1 P-36 Deletion Sundrome
A lot of bad things have happened in this world in the past few months.
If you've all but lost faith in humanity take a look at this face, or
the face of any young child. This little guy is my Christmas miracle. He
will never be a scientist, a rock star, or the president of his
fraternity. He will probably never drive a car, or have the privilege of
holding a high paying job. Star athlete? Probably not, but he's
overcome obstacles that, I promise, would make the strongest man
lay down and give up. He's inspired me to be a better person. I look to
him as an example of how to love, and how to truly show my love to
others unconditionally. He'll never be totally jaded by this world. Even
when he's mad it's only because he can't fully communicate the pain he
feels physically or emotionally, or maybe just the fact that he wants
the dad-gum chunky peanut butter instead of smooth! He's got your back,
if you're his friend, and he will flat line you out if he thinks your
being unkind to someone he loves. This is the face of what our world
needs more of---innocent, unconditional love. Just look~
My husband and I took our little Eddie Jett to The Warren Theater today for the showing
of "Avengers" for children with special needs and their families. It
The kiddos there could be themselves. They could laugh, have a little stroll down the isle, and make a little noise,
which we are totally used to---it was music to our ears. They adjusted
the lights and sound so it was conducive to children with autism,
genetic syndromes, and other special needs.
Eddie Jett turned around in his
chair in the middle of the movie, waved and told the other kids "Hi" and yelled out, "Uh-oh,"
and his classic "You OK??" during the movie, as characters got way-laid--- and it didn't bother a soul there!
THANK YOU WARREN THEATER in
Broken Arrow for your thoughts turned into actions, and for making the movies
a fun, exciting and special time for lots of area families and their
I highly recommend, if you have a child with special
needs, you get them tickets for next months special movie!!! PS The
Hulk was Eddie Jett's favorite---lots of "Uh-Oh...you OK's??"
Mr. Spoiled Rotten Pants!
Eddie Jett's quote when the Hulk appeared in the action sequences, "Uh-oh...you ok?"
Warren Theater in Broken Arrow, OK Thank you again for making our special needs little guy feel right at home in your gorgeous theater!
The power of the written word---even if scrawled on a scrap of paper, can truly hug the heart of someone in need.
KIND WORDS ON A SCRAP OF PAPER
My daughter Skylar had our little Eddie Jett in the waiting room at the hospital where he was to have several tests yesterday. Most six year old's would get antsy, but Eddie Jett could absolutely not comprehend why in the world those four, boring, waiting room walls were containing his free spirit for so long.
1p36-er's do a lot of waiting in hospitals, and it's virtually impossible to explain to them why they are there or what's about to happen, so needless to say it's most always a very stressful situation.
Poor Eddie Jett was having a major melt-down after an hour of waiting, and no amount of "book reading" could calm him. He has an incredible memory, and Skylar kept having to pull him back away from the exit as he remembered the fountain in the lobby where he got to throw some pennies in for luck last week as he was leaving the hospital. He was on a non-covert mission to make a break from the waiting room to chunk change in the cascading water, and each time he was denied he protested louder and louder.
Skylar was sweating bullets and felt like she was about to get voted off the island by the rest of the folks waiting patiently for their names to be called. She finally resigned to letting Eddie make a run for it for a few minutes down the hallway. As she headed for the door with her fearless, tiny leader a lady handed her a note very matter-of-factly, without even looking up from her magazine.
Sky sat on a bench outside the waiting room and read the note. The woman had scrawled a note of inspiration and admiration on a scrap of paper from the cross word puzzel book she was working on. Skylar had tears running down her face as she snapped back to the moment to retrieve Eddie who was trying to make a run for it on the elevator that he just summonsed by pushing the UP button---he LOVES elevator buttons.
The words that were written made Skylar's week. They truly warmed her heart and gave her an extra muscle in the mama department that afternoon. She gained strength from the simple words that the kind woman in the stuffy waiting room wrote down and handed her.
Never, ever underestimate the power of writing, saying, or doing something simple for someone in need. It just might be what the Dr. ordered for the day, and heal their spirit.
Kind words written on a scrap of paper to a mama in need~
Mr. Eddie on the waiting room phone (that Skylar had to un-plug) trying to call a cab to come pick up from this non-sense! He's a trooper, and his mama is amazing~
The Coweta Farmer's/Street Market was great fun Saturday morning.
Skylar and I set a table up to promote SkyTan mobile tanning, and I bought two thorn-less blackberry bushes, three fried pies, (peach and apricot heaven in a crust) three glitter Thunder coozies, and a Superman pillow for Eddie Jett all for under $30.00.
The weather here in Oklahoma has been unseasonably cool, so it was a mild July morning---perfect weather to set up shop in the great outdoors, and peruse other folks wares.
The Market will be the first Saturday of every month on Sycamore St. in downtown Coweta, from 7:30-12:00. Come on down next month and pick up some treasures and prize tomatoes!
Forrest has a new mini-roadie. Eddie Jett loves music!
I ran into a beautiful friend that moved several years ago. Traci McDaniel was in town visiting. She was Forrest vocal coach when he first began singing. Traci has the voice of an angel, and is getting back into the music business soon---very talented lady. We're so excited for her!
Sometimes you just gotta go fast and get a little wind in your curls~
Forrest and Eddie Jett---always wear your seat belts!
If He Could Only Talk~
A few of my f/b friends saw our family at Senior Salsa after church on Sunday. We had our precious Eddie Jett with us, and I felt bad that
he wanted nothing to do with the restaurant. He didn't want to sit down and
eat, and cried much of the time.
We all took turns taking him in and
out of the dining area, but no matter what we did, he continued to fuss.
Chips got thrown, as did the little 25 cent toys from the trinket machines we tried to bribe him with. Nothing helped. Monty wolfed his food
down and finally took Eddie out to the car to listen to the radio while
Sky and I put our food in to-go carriers.
I went home to change and
headed back to Skylar's to help her finish painting her kitchen. When I
got to her house, poor Eddie Jett was still a mess---he just whined,
cried, and rolled around in my lap. I pulled his jeans off and we got
him some "comfy" sweat pants (my personal solution to a bad day.) Skylar decided to also take off his socks. When she removed them
she realized he had a "goat head" sticker wound up in his tiny sock!!!
So the whole time we were sweating it in the restaurant, poor Eddie Jett
wanted nothing more than to tell us what was wrong, but
couldn't. It broke my heart.
I know it's difficult to hear your child
complain at times, but be grateful for those sweet voices of
communication. Our little buddy couldn't tell us all he wanted was the
sticker removed from his sock.
After said evil sticker was removed, Eddie Jett was a happy camper for the rest of the day, and I got lots of hugs and kisses. It reminded me of the story of the tiny mouse that removed the sticker from the lion's sore paw...Eddie Jett and I are friends forever!
Be grateful for the little things in life. Words aren't always needed to show love and support.
Me and my precious buddy, Eddie Jett at Senior Salsa. He managed one smile while trying to eat his chips and salsa with a prickly sticker in his little sock!
Our family had a great time taking all of our little ones bowling Saturday for Eddie Jett's 6th Birthday. If you haven't taken your preschoolers to the bowling alley go!
They had a blast, and even Annabelle, who's just a year old, was able to tip a ball off of the ramp and watch it roll down the lane and knock down some pins.
There was a video arcade, and music as well. What's not to love!
Since music is such incredible therapy for children with special needs, we got Eddie Jett his very own boom box for his room, and Uncle Forrest bought him his first Pantera CD.
Happy 6th Birthday Eddie Jett!
Papa and the birthday boy waiting on a strike~
Even little Annabelle was able to help slide a bowling ball down the ramp and knock down some pins---such a fun outing for the kiddos.
Eddie Jett is always mesmerized by birthday candles--I'm always mesmerized by the promise of chocolate cak
Who had more fun at the arcade
in the bowling alley? Hmmm?
Our little Landon figuring up the mathematical equation to help knock down his 7-10 split. We were playing outside later that day, and Landon was rolling his truck down his Little Tykes slide. He turned to me and said. "Ga-Ga...that's INERTIA---and there's also a sling shot effect!"
I sat dumfounded in my lawn chair for a few seconds...and then goggled inertia on the down low---he was correct! I need to brush up on my science pronto.
We're celebrating our Eddie Jett's birthday tomorrow at the bowling alley, and I wanted to make something unique for his special day. He was over the moon for the white candy coating dipped Oreo snowman---as in, he ate six of them at one sitting!
I found this recipe on Pinterest for almond bark dipped Oreo froggies, and knew this was the one. I think they'll make our precious 6 year old smile. And I'm going to let him eat as many as he wants---he needs some more meat on his little bones. Can't wait to hit the bowling alley for the big party!
Cookies with personality! Ribit!!
I love how each one came out a bit different. The one on the left is a girl, and the one on the right is a boy :) ---I checked~
I used vanilla Candy Quick---you melt it in a double boiler and dip your pretzels and Oreos, placing the pretzels down first, and then the Oreos on top to adhere.
I picked up Trolli Sour Gummie Crawlers and just cut the pink tips off for the frogs tongue, and promptly proceeded to eat the remainder of the candy worm---I love those things. Walmart had white Sixlets in the cake decorating supply isle that were perfect for the eyes. I melted chocolate chips with a bit of butter and, (get this) used a CLEAN Q-tip to dot the melted chocolate on the white candies for the pupil of the eyes, which made each little frog just come alive with expression. These were so much fun to make!
HAPPY BIRTHDAY WEEKEND TO OUR SWEETEST EDDIE JETT!
I came across a site as I surfed the internet this morning, as I often do, searching for special needs sites that support children with needs, as we have our Eddie Jett angel who has 1P36 Deletion Syndrome.
To my delight and surprise, there was a beautiful photo of my cousin with her amazing special needs daughter, Zoe (The Mighty Z) on the first page of the web site!
The site requests notes from other families with children that have special needs. Below is the note I sent to them.
I just found myself, as I do so often, surfing through special needs sites. One in particular was the "Variety" organization that I heard of at our local Cinemark Theater during the movie and advertisement trailers.
I spotted your site, which had a to-the-point name and clicked on. To my utter surprise and delight, there was a portrait of a beautiful family enjoying a day at an amusement park, and the amazing girl being featured was none other than my sweet cousin's daughter, The MIghty Z!! What a small (internet) world!
My family also has a precious special needs angel---my very first grand child, my daughter Skylar's son, Eddie Jett.
Eddie Jett has 1P36 Deletion Syndrome. Soon after he was born he was rushed to the intensive care unit, as he was struggling to breath. He was fitted with a G-tube to help him eat, because he could not nurse. All three of my children were born extremely healthy, and grew up to be beauty queens, Valedictorians, and rock stars---seriously, my son opened for KISS in Stockholm, Sweden at the ripe old age of 15 years old as the lead singer/guitarist for a teen MTV--Capitol Record, rock band!
I never in my wildest dreams, or nightmares, thought I would have anything but healthy, perfect babies in our family, and when Eddie Jett was born it was heartbreaking. Doctors couldn't even diagnose his issues, so was sent home with my young daughter after a month in the Nic-U. We were left with a million unanswered questions.
After quite a few midnight cries, more out of fear and exhaustion than pity, my daughter and I bucked up, tightened the girth on our saddles and jumped on for a wild, unpredictable ride into the unknown.
I stepped in as Skylar's wing-man, and became a hands on Ga-Ga. We took our Eddie Jett to doctor after doctor, only to be passed off from office to office---specialist to specialist, as we continued to just maintain Eddie Jett's life by siphoning nutrients through a tube into his tiny belly. He didn't cry, coo, smile, or interact with us until he was over 3 months old. He was a silent, expressionless, but most precious infant.
I'll never forget standing at the check out line at Wal-mart when my cell phone rang. It was Skylar. She was weeping and yelling as she let me know that Eddie Jett had started CRYING that day! Yes, everyone within an ear shot of me heard this crazy woman shouting, "HE CRIED!!! OH MY GOSH!! HE CRIED! Skylar, that is AMAZZZZING!! Praise God!!! He CRIED---yipppeee!!"
Yep, weird situations like this one happen a lot when you have a special needs angel. You celebrate the boulders that seem like tiny milestones to those with healthy children.
After much research, and finally a trip to a genealogist in Tulsa, Eddie Jett was given the grave, extremely rare diagnosis of 1P36 Deletion Syndrome. The internet, and Google became our worst enemy. Genes aren't something you can just "fix." You can't regenerate the tips of the 1P36 our baby was missing. You don't want to hear about the mortality rate, or bleak symptoms and deficits that come hand in hand much of the time with 1P36. The heart problems, the leukemia, the wheelchairs, the permanent feeding tubes, etc., etc.
Doctors didn't think Eddie Jett would ever eat on his own---a blizzard hit Oklahoma when Eddie Jett was 2 years old. He pulled his Mic-Key button out, it was lost, and my daughter couldn't even get out of her drive way to get him to the hospital to replace it. She placed a tea towel over the hole in Eddie Jett's little belly, and he began drinking and eating soft foods orally that week, with my daughters unwavering dedication and courage to her special needs son. Docs didn't think he would ever walk. He took his first steps at 3 years old in my living room as we enticed him with his favorite obsession...popcorn. Of course, he would never run---Oh yes he is! He is trucking along in his precious "ET"-ish gate, and keeps up with his toddler cousins now! He is not suppose to ever be able to speak, but believe me, we've worked and worked with him, and he can say Mama, and Ga-Ga, as well as a few other select words in his own, Eddie Jett way. But, he could have called me Mud, and I would have said, "Yes!!! My name is Mud!!
Eddie Jett turns 6 years old this weekend. He has inspired each and every person in our family---even his uncle rock star. They are very tight, as Eddie Jett is a nut for loud, heavy music. His favorite song, is one that his Uncle Forrest recorded called, "Sweet Goodbye." One of Eddie Jett's favorite things is to get in his car seat, I roll down the windows, and play it loud as the wind whips through his epic, blonde curls. He even sings along with the chorus---his cue word is "Goodbye." He swings his head from side to side, lifts his fingers in an orchestra conducting manner, and sings the word over and over with the CD with the hugest, life-is-grand smile on his handsome face.
Oh how we love our Eddie Jett. God sent him to our family, and we would never be the same. Even though I've always considered us to be humanitarians, and lovers, Eddie Jett has taught us so much more about humility, patients, and unconditional love than we could have ever imagined possible. If I'm ever having a bad day, I can promise that just the sight of Eddie Jett's little school picture (he's now in Coweta's special needs class---another milestone) that's hanging on my fridge, makes my heart soar, and I cannot help but to smile from ear to ear!
Thank you for letting me share our story. Our family is very blessed to have our Mighty Z, and Eddie Jett the Rock Star! It can be scary at times, dealing with the medical issues, and frustrating when we don't get the answers we feel we need in a timely manner, but on those daunting days, we get in our car, turn up the music, roll down the windows and just sing along with our beautiful, inspirational song bird, Eddie Jett ~~
Eddie Jett's most favorite fixation is popcorn...he knows how to sign
it, (flip both of your index fingers up and down alternatively like
you're doing a happy dance--- there you go---you got it!!! )...he knows where all the movie theaters
are when you're passing them on the highway or expressway, and points to
them because he wants to go inside and get popcorn...HE LOVES IT!!
dada Jeremy bought a popcorn machine for him this Christmas! He and
his sissies are loving it! Skylar took this photo tonight. Wonderful,
magical, popping, popcorn for Eddie Jett and his sisters.
Makes me smile, and remember that the simplest things in life can be
the most memorable~ ps. He takes after his Ga-Ga on the popcorn
obsession. I have to go to the Theater on an empty stomach so I can get a
large popcorn, (with jalapenos in the bottom that I sneak from the well for the hot dogs) or the movie just isn't the same!
This looks like a
vintage moment that will never go out of style~~
Our Eddie Jett has been pulling his chair up to the counter top since Christmas morning to get a peek of his new popcorn popping contraption. He and his sissy Maddy are anticipating the magic!
My daughter, Skylar's heat went out at her house, so I had some pretty sweet visitors make the snowy trek to my place to warm up.
Schools are still closed here in Coweta, so Eddie Jett got another footie pajama snow day.
Eddie Jett has always loved my Christmas angel. He smiles, loves on her, and has one-sided conversations with her, (she's the beautiful silent type.) :)
Very grateful that Sky got her heater fixed so quickly, but sure enjoyed my little Christmas Angels this morning!
Annabelle discovering Ga-Ga's Christmas Angel~
I was so thrilled that I captured the moment that she put her precious little finger under her chin--
Eddie Jett was glad to see his sweet friend had returned for the Holidays---he had quite the conversation with her!
Christmas Warmth <3
Had two more QTs come in the afternoon today---Landon was stoked that I put all the Christmas hats in a basket by the tree. We usually have to put them on them, but he found the festive items and put them on himself~~as you can see he is a proud little Santa's helper!
*Can you tell what movie we're watching? The background still shot of Despicable Me 2 made me laugh!
This is how my daughter Skylar gets Eddie Jett to follow her around the store when she's grocery shopping. I'd follow her too!
HE HAS FUN WHEREVER HE GOES~ Happy Thanksgiving grocery shopping!! And don't forget to take your Cheeto breaks!
FACE BOOK STATUS THIS A.M.
JODY'S ANNUAL F/B --SOAP BOX RANT
usually keep my status upbeat and cheery, but I have to pull out the
soap box for just a moment to vent this morning. This is long, (so you
may not have time to invest in reading this.) Most of you know our
precious Eddie Jett. He has 1p36 deletion syndrome, which is extremely
rare, and has challenged that little guy from the day he was brought
into this world.
I'm so proud of Skylar and Jeremy for their unwavering support, care and love for him, not to mention Tari Jo Blankenship
and the rest of his helpers in his special needs class at Southside.
What has baffled me this morning is the fact that Skylar has had to take
several days this week, dragging him around to Psychiatrist, and Dr.s
verifying that he is truly disabled for the Social Security
Administration. (Mind you, this amazing, precious kiddo will more than
likely never be able to live on his own, and need support from family
members, which is fine...we love him and he will forever be innocent, in
a sense, of the things that jade us in this world.)
had to literally run around after him, trying to keep him contained, as,
at her first appt., she was rudely told, "you guys can go have a seat
now 'please'." as Eddie Jett innocently played near their broken down
weight scales. Skylar looked at the snotty receptionist and said, "he
does not understand the concept of, "have a SEAT." Clueless Dr.s held
up pictures (turtles, etc.) asking him, "what is this?? What is this??
Can you tell me??" Can you stack these blocks into a tower?" and so on
and so forth.
Eddie Jett loves turtles, he would probably try
to hug one if it was put in front of him but certainly cannot verbalize
the term for the little shelled creatures, or understand that it might
snap his little fingers if he tried to kiss it. Eddie Jett loves
blocks, but cannot build a "tower" as his dexterity skills are affected
greatly by his syndrome, (he took his first steps at the age of three.)
Most six year olds are in first grade, speaking,reading,dressing
themselves, playing T-ball, etc., where Eddie Jett is celebrating his
milestones one wobbly step at a time.
Just yesterday, Skylar
called me in joyful tears, shrieking and telling me that she asked Eddie
what DVD he wanted to watch, and he (mocking his little sister Maddy,
who always says this) said in his precious way, "mmm, I dun know!!" I
screamed so loud on the phone, so excited about his little phrase, that
anyone would have thought I won Publisher's Clearing House Sweepstakes!!
We usually know what Eddie Jett wants, as our family knows Eddie's
special body language,(he has approximately three or four words that he
puts his spin on, but
it's heartbreaking when he is sick, has a headache, or really wants
something, and he cannot specifically tell us. To see him cry, and just
point to his head if something scares him or he's not feeling well is
My point to this long rant is; there are so many
who take advantage of our social security system, welfare, etc. So
much abuse of government funds by people who just breeze through the
system, but I have time and time again listened to Skylar as she tells
of the red tape, form after form after form she has to fill out in
triplicate, and phone call, after phone call she makes that doesn't get
returned. And when it does she's transferred to someone who is clueless
as to Eddie's condition, and frankly most don't seem to care. I am more
than upset by the way
Skylar and Eddie Jett had to jump through hoops,
just so his condition could be verified AGAIN. They made her feel as
though she and her sweetest boy were on trial. Skylar is the most
incredible mother with two other precious children to care for as well.
I'm so proud of how she handles all the responsibility, and loves on
those kiddos everyday. (She just called me, and is in the middle of
making them pancakes ---and not the microwave version
I"m upset that Skylar had to sit, as a mother, and put up with the
indignity of Dr.'s and staff basically rubbing it in her face that Eddie
Jett truly has severe issues to deal with, physically and mentally. All
they had to do is order, AGAIN, previous records of the countless
hospital, and specialist's visits, Shriner visits, therapy visits, and
school records (which, they ALREADY have on file.)
they may have assumed that Eddie Jett magically re-grew the tips of his
1p36 Chromosome since they last checked! Parents of these precious
children have so much on their plate, so much to deal with each and
every minute of every day. There's never even an hour to just be in
Zen mode. Bureaucracy is the last thing they should have to deal with.
In conclusion, the receptionist that looked down her nose at Skylar and
Eddie Jett, as he toddled around her office (feeling trapped in the
room, as he always does at Dr.'s offices) with Sky hot on his trail as
usual, telling them they NEEDED TO HAVE A SEAT, was certainly lucky
Ga-Ga was not there! I may have just pulled her up out of hers! (Did I
just say that?...yep I did.)
Thinking of the families that
have special angels this morning, and saying a prayer for you all. May
the system be kind to you, and may you get moments of peace. Deep
Much love and many blessings,
This little guy is my most special Dude!! <3
Ga-Ga and Eddie Jett~
I jazzed up Eddie Jett's snack for school today~
Hopefully, it'll make his teachers smile. They are such beautiful ladies---we appreciate them so much!
As much as we'd all like to think the world is all cotton candy and carousel rides we know it's not. In the midst of all the excitement of taking my four sweet grand children to our local Fall Festival yesterday evening, I had a sobering moment.
My husband was helping all the kids get their wrist bands in order to board the amusement rides, and excitement was in the smoked turkey leg scented air. Happy shrieks and thrilling screams were zipping through the air as the community was in full celebration mode downtown.
It was Eddie Jett's turn to hold out his arm for his purple and white polka dotted, festive wrist band. As the ticket girl started to try to secure the adhesive around his teeny, tiny wrist I saw the color drain from Eddie Jett's precious face. A look of concern and seriousness took him over, and he began to cry very hard. It only took a few seconds for my daughter and I to realize that Eddie Jett thought they were strapping a hospital band on his arm. Eddie Jett thought he was on is way to tests and sharp needles. Getting blood drawn, (which is a routine occurrence for him) and having IV's inserted always take many, many sticks and lots of tears and sweat because of his very small veins that collapse and roll.
My heart sunk as I tried to console our sweet angel. The lovely girl that was helping at the ticket booth suggested that we put it around his ankle where his sock would cushion and desensitize his skin from the festive paper band so he would forget it was there.
Within a few minutes Eddie Jett was back into happy mode with the rest of his miniature cousins, and zipping down The Fun Slide with his Uncle Forrest. A big smile returned to his innocent face as he forgot all about the trauma of being fitted with the daunting wrist band.
I thank God every day for all of my family. I thank God every day for giving our family Eddie Jett. I thank God that I know that one day Eddie Jett will receive a perfect body in Christ as we all will. His journey, is our journey, and we pray together through the moments the journey leads us to hospitals and Dr. offices---and cherish the times that it leads us to carnival rides and cotton candy~
Our sweet boy getting nervous about the wrist band being secured around his tiny wrist
The big smile that graced his face as the fun on the rides began!
And one of his favorite parts of the Festival was his Auntie Shannon's Pony Rides <3
"Eddie Jett---The Pony Whisperer."