Faithful
Coming Summer 2013
Stories from those touched by Fragile X
"Your son has Fragile X syndrome"….
When I first read those words my heart broke, honestly I was devastated. Of coarse I took to the computer to learn all I could and was soon presented with a rough road ahead of us. A genetic disorder that causes mental impairment, cognitive delays, developmental delays, ADD, hyperactivity, sensory processing disorder…all words and phrases I was bombarded with that brought me to tears that weekend…Logan was just 18 months old at the time he was diagnosed.
When you have a child every parent thinks about how their child's life is going to play out….their first steps, first day of school, getting their drivers license, their first date, graduating high school, getting married, and even having children of their own. It's strange how one little sentence can destroy every hope and dream that you had for someone that means everything to you. But I soon realized that all those hopes and dreams I had for him were still there, they weren't what I thought they were but they were still there. So I now have new hopes and dreams for him…better ones! Because he works so much harder that most everyone else to achieve little things he has taught me to appreciate EVERYTHING. First steps didn't come until he was 19 months old… but that made them all the more special when they did happen. I vividly remember the first time when he was 6 years old and walked up to me and said "Hi Mom!" all on his own with no prompts. All moments that people take for granted every day. So here we are now at 7 years old, his speech is slowly emerging, his motor skill are improving, he's starting to write his letters and his hyperactivity is calming down a bit. He still can't tolerate a kiss on his beautiful face or going to crowded places but the one thing that he has never had to put any effort into is smiling! He breathes life into every room he steps into and will have you grinning in an instant. He understands everything you tell him and he loves everyone with his whole heart! He's all things NFL and for some reason he runs around the house yelling "Go Steelers!". A master at the iPad and obsessed at looking for his grandpa's house on Google Earth, Logan surprises me every day of my life. I have my moments for sure, just as any parent would wether your child has special needs or not. Some days I'd love to hide but then I look at Logan and think about how he puts 100% of his trust and love in me to help him along his path and how he never ever gives up…that's enough for me. Everyone can take a lesson from Logan, he sings his heart out, his love knows no limits and he lives in the moment and he will literally stop and smell the roses. His big brother Gavin and I laugh and smile very single day because of Logan. So yes that diagnoses changed my life but I wouldn't have it any other way…
By Ari Niknejadi
For more information on Fragile X please visit www.fragilex.org or contact the National Fragile X
Foundation at 800-688-8765
By Alexandra Louk –
My younger (I would say little but the kid is huge) brother has Fragile X. He was diagnosed when he was 5 and I was 9. The first thing people tend to ask it “What’s it like to have a brother with special needs?” and my response is always, “What’s it like to have a brother/sister without special needs?”. My brother Jakob is my best friend; he is always there for me no matter what and can always brighten my day. Being away at college has been hard but I try to call him when I can and I always bring him little presents when I come home. Our sibling relationship is pretty normal. We fight and wrestle and then we fight over our parents’ attention. He is protective over me and doesn’t like when I bring guys home, even though he might not fully understand everything he knows I am his sister and boys can hurt me and make me sad. When he is upset sometimes he will come and try to curl up in my lap like he used to. Even though he is 6’4’’ and 250 lbs. I don’t care he is my baby brother and I love him. Having a brother with Fragile X is hard sometimes but I honestly wouldn’t change a thing about him. He keeps my secrets and never tells my parents on me, and when we hang out I spoil him rotten and have a hard time telling him no. My brother is a Special Olympics Bowler and Ice Skater, he plays hockey and baseball, and he watches sports with me. So for me having a brother with Fragile X may not be easy but I wouldn’t trade it for anything.
Playlist for Saved
A Thousand Years – Christina Perri – Jeff asks Ari to marry him.
Dirty Dancer – Enrigue Eglesias – Jeff and Ari at The Driskill Hotel first time they make love
Me and You – Kenny Chesney – First time Ari and Jeff make love
The Only Way I Know – Jason Aldean – Josh and Heather dancing in Marble Falls
Over – Blake Shelton – Josh and Heather dancing in Marble Falls
Red – Taylor Swift – Heather’s feelings for Josh
Circles – Christina Aguilera – When Ari gives Rebecca the finger at Hula Hut
Red Hot Kinda of Love – Christina Aguilera – Heather dancing while drunk, flirting with Josh
Wipe Your Eyes – Maroon 5 – After Ari finds out she is pregnant and Jeff takes her home to their house
Everything – Lifehouse – Ari feeling lost after she finds out she is pregnant
Woohoo – Christina Aguilera – Ari signing in the barn
Our Little World – Susan Ashton – Gunner and Ellie dancing on their porch after returning from their honeymoon
Like I Am – Rascal Flatts – Gunner and Ellie making love after talking about having kids
Hurt – Christina Aguilera – Gunner and his father talking on the porch
Scream and Shout – Wil I Am – Ari dancing at kitchen sink
Blank Page – Christina Aguilera – Jeff with Ari before they make love in the barn
Let There Be Cowgirls – Chris Cagle – Ellie, Ari, and Heather dancing
Lift Me Up – Christina Aguilera – When Heather finds the text Josh sent Lynda
Better Dig Two – The Band Perry – Lynda fighting for Josh
Cookie Jar – Gym Class Hero’s – Josh Dancing with Lynda at the honkytonk
Toxi – Britney Spears – Ellie at the gym
Shut Up – Christina Aguilera – When Ari sees Rebecca at the gym
Cowboy – Kid Rock – Jeff in the barn
All I Need – Christina Aguilera – Gunner dancing with Ellie on Ari’s birthday
Club Can’t Handle Me – FloRida – Girls dancing at Ari’s birthday
My Girls – Christina Aguilera – All the girls dancing at Ari’s birthday party
There You Go – Pink - Josh and Lynda dancing at Ari’s party when Heather gets upset
It Will Be Me – Faith Hill – Gunner dancing with Ellie in their room at the Driskill Hotel
When She Says Baby – Jason Aldean – Jeff and Ari dancing at the barn dance
You Save Me – Kenny Chesney – Jeff and Ari’s wedding song
Desnudate – Christina Aguilera – Ari dancing at the wedding reception, driving Jeff insane
These Days – Rascal Flatts – Josh thinking about losing Heather
She Thinks My Tractos Sexy – Kenny Chesney- Pregnant Ari dancing in the kitchen
Breathe – Faith Hill – Josh and Heather make love for the first time at the ranch
Daylight – Maroon 5 – The day after Josh and Heather spend the night together when Lynda comes back
Run – Matt Nathanson – Ari and Jeff after Luke was born
A Better Life – Keith Urban – Jeff plays in his truck while taking Ellie and Gunner to have their baby
Say Once More – Amy Grant – When little bear is born
You Could Be Happy – Snow Patrol – Heather on her way to Josh after his accident