“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.

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Every day is wedding day.


Today, I want to make mention of these people – who have stood by us in great times, bizarre times, and hard times. Who make us laugh, bring purpose to our lives, and who we could not be ourselves without. These are words for them:

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”

-Elizabeth Kubler Ros

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…because love wins.

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

 

“Marry your best friend. I do not say that lightly.”


“Marry your best friend. I do not say that lightly.
Really, truly find the strongest, happiest friendship
in the person you fall in love with.
Someone who speaks highly of you. Someone you can laugh with.
The kid of laughs that make your belly ache, and your nose snort.
The embarrassing, earnest, healing kind of laughs.
Wit is important. Life is too short not to love someone
who lets you be a fool with them.
Make sure they are somebody who lets you cry, too.
Despair will come.
Find someone that you want to be there with you through these times.
Most importantly, marry the one that makes passion,
love, and madness combine and course through you.
A love that will never dilute even when the waters get deep, and dark.”

…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.

 

 

Because ADHD isn’t just jokes.


BrainI know a large number of individuals who have adult ADHD (yes, as adults!). It’s a part of me that I always like to know people fully. So, that has recently opened the door of understanding that this is a widely misunderstood illness.

To just clear it up for everyone who will come in and say ADHD doesn’t exist:
1) No, not everyone who can’t pay attention has ADHD. Not everyone who makes poor choices has ADHD. Not every child is taught how to treat others, and they may not have ADHD. But that doesn’t mean that it doesn’t exist just because you haven’t been around it. So don’t judge the mother in the grocery store with the “naughty” kid.
2) ADHD symptoms can be made worse by a number of things: allergies, chemicals in food and in products, and even by some medication. So if people are particular about things, don’t tell them they are weird. You may not know why they do what they do. Be a bit flexible and help out!
3) Medicine is right for some people, and not right for others. But unless you have been there, you shouldn’t really give that opinion to someone who is there.

What a neuro-typical brain sees in someone with ADHD is often someone who doesn’t think things through before speaking (“What, are they stupid??” No, they’re often brilliant.), someone who can only make jokes and will forget what they were talking about (chronically…not like every once and a while), someone who is just “emotional” often, and someone who is generally everyone’s favorite person at the party.

But what makes me sad is that the people who make jokes, or say that they have ADHD because they stopped paying attention, or exile people because they don’t think just like they do, often don’t actually understand how lonely it is to have the illness.

So that being said, here is something that I have found very insightful as someone who doesn’t have ADHD, but loves people who do. I hope it’s helpful to you too.

b-adhd-magnet

Written by a child with ADHD:

Take My Hand

Take my hand and come with me
I want to teach you about ADHD
I need you to know, I want to explain,
I have a very different brain
Sights sounds and thoughts collide
What to do first? I can’t decide
Please understand I’m not to blame
I just can’t process things the same

Take my hand and walk with me
Let me show you about ADHD
I try to behave, I want to be good
But I sometimes forget to do as I should
Walk with me and wear my shoes
You’ll see its not the way I’d choose
I do know what I’m supposed to do
But my brain is slow getting the message through

Take my hand and talk with me
I want to tell you about ADHD
I rarely think before I talk
I often run when I should walk
It’s hard to get my school work done
My thoughts are outside having fun
I never know just where to start
I think with my feelings and see with my heart

Take my hand and stand by me
I need you to know about ADHD
It’s hard to explain but I want you to know
I can’t help letting my feelings show
Sometimes I’m angry, jealous or sad
I feel overwhelmed, frustrated and mad
I can’t concentrate and I loose all my stuff
I try really hard but it’s never enough

Take my hand and learn with me
We need to know more about ADHD
I worry a lot about getting things wrong
everything I do takes twice as long
everyday is exhausting for me
Looking through the fog of ADHD
I’m often so misunderstood
I would change in a heartbeat if I could

Take my hand and listen to me
I want to share a secret about ADHD
I want you to know there is more to me
I’m not defined by it you see
I’m sensitive, kind and lots of fun
I’m blamed for things I haven’t done
I’m the loyalist friend you’ll ever know
I just need a chance to let it show

Take my hand and look at me
Just forget about the ADHD
I have real feelings just like you
The love in my heart is just as true
I may have a brain that can never rest
But please understand I’m trying my best
I want you to know, I need you to see
I’m more than the label, I am still me!!!!

By Andrea Chesterman-Smith

…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.

Why you should let people go.


A little while ago there was an app called “Who Deleted Me?” It was designed by Anthony Kuske, whose Twitter profile says he’s from the UK and “makes websites and stuff.” This app was one of those things. The purpose of said app was to do just that – tell people who had deleted them on facebook.

Facebook is a weird, strange, awesome, and dumb thing all at once. We get to connect with anyone virtually anywhere around the world. But at the same time, we can also see all kinds of things that are left to our own imagination. Because let’s be honest – no one is as happy as their profile picture all of the time. And thinking they are can ruin your life.

So then what do we do when one of our used-to-be best friends decides they’re done and we’re not friends anymore? And then what happens when you find that out through a crazy little app? Well, if you cared, it probably sucks pretty badly. If you don’t, you’ll probably have an easier time with what I’m about to say.

If someone doesn’t want to love you, or be your friend, or doesn’t build you up even when they are your friend, it’s time to let them go. Yeah, not that easy, right? Well, it sort of is.

Why would you want to be friends with an enemy you have? Would you call up the kid who picked on you in second grade and ask them to be your best friend? No, I certainly don’t think you would. Sorry to say, but when your friend walked away (and in a dramatic way like a facebook delete to prove a point without a real conversation) they entered the same category. Either they didn’t appreciate you, or they think they will have a better life elsewhere.

I’ve had people die in my life, and I’ve had people walk away. When I was younger, both destroyed me. Now, only death hurts me. Because I only keep camp with the people who I really know love me and who will let me love them back. And it’s okay to know that someone walking away isn’t your fault. It’s the walking person’s fault.

So, if they walked away, don’t chase them. And don’t let them come back. If they cared, and they were someone to want around, they never would have left to begin with. You’re worth more than being someone’s option. They chose to have you let them go, so let them go. And don’t apologize for knowing your worth.

Strong is beautiful – you are beautiful. Smile and do something you love. Because you weren’t worth letting go.

quote

…because love wins.