I am always excited about the future as dreamers usually are. I always like to try to be optimistic. My motto is, "if today is not a good day, tomorrow probably will be."
Five years ago this last month my optimistic personality was challenged greatly. My sweet daughter Skylar gave birth to my first grand child. A precious little boy. Our Eddie Jett angel. We knew something was not right from the very start. Eddie Jett had strider, or trouble breathing, especially when he tried to nurse. Within hours our little guy was transferred to the NICU (or neonatal intensive care unit.) For a solid month I worked during the day at an optometric practice, and traveled back and forth to Tulsa each and every day without fail, to be by my daughter's side after work. Skylar was so strong. She had no choice but to be strong, as a brand new fragile life depended on her from that moment forward.
Eddie Jett failed to nurse and gain weight so he was fitted with a Mic-Key button in his little belly so that we could tube feed him directly into his stomach. I quit my full time job and began to take care of Eddie Jett while Skylar continued her job at a law firm in Tulsa. Needless to say, it was a challenge to deal with all his medical issues, but I was so thankful for our sweet baby, and all the time I was able to spend with him. Sky eventually quit her job, and began to stay home with Eddie Jett as the doctor visits outweighed her job opportunity.
It took almost two years for a genetic specialist to finally diagnose Eddie Jett with an extremely rare genetic disorder called 1-p36 deletion syndrome. Our precious baby Eddie did not even make a sound to cry until he was almost three months old. I remember standing in line at Wal-Mart when my daughter called me to tell me he had started whimpering, and let out a verbal cry. I stood there with people staring saying over and over, "He's CRYING!!! Oh my GOSH!! That's so AMAZING!!!! YEAH Skylar...I'm SOOO happy!!!!" You can just imagine the stares I got. We were literally thrilled that he was even making a sound---crying was like music to our ears!
Eddie Jett became a Shriner's baby. The good news was, he had an incredible genetic specialist---the bad news was, he let us know that Eddie Jett would have this condition for the rest of his life. Google became my enemy. There was not much information regarding 1-p36 deletion syndrome, and what was there did not hold much hope for a normal future. I cried over my lap top many times. Here's where my optimistic outlook was challenged. I had to pull myself up by my boot straps, not only for my own sake, but for the sake of my stressed daughter.
Flash forward five years...Eddie Jett is beyond any blessing our family could have ever received. He has taught us more about patience, faith and hope than anything in our lives had ever done. What an absolute pure joy he is. Although Eddie Jett did not even take food by mouth until he was over two years old... he did begin eating---lots. He did not even take his first step until he was over three years old...but now he's practically running. He did not even murmur his first word until he was three and a half...but now he has a few special words he says (my favorite of which is Ga-Ga), and other than that, he does not have to speak a word. We know exactly what he wants, when he wants it. He communicates with us through touches, directional points, a few signs, and most of all, hugs, smiles and laughter. He is so smart, even though he only verbally speaks a handful of words. He is utterly our angel from heaven. Everyone in our family are better people because of our special Eddie Jett.
Eddie Jett loves music. He responds to it, dances to it, and to Uncle Forrest's utmost delight, "head bangs" to it! He loves, loves, loves, music. Forrest is finally returning to the recording studio on March 2nd at David Teegarden's studio in Natura, Oklahoma. Forrest has quite a few songs that he's been working on, and he feels that it's finally time for him to officially record some demos---southern rock style. I cannot wait to get a CD and give it the old drive test---to put this disk in my cars player, roll down a window or two and turn it up. That's the truest test of a songs virtue in my book.
What is most special about the songs Forrest wants to record, is that he is going to be recording them for Eddie Jett. There is finally a 1-p36 deletion syndrome conference for families of children with the genetic disorder fairly close to home in San Antonio, Texas in August. Neither Skylar, or Eddie Jett have ever come face to face with another child with this condition. They are the most precious of little ones. Since money is tight for Sky, because she can no longer work a full time job in order to take care of Eddie Jett's ongoing medical and daily needs,Forrest has decided to sell the CD for small donations ,and start a fund for Skylar and her family that will help enable them to attend the conference this summer.
This of course, brought Skylar to tears. What better reason to make music than for his special angel...his heart warming little nephew that lights up any room he enters. The baby boy that keeps me optimistic, and full of hope each and every day that I live on this earth--music for our Eddie Jett~