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 ~~