Living with tourettes.

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Hey everyone. My name is Rohan. I am currently 21 years old. I am going to share my story, for the first time, with all of you.

I have Tourette Syndrome. Which is very hard to live with because of the nature of the syndrome that makes you do really weird movements and sounds. I don’t know how many of you actually know what that is but in my home country (South Africa) not a lot of people know about the condition. That made it really hard.

Like you would probably guess I was made fun of a lot in school. On numerous occasions I wished that somehow my life would just end. I had no desire to stay in this world. When I was younger I always had a low self esteem and I hated it when people only looked at me. But thankfully I got God in my life. God sent so many wonderful people on my way that always supported me and never judged me. He showed me His amazing love. But I still felt alone in the battle.

Then I saw a testimony of Jamie Grace.

It reminded me that I am not alone. And that God is always with me, with all of us and we must never give up fighting.

Thank you all and God bless you all!

 

Photo courtesy of YayImages.

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I will keep on fighting!

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My name is Juan Carlos Alicea, but they call me JC. I was born on august 22, 1991 in Puerto Rico and because my lungs were not developed, I had to be on all sorts of equipment to help me breath. By the time I was 8 months old, the doctors told my mother I was blind. The doctors also told my mother that I was never going to make it but thanks to the support of my mother, family, and  the lord, I can say that I’m alive!

On Saturday, April 12th, I was invited to ReachFest, a Christian music concert hosted by Reach-FM, which featured performances by MercyMe, Jamie Grace, Colton Dixon, Britt Nicole, and Citizen Way. My mother was nice enough to give me 2 tickets to see the entire show last Christmas, 1 for me, and the other for my brother. Among seeing the acts, I got an opportunity to meet/greet the artists who made the songs that we hear on the radio. That is when I was finally able to meet my idol, Jamie Grace, the singer behind the song “Fighter.”

When I went up to her, she asked me, “what’s your favorite song from me?” and I told her “Fighter is my favorite!” and she dedicated the song to me during the concert. I would like to give a shoutout to my friend Jamie Grace for helping me continue to keep on fighting. Thanks so much Jamie, you rock!

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Faith for Baby V.

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From Jamie Grace: Occasionally I creep on Youtube to hear covers of my songs 😉 Recently I found a cover of “The Waiting” and once I heard this couple’s story I KNEW I had to share it on I’m A Fighter. This is the week of Moms Who Are Fighters and I pray you’ll all understand why I specifically chose them for this. —

“1000 days ago, my life hit absolute rock bottom. I was using a ton of prescription medication. I was lying [and] stealing to get my hands on any kind of pill that I could and it had been going on for years. I had to go to rehab… I went to jail… and I was totally ashamed [and] didn’t feel like I could ever come back from this. I’m supposed to be the pastor’s daughter a pastor’s wife and honestly, for a few days, all I could think of was killing myself. Our marriage was falling apart, my life was falling apart but through that, something we said was,  I hid in my addiction, I’m not going to hide in my recovery.” ”

Those are the words from Jessica, a youth pastor alongside her husband Louie, from California. I came across their version of my song The Waiting and I guess with my nerdiness (or nosiness? *smile*) ended up clicking around and finding out that they’re in the process of becoming parents. Just last year Jessica had a surgery that successfully removed two tumors. They have also gone through numerous fertility treatments and are currently preparing to cross another bridge in their story.

Knowing that God will always guide them, protect them and provide for them, Louie and Jessica continue to pray and seek God’s plan as they hope for their family to grow someday. I want to ask that you keep them in your hearts, thoughts and prayers as I will. I have been so blessed to know many moms who have given birth to their children and whose children have become a part of their families by way of adoption. It’s a beautiful thing to see moms and dads think less of themselves and give to a child with their whole hearts. Just from watching their youtube videos I know that Jessica and Louie have given so much of who they are to their ministry and a child would be so blessed to be a part of their lives. To stay updated with their story, click here.

“God can use our story to help somebody else…” -Jessica

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My Mom’s Fight by Jamie Grace

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She fights with her hair & make up done, her favorite pumps and dress and with a constant assurance that her Faith is the drive for her fight. You would never know my mom was facing a battle unless you were to ask and the height it all began in January.

Over the last 5 years my mom has faced various health challenges and last year was diagnosed with a rare condition called pudendal neuralgia. As a result of her condition she began struggling with every day tasks some as simple as walking or sitting up. As a manager in the music industry and a pastor alongside my dad she began working primarily from home and making adjustments as to not overwork herself however if you’ve ever met my mom (or me, the jr version) then you know that’s a challenge. Over the years she has been a mom (“mama mona”) to the motherless, a friend to the friendless, a teacher to the teacherless (she started a private school and a homeschool co op when i was in grade school) and just about everything else she could become to serve others. It’s not my mom’s norm to have to fight for her own life. She’s used to fighting for everyone else’s.

As with any medical condition our family, and many of our friends, spent forever on the good ole Google trying to find a cure for mom’s condition. It has many complications and while the risk for her life is not close to being the highest, the quality of life is one of the most common adjustments. Additionally, barely any doctors even know about pudendal neuralgia and all of the ones we could find had waiting lists longer than anything. Eventually we found a doctor in Boston willing to take mom’s case and try an experimental surgery. It took months to get the appointment and in January my dad took off work, my grandma (his mom from Texas who, to my heart’s break, isn’t a Cowboys fan but that’s another post) flew to Boston and the three of them embarked on a journey with mom.

My sister Morgan and I flew in the day after the surgery and flew out that next morning, we (along with my tour manager/brother in law) were on a tour called The Roadshow and could only be we with her for a few hours. However, I could see the hope in her eyes. I could see the peace in my dad’s. I could see the compassion in my grandmother’s. I could see the kindness in the eyes of the nurses and the friends (Duncans, we love you) who had picked us girls up from an airport an hour away to make sure we got to the hospital to see our mom. There were so many positive emotions in that room. It was hard to think she had just been through a 5 hour nerve-related surgery. Or maybe it was the obvious.

Considering mom’s condition, her physical recovery post surgery could be up to 5 years.

Typically when I say that to friends who ask “how’s your mom?” I see them tense up and slowly nod. Acting as though they were completely expecting that answer. They immediately resort to, “but your mom’s a fighter…” or “I’ll be praying for her” which I love, mom loves, and we appreciate more than anything. But the reality is, being a fighter doesn’t always mean that the battle is coming to an end. Sometimes it means you’re halfway through, sometimes it means it’s only begun and in many cases it means that you don’t know where you are but you know it’s still worth the fight.

Over the last few months we have had the most extreme of many situations. I have seen my mom cry more than any daughter should have to. I have seen my dad hold her when many husbands would’ve walked away. I have seen my mom laugh at the smallest moments and learn how to sit at home watching cable television (She literally hates sitting at home and does not like watching TV too much. She’s usually out starting after school programs, visiting and encouraging inmates and decorating houses for low income families – not kidding). I have seen my mom’s management company grow with more staff members and interns who are incredible at working with her to get the job done.

Through the pain, tears, fear, frustration, confusion… I’ve witnessed joy, true love, compassion, peace, loyalty, Faith… seeing my mom go to church for the first time in months. Watching her learn how to walk again, using her walker proudly. Seeing her learn to sit up again. Seeing her realize she has to stand more than sit so watching my dad request bar stool tables at restaurants because he refuses to sit without her. Seeing my brother in law and sister move back home for the last year and a half to be near her. Seeing our church members bring over dinner when they know the kids are out of town. Seeing the NOW guys and my band/crew love my mom when her own kids aren’t home. Just two nights ago, seeing some of her closest friends and family members gather at my house for her birthday party. Not only celebrating her 48th, but celebrating her life as a whole.

Yes, there is pain.

Yes, there will be healing.

Yes, there will be freedom.

But yes… there will be pain.

I don’t know how long this specific journey will last for our family, but I know that we serve a King who will be with us every step of the way. I know that He has put my mom’s coworkers, friends, church family and family in her life for a reason and I’m grateful that they are there to encourage her daily.

Mother’s Day used to mean asking my dad for $10 to buy my mom a card and a gift. Obviously as I’ve gotten older things have changed but even now it’s not a matter of picking out something cute for her to rep next time she goes out (even thought I totally got her new cowboy boots…). I guess it’s partially because I’m an adult, but Mother’s Day now? It’s a completely different story. It’s about sitting there with my mom, through pain or joy, and taking in all of who she is.

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Her wisdom, her humor, her laugh, her joy, her jokes, (if you can’t tell the lady is straight up HILARIOUS) her advice (about guys… let me tell you… it’s on point), her strength, her fight… because at the end of the day women don’t become mothers for themselves. Motherhood – the most selfless and underpaid position ever – is a job centered around molding someone else into who they’re gonna be. I  pray that I’ve taken enough notes and continue to keep my pen ready. She has much more to teach, I have much more to learn, and I couldn’t be more appreciative that my trainer is the most well equipped fighter I know.

She is clothed with strength and dignity; she can laugh at the days to come. She speaks with wisdom, and faithful instruction is on her tongue. She watches over the affairs of her household and does not eat the bread of idleness. Her children arise and call her blessed; her husband also, and he praises her: “Many women do noble things, but you surpass them all.” Charm is deceptive, and beauty is fleeting; but a woman who fears the Lord is to be praised. Honor her for all that her hands have done, and let her works bring her praise at the city gate. -Proverbs 31:25-31

For the rest of the week I’ve decided to feature the stories of moms who are also fighters. Click here to share your mom’s story.

Mucho amor,
Jamie Grace

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Mia Moo: Angel Child

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From IAF founder Jamie Grace: You may be familiar with the reality show Duck Dynasty that follows the lives of the Roberston family. Some of the most popular Robertson family members are Willie, Phil, Uncle Si… just to name a few of the bearded guys who are not only hilarious and great business men but, along with their wives and kids, are great role models.

One of the sweet kids on the show is Mia. Over the last few years I’ve been blessed to meet some of the Robertsons, including Mia and her family. I recently read her story, heard the song her mom, Missy, (“Angel Child”) sings for her and found out about the foundation their family started to help other kids like Mia. If you want to read a story about bravery, courage and an adorable little “angel child,” you’re in the right place.

Jase & I learned that Mia had a cleft lip and possible cleft palate at 31 weeks gestation, thanks to a 4-D ultrasound. We were able to prepare ourselves and our boys, as best as we knew how, for a few weeks before she was born at 37 weeks gestation.

Mia Elaine Robertson was born on September 12, 2003, with a bilateral cleft lip and palate & it was through a mutual friend, we met a family in our area who had a son born with this same condition just a few months before Mia. This family lead us to the International Craniofacial Institute in Dallas, Texas, where we traveled when Mia was 17 days old. They checked her from head to toe and fitted her with a palatal appliance in order to give a “fake roof” to her mouth.

This helped tremendously in the feeding process as it aided in allowing her milk to travel down her throat instead of out her nose. We did our best to fatten her up over the next few weeks in order to get her healthy enough for her first surgery, correction of the cleft lip. At 3 months old, Mia underwent her first corrective surgery. Jase and I were prepared to physically take care of our daughter, but we were not prepared emotionally as to how different she would look after this surgery. We had fallen in love with that sweet face for 3 months and were not prepared for the swelling and stitches that we saw in the recovery room. It was a very emotional time.

Our baby looked so different, and we actually wondered if it would have been better if we had chosen not to put her through the surgery. In just a couple of days, the swelling diminished entirely, and we soon realized that this indeed was the best thing to do for our child. I try to help parents in this regard so they do not experience the same trauma that we did. Mia healed quickly, and we continued to prepare her for the next surgery. She had palate correction surgery at 7 months old. After having her palatal appliance cleaned 3-5 times a day for 7 months, Mia now had her own natural palate. She was a happy baby who loved her mama and hardly ever wanted to be away from me. This is extremely common with babies who need so much medical attention. No worries. I took her to work with me at Duck Commander, and she played on the floor and with her Mamaw Kay while we worked.

We soon fell into a normal routine as she became just like any other baby – feeding, sleeping, playing, laughing. When Mia was 5 years old, she underwent a second lip correction surgery in order to straighten the lip from her last 5 years of growth. During the surgery, the doctors noticed that her nasal passages had begun to collapse due to scar tissue from the first surgery, so they had to do some work in the nose area as well. Mia had to heal from more stitches around her mouth and also had to wear a nose stint for a few weeks in order to open and stabilize her nasal passages. This was a difficult adjustment for a 5 year old, but she soon learned to help with the tasks of cleaning her stint each day as well as helping me clean the area around her stitches. In a few weeks, things returned to normal. A year later, she fell at the playground at school and broke her arm. The break was severe enough to have pins surgically placed in her elbow to stabilize the bones. She spent two nights in the hospital for a broken arm.

In 2012 we started the process of preparing her mouth for the upcoming bone graft surgery. This surgery is necessary in order to add bone to the cleft in her upper jaw where bone is absent. This is so her adult teeth can be moved to their intended position. Due to a larger amount of scar tissue from her surgeries as an infant, Mia’s upper jaw did not grow at the same rate as her lower jaw. This caused an under-bite of 15 mm. Her orthodontist, Dr. Jeff Genecov, developed a type of headgear that Mia was required to wear 12-14 hours a day for 12-18 months. Mia did great at this, wearing it to bed each night and school each day to get the required hours. After 12 months, it was decided that her jaw had moved enough (10 mm) to do the bone graft surgery. On January 3, 2014, Mia underwent major bone graft surgery. Her surgeon, Dr. David Genecov, took bone from her left hip and placed it in the cleft of her upper jaw. He then placed a splint in her mouth to hold the bone in place for 12 weeks. She has been on a “no chew” diet since that time. She will go for a check-up and x-ray on March 18th. If Dr. Genecov sees that the bone has sufficiently grown together, he will then remove the splint and she will be able to resume her normal eating habits.

Mia was born with a difficult challenge in her life. She has risen far above the expectations we had as parents. She now travels all over the country, speaking and singing to groups of people, encouraging them with her story of physical and emotional struggles. Watching how she deals with all of this in her life is difficult sometimes for us as parents, but she has become an inspiration to so many, including her daddy, her brothers and me. We couldn’t be more proud of Mia.

For more information on the Mia Moo Foundation and to purchase the song Angel Child, visit MiaMoo.org

Did Mia’s story inspire you? Click here to tweet it & share!

Image Credits: Mia Moo
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Jamie Grace Catches Up with Zackary

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Hey, it’s Jamie Grace!

Zackary and his family shared his story back in November, months after I had the privilege of meeting them. Zackary is one of the sweetest kids I have ever met. He loves Jesus, his family and can quickly make anyone smile. Zackary also happens to have some very serious health challenges – he’s a fighter.

(To read his full story, click here.)

Zackary, his sweet mom and his lovely friend Joanna all came to my concert in San Antonio this week. I was really excited to see them and also really proud of Zackary because it was the first time I had ever seen him standing/walking. However, this doesn’t exactly mean that everything is “ok.”

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This coming Thursday, January 30th, Zackary will undergo yet another surgery.

Please keep Zackary in your prayers. He’s an incredible kid and I know he will continue to bless the lives of so many people as he has blessed mine. As mentioned in his earlier post, he loves the scripture By His stripes I am healed… and carries around a zebra especially on surgery days. He’s so sweet and gave me a (stuffed) zebra at show!

I know it may not be common for us to see zebras where we all live, haha, but by reading about them you may happen to notice one online or in a book I don’t know! If you do, I hope it makes you think of Zackary, and I hope you say a prayer for him 🙂

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Jamie Grace – Dealing with Tourette

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I’m A Fighter founder, Jamie Grace, sits down at the Air1 studios to chat about dealing with Tourette Syndrome.

At the age of 14 she started teensWts (teen with Tourette Syndrome), an online resource for kids and teens facing some of the same struggles she was. Now, at 22, she reaches are larger crowd right here at imaFighter.org! Sharing the stories of fighters everywhere. Share your story by clicking “Submit a Fighter” to the left – you never know who you could inspire.

Currently a full time singer-songwriter, be sure to preview Jamie Grace’s upcoming sophomore record Ready to Fly at air1.com

 

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