When everyday moments become #wheelchairprobs

I love me a good greeting card.

I give cards to the missionaries for every occasion I can think of... 

Good-bye cards when they get transferred far away,

Housewarming cards when they get transferred across town,

Baby shower cards when they find out they're training,

Graduation or retirement cards when they go home, 

Birthday cards for click days and baptism anniversaries,

Silly glitter-filled cards when I decide they need to laugh more.

Elder Fidel strikes back.

I'm a card person. (Also, a glitter person. No apologies.)

Finding the perfect card for a missionary isn't easy, though.

It would be a whole lot easier if Hallmark made a "humor" line of their ministry appreciation cards. 

Here's how the process of finding a great missionary card usually goes: 

• Enter greeting card store 
• Smile apologetically to frazzled employee who knows what a wheelchair can do in a gift shop
• Read ALL the cards in the appropriate section 
• If any of them have a unicorn on them, buy them on the spot 

• Discard anything depicting cigarettes, butts, or drinking (unless it's a 21st click-day card!) 
• Almost back into a grandma picking out a wedding card
• Discard anything that's overly sappy (I want to make them cry with my words... and glitter) 
• Having discarded them all, read them all again 
• Pick out the 4-5 funniest "clean" cards 
• Glare at them for not being perfect #thestruggleisreal 
• Remind myself that they're only going to glance at this thing for 30 seconds
• Knock over a display, or at least a few cards 
• Make accidental eye contact with that same frazzled employee
• Grab a card at random, pay for it as quickly as possible, and flee the scene

This is how I got myself kicked out of a Hallmark store. (Disclaimer: Not today.) The bull in a china shop is really a wheelchair in a gift shop, y'all. 

True story.

words.

Ever since I was a little girl, I've loved to write. 

I'd fill up notebook after notebook - probably hundreds - with stories and lists. 

As I got older, I gradually moved on to blogging. (Mostly on Tumblr... don't judge!) Fiction isn't as much fun for me as it used to be. I'd rather channel my love of writing into talking about the struggles (and joys) of living with chronic illness and disability, as well as bearing testimony of my Savior. 

More recently, even the joy of blogging has faded. Things that have happened in my life have been too personal to share with all my friends, let alone hundreds of strangers on the internet. 

Lately, most of my writing has been in the form of emails to my friends who are serving as Mormon missionaries. (The only people who still communicate with emails, right?) It's not exactly an art, but it's all I've felt like doing. 

I've been feeling weirdly guilty about neglecting my blogs. Blogging has been such an awesome force in my life. Through blogging, I connected with people who share my faith while I was living in a place where nobody around me did. I've met some awesome friends through my blogs, and I've seen other people discover the gospel and be baptized after reading believers' blogs. 

The problem isn't that I have nothing to say. The problem is that the things I care deeply about seem too heavy to be written: progressive and debilitating chronic illnesses, domestic and child abuse within the church (both my particular church and Christianity at large), political issues related to being disabled, foster care and adoption... all important topics. 

I believe in being real. I've never been one to gloss things over. (We're not counting my mantra of "I'm okay!" when I'm clearly not, because, well, I may be in horrible pain, but I'm okay.) Acknowledging the not-so-pretty things in life is important because it's only when we face our demons that we're able to fight them. 

My goal in writing, and life in general, is to glorify God. My patriarchal blessing says I'm able to use my gift of communication to relieve the hearts of others who are struggling in life and help them see the path back to their Father in Heaven. I take that ability and responsibility seriously, and I want to always use all possible mediums to do just that. I'm no missionary and I don't want to preach, but I do want to make sure that the things I say, do, and write fulfill a higher purpose. 

I know there are ways to approach those heavy topics in ways that enlighten, benefit, and uplift. I've seen others do it, and I admire them. Allowing your misery to become your ministry is a powerful thing and my greatest goal. Until I figure it out for myself, though, I'm content to stay quiet. 

Less of me, more of Him. 

Note to Self {The Day That Changed it All}

Dear Heather,

Your dad said it best. "It feels like this is all a bad dream, doesn't it?"

When you went to the orthopedic doctor for the first time today, you thought it was because one of your legs was shorter than the other. Your pediatrician sent you there because you've been having trouble walking, more than you should be, even with CMT. The new doctor suspected that it might be scoliosis, and had an x-ray of your spine done right there in the office. You went back to your exam room with your parents to wait for the x-ray to be read, and you could hear the doctors discussing it down the hall. The first hint that something was about to go wrong came while your dad was playing with a latex glove.

"Look at that spine!"
"Forget the spine! Look at those hips!"

Back to the x-ray table you went.

The rest of the appointment is a blur. You might remember the details now, but 12 years from now, you won't.

Today you were scheduled for your first major surgery, just a few weeks from now. You'll need at least three surgeries, the doctor said -- one for each displaced hip, and one for your spine. After those surgeries, you'll be able to walk without pain again. Maybe you'll even be able to run, for the first time in your life.

That isn't exactly how it's going to happen. What seems scary now is only scratching the surface of what the next few years will be like. You know this is a big deal, but your fears are about pain and the risks of anesthesia and starting middle school just weeks after hip surgery. The possibility of having to miss school is near the top of your list of concerns.

Things are going to get worse. So much worse. Your life is going to be forever changed, against your will, while you lie unconscious and unaware. You're going to grieve. You'll experience terror, denial, rage, and sorrow. You'll lash out at physical therapists, blame your parents, grow to hate God, and even consider suicide at the tender age of eleven. (I know, you think you're all grown up.)

What I wish you could know, throughout these next months and years of grief, is that after things have gotten as bad as they could possibly get, they're going to get better.

For years, you've stood by the fence during recess and watched other children play. You've dreamed of being able to run, and you imagine it feels like flying. You'll never know what it's like to run... but, thanks to the wheelchair you fear so much, someday you will feel like you're flying. That wheelchair will feel like shackles at first, but eventually, you'll come to see it as your wings.

Your childhood ended today. I'm sorry for that. But someday, years from now, you're going to find out that your life did not. It's only just beginning. And in eight long, painful years, you'll get a second chance to embrace it.

Thank you for hanging on through the storm. Thank you for surviving, one day at a time, and for retaining the essence of who you are. It's going to feel like a bad dream for a long time, but the best is yet to come.

Love,
Heather

10 Things to Know About Dating a Disabled Girl

1. It's okay to ask questions! (Appropriate for our relationship.) In general, it's best to ask questions as they come up naturally. (And they will.) We know we're disabled, and talking about it isn't bad. Chances are, we'll bring it up first, but if not, go ahead. We know you're thinking about it. Just try to avoid becoming the guy all of our friends know as the one who asked how we go to the bathroom on the first date.

2. Be flexible. We've spent years learning how to live with a disability. We're used to things not going exactly as planned, and we've learned that it's no big deal. Don't be embarrassed if the "perfect date" you'd planned goes out the window because of accessibility issues. We've had to be carried up the stairs by a stranger before, and we're not going to stress if we have to spend half an hour searching for an accessible bathroom. You shouldn't worry about it either. Just relax, roll with it, and laugh.

3. Plan ahead. We'll be impressed if we get to the park and find that you already know which trails and picnic areas are wheelchair-friendly. We're the experts of searching websites and calling ahead for accessibility information, but we appreciate it when our dates think to do it too.

4. We can do it ourselves. (But help can be good.) Most of us are used to either doing things ourselves or asking for help. Personally, I'm accustomed to opening doors, carrying my food to the table, and moving chairs out of the way, and I don't think anything of it if a guy doesn't automatically do those things for me. We don't want our dates to feel like they need to take care of us. That said, if you would open the door for any other date or we're obviously struggling with something, go ahead and be chivalrous.

5. Related to that... We're looking for romance, not a caretaker. We're already capable of living full and independent lives, either on our own or with the help of a professional caretaker. We don't expect the person we're dating (or even marrying) to help us with our personal care. Don't leave us lying in bed with the wheelchair on the other side of the room, but don't think you're signing on to be a nurse for the rest of your life. We've got it covered.

6. Yes, we can have sex. Most disabled girls are fully capable of being physically intimate with our partners. There are some conditions that may cause "traditional" sex to be too painful, but for the vast majority of us, we approach sex with the same attitude as most other things in life - with determination, creativity, and a sense of humor.

7. Be prepared for the comments. It happens to us often. Some of the most common ones are "Are you her brother?", "You must be a saint!", and "He's taking such good care of you!". Depending on the situation, it might not be appropriate to verbally shoot them down, but we notice how you react. Sorry to break it to you, but dating us doesn't make you a saint. ;) If you must smile and nod in the moment, be sure to let us know you don't actually agree.

8. We like it when you think our gear is cool. My power chair has a seat that reclines or changes height with the push of a button, and my custom-modified van is just plain cool. Boys dig it, and it makes me laugh when they get excited about it. Don't obsess over our tech too much, but feel free to tell us how awesome it is.

9. Use "wheelchair etiquette." Sit down to talk to us when possible, don't speak for us (people will expect you to), don't give the chair a push and let us fly down a hill... you know, have common sense and be a decent person.

10. Disability isn't the most important thing in our lives. I'm passionate about religion, adoption, and sci-fi. I've cared about each of those things for longer than I've been in a wheelchair. We all have different interests and passions, and disability is only one of them. Don't treat the wheelchair like He-Who-Must-Not-Be-Named, but don't focus on it to the exclusion of everything else.

2015 in Review

Better late than never, right?

January 

Rang in the new year with the prodigal B-Russ, newly returned from four long months on the wrong side of the pond.

The unicorns did our thing...

We planned P-day activities for part of the Morgantown Zone. Some were more enthusiastic about pudding pictionary than others.

Our missionaries got doubled out. :( Elder Fa'amoe was transferred to New Zealand and Elder Hurst was transferred to the other side of Morgantown.

The Alternative Sunday School presidency had to part when Obi moved back to Utah.

Eva got baptized! (And we got new missionaries.)

Requisite January rainy cold missionary booth from hell. (Not my umbrella.)

Not Pictured: I started my last semester of undergrad! ft. lots of puking 

February

The new missionaries grew on us... a lot. #cousins 

Transfers happened AGAIN. Surprise whisked-away-in-the-dead-of-night transfers suck even more than the usual ones, for the record. 

I started to realize that I was even sicker than normal. Most of my evenings looked like this.

Some of them looked like this.

Winter happened. Luckily, friends with shovels also happened. 

Not Pictured: We listened to "Find Our Cousins" for the first 50 or so times.

March 

We brought heart attacking the elders to a new level. 

We hosted another Zone P-day.

I continued to love the missionaries even when they did stuff like this.

My car went crazy, the missionaries rescued me from it, and Elder Hurst stole my nametag before I could steal his. 

We became friends with sister missionaries, continued stealing name tags, etc etc. 

Finally got our hands on Elder Hurst's name tag! (Disclosure: Bribed Elder Clawson to take it off his sweater while hugging him.) 

Not Pictured: I started going to the 2nd ward exclusively. Also, at least 50 more times listening to "Find Our Cousins."

April (oh, April)

Elder Clawson left for Taiwan. #RIPcousin 

Elder Bovee got to visit for a few minutes when he came to kidnap Elder Clawson.

We planned (and survived!) our third and final YSA Conference together. 

Unicorn temple trip + selfie with Moroni.

Patty visits!!! 

Possibly the most fun missionary booth ever.

Not pictured: "Find Our Cousins." Still. Talyn got home from his mission! Lots of school stress.

May 

This picture isn't really significant at all but it's cute so whatever.

Brad got married. I was the "best woman" at the wedding. 

RoboChair was not my best friend.

We sat on the bathroom floor and skyped with Talyn. 

I continued to have terrifying powers of persuasion over the missionaries. ;) 

Brittney left to spend the summer in Tanzania. :( 

Elder Hurst went home from his mission. :( But then I became friends with some weirdo named Austin so it was okay. 

We also lost an Elder Cowley (at least six days a week) and gained an Elder Fullmer.

Lots of being sick, still. I had an awkward sense of humor about it, at least on Snapchat. 

Not Pictured: I finished undergrad!! And I got my first GIS job! And my all-time 2nd favorite missionary (it's an honor, seriously) became an AP!

June 

I had a birthday. 

Missionaries continued to be weird but beloved. 

Not Pictured: I woke up, threw up, worked, went back to the institute, threw up, and slept. Pretty much it for June. Oh, and I was offered a job in Utah. 

July 

Kathryn and I went to the temple. 

We also went to Cafe Rio. Obviously. 

Elder Zazueta was transferred to... somewhere in Virginia. It's all the same to me. 

I finally got to hang out with Trinity for more than a few hours. 

And my dog! 

BRITTNEY CAME BACK!

On the 2nd day of Elder Souffle, he threw seasoning in my eye while grilling dinner. 

Trinity visited me in Morgantown.

I was still friends with missionaries. 

Spoonies sometimes use the hashtag #hospitalglam. That will never be me. On the plus side, I received a priesthood blessing from Elders Fullmer, Souffle, Higgins, and Rueda (exchanges) that's carried me through the past several months. I got a ton of blessings this year and I'm super grateful for them all.

Kelsey got baptized! She's the raddest. (Her friend Jordan was baptized too.) 

These are the scandalized faces of two scary-similar friends who asked for someone's phone to take a selfie and had our picture taken instead... and poor confused Elder Markowski, who was companions to three of our besties in a row. He was present for a bunch of pictures in this post, starting in January, but this was the first (and only) time his face actually made it into a photo.

And finally, I moved away from Morgantown and my NBFF. This is when "we" became "I." 

Not Pictured: Working, puking, etc. 

August 

I moved to Utah and immediately moved back to West Virginia. 

My grandma came along for the drive to Utah. It was a strange time, but really good. I taught her how to take selfies, she pretended she was going to fall over a cliff, and we ate at Cracker Barrels across the country.

These photos represent the time I spent visiting the great state of Idaho. I was a little bit picture-weary at that point. (Idaho is really pretty in the summer!) 

 Trinity and I spent a lot of time going for walks after she got out of school.

Trinity also started reading Harry Potter!

I started getting to know the missionaries in my new branch. I'll never be as close to the elders here as I was to the missionaries in the WVCM (by choice), but they're fantastic guys.

Not Pictured: I visited with two of my closest friends (Austin and Dallin) while I was in Utah. That was kind of a highlight. 

September 

Trinity came to church with me and claimed Elder Smith as her best friend. 

Trinity drew cute pictures for the elders 

I reluctantly became best friends with an emotionally unstable cat.

Not Pictured: More puking YAY! I was in Oakland and had lunch with Elder Cowley and his greenie. I visited Morgantown and the new missionaries ITLed me. I was called to be a Young Women's President.

October

I got to see Kathryn and "I" became "we" again for a few hours. WE sticky noted the elders' door and left them brownies, for old time's sake. 

My parents were really cute. 

Last brunch with Elder Smith before he went home.

Halloween happened.

Not Pictured: Got attached to a new old lady. She died. Went to Morgantown and visited Patty because she's alive. I'm weird about death. Also, I got really close again with a couple of the missionaries who left Morgantown a long time ago. Being able to email them now is nice.

November

Showed what I have to offer as YW president by heart attacking the missionaries instead of going to branch council. 

Managed not to be too sassy about this social media split. (It's their own door.) 

Trinity's writing career got off to a great start. 

Temple trip with my favorite YW. 

The elf on the shelf came back! 

Not Pictured: Yet more puking. What a surprise. 

December

Reunited and it felt so good. 

Christmas happened.

My mom got us all under one roof for Christmas for the first time in... literally ever. 

Temple with these babes.

Several pictures were taken of me with Kelsey because she's too awkward to pose for a picture by herself... not judging. 

Kelsey and Brittney became friends alarmingly fast. (Started and ended the year with Brittney being weird in a restaurant!)

Not Pictured: You guessed it... Also Elder Rueda got transferred back to Morgantown and we had an awkward reunion. And I got to watch Bishop Shields feed his dogs fried chicken for breakfast.