Okay...So I didn't dye ALL of my hair purple - but I'm getting ahead of myself.
I started having laser treatments on my port wine stain birthmark as a newborn. Growing up, we had a tradition to stop for lunch at a two-story Chuck E Cheese after each procedure. Our stop for pizza was then always proceeded by a stop at an outlet mall, where my mother would spend up to $10 on a new toy or book. As an adult, our Chuck E Cheese tradition has changed to a stop at a Jamba Juice, followed by a second stop at a fruit stand, Casa de Fruta.
Just a month or so ago, I had my 50th treatment.
Yep. You read that right: My 50th.
Each treatment sends about 300 laser pulses through my skin, bursting and cauterizing the blood vessels in my face. Multiply that by 300, and that's about 15,000 laser pulses total. (Without the treatments, my birthmark is at risk for growth and can develop medical complications. Even with the treatments, my birthmark has experienced some slight growth.)
About a week or so before my treatments, I always get anxious and stressed. The smells, sounds, and pain are imbedded in my mind, and I do not look forward to the appointment.
When I realized I was coming up on my 50th treatment, however, I knew I had to do something fun. People always throw a big birthday bash when someone turns 50, so why not do something similar for my 50th treatment? After all, if something isn't naturally fun, that just means you gotta find a way to make it fun - right??
Here are 7 ways I made my 50th fun:
1. I made ninja sugar cookies with birthmarks. Okay, strike that. I made wanna-be ninja cookies with birthmarks. Instead, they look like people in weird onesie pajamas doing awkward dance moves. Clearly, I am not destined to be a professional cookie designer.
My first batch looked like sumo wrestlers. So BAM.
Here's a sumo wrestler with a birthmark. #Flexibility
See. People in onesie pajamas doing awkward dance movies.
You're welcome.
Okay. So maybe THIS is why my cookies aren't top-notch.
Oops.
2. I got my nails done. Making an appointment with my aunt's talented friend, I had my nails painted with the logo of The Vascular Birthmarks Foundation (VBF). Not only are they the leading nonprofit for vascular birthmarks, but I am their social media coordinator and anti-bullying campaign manager - so it seemed fitting.
Thank you, Paula!
3. Girls have to color coordinate, right? So that's what I did. I went to my hair guy and got a few purple highlights put in, color coordinating my hair to my face. I mean...After all, if my face is permanently purple - what are a few temporary purple highlights? ;-)
My friend, BreAnna, sent me this on Snapchat (crystal.hodges).
It was too adorable not to share.
My hair guy, Sean, is the best.
4. We went to Jamba Juice and Casa De Fruta...Keeping the tradition alive. Casa De Fruta has the best rocky road (candy) that's impossible to say "no" to, and it's a great place to stock back up on for ice for my icepack. The drive from Fremont to Casa De Fruta is also a beautiful one. Nothing compares to the view. (I should point out that the drive to each treatment is 3 hours each way.)
That. View.
5. My baby niece went with me. Once my treatment was complete, I received instant baby snuggles. Now that, my friend, is the way to have a treatment.
She is the cutest, I know. (Oh, and my birthmark didn't turn super purple like
it normally does. That's a whole other blog entry, though.)
6. We bought party hats and glasses, and I took selfies with my doctor. (Yeah, he's pretty great.) A sash was also on my list, but I didn't want to get too crazy. ;-)
Parrrrrttttyyyyy.
7. I wore my Natalie Grant necklace, "Faith Over Fear". Every treatment I wear one of her pieces. I love Natalie's theme, "wear it. live it." I wear a different one every treatment, varying on my mood and struggles. During this treatment, I also wore her "Dare to Be" bracelet, reminding me to dare to be confident, beautiful, known, and loved - during and after the treatment. (Side note - did you all see my blog entry about my God-sized dream coming true, when I shared the stage with Natalie in January? Check it out here.)
*Insert heart emoticon here.*
Turning my 50th laser treatment into a party didn't take the physical pain away. However, it did give me something fun to focus on, decreasing my pre-anxiety and stress, all while creating a way for me to celebrate my strength and milestone. (I'm not sure we celebrate our moments of strength enough.) It made the days leading up to treatment more enjoyable, and what was once a medical procedure got turned into a party. All it took was a different, refreshed perspective.
Is there anything you're struggling with? Are there any situations in your life that need a bit more fun added to them? Embrace your creativity. You never know what you'll come up with. :-)
The Travelin' Chick,
Crystal
PS: In my defense, while I can't decorate cookies very well, I DID make some cute Princess Leia truffles. (This was only my first attempt. The decoration ideas are original and my own.)
Have you ever been afraid of the dark? Or cried out to your parents, with a trembling voice, in the middle of the night, "The boogie man is under my bed!"
Parents know there's no such thing as the boogie man. Yet, like a knight in shining armor, they run into your room, turn on your light, and check your closet and underneath your bed.
In the last year, I've struggled with an adult version of the boogie man.
To give a little background: I've had migraines since the age of six.
I remember my very first one, actually. It was so severe and three-fourths of a life-time ago that some of it's a blur, but I remember it. My head was throbbing, feeling like a man was in my head, using my brain as a punching bag for his boxing practice. Mom was worried. An icepack sat upon my head, and any time I tried to lift it off the pillow, the excruciating pain intensified...And I cried. A lot.
After my first migraine, I got them enough to have a special prescription to help with the pain, but
only needed to take that about once every 4-6 months...Although, because I got them so young and would talk about them as a child, I remember many people thought I was just exaggerating regular and simple headaches.
In 24-years, I've seen a few doctor's on the subject, ranging from a neurologist (brain doctor), geneticist (genetics doctor), and a Sturge Weber Syndrome specialist (also known as SWS - but we'll get to that in a minute).
All have told me that while some children get migraines, it's rare for a history of migraines to start in 6-year-olds...Even for someone like me, whose family has a background in the area of migraines.
As an adult, and because I'm no longer a bald baby,
people can't see the side profile outline of my birthmark.
I'm glad my parents took this photo, which is a great visual.
And wowzers. Can I just point out how much lighter
my birthmark has gotten since my infant years, and
after 50 laser treatments?
There's a topic I haven't written much about. Most of you know that I've written about my journey with a vascular facial birthmark, a port wine stain. (I'm also in the the process of writing a book, so stay tuned for more information.) Depending on how long you've been a reader of mine, you may or may not know that my birthmark is way more than a skin pigmentation condition. It's caused by extra blood chillin' in some of my blood vessels. And depending on a case-by-case scenario, the depth of this "birthmark" varies. (Birthmark in quotes because there is way more to a port wine stain than meets the eye.)
In my case, it does affect the coloring of the left side of my face. However, it goes much deeper than that. It's in my left ear, in my left nostril, on the left side of my gums, and on the roof of my mouth (once again, only on the left side). It also goes all the way to my brain, and affects my (left) eye. While I've had migraines since the age of six, I was diagnosed with glaucoma at the age of eight. Since then, I've had to use eye drops twice a day, doing my best to keep the pressure in my eye stabilized so I don't go blind. (By the time they realized I had glaucoma, I had already lost a little bit of vision - but "not enough to tell".)
Not everyone's facial birthmark reaches their brain. From my understanding, when it does reach the brain and affects the eye, that means that the gene that causes the port wine stain started to mutate sooner than those who don't have an underlying condition. When it does affect the eye and/or the brain, however, that child is known to have a second condition - SWS.
But here's the thing...I have SWS. I've just never spent much time writing about the condition because it freaks. me. out. My doctors were confident I had it since I expereince migraines and my eye is affected, but they weren't 100% sure I had it. It's a super rare condition and they pretty much (admittedly) know nothing about it. (We'll get to that in a minute too.) It wasn't until October that I saw a team of SWS specialists (for free) and got an official diagnoses, thanks to The Vascular Birthmarks Foundation and their annual conference.
Once I had the official diagnoses, and even though all my other doctors were only about 80% sure - my chart only said something along the lines of, "likely to have SWS" - just in case any new symptoms were to appear. But with an official diagnoses by one of the best SWS specialists around? I finally felt like I could claim it as my own, and I officially had the right to write about it. (...Even though it still has taken me nearly 5 months to write about it on such level of depth.)
There's so little that is known, but the stuff that is known terrifies me. Google SWS, and it's not light reading material.
Just like any condition, the severity level varies from person to person. Some parents are told that their child will never walk or talk. Many experience seizures, which in some cases, results in needed brain surgery. Some have developmental delays of motor and cognitive skills. Like myself, if the port wine stain touches the eye, they can develop glaucoma. Many people with SWS experience migraines...And that's the just a small portion of the list of the stuff that is known.
While I have MRIs every couple of years to watch the blood vessels near my brain (and have done this since I was a small child), I didn't start having questions about my condition until a few years ago. Once I had lengthy list, I went in to see my trusty neurologist. This is how our conversation went:
Me: What's up, doc? How are you? Doctor: I'm great, how are you? Me: I'm doing well, but I have a ton of SWS questions for you. Doctor: Okay, what's up? Me: Alright...Question number one! (*Insert whatever the question was.) Doctor (with a deer-in-the-headlights look): I don't know the answer to that one...Truthfully, in all my years of practice, you're the only patient I've ever had who has SWS. You probably know more about the condition than I ever will. Me: Oh, okay. Well, by chance, do you know the answer to this question? (*Insert question two here.) Doctor: ...(deer-in-the-headlights part two)... Me: Oh, okay...Never mind. Do you know of any neurologists who specialize in SWS, or have more understanding and knowledge on the topic? Doctor: I'll find out for you.
...And that was about three years ago, and she's not yet told me of a SWS specialist within my healthcare's organization. (Even my laser treatment doctor hasn't been able recommend one to me. And I ask...a lot.)
Since my doctor didn't seem to have answers, I'd turn to Google for them instead. But even then, there was only a 50/50 chance of finding my answers, so I stopped asking...Until May of last year, which was when my brain became a hot spot for migraines.
That month is a blur. I just remember staying in bed for many of the days, my head under a pillow to block out the light, migraine medication by my side. The migraine was a constant, month-long, torture, often buddy-systemed by blurred vision, weak muscles, and stomachaches. (Fact: Did you know there is such thing as a "silent migraine"? That means the sensation of the headache may not be felt, but the other symptoms such as blurred vision may be clearly present....See what I did there? "Blurred vision may be clearly present"? That was a terrible migraine joke, I know...Anyways, I've also experienced a silent migraine as well, ending me up in the ER when I was freaking out about my lack of ability to see correctly.)
I even had great sunglasses swag as a child.
(Go me!)
Sometimes with a migraine, I can function. I may have to wear sunglasses inside, but I can pull it off.
But, after about two weeks, they progressed. I started canceling on friends. My weekends were spent in bed. Church was missed. And then I started missing a few days of work - which is when I knew I had lost control of all the pain, and my body. Barely functioning with some cool sunglasses swag wasn't even on the table anymore...And my questions started to build up again.
During my recent appointments with the geneticist and SWS specialists, they all agreed, "While your family has a history of migraines, I'm confident this is your SWS as you started to get them at the age of six, which is not normal for a child that age."
Since May, I've found myself taking migraine medication 2-3 times a week, depending. Sometimes it's more as a preventative measure when I feel one coming on, sometimes because it's the full, real deal.
And then this week happened. Sunday I had a, "I can't lift my head up off the pillow without crying" migraine, and I just woke up to a similar one a few hours ago. (I'm so glad the medication worked quickly today!)
Crying, I told God, "I don't like my brain. Wait, strike that, I like the contents of my mind - I'm just really mad at the actual organ right now. Oh, wait...Never mind. You're God - you know what I mean."
Until tonight, I've thought, "SWS scares me. It freaks me out"...But I don't think I had officially told that to God.
My assumed SWS migraine symptoms have drastically changed in the last year, and that scares me. Seeing how that has changed, I can't help but wonder if anything else will change. While most people start having seizures as young children, there have been cases where SWS patients develop them as adults, some in their 50's...And that's my biggest SWS fear.
In the last year I've bounced back and forth between two different "Why me?" questions.
"Why me? I can handle the birthmark. I'm fine with that part. But why do I have to struggle with migraines?" I ask in frustration.
"Why me? Why, out of all the people with SWS that have seizures and other serious symptoms, do I only have migraines and glaucoma? Why, for the most part, do I get to go out and live a life that many with SWS cannot?" I inquire out of curiosity and an odd sense of guilt.
Along with the occasional "why" questions, the fear questions are also triggered.
"Are seizures next?" I wonder.
"Will my migraines worsen?" I fear.
I've never been one to play the "if" game very often. Not until this last year...And I don't like it.
Thinking back to my childhood, I don't remember being afraid of the dark. I must have been afraid to some extent, though, as I remember falling asleep with the light on for many nights. In fact, I think this was my first round playing the "if" game.
When I went to bed with the lights off, the room was dark...and in darkness, you can't see. Where there use to be walls, there appears to be an endless amount of the unknown. What if I was thirsty, and couldn't find my water cup in the night? What if I knocked my cup over during the search? What if something scary lingered in my room, or in my closet? There wasn't anything scary lingering around in the daytime or with the lights on, but what if that changed as the darkness crept in?
He is the Light in the darkness. (John 8:12)
And that's how my journey with SWS feels. The light use to be on. I knew I had an occasional migraine, I have glaucoma. But when my symptoms began (and continue) to change, and the migraines started to come on a daily basis? When I have a migraine for two weeks (or a month) straight? The light is turned off and I can't see anything. (Okay, strike that. Some days it feels like I'm a house experiencing a power outage.) I'm afraid of what might be lingering in the dark. I'm afraid of the boogie man.
My life verse has been Jeremiah 29:11, "For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future."
Throughout different seasons in my life, I've been clinging to this verse - just like my recent journey with SWS.
I don't know what my future holds, but whatever it is, my God is "bigger than the boogie man. He's bigger than Godzilla or the monsters on TV. Oh, God is bigger than the boogie man, and He's watching out for you and me." (Veggie Tales, anyone?)
He also has a plan for my life, even if I never understand the full plan...And even if I never find the answers to my big "why me" questions.
What "boogie man" has been creeping into your life lately? Have you told God of your fears? Like my, "Dear God: I don't like my brain" prayer, have you told Him that you just flat-out don't like whatever your boogie man represents?
Like many, I've had different versions of the boogie man in the past, and I know I'll have more to come in the future...But here's the thing. God is listening, and He's waiting. Our God is a big God. He is Mighty and He is Able.
Go to Him, tell Him about your boogie man. He's waiting to turn the light on.
It's almost Valentine's Day - and here's the deal. I'm a single gal and I want YOU to be my Valentine.
You might be wondering, "How can I be your Valentine??" Fair question.
"I love you" in American Sign Language.
Because Valentine's Day is the 14th of February, I'm going to list 14 items that I love - and I'm going to giveaway an item to TWO of my readers. (Maybe you??)
Here are the rules to enter the giveaway:
"Like" my Crystal Hodges page on Facebook. (If you've already done this - thank you! You can skip to rule #2 and #3.)
Write on my Facebook post that links to this blog entry, and tell me which item you'd like to receive. (If you're torn between a few of the items - don't fret. Just list the items you're interested in...If you're picked, I will surprise you with one of them!)
Share this blog post with your friends.
(Yes, I am including my international friends in this giveaway.)
On February 14th, 2016 (at 5 pm California time), I'll pick two people. Once I pick the two people, I'll announce their names on my Crystal Hodges Facebook page and I will then private message those selected, requesting their address.
This giveaway is my way to tell you guys thank you for your encouragement and support over the last few years, and to say, "I love you." You guys rock and I am so thankful for each and every one of you.
Can y'all tell I like to read?? I think it's safe to say that books, in general, are some of my favorite things.
Thanks again for being such great friends and for reading my blog. I'm thankful for you, and I can't wait to celebrate Valentine's Day with two of you. (Insert heart emoticons here.)
The Travelin' Chick,
Crystal
***Thanks to everyone who entered the giveaway! As of Sunday, February 14th, 2016 - we have our winners. If you weren't picked or you are seeing this at a much later date, don't worry! I'll need a new valentine for 2017, and will be doing a similar giveaway next year as well. Follow my page for updates and similar opportunities.***
Around 8 years ago, I went to an event called The Revolve Tour, which was a Christian teen girl event. I remember loving every second of that weekend event, but was extra excited about my all-time favorite singer, Natalie Grant, being there.
About 8 years ago at the Revolve Tour.
#BeforeTheDaysOfSelfies
Not only did Natalie sing, but she also shared a bit of her testimony. She shared about her struggles with bulimia, but also about Christ's love that reminded her of her worth and beauty. Sitting just three rows from the stage, I remember thinking to myself, "That's what I want to do. I want to be a speaker and help impact lives for Christ." Yet, just as quickly as that thought came into my mind, I told myself, "But...I don't have a story to tell."
And bam. After that one simple thought, I forgot all about my 3-second-long calling. Because, you know...I didn't have a story to tell, which also meant that I didn't have anything to say.
Fast forward about 5 years.
Long story short: It took a while, but I've learned I do have a story to tell. Even without my photo going viral (due to a facial birthmark - a port wine stain), I had a story to tell just by being born the way I was born. In the last few years, I have rediscovered my desire to be a speaker as well as my desire to write several books.
When people first meet me, it doesn't take long for them to realize that I'm a dreamer. But more specifically? I'm a God-sized dreamer. ('Cause hey, guys, with God, anything is possible.)
I started a God-sized dream board soon after my photo went viral. When my photo went viral, I struggled. I was discouraged, hurt, frustrated, while feeling both incredibly isolated and misunderstood. There were days where I would feel and know in the depths of my soul, "God is going to do something great with this mess of a situation!" But, there were those days where the darkness would take over, filled with pain and discouragement, "God, I'm hurting. How can you do anything beautiful with what's taking place? Why would I even be worth of you doing something great with this?"
Although I strived to see the beauty around me, to see the positive of the situation, my heart felt as though it had been trampled upon and deeply bruised. And each time I found a new share of my image, or I sat and read thousands of comments for hours-on-end? Ouch. There went another stampede, adding an extra layer of unsettled dust and pain.
About 8 years ago at the Revolve Tour.
Thankfully, every time I had had a bad day, God placed someone in my life who would call, text, or email me, "Crystal - I just know God is going to do something wonderful with your story!"...And the thing is, on the really bad days - I kept quiet, not wanting to burden anyone with my ongoing pain. Those people who called or sent me a text? I didn't tell them, nor anyone else, that my heart was tearing in extreme agony that specific day.
Eventually, I got tired of the pity days. I got tired of the discouragement, I got tired feeling so tempted on focusing on the negative aspects of what was taking place. I didn't like the person that my pain was turning me into. In the depth of my heart, I knew God had a plan. In my heart, I knew something amazing would happen with my story - I just had to hold on for the ride, and stay willing.
Once I set my new attitude, I made a decision - it was time to make a God-sized dream board. I knew I had goals and dreams...And really big ones at that. So, I made my vision board full of my God-sized dreams, keeping it in a place where I would be reminded of the ultimate goal every. single. day...Because here's the deal...Reminding yourself of the goal of what you feel called to do, what you know you can do...Well, those pity days full of discouraging thoughts have nothing on the purpose God had (and still has) for my life.
Encourage others with my story on Focus on the Family.
Share my story on K-love.
Do a TED talk.
Speak at Winter Jam.
Speak at a Youth Camp.
Write my book.
Those were just a few of my dreams. Realistically, though, there isn't a board big enough in this world with enough room for all my dreams. However, the first one I put on my board? Share the stage with Natalie Grant.
Friday morning, my mother and I were driving to an event in Sacramento (3 hours from my home). I had heard of the event, Dare to Be (put together by Charlotte Gambill and Natalie Grant), for the last three years and had been craving to attend. Needless to say, I was excited to finally have that opportunity!
As we were driving, we were talking about my God-sized dream board. My mother asked me, "So...What exactly does your dream, 'share the stage with Natalie Grant' mean to you?'" I paused to reflect and then explained, "She was the speaker at the event when I first felt the calling to be a speaker, to be a story-teller for God. She inspired me and impacted my life. Had it been another speaker on that stage, I would have put their name down on my board - but it was Natalie." Without knowing, 8 years ago, Natalie deeply impacted my 16-year-old heart.
...And then Friday night's event started. Natalie sang a few songs and Charlotte Gambill spoke to the group about being known by God. (If you've never heard Charolette speak - oh man. You. Are. Missing. Out. That girl's heart and words are clearly on fire for God.)
Shortly after an intermission, Natalie started to sing her new song Be One. If you watched the video above this entry, that's the song...Talking about how it's time to be one for someone...That it's time for us to get all of "our hands dirty". After all, why should be be "sitting around waiting for a miracle to come when we can be one"?? If you didn't listen to the song, I highly recommend that you go back and listen before you continue reading. (In fact, I actually recommend buying her whole album. Every single song is incredibly power, holding a 5 star rating on my iTunes account.)
Moments after she finished the song, Charlotte came back on the stage and said something along the lines of, "this is my favorite part of the night", as they choose to honor someone at every Dare to Be event.
Natalie started speaking, and some of it is a blur to me. But I do remember her saying, "I recently first connected with the young lady we want to honor tonight on Twitter. I saw a tweet she sent me, and something about her story intrigued me. She doesn't know this, but I then totally started social media stalking her. When I found out she was going to be at this event, that she lived here - I thought it would be pretty cool to honor her - and she has no idea that we're doing this tonight. So, I want to tell you a little bit about her story..." And the rest, my mom caught on video:
Oh. My. Word. Guys...God-sized dreams DO come true...And apparently, God-sized dreams sometimes come with an unexpected standing ovation from about 1,000 strangers and beautiful flowers. Also, I've learned that I have many of you to thank. Many of you received a message from my mom on Facebook asking you to nominate me for them to honor at this event, and you did. Natalie told me I've "been one" for many, but really, many of you have "been one" for me...Although my words feel meek in comparison to what I actually feel, I want to thank you. You'll never know how much this has meant to me, and how much I appreciate what you have done on my behalf...You'll never fully know much I appreciate you.
*Insert Heart Emoticon Here*
Ironically, I was hoping Natalie would be doing a book signing after the event, wondering if she even remembered me from my YouTube video she saw in October. When I finally realized she was talking about me, before she said my name, my heart started to pound while tears started to magnetize to my eyes, and they did so once again as I stood up on the stage with her. My God-sized dream was coming true!!...Yet, even though I almost did cry, the tears contained themselves within my eyes. I was on emotion overload, with so many thoughts and emotions flying through my mind. The whole thing felt, and still feels, like a dream. Spending a few minutes on stage with Natalie, as we talked, I felt so much love from her and Charlotte (I felt like we were such kindred spirits), as well as from everyone in the room. Two days later, I'm still a bit overwhelmed, still processing the whole event.
Between my God-sized dream coming true, now knowing Natalie occasionally "social media stalks me" and she "can't wait" to read my book, plus knowing so many of my friends sent in nominations...My heart is so full. Full of love, appreciation, and joy. Two days later, like I mentioned above, I'm still processing everything. I'm still speechless. (For the last two days, my eyes have also followed the "being full" trend...Becoming so full at times that happy tears have overflowed to my cheeks.)
After the event was over, a woman came up to me and told me, "I knew God had me come here for a reason tonight, if only to hear your story. I have a family member who has a port wine stain birthmark over her whole body, as well as having both Sturge Weber Syndrome (SWS) and Klippel Trenaunay Syndrome (KTS). She's struggling, physically, spiritually, and emotionally. I knew I had to come talk to you." Wow. Apparently there were multiple intentions in God's plan for my being on the stage and Natalie sharing a portion of my story at at Dare to Be.
And another cool thing? While I have many dreams, I had three initial dreams:
1. Make a professional video about my story.
2. Share the stage with Natalie Grant.
3. Go to the publicity summit in New York City.
Read bottom to top.
...And now, here I am, seeing those three initial dreams begin to intertwine together. I took that first step - I made that video. Natalie just happened to find it on Twitter back in October, tweeting me bits of encouragement. Then, I applied for the New York event and was one of the 100 people accepted to attend. And once I found out Dare to be was coming to California? I knew I was going to go...And once Natalie found out I was coming, we shared the stage together...Resulting in her and Charlotte literally supporting my New York dream. (Side note: Natalie and Charlotte - if you're reading this, thank you for your encouragement and support Friday night, and for your sweet gifts...And thank you for creating a chance for my God-sized dream to become into a God-sized reality. Once again, I can't fully express my thanks in just a few words.)
You know you're following the right dreams when they eventually intertwine seamlessly together. I've felt like I've been following the right dreams, but it's encouraging to see how they work together, confirming I'm on the right track and in tune to what God has called me to do.
After the event, it hit me. My God-sized dream board? I've actually been limiting my dreaming ability, too afraid to put my full dreams down on paper.
Sharing the stage with Natalie would have been wonderful experience, no matter the capacity, but I know my dreams go much deeper than that...I was just too afraid and intimated by my own dreams. "Part one" of my dream? Share the stage with her, the woman who inspired me as a teenager...The woman who was speaking when I felt God working on my heart to become who He has called me to be - a speaker and a writer. But ultimately? My dream is to connect with her, build a friendship, combine ministries, and do an event with her. And when my book is complete? I'd love for her to write the forward. (Book update: two chapters down, about eight more to go!) THAT'S my full God-sized dream. But, you have to start somewhere, right? Baby steps my friends, baby steps.
While I struggle for the words,
my "Nashville mom", Lynette,
explained perfectly what Friday
night's events felt like.
I don't know where you are in life right now. Maybe you're in a low valley, feeling as though your life filled with pollution that blocks the blue skies, as you feel you're breathing in that smoggy, dirty air. Or, maybe you're on the mountain top with crisp, fresh air and a beautiful view. Wherever you're at in life, please dare to dream. Dreams DO come true, no matter how big or small you feel they may be. Make a God-sized dream board so you can be reminded of the big picture in your life, which will help push any darkness away that tries to smother you down in that valley. What ever you set your mind to can happen. God knows you. He knows your heart, your intentions. If you keep your heart and mind open to whatever ride God has in store for you, He will get you through any storm - and then some.
Also, can I recommend to you to find a good tribe of people, a good "squad" (as Taylor swift calls it) of friends who uplift you? Friends who push you to be your very best, who hold you accountable, and those who want to see you succeed? Friends who dare you to dream the biggest dreams you can think of, friends who help your God-sized dreams come true? You need people in your life who help keep you focused on what you're called to do, friends who call you out when you're headed down a dangerous path, such as my friends did during my angry and self-pity days.
Those are the best kinds of friends, and we all need and deserve them in our lives. You deserve friends who dare you to be your very best, who encourage you in all that you do...Reminding you to keep Christ in the center at all times. If you don't have a group of friends like that in your life, find them. They're out there.
The God-Sized Dreamin' and Travelin' Chick,
Crystal
PS: Please check the website for Dare to Be. If there is an event near your city, you need to attend! My mom didn't know what to expect, but as we left she told me, "Wow. Next time we need to bring a whole group here."
It's just a screen shot from the video, but man...I love this photo.
"Your world is in the hands of the King of the world." - Charlotte Gambill
I've never been one for pity parties. Yet, recently, that's exactly where I found myself...Pity party for one, anybody?
Sometimes growing up can be hard. (Can I still say that at 24?) Legally I've been an adult for six years now, but as time goes on, I see my friends all growing up in different, anticipated, and expected ways. Some are moving out of their parent's homes. Some are in new or serious relationships, getting married and having children. Others are working in a financially secure jobs - with benefits. There are a few that I know that are doing well in all three departments, plus many other areas in life.
If you're a long-time reader of my blog, you know a few things about me: I'm 24, I still live with my parents, and I've (still) never been on a date. I've (still) never had a boyfriend. And while, I am employed by a wonderful nonprofit that I love working for (the Vascular Birthmarks Foundation), I am part-time don't yet earn enough to live on my own.
By the standards of many, I'm behind. Or maybe I should say I'm behind by the standards I've set for myself...Maybe both.
A few weeks ago I had different discussions with three of my dearest friends. They all (now) have boyfriends, they are now moving or have moved out of their parent's homes. I am SO excited for them and I am so glad that they are accomplishing so much. I celebrate for and with them!!...Yet, I sat there during these discussions, unable to fully relate. I sat there, wondering, "When will I be able to move out on my own? When will I have the joys of being in a relationship?"
Told ya. Pity Party. I know, envy isn't my best quality. (And trust me, my moments of jealousy aren't something I'm proud of, and would have been much easier to hide. However, I feel like there must be someone else out there who can relate. Someone else who can be encouraged knowing that they are not alone.)
Soon after, I expressed my frustrations(?) to one of my close friends...All while probably sounding completely desperate, which is also not normally like me...But hey, if we're on this honesty train...Choo choo, y'all.
And then the irony happened.
I'm not usually the girl guys flirt with, or the one they show interest in. Usually I'm the one on the sidelines, eating popcorn, watching all my friends in that role. Then again, my friends have told me many times that I'm just blind in that aspect of life.
But then it happened: A guy showed interest. Actually, strike that. Within just a day or two after my venting session, TWO guys showed interest.
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Who doesn't need this reminder?
Scene 1, Guy 1: I reconnected with one of my friend's friends. Actually, I was standing in the post office for 20 minutes while waiting for their custodian to help me save my phone...Which I very gracefully dropped between a counter (which was bolted down) and the wall. And then walks in my friend's friend (let's call him Miles) with his sweet grandpa. Miles eventually helped the custodian help me, and I was reunited with my phone at last!
Later Miles and I were texting...And I got awkward.
Miles: My grandpa told me you seem like a very cute girl. I have to say that I agree. Me: Shut up. You're being ridiculous.
WHAT...?!!? I told him to SHUT UP?? Who says that? Oh, yeah...I do. (#SMH)
FYI: Don't forget about Miles. We'll come back to him in a minute.
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Scene 2, Guy 2: I went out with some friends. There was a live band, and we ate pizza. Some people were dancing. I was sitting, hanging out with my friends. Then, I noticed a guy trying to get my attention. Although, at first I was certain he was trying to get the attention of my friend - but he wasn't. So, I went to him to see what he wanted.
Guy: Why aren't you dancing? Me: I don't dance. Guy: Come on, let's dance! Me: No, really. I don't dance. I'm kinda boring like that. Guy:*Walks Away*
Once again...WHAT?!!?? I'm boring?? Where do I come up with these ridiculous responses? (#Reason4509ImStillSingle)
For the love!...I've lived in London, gone viral on Facebook, and am writing a book. Why did I tell him I was boring? I nearly decided to chase him down later to tell him, "I told you I was boring - but I'm not. I think your good-looks distracted me and somehow cut that important wire between my mouth and brain. So sorry...Can I tell you about the time I was pooped on by a dolphin??"
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In the midst of this, Miles told me he was interested in me. Actually, he told me he was "intrigued" by me - and sent me a sweet list of the reasons why. He started to text me on a daily basis, consistently in pursuit. Yet, I took his words with caution, knowing we had to be strictly friends and nothing more.
There's that rule that every girl should have a list of requirements she wants in a guy...A list she won't budge on. Mine is short and sweet and has been rather consistent since the age of 16. My top four requirements?
1. He must be a Christian, striving his best to follow God.
2. He must respect my decision to stay sexually pure until marriage.
3. He must have an interest in missions.
4. He must respect his parents.
Miles isn't a Christian - and that's not negotiable if you want to date me.
And here's the thing...I learned some important lessons through my life's recent, ironic moments.
Lesson one? I'd rather be single with no one showing romantic interest in me than single and having non-Christians showing interest in me. You don't know what you're missing when you don't have it. I've lived 24 years without a guy spending time pursuing me (unless I've been blind in past situations, which is highly possible), but now I've had a taste of what that could be and feel like. I'd rather stay single, without anyone in pursuit of my heart - unless he's a Christ-follower.
This year I'm writing that book.
I'm learning to play the piano.
I'm getting that AA degree.
I'm chasing those God-sized dreams.
Also, for various reasons, I've learned I have a wall around my heart that I need to start tearing down. Yes, I need to guard my heart...After all, if I don't, who will? But I can take down the spiked barbed-wire that pokes out, discouraging someone from trying to reach my heart. I've always said I was willing to date if the right guy came along, but I don't think I was as willing as I thought I was at the time. I'm pretty sure my heart not only had a wall with pokey barbed wire, but it also had an alarm system and guard dogs as a companion.
The most freeing lesson of them all? I may not be moving out yet, have a "Facebook official" boyfriend (nor a non Facebook official boyfriend), or financially sufficient enough. But...I am writing a book with different publishers interested. I am pursuing my dreams. We're all adulting in different ways - and we don't have to fit the mold, going at the same speed (or route) as everyone else. It's okay to write that book before you move out of your parents house. It's okay to live overseas with a mission organization for 6 months before getting that college degree. You're not required to follow a specific list to live your life. It's okay to do things differently!
Make 2016 your year, whatever that may look like. Write that book, record that album. Move out of your parent's home, ask the girl out. Get your passport, sign up for college classes, or apply for that job. Dare to dream your own dreams, and take the steps to get where you want to be. There is no specific order we have to go by to grow-up and adult. Go buy yourself some Nike shoes and, "Just Do It".
Take those chances and live the life God has called you to live.
Within just 6 weeks of working for The Vascular Birthmarks Foundation, I'm SO excited to share this anti-bullying video that I was able to create with the help of many. I'm thankful for everyone who sent in video clips, and for the many people who have shared it with their friends to raise awareness for vascular birthmarks, and to encourage people to ask others about their birthmarks, and to accept us as we are - while fighting back against bullying.
Check it out, y'all:
If you have a vascular birthmark and want to participate in the next video, email me a clip!!
If you’re anything like me, people often stare your direction, and you feel like you’ve heard it all in regards to your physical appearance. And if you’re anything like me, you didn’t ask for this journey — but you’re on it.
I was born with a port-wine stain birthmark that covers half my face, which travels all the way to my brain (causing another condition called Sturge-Weber syndrome) and caused my facial features to be asymmetrical. In the last few years, I started to blog about my journey with a facial difference and how the world often reacts. As I write, I learn.
Below is a list of lessons I’ve learned over the years, as well as a list of things I wish I had realized growing up. Our physical differences may be different, or maybe you have the exact same type of birthmark in the exact same location. Either way, perhaps you need a boost of encouragement, or maybe you just need to know you’re not alone in your journey.
1. You have a voice. It took me nearly 20 years and my photo going viral to realize I had one. We have the power to stick up for what is right; we have the power to stick up for others and more importantly, ourselves. What you have to say is important. Use your words. Speak them, write them, blog them, YouTube them, put them to a melodious tune. Whatever way you communicate best — do it. What you have to say is important, and people will listen. Write that book, sing that song. You have a story to tell.
2. There are some days and situations you overcome with zeal, and other days you barely survive — and both days are OK. Sometimes there are days that are emotionally draining, and depending on your condition, some of you even experience health scares that leave you unsure if you have another day left on your life’s timeline. But here you are, reading this article. You’ve made it this far. You’ve survived, you’ve overcome more than you realize. You are amazing.
3. Remember to laugh. Life can be hard, physical difference or not, and laughter is crucial. For example: Half my face is purple, so I refuse to wear certain colors. When I shop with my friends, I often find myself telling them, “Um. No. That doesn’t match my face. A girl’s gotta color coordinate!” Find the humor and joy in life. Look for the positive in every situation. The world is a brighter place when you do. And remember — sometimes the smallest moments are the greatest ones.
4. It’s OK to wonder what life would have been like had you been born “normal.” Just because you ask doesn’t mean you lack confidence, and you don’t have to feel guilty for wondering. I have days when I wonder what I would look like without my birthmark and asymmetrical facial features. I even wonder how my personality would be different, had I not grown up with regular laser treatments, strangers’ awkward gawking and comments. It’s not healthy to obsess and dwell on these curiosities, but it is OK to wonder from time to time. The more speaking and writing I do, the more I come to realize that most people wonder, “What if I looked different?” After all, that’s how makeup and hair dye got invented; it’s what sells high heels and Spanx.
5. If you’re a girl, remember, you are beautiful and stunning. If you’re a guy? You are handsome with tons of swag. This summer I made a new, encouraging friend of the opposite sex. He heard a part of my story and kept emphasizing how beautiful I was, both internally and physically. I found myself blushing, awkwardly looking to the ground, unsure of how to respond. Beyond my grandfather, I don’t recall anyone from the male gender telling me I was beautiful — and for months I’ve tried to recall other men giving me the same compliment.
Having a guy tell me I was beautiful while standing face-to-face was one of the most internally painful social situations I’ve ever been in. It was, and still is, a foreign experience. Bluntly put, most comments I’ve received about my looks have been negative and hurtful. Growing up, I quickly learned to be on the defense when my appearance came up — especially around new people. I’ve always believed and told myself I was beautiful, but I realized through this experience that I never expected or anticipated a man unrelated to me to think the same thing. But they do, and they think the same about you. And they’re right. Don’t be afraid to let your guard down.
6. There are online support groups you can join. Only three people out of 1,000 people have the same condition I have (according to the Vascular Birthmarks Foundation), and even fewer have their birthmarks predominantly placed on their face. Until a few years ago, and in all my life, I had only seen a couple of people in-person with the exact same birthmark I have — and we never even said hello. Until I was about 21 and started blogging about my story, it never dawned on me that there were online groups I could join. After all, I didn’t have a “birthmark mentor” to tell me teach me these things.
Now, a few years later, I’m in several groups, and I work for the Vascular Birthmarks Foundation, which also provides a lot of insight and support. You may feel alone in your day-to-day life, but there are people all over the world who relate to and understand you. My family gets my situation to an extent, more than most people. They’re the most supportive family I could ever dream of, but they don’t live with my condition 24/7. When I finally connected with people who also had the same condition? Wowzers. These people get me completely. (At least, the birthmark part of me.)
7. Only you know what’s best for you, especially in regards to your health. Do your research, listen to opinions. But most of all — make sure you make your decision with your parents and doctors by your side, using their wisdom and knowledge to the fullest.
When I first announced on social media that I would be having laser treatments, people became angry — and they weren’t afraid to voice their thoughts. But here’s the thing… They didn’t know about my condition. They only knew I had a “purpl
e”birthmark, and that was the extent of their knowledge. They didn’t know the medical complications that could arise if I chose not to have the treatments again.
Sometimes, people who have the exact same condition are also strongly against the treatments. The treatments aren’t for everyone, and that’s OK. Each journey looks different for everyone. It’s OK to vary in opinions. The treatments aren’t what bind us together; it’s the journey and support.
8. Your condition doesn’t define you. Yes, it’s a part of you, but you are still you, no matter what people say. No matter what you look like. Be confident. You’re a rock star.
9. There are amazing people who will support and encourage you — people who will get to know you beyond what they see. Sometimes it can be discouraging when people stare or make rude comments. Thankfully, not everyone reacts in a cruel and hurtful way. I’ve always been able to make friends easily, but it did take me a while to find a good group of close friends who are always there for me. We’ve all been hurt by someone, but don’t ever be afraid to make new friends. For every unkind person, I believe there are at least twice as many beautiful, kind people.
10. You can change the world. You have just as much power as anyone else. Shoot for the stars, go for the impossible. Embrace your passions and dare to dream. You can do anything you put your mind to, and you have an endless amount of potential. You make the world a more beautiful place.
Love always,
The Travelin' Chick - and your mentor with a physical difference,
Crystal
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This article was originally featured on The Mighty.
