because love wins.

Beauty, beauty.


Your life is your lesson. You can’t change what people say to you, how they handle your quirks and imperfections, or even sometimes what you say when you’re not thinking. But you can learn. You can grow. And you can take everything we learned in school and make yourself the student, and life the teacher. Your life is your lesson. And you’re getting straight A’s.

…because love wins.