Listening Lesson: Heaven Knows


Heaven Knows – Matt Hammitt:
(Listen below the text.)

With open hands, open hearts, this is how we got our start;  how we wound up here.
Oh, and seasons change, it’s okay. It doesn’t have to take away from the love we share.

And now I’m standing at a crossroads, knowing that it’s time to let go. To let go.

Heaven knows when a heart needs to go where it’s meant to be.
And it’s hard to walk away from a place you thought you’d never leave.
Oh, but I can hear Jesus calling my name, saying, “Step out onto the sea, come and find what your faith is made of. Come and live what you claim to believe and follow me.”

Oh I’ve been restless, I’ve been weary ’cause I just keep on fighting this feeling that I want to stay where somebody needs me.
But I hear Jesus saying, “Believe me.”

Listening Lesson: Just because you think life is great, good, and full of wonderful things, doesn’t mean it’s going to stay that way. Heaven knows, and it’s getting better than you could have ever imagined. 

…because love wins.

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“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.

 

 

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.

What loving someone with ADHD has taught me about being like Jesus.


Hi there. A preface – ADHD is kinda like this:

ADHD

The love of my life has ADHD.

That means that he can’t pay attention to what he wants to when he wants to.
That means that he can’t think through what will happen if he says what he’s thinking sometimes.
That means that he can’t sit still and listen to one voice for hours.
That means that he can’t always calm down his anxiety, because he can’t see clearly enough.
That means that for years he was treated poorly.
That means he thinks much less of himself than he should.
That means that he’s a brilliant man, who hasn’t always been able to live freely in that.
That means that he’s a person. A wonderful, wonderful, incredible person, with an illness.

ADHD is hard. Anyone who says that it isn’t or that it’s just a great benefit to their persona has probably not been treated, or hasn’t been stopped to be shown what their lives could be. I am not inferring that people cannot live life and be happy with ADHD. I am just saying that I stand in the position that a person with ADHD can’t know they need help because they don’t know how much better they could use their gifts if they actively treated their ADHD. Without being shown, that is. Jesus helped the sick. As we all should.

I used to be incredibly annoyed by people with ADHD. Like most people, I had no idea what it really was. I’ve made plenty of jokes about not being able to pay attention, and calling that ADHD. I used to think people with it were tactless, weren’t raised right, or had parents who just didn’t know how to discipline them. Or that they just talked more than I could handle. Of course, that can also be the case, but most of the time, it isn’t. It’s just being human with a brain with ADHD, and me wanting my life to be more comfortable.

Then I met this man.

He totally annoyed me. In fact, I knew that he had untreated ADHD, and I didn’t want to date him because of that. (I know, look at me thinking only inside the box.) I had had a few intimate relationships that didn’t go well and the other in those relationships blamed ADHD. I just didn’t really want to walk down that path again. But then I never went away, and he never went away, and it became something “we” faced rather than something just “he” faced.

I know what ADHD is now. And it’s not his fault. Nor is it his choice. Had I gone away, I wouldn’t have grown in my faith (the whole point of life) the way I have. And I would have missed the most fun, challenging, crazy, awesome, beautiful adventure of the past couple years. So I’m really glad I didn’t. And I’m glad I’ve learned these things:

1) Jesus is patient. I thought I was a lot more patient than I inherently am. 
Myyyy goooooodness, don’t pray for patience unless you want to learn how to be patient. And don’t expect to be able to handle medication trials and irrational anxiety really well if you’re not Jesus. Because I’m not Jesus, and handling those things are (were) really difficult. I definitely thought I was a patient person. And in some ways I was. Namely, when I fully understood situations, I was waiting in line or looking cool on a summer day. But when it comes to MY personal time, I wasn’t the best at that. Jesus is working on it. Thanks, ADHD!

2) I definitely apparently really don’t have a clue what is best for me. Jesus does. 
This fits well with the patience lesson as well. I didn’t exactly plan on having ADHD in my life forever. I was going to have a perfectly calm household where we ate nice popcorn in our perfectly clean living room each night. Where we each have 5 best friends and no tears. Nice ironed clothes and lots of perfect energy. Haha. That’s a little dramatic. But I wasn’t envisioning that we’d get to come up with awesome ways to work around forgetfulness for all of our life. But I also didn’t imagine having someone who wants to dance with me in the kitchen like a fool all the time either. See, Jesus knows better than me. And being organized is really actually super fun. Color coated post-it notes anyone?

3) Jesus makes people awesome. And as Christians in America, we’re bad at seeing that sometimes. 
One of the most challenging pieces for someone with mental illness of any kind is social interaction. I find that Christians (Sorry for saying this outright if it offends you.) are definitely cool with you being around as long as you’re working to “overcome” your issues by “letting Jesus have it.” When every issue is a spiritual one and they can just read the Bible and it should go away. And as long as we can all meet over coffee and they don’t have to deal with you crying, or being anxious, or fidgeting while you’re talking to them. But that’s not what Jesus did with the lady who touched his robe. He knelt down and talked with her. Just something I’ve learned that we can all do better – stop thinking that people are how they act. And sometimes we need medical care. That’s Jesus too. It’s just my job to show up and love. Not say how people need to be outright.

4) Jesus is LOTS of fun. 
Seriously. If you want to know that Jesus is fun, just try to get your brain to do something that it can’t. Usually it won’t work. But there’s always room to laugh. Everything doesn’t have to be straight laced and “perfect” to be absolutely wonderful. And sometimes the sheer unexpectedness of ADHD makes life lots of fun. I definitely see Jesus in new ways I wouldn’t have been able to before.

5) I cannot rely on my significant other to be my strength. But I can rely on Jesus. 
There have been lots of times when Ray wasn’t able to give me the attention that I needed because he just couldn’t. He didn’t try to be that way. He wasn’t a man that was just zoning out. He just couldn’t because his brain didn’t let him. And that was almost more annoying than just being able to blame someone. So I had to just go sit down with Jesus and let Him be who He was. And you know what? I’ve learned a lot about grace and Jesus’ love for me. And I’m so thankful for that.

6) Praying needs to always happen. 
ADHD has taught me to pray. And then pray some more. And some more. And some more. And to keep praying. And I’ll continue. Cuz it changes everything and makes the impossible possible. I prayed for healing for Ray. God sent me and taught me to be supportive and kind. Healing is happening.

I’ve learned tons, as we both have, but there’s a short version of what’s on the plate these days. We’ve been blessed to find some meds that work, and have been able to work through a lot of healing because of that medication slowing things down for us. And life is a lot less crazy. But I promise, there are going to be more crazy days. And those are going to teach me about Jesus, and love too.

I’m excited for that.

…because love wins.

I must dance. You must dance, too.


She stands behind the curtain, looking at the piercing eyes in the crowd. She could back down, she could hide from the stares and the judgement, and the knowledge that she will inevitably mess up this routine. She will probably fall. It won’t be perfect. 

And they expect perfect. 

“Can I do this? Will my leg even hold out? I haven’t ever tried such a thing.” 

“Dance,” God says. 

“But how?” 

“Dance with me,” He says again quietly – strong. In a way that almost demands to be trusted. 

“No one taught me how. I can’t dance like everyone else.” 

“But you follow the beat I put in you. You need to dance. You’re My music.” He whispers. His eyes are strong – confident. 

“I can trust Him. He knows my steps,” she says to herself. 

Out she steps. 

Just alone out here. 

The music starts. 

A slow, gentle, beat, as she has learned like should be – slow and gentle. 

One step, and then another. Some quick steps. A magical spin under the moving orange lights. The air is crisp, and the audience silent. 

She starts to see the life events show up on the dance floor. 

A sick child – she floats to take his hand, and brings the music to him. Soon he is smiling a most magnificent smile. 

An illness in the family – she ducks for the challenge it is to get to that ill person, but finds that music unlocks the doors to stop her from helping. Healing comes in a brilliant soft white light.

Jobs, pain, rainy days – No need to face them. They resolve themselves as she floats around them and her light shine upon them fast. 

And it occurs to her – 

“I dance to my own life. That’s my own beat. I know exactly how to dance. My life is my dance. He made this. I cannot fail if I try.” 

God steps out onto one side of the stage, opposite of where she took her place. She sees those obstacles that are life between her and Him. But she also sees that wherever He steps, those obstacles minimize to a beautiful piece of the stage – highlighting her special steps in brilliant colors. Her favorites – making her dance more freely still. 

He guides her. A hand motion there, a step there. Pointing, carrying, dancing right along. 

She’s forgotten all about the people who were once her fear, and her eyes, heart, and soul, are locked with Him. 

The stage is now covered in the most beautiful flowers. Open paths. Wide spaces, where she is entirely free. The obstacles are gone. And as He spins her like she spun as a 2 year old, He gestures to the audience. 

She stops, and takes a step towards them. The lights come up on those faces. She gasps a soft breath. Every single one is someone who has come alive because of her dance. They were strangers at one time, but she now sees them all clearly. 

Best friends. Acquaintances. Used-to-be enemies. Mom, dad, kids, boyfriend.

Everyone someone she has danced into the life of.

This is her life. This is her stage. It’s important.

And it’s magnificent.

She beams, and takes a seat on the edge of the stage. God stands proudly and in a lovely way behind her. Tears fill her eyes. She didn’t know how to dance, she thought. She didn’t know where she would step, she thought.

“But He made the music in me know where to dance.”

“And it was the performance each of these souls needed to see to bring them to life,” He says.

And she knew from that point forward that our purpose in life is to dance. To dance, just as we know how. And we all learn together with each step. 

Our lives are His symphony.  

…because love wins.