SO I WAS LOOKING THROUGH OUR "JUNK DRAWER" TRYING TO FIND EARPHONES FOR MY IPOD, WHEN I CAM ACCROSS MY " DIRECTIONS FOR ETHAN'S FEEDING TUBE". WHEN ETHAN USED HIS FEEDING TUBE ( UNTIL HE WAS 3 MONTHS OLD) I WROTE OUT STEP BY STEP DIRECTIONS FOR ALL OF OUR FAMILY THAT WOULD BE WATCHING HIM. SO I FOUND THESE STUFFED IN THE " JUNK DRAWER" AND COULDN'T BELEIVE HOW LONG AGO THAT SEEMED.
IT BROUGHT ME BACK TO THOSE EARLY DAYS OF DOUBT THAT ETHAN WOULD NEVER BE ABLE TO EAT ON HIS OWN. THERE WERE DAYS THAT I FELT SO DOWN AND DISCOURAGED AND DAYS THAT IT WOULD TAKE HIM LITERALLY AN HOUR TO GET 2 OUNCES OF MILK DOWN WITH A SYRINGE.
IT ALL SEEMS LIKE A DISTANT MEMORY, IT SEEMS LIKE FOREVER AGO. IT MADE ME OPEN MY EYES TO HOW FAR ETHAN HAS COME, IT IS TRULY AMAZING. HE HAS WORKED SO HARD TO BECOME WHO HE IS TODAY AND I AM SO PROUD OF ALL THE ACCOMPLISHMENTS SO FAR. IT MADE ME REALIZE THAT ALTHOUGH RIGHT NOW IT MAY FEEL LIKE HE WILL NEVER CRAWL OR NEVER WALK, HE WILL. HE WILL DO IT ON HIS OWN TIME, BUT HE WILL DO IT.
I DON'T THINK IT WAS AN ACIDENT THAT I CAME ACROSS HIS FEEDING DIRECTIONS, I THINK IT WAS MORE LIKE A WAKE UP CALL FOR ME. SOMEONE WAS TRYING TO TELL ME TO LET ETHAN DO THINGS ON HIS OWN TIME, CONCENTRATE ON THE THINGS HE CAN DO RATHER THEN THE THINGS HE CAN'T. DON'T EVER LET THE THINGS HE STRUGGLES AT OVER SHADOW THE THE THINGS HE HAS ACCOMPLISHED.
THIS TOO WILL SOON BE A DISTANT MEMORY.... LESSON LEARNED!
Thursday, December 15, 2011
Wednesday, December 7, 2011
NOT ENOUGH TIME TO BE OVERWHELMED
KEVIN STARTED A NEW JOB AND CAN'T TAKE TIME OFF YET FOR ETHAN'S APPOINTMENTS, WHICH I KNOW ISN'T HIS FAULT.I LIKE GOING TO APPOINTMENTS ANYWAYS BECAUSE I NEED TO BE THERE TO ASK QUESTIONS AND HEAR WHAT THE DR. HAS TO SAY. HOWEVER IT HAS BEEN GETTING STRESSFUL FOR ME LATELY. DUE TO ALL ETHAN'S MEDICAL NEED I AM COMPLETLY OUT OF VACATION TIME FOR THE YEAR AT WORK. OUT OF THE 4 WEEK I GET I THINK I HAVE TAKING 1 AND 1/2 ACTUAL VACATION DAYS, AND THE REST HAVE BEEN FOR APPTS.
JANUARY 1ST, AND THE NEW VACATION TIME CAN'T COME SOON ENEOUGH. NOT ONLY AM I COMPLETLY OUT OF TIME AND HAVE MANY APPTS STILL SCHEDULED ( I WILL HAVE TO TAKE IT WITHOUT PAY) ETHAN HAS ALSO BEEN SICKER THAN EVER THIS FALL/WINTER. HE TRULY HAS BEEN SICK OFF AND ON NON STOP SINCE SEPTEMBER. EVERY WEEK IT IS SOMETHING NEW. I FEEL SO BAD FOR MY BABY, AND HATE HATE HATE LEAVING HIM WITH THE BABYSISTER ( FAMILY MEMBER BUT STILL) WHILE HE IS SICK.
I FEEL SO GUILTY LIKE A MOM SHOULD BE THERE WHEN HER CHILD IS SICK, IT ISN'T FAIR TO HIM OR THE SITTER BUT YET WE HAVE NO CHOICE. I AM PRYAING TO GOD THAT ETHAN'S IMMUNE SYSTEM GETS STRONGER AND THIS IS JUST FOR THIS YEAR NOT EVERY WINTER OR ELSE I DON'T KNOW WHAT WE WILL DO. SOMETIMES I WISH WE COULD JUST SELL THE HOUSE AND THE CARS AND MOVE INTO AN APARTMENT SO ONE OF US COULD STAY HOME WITH HIM. I JUST DON'T GET HOW OTHERS DO IT.
HOW DO OTHER PARENTS WITH A SPECIAL NEEDS KID STILL WORK FULLTIME JOBS AND STILL HAVE TIME FOR ALL THE APPTS AND THERAPIES AND SUPRISES THAT POP UP. OBVIOUSLY YOUR CHILD COMES FIRST BUT YOU STILL HAVE TO RESPECT YOUR JOB SO YOU CAN BRING HOME A PAYCHECK AND KEEP YOUR CHILD'S INSURANCE.
SOMETIMES IT IS ALL A LITTLE OVERWHELMING AND YOU START FEELING BAD. YOU START THINKING ABOUT IF YOU WERE TO BE A STAY HOME MOM ALL THE NEW DOORS THAT OPEN UP.,ALL THE EXTRA THERAPIES YOU COULD FIT IN OR YOU WOULD FINALLY HAVE THE TIME TO DRIVE ACROSS TOWN TO ALL THE "BEST OPTIONS" IN THE STATE.
SOMETIMES I WISH THERE WERE JUST MORE HOURS IN THE DAY, OR MORE FLEX IN OUR BUSY SCHEDULES. I KNOW THIS WILL PASS AND THINGS WILL WORK OUT. I AM JUST WAITING TO SEE THE LIGHT AT THE END OF THIS CRAZY TUNNEL.
JANUARY 1ST, AND THE NEW VACATION TIME CAN'T COME SOON ENEOUGH. NOT ONLY AM I COMPLETLY OUT OF TIME AND HAVE MANY APPTS STILL SCHEDULED ( I WILL HAVE TO TAKE IT WITHOUT PAY) ETHAN HAS ALSO BEEN SICKER THAN EVER THIS FALL/WINTER. HE TRULY HAS BEEN SICK OFF AND ON NON STOP SINCE SEPTEMBER. EVERY WEEK IT IS SOMETHING NEW. I FEEL SO BAD FOR MY BABY, AND HATE HATE HATE LEAVING HIM WITH THE BABYSISTER ( FAMILY MEMBER BUT STILL) WHILE HE IS SICK.
I FEEL SO GUILTY LIKE A MOM SHOULD BE THERE WHEN HER CHILD IS SICK, IT ISN'T FAIR TO HIM OR THE SITTER BUT YET WE HAVE NO CHOICE. I AM PRYAING TO GOD THAT ETHAN'S IMMUNE SYSTEM GETS STRONGER AND THIS IS JUST FOR THIS YEAR NOT EVERY WINTER OR ELSE I DON'T KNOW WHAT WE WILL DO. SOMETIMES I WISH WE COULD JUST SELL THE HOUSE AND THE CARS AND MOVE INTO AN APARTMENT SO ONE OF US COULD STAY HOME WITH HIM. I JUST DON'T GET HOW OTHERS DO IT.
HOW DO OTHER PARENTS WITH A SPECIAL NEEDS KID STILL WORK FULLTIME JOBS AND STILL HAVE TIME FOR ALL THE APPTS AND THERAPIES AND SUPRISES THAT POP UP. OBVIOUSLY YOUR CHILD COMES FIRST BUT YOU STILL HAVE TO RESPECT YOUR JOB SO YOU CAN BRING HOME A PAYCHECK AND KEEP YOUR CHILD'S INSURANCE.
SOMETIMES IT IS ALL A LITTLE OVERWHELMING AND YOU START FEELING BAD. YOU START THINKING ABOUT IF YOU WERE TO BE A STAY HOME MOM ALL THE NEW DOORS THAT OPEN UP.,ALL THE EXTRA THERAPIES YOU COULD FIT IN OR YOU WOULD FINALLY HAVE THE TIME TO DRIVE ACROSS TOWN TO ALL THE "BEST OPTIONS" IN THE STATE.
SOMETIMES I WISH THERE WERE JUST MORE HOURS IN THE DAY, OR MORE FLEX IN OUR BUSY SCHEDULES. I KNOW THIS WILL PASS AND THINGS WILL WORK OUT. I AM JUST WAITING TO SEE THE LIGHT AT THE END OF THIS CRAZY TUNNEL.
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