Friday, November 20, 2009

GRADUATION !!!


MY BABY HAS GRADUATED! MAN I FEEL SO MANY EMOTIONS AT ONCE AT A TIME LIKE THIS. I HAVE THIS EXCITEMENT AND JOY THAT I JUST WANT TO SHOOT THROUGH THE ROOF, A HAPPINESS ONLY A TRULY PROUD PARENT COULD HAVE, AND AT THE SAME TIME AN OVERWHELMING UNCERTAINTY TO HOLD ON TO SOMETHING I HAVE HAD AS A PART OF MY LIFE FOR THE LAST 8 ALMOST 9 YEARS.

THIS TREK IN MY LIFE HAS BEEN A LONG, ROUGH ROAD, WITH SO MANY OBSTACLES I CAN'T EVEN COUNT. IT HAS BEEN A JOURNEY I WILL NEVER FORGET, AND A GRADUATION WELL WORTH THE FIGHT.

AS OF NOVEMBER 17, 2009 CONNER HAS BEEN DISCHARGED FROM PHYSICAL THERAPY, OCCUPATIONAL THERAPY, FEEDING THERAPY, AND SPEECH THERAPY. AT ONE POINT IN MY LIFE I THOUGHT WE WOULD NEVER GET HERE, I TOLD MYSELF A LONG TIME AGO IT DIDN'T MATTER IF WE EVER GOT DISCHARGED, I LOVE MY BUBBLES NO MATTER WHAT, BUT TO SEE THE GROWTH AND DEVELOPMENT I HAVE SEEN OVER THE LAST 8 PLUS YEARS AND TO BE DISCHARGED AGAINST ALL ODDS AND ALL PROGNOSIS; THE FEELING IS TRULY PRICELESS.
FOR THE FIRST THREE YEARS OF CONNER'S LIFE HE COMMUNICATED ONLY BY SIGN LANGUAGE. IT WASN'T EASY TO LEARN OR TO TEACH, BUT HAVING A TRACHEOTOMY PROVIDED NO OPPORTUNITY FOR SPEECH, SO TO COMMUNICATE WITH OUR LITTLE ONE, IT WAS MUCH NEEDED. CONNER'S FAVORITE SIGN WAS I LOVE YOU. AFTER COMING OFF A VENTILATOR AND MOVING TO ONLY OXYGEN THROUGH HIS TRACH, WE WERE ABLE TO PLACE A SPEAKING VALVE ON HIS TRACH AND TEACH HIM TO USE HIS VOICE. I REMEMBER THE FIRST TIME THEY PUT THAT VALVE ON. HE WAS CRYING BECAUSE HE DIDN'T UNDERSTAND WHAT WAS HAPPENING, I DON'T BLAME HIM, BUT THE FIRST THING I HEARD WAS THE SOUND OF HIM CRYING. AND THEN OF COURSE I WAS CRYING :) FOR A LONG TIME WE KNEW HE WAS CRYING BY LOOKING AT HIM, BUT WE WERE UNABLE TO HEAR HIM. AND NOW AFTER 8 YEARS OF SPEECH THERAPY, WE HEAR HIM.



CONNER HAS WORKED SOOO HARD FOR SO LONG TO ACHIEVE THE STABILITY HE HAS NOW. WE USE TO HAVE TO GET HIM UP AT SIX THIRTY IN THE MORNING FOR AN HOUR LONG OF PHYSICAL THERAPY, AND WE DID THIS THREE TO FOUR DAYS A WEEK FOR TWO YEARS. THEN WE WENT TO TWICE A WEEK FOR TWO MORE. AND FOR THE LAST FOUR WE HAVE GONE ONCE A WEEK. WE HAVE ALSO TRAVELED TO MILWAUKEE WISCONSIN FOR AN INTENSIVE FEEDING TEAM THAT HELPED US LEARN THE TOOLS TO TEACH CONNER HOW TO EAT. CONNER HAS BEEN TUBE FED FOR SEVEN YEARS, AND JUST LAST YEAR HE HAD HIS FEEDING TUBE REMOVED. WHAT A CHANCE AT A SKILL SO MANY OF US TAKE FOR GRANTED EVERY DAY...EATING. AFTER BEING TURNED DOWN BY SEVERAL INTENSIVE FEEDING TEAMS AROUND THE GLOBE BECAUSE OF HIS EXTENSIVE MEDICAL HISTORY, WE WERE FINALLY ACCEPTED TO THE CHILDREN'S HOSPITAL IN MILWAUKEE. WE WERE ACCEPTED WITH THE UNDERSTANDING THAT THERE WERE NO PROMISES, AND THEY WOULD ONLY DO AS MUCH AS HE COULD PHYSICALLY HANDLE, WHICH WAS NOT MUCH. WE DROVE TO MILWAUKEE EVERY OTHER MONTH AND STAYED AT THE RONALD MCDONALD HOUSE FOR A WEEK. WE DID THAT FOR TWO YEARS. AFTER ALL THEY COULD DO AND ALL THE TEACHING WE COULD LEARN WE WERE AGAIN TURNED OUT ON OUR OWN. NOW 8 YEARS AND 7 MONTHS LATER, MY BUBBLES CAN EAT WITHOUT THE AID OF A TUBE.SO MANY THINGS...SO MANY LITTLE THINGS THAT HE HAD TO LEARN. THINGS YOU AND I CAN'T EVEN UNDERSTAND WHY IT WOULD BE SO HARD. EATING, WALKING, SITTING, CRAWLING, TEXTURE, SOUND, SMELL, CROWDS, BREATHING....THINGS THAT OUR BODIES DO NATURALLY. THINGS THAT YOU CAN'T EVEN IMAGINE HAVING TO LEARN ALL OVER AGAIN. SO MANY THINGS A LITTLE GUY HAD TO DO ALL OVER, AND WORK SOOOOOO HARD FOR. THINGS THAT HAVE TAKEN 8 YEARS TO LEARN. I SIT AND THINK OFTEN ABOUT HOW A PARENT FEELS WHEN THEIR CHILD TAKES THE FIRST STEP, OR BITE OF SOLID FOOD, OR CRAWLS, OR ROLLS OVER, OR PERHAPS THE SIGHT OF ANOTHER BREATHE AFTER A SERIOUS ILLNESS, OR CHOKING. BUT CAN YOU IMAGINE THE SIGHT AND THE FEELING OF SEEING THOSE THINGS WHEN EVERY MEDICAL PROFESSIONAL TELLS YOU HE CAN'T, OR WON'T? THE FEELING IS THE SAME....PRICELESS, BUT AT SUCH A HIGHER LEVEL OF INTENSITY I CANNOT EXPLAIN.

MY CONNER HAS DONE A LOT OF THINGS IN HIS 8 YEARS HERE ON EARTH THAT MOST PEOPLE WILL GO A LIFETIME WITHOUT EXPERIENCING. HE HAS BEEN A TROOPER THE WHOLE WAY THROUGH. JUST ONE OF THOSE BABIES WHO DESPITE THEIR PAIN AND OBSTACLES, CONTINUED TO SMILE.

AFTER JUST THE FIRST YEAR OF HIS LIFE I WAS CERTAIN HE WOULD REFRAIN FROM BONDING WITH ME IF I HELD HIM DOWN FOR YET ONE MORE IV LINE OR ONE MORE SHOT, BUT CONNER HAS LOVED EVERYONE EVERY STEP OF THE WAY. I AM SO DEEPLY PROUD OF THE EXAMPLE, THE PATIENCE, THE SINCERITY, THE HUMBLENESS, THE STRENGTH, AND THE LOVE CONNER HAS. I HAVE NEVER SEEN ANYONE ENDURE SO MUCH AND BE SO HAPPY. HE HAS A LOT A HEAD OF HIM, BUT I KNOW HE IS STRONG....LOOK AT HOW MUCH HE HAS ACCOMPLISHED. A LOT OF PEOPLE ASK HOW WE EVER DID IT, OR CONTINUE TO DO IT, BUT MY ANSWER IS JUST THE SAME TODAY AS IT WILL BE TOMORROW; WE JUST DO IT. IT IS A LIFESTYLE THAT HAS BEEN A ROLLER COASTER, AND WILL CONTINUE TO BE SO, BUT I WOULDN'T TRADE MY BUBBLES FOR A SINGLE MINUTE FOR ANYTHING ANYONE CAN PROVE TO BE BETTER. NOTHING IS BETTER FOR ME.

CONGRATULATIONS CONNER...YOU HAVE ACHIEVED SO MUCH, WITH EVERYTHING AGAINST YOU, YOU HAVE ONCE AGAIN DEFIED ALL ODDS. I AM SO TRULY GRATEFUL TO BE YOUR MOM. YOU ARE LOVED SO MUCH AND ALWAYS WILL BE. YOU ARE MY STRENGTH, MY SUNSHINE, MY BUBBLES...MY CONNER. AND I LOVE YOU.

LOVE, MOM

Sunday, November 15, 2009

AFTER LOOKING THROUGH MY POST I FORGOT THESE LAST FEW PICS!! SO...FINALLY...OUR FANCY PUMPKINS. THERE'S A GOBLIN IN THE MIDDLE WITH SLEEPING BEAUTY ON TOP AND JASMINE ON THE BOTTOM.
TAYLOR GOT HER FACE PAINTED AT THE CARNIVAL. A BIG SPIDER, EQUIPPED WITH JEWELS :)
AND LAST OF ALL A PIC OF US AT THE CARNIVAL. HAPPY HALLOWEEN!!!

HALLOWEEN PART 2

I HAVE TO SHARE THE REST OF MY HALLOWEEN PICTURES BEFORE IT'S THANKSGIVING! WE DID A HALLOWEEN PARTY FOR THE KIDS OVER AT AMBER'S HOUSE. CELESTE WAS DOWN VISITING AND CAROL LOVES TO PARTY, SO THEY SET UP A COOL LITTLE PARTY FOR THE KIDS; COMPLETE WITH DECORATIONS, FOOD, AND GAMES.

DARREN AND CAROL DECORATED THE MUD ROOM INTO A SPOOKY DINING AREA FOR THE KIDS.


AMBER COOKED UP SNAKE, AND IT WAS FABULOUS HOW IT SPLIT AND SPILLED IT'S GUTS! THE KIDS WERE A LITTLE HESITANT TO EAT, BUT AFTER THEY TASTED, IT WAS GOOD.


WE LET THEM BOB FOR APPLES. THAT WAS PRETTY FUNNY, ALL THESE KIDS, ONE BIG BOWL OF APPLES....YUCK. :) THEY SURE HAD FUN THOUGH.






OUR GRAVEYARD DESSERT TURNED OUT GREAT. AMBER MADE THE GRAVEYARD WITH PUDDING AND CHOPPED UP COOKIES AND I DECORATED IT WITH TOMBSTONES AND GHOSTS...YES THOSE WHITE THINGS ARE SUPPOSE TO BE GHOSTS....I TRIED.

WE ALSO MADE GHOSTS OUT OF SOCKS. I BOUGHT SOCKS AND WE CUT THE BOTTOMS OFF AND THEN GLUED EYES ON THEM. THEY WERE SUPER CUTE.


THE KIDS HAD A GREAT TIME. I HOPE THEY KNOW HOW SPOILED THEY ARE CAUSE THIS WAS A SUPER DUPER PARTY.... :)

Tuesday, November 3, 2009

TRICK...OR TREAT?

Ah, another holiday behind us, three more to really go. good thing they jam them all into about three months, I don't think I could be crazy all year long! :) Actually I like Halloween. Pumpkins, lights, costumes, candy...candy. kids were all cute this year, as always...how could a kid not be cute in a Halloween costume...o.k. i have seen some not so cute costumes, but that doesn't mean the little people inside them aren't cute. Needless to say, my kids were dashing this year. I finally convinced Conner to give up the sully costume from monsters Inc., the same one i have in every Halloween picture for the last five years. He decided he would be an old man. He pulled it off perfectly, even the walk.


Taylor wanted to be a witch again, but this year she wore the grey hair and I talked her into painting her face green. She is a good little witch.


Presley didn't get to choose her costume, last child syndrome...hand-me-downs. She was an elephant, but I have to say a darn cute one. she loved me putting pink blush on her cheeks...I had to reapply several times just to keep her happy :)She wasn't too sure about the whole trick or treat thing, but she soon joined in after seeing candy was involved and mom was close. In fact she was a little stinker cause after we went to the church party I took them out to hit a few houses, and I just let her run up with the other kids. Well, before I know it she's walking right into the house past the lady with the candy and headed down the hall!!! I ran up after her and the lady was like," oh, sweetie you can't just come into a strangers house." I was embarrassed, but oh well. Nice big dog sitting in the living room too, needless to say I walked her to the door each time after that.


I think the kids had a lot of fun this year. Chili, candy, face painting, trick or treating, costumes, my yummy caramel corn...I think it was a good one. Boy they are getting big fast.