ONCE ETHAN GOT OVER THE INITAL SHOCK OF NOT BEING ABLE TO MOVE HIS LEGS, HE DID GREAT. HE ADJUSTED SO WELL, AND WAS JUST SO HAPPY TO SEE KEVIN AND I WERE THERE WITH HIM. EVERY TIME THIS KID GOES THROUGH A SURGERY OR SOMETHING PAINFUL OR SCARY IT AMAZES ME HOW STRONG HE IS, IT AMAZES ME HOW EASILY HE CAN FORGIVE US FOR PUTTING HIM THROUGH ALL THIS, AND AMAZES ME HOW HE FOR SOME REASON IS THE ONE TRYING TO MAKE US FEEL BETTER INSTEAD OF US BEING STRONG FOR HIM. KEVIN AND I BOTH FEEL EXTREMLY LUCKY TO HAVE SUCH A STRONG HAPPY KID. THE NUSRSES TOLD US OVER AND OVER AGAIN HOW THEY COULDN'T BELEIVE HOW WELL ETHAN WAS HANDLING THE CAST, AND HOW HIS HAPPINESS MADE THEIR DAYS BETTER.
WHEN WE GOT RELEASED FROM THE HOSPITAL FRIDAY WE WERE SO EXCITED TO GO HOME, BUT YET A LITTLE NERVOUS. I STARTED TO PANIC ABOUT HOW THE HELL I WAS GOING TO BE ABLE TO DO THIS FOR 16 WEEKS. WHEN ALL THE IVS AND WIRES CAME OFF I WAS FINALLY ABLE TO HOLD AND COMFORT MY BABY. IT WAS AWKWARD AT FIRST TO HOLD HIM NOT ONLY WERE HIS LEGS SPREAD FAR APART BUT HE WEIGHED MORE. WE GOT HIM FITTED TO HIS NEW (RENTED) CAR SEAT AND TOOK ETHAN HOME.
WHEN WE GOT HOME WE TRIED OUT HIS NEW BEAN BAG AND HIS CHAIR WE BOUGHT HIM, WE WERE TRYING TO JUST FIGURE WHAT WOULD WORK AND WHAT WOULDN'T. WHERE WILL ETHAN BE THE MOST COMFORTABLE? WHERE CAN WE PUT HIM WHERE THE BLOOD ISN'T RUSHING DOWN HIS LEGS OR HIS FEET AREN'T FALLING A SLEEP? WE STARTED TO FIGURE OUT EXATLY HOW THE NEXT FOUR MONTHS WERE GOING TO GO..... AND TO BE HONEST IT IS GOING TO BE ROUGH.
IT HAS BEEN FIVE DAYS NOW ( AROUND 115 MORE TO GO BUT WHOS COUNTING?) AND WE ARE STARTING TO ADJUST AND STARTING TO FIGURE OUT WHAT WORKS FOR US. THE PROBLEM WE ARE HAVING NOW IS ETHAN GETS SO BORED. NO MATTER WHERE HE IS SITTING OR HOW MANY TOYS ARE IN FRONT OF HIM WHEN HE CAN'T MOVE MUCH HE GETS EXTREMLY BORED. I CAN'T BLAME HIM. WITH ALL HIS THERAPY ETHAN WAS JUST FIGURING OUT HOW TO ROLL OVER AND MOVE HIS LEGS AND SCOOT AROUND HIS THERAPY MAT, HE WORKED SO HARD TO GET THERE AND NOW SUDDENLY THAT IS ALL TAKEN AWAY. SO FAR THIS HAS BEEN THE HARDEST PART FOR ME IT JUST LOOKS SO FRUSTRATING, AND I AM NOT ABLE TO EXPLAIN TO HIM THAT IT IS FOR THE BEST.
SOMETIMES I THINK " THANK GOD THIS IS HAPPENING NOW AND WE CAUGHT IT EARLY" BUT OTHER TIMES I THINK HOW MUCH EASIER IT WOULD HAVE BEEN IF HE WAS OLDER AND WE WERE ABLE TO EXPLAIN TO HIM WHY THIS IS HAPPENING, OR HE WAS ABLE TO TELL US HE WAS IN PAIN OR ITCHED OR HOT, OR EVEN JUST FRUSTRATED. ETHAN WAS CRYING LAST NIGHT (A LOT FOR HIM) AND I FEEL SO BAD BECAUSE I AM NOT SURE EXACTLY WHAT IS BOTHERING HIM, I WAS WARNED HE WOULD GET MUSCLE SPASMS SO MAYBE HE IS IN PAIN, BUT IF HE IS JUST BORED OR MAYBE ITCHING I DON'T WANT TO MEDICATE HIM, AT THE SAME TIME IF HE IS IN PAIN I WANT TO MAKE SURE I AM GIVING HIM HIS PAIN MEDS. HOPEFULLY IT WILL GET EASIER THE MORE ALL OF US GET USE TO IT.
ANOTHER THING THAT IS EXTERMLY IRRATATING IS OTHER PEOPLE. I CAN'T STAND THE STARES PEOPLE GIVE US " NO PEOPLE WE DO NOT BEAT OUR KID". I ALSO CAN'T STAND WHEN A COMPLETE STRANGER COMES UP AND ASKS WHAT HAPPENED, I DO NOT FEEL LIKE I NEED TO EXPLAIN TO PEOPLE I DON'T EVEN KNOW WHAT IS GOING ON WITH MY CHILD, MAYBE IT IS JUST ME BUT I FEEL IT IS RUDE TO EVEN ASK. THE WORST IS WHEN PEOPLE COME TO SEE HIM AND THEY LOOK AT US AND SAY " IT'S NOT THAT BAD" REALLY IT'S NOT? HOW MUCH WORST CAN IT GET , WOULD YOU LIKE HIS ENTIRE BODY CASTED? IT JUST DRIVES ME INSANE IT'S NOT THAT BAD BECAUSE IT IS NOT THEIR CHILD THAT HAS TO GO THROUGH THIS, AND I KNOW MOST PEOPLE SAY IT TO MAKE ME FEEL BETTER BUT IT DOESN'T AT ALL.
ONE THING THAT DOES MAKE ME FEEL BETTER IS HOW AMAZING MY HUSBAND IS. HE MAKES THE EXPERINCE SO MUCH EASIER FOR ME, WHEN I HAVE SUCH A GREAT PARTNER. WHEN HAVING A SPECIAL NEEDS KID THE DIVORCE RATE IS EXTREME, AND I SEE WHY. WITH A SPECIAL NEEDS KID YOU FOCUS ALL YOUR TIME AND ENERGY ON YOUR CHILD, APPTS., THERAPY, SPECIALIST, SURGERIES, A SPICA CAST HA HA, AND YOU DON'T TAKE THE TIME FOR YOUR SPOUSE. I CATCH MYSELF FALLING INTO THE PWS TRAP AND CONSUMING MY ENTIRE LIFE WITH ETHAN'S NEEDS. KEVIN GROUNDS ME AND MAKES ME REALIZE JUST HOW LUCKY I AM TO HAVE A MAN IN MY LIFE THAT WANTS EVERYTHING I WANT FOR ETHAN AS WELL. KEVIN IS SO PROUD OF ETHAN AND SOMETIMES HAS TO POINT OUT ALL THE ACCOMPLISHMENTS TO ME WHEN I AM OVERWHELMED AND WORRYING ABOUT WHAT IS NEXT. I GOT TO TELL YOU I DO NOT HAVE A CLUE HOW SINGLE PARENTS DO IT AND COULD NOT EVEN IMAGINE DOING THIS ALONE.
HERE ARE SOME PICS OF ETH IN HIS NEW CAST.....
An old friend had a similar cast for many months when she was a baby. To her mother the time was endless. She has no memory of it, and reconforming her hip then has allowed her to be reasonably athletic now.
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