"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