One Year.

I’M GOING TO TRY AND GET THROUGH THIS WALK DOWN MEMORY LAND WITHOUT TOO MANY TEARS… 

ONE YEAR. IT’S BEEN EXACTLY ONE YEAR SINCE OUR LIVES WERE FOREVER TURNED UPSIDE DOWN. SOME DAYS IT FEEL LIKE THAT WAS FOREVER AGO, OTHER DAYS IT FEELS LIKE IT WAS JUST A FEW HOURS AGO.  365 DAYS AND I CAN STILL REMEMBER EVERY SINGLE MOMENT OF THAT INITIAL CONVERSATION WITH THE DOCTORS, EVERY DETAIL OF THE REST OF THAT WEEK… IT WAS THE WEEK THAT FOREVER CHANGED OUR FAMILY.  

THE DAY STARTED OUT LIKE ANY OTHER DAY. MOM AND DAD WENT TO WORK, LADYBUG WENT TO SCHOOL, AND WE ALL MET UP LATER THAT AFTERNOON FOR ONE OF HER 6-MONTH ROUTINE EYE EXAMS. WE HAD ALREADY HAD 3 OF THESE APPOINTMENTS SINCE HER NF1 DIAGNOSIS AND THEY ALWAYS WENT THE SAME… QUICK CHECK OF HER EYES AND WE WERE TOLD EVERYTHING LOOKED GREAT! WE WERE ALWAYS SENT ON OUR WAY WITH A WAIVE AND A FRIENDLY “SEE YOU IN 6 MONTHS”.    

I REMEMBER THE EXACT MOMENT I KNEW THIS APPOINTMENT WAS GOING TO BE DIFFERENT. A NURSE ALWAYS DOES A FEW QUICK TESTS AND CHECKS WITH RYLIE BEFORE WE SEE DR. HOFFMAN AND AS SHE WENT THROUGH THE THEM I NOTICED SHE KEPT TRYING TO GET RYLIE TO LOOK AT HER. IT WAS ALMOST AS IF SHE WAS PLEADING HER TO JUST LOOK AT THE CARDS. TYPICALLY WE GO THROUGH ONE, TWO, MAYBE THREE TESTING CARDS… BUT TODAY CARD AFTER CARD THERE WAS JUST NO RESPONSE FROM RYLIE. IT WAS AS IF SHE DIDN’T EVEN SEE THE CARDS….

STUPID TRIVIAL THINGS STARTED GOING THROUGH MY HEAD… SHE’S GOING TO NEED GLASSES! HOW DO YOU KEEP GLASSES ON A ONE YEAR OLD? HOW DO YOU KEEP A ONE YEAR OLD FROM BREAKING GLASSES? ARE PEOPLE GOING TO STARE AT HER? ARE KIDS GOING TO MAKE FUN OF HER? THINGS THAT SEEMED SO MAJOR... I ACTUALLY REMEMBER LOOKING AT BRETT SAYING “$20 BUCKS SAYS WE LEAVE HER WITH GLASSES”. HE KIND OF GAVE ME THE “YEP” LOOK. 

IT WASN’T LONG BEFORE WE WERE ABLE TO MEET WITH DR. HOFFMAN. AND AGAIN, AS SOON AS HE STARTED LOOKING AT HER EYES I JUST KNEW. I COULD JUST FEEL IT. SOMETHING WASN’T RIGHT. I HAD THAT HORRIBLE FEELING TAKE OVER MY ENTIRE BODY. YOU KNOW THE FEELING, THAT PARALYZING FEAR OF THE UNKNOWN. HE DIDN'T HAVE TO SPEAK, HIS FACE SAID IT ALL. SOMETHING WAS DEFINITELY WRONG. SHE HAD A TUMOR. NOT SURE HOW BAD, BUT HE WAS SURE IT WAS A TUMOR. IT WAS LIKE TIME STOOD STILL ALL WHILE THE WORLD BEGAN RUSHING BY US AT SUPER SONIC SPEED. I COULD HEAR EVERY WORD DR. HOFFMAN WAS SAYING BUT ALL I COULD DO WAS PLEAD WITH MY HEART TO HOLD IT TOGETHER. WITH RYLIE SITTING ON MY LAP AND BRETT RIGHT NEXT TOO US I JUST KEPT TELLING MYSELF “DON’T CRY. DON’T CRY.” IT WASN’T UNTIL DR. HOFFMAN HANDED ME A TISSUE THAT I REALIZED I WAS ALREADY CRYING. THE TEARS JUST WOULDN'T STOP. I HAD NO IDEA HOW TO PROTECT MY BABY FROM THIS... WE HAD NO IDEA HOW TO FIX IT. IT WAS BY FAR THE MOST DEVASTATING AND TERRIFYING MOMENT OF OUR LIVES. THAT MAN WAS MORE THAN JUST HER DOCTOR- WAS SO KIND, SO SWEET, AND SO RE-ASSURING TO US. OUR WORLD WAS UNRAVELING AND I HAD NO IDEA WHAT TO DO. IN THE KINDEST WAY, HE GRABBED MY HAND AND SAID “DON’T WORRY MOM, THAT’S WHY YOU COME SEE ME SO OFTEN… SO WE CAN FIX THIS!” IT WAS SO COMFORTING TO HAVE HIM THERE. WE DIDN'T KNOW WHAT THE PLAN WAS BUT I KNEW HE WOULD FIGURE ONE OUT.  

WE STOOD THERE STUNNED AND IN SILENCE AS HOFFMAN’S OFFICE WORKED TO GET AN MRI SCHEDULED. VEP TESTING SCHEDULED. ONCOLOGY APPOINTMENTS SET. WE JUST WANTED TO GET OUT OF THERE... FIND A PLACE TO FALL APART AND SEARCH FOR GUIDANCE. SOMEHOW, SOMEWAY WE MANAGED TO GET OUR THINGS GATHERED UP AS WE WERE USHERED OVER TO THE MORAN EYE CENTER FOR SOME ADDITIONAL TESTS.IT JUST FELT SO UNREAL. SO, NOT FAIR! I DON’T REMEMBER WALKING TO THE CAR, OR THE SHORT DRIVE OVER TO THE MORAN EYE CENTER… THE NEXT THING I REMEMBER WE WERE SITTING IN THE PARKING GARAGE… SHAKING, CRYING. WE WERE SCARED TO DEATH. I REMEMBER LOOKING AT BRETT, TEARS STREAMING DOWN HIS FACE. THE ANGER IN HIS EYES... IT BROKE MY HEART ALL OVER AGAIN. HE'S ALWAYS BEEN THE STRONG ONE, THE OPTIMISTIC ONE... TO SEE HIM SCARED BROUGHT ON A WHOLE NEW LEVEL OF FEAR. 

WE WERE A MESS. I COULDN’T EVEN THINK STRAIGHT. IT TOOK US FOREVER TO GET CHECKED IN BECAUSE EVEN THE SIMPLEST “WHATS YOUR ADDRESS” QUESTION SENT ME INTO A STATE OF FOG. WE COULDN’T BREATHE. WE JUST DIDN’T KNOW WHAT TO DO OR WHERE TO GO FROM HERE. HOW DO YOU RECOVER FROM NEWS LIKE THIS? IT FELT LIKE WE WERE DROWNING! 

EVERY TEST THEY RAN JUST SEEMED TO FURTHER CONFIRM DR. HOFFMAN’S SUSPICIONS. NO ONE COULD REALLY TELL US EXACT DETAILS UNTIL THE MRI A COUPLE DAYS LATER BUT WHAT THEY COULD TELL US IS IT DIDN'T LOOK GOOD. THINGS HAD JUST CHANGED TOO MUCH SINCE THEY HAD LAST SEEN HER IN SEPTEMBER. IN A MATTER OF WEEKS THINGS ONLY WENT FROM BAD TO WORSE WITH THE TUMORS PROGRESSING QUICKER THAN ANYONE COULD HAVE IMAGINED. WE WERE TOSSED INTO WEEKS OF UNCERTAINTY AND APPOINTMENTS AND FINALLY JUST TWO DAYS AFTER HER SECOND BIRTHDAY SHE STARTED CHEMO. 

OUR WORLD FOREVER CHANGED THAT DAY AND IT HAS NEVER BEEN THE SAME SENSE. HELL IF YOU PUT THAT LITTLE FAMILY IN FRONT OF ME TODAY I DON’T EVEN THINK I WOULD RECOGNIZE THEM. I KNOW WITHOUT A SHADOW OF A DOUBT I AM NOT THE SAME PERSON I WAS A YEAR AGO. THIS ENTIRE ORDEAL HAS SOFTENED ALL OF US. IT’S PROBABLY THE MOST HUMBLING EXPERIENCE WE HAVE EVER BEEN THROUGH. YOU SEE HOW MUCH PEOPLE LOVE AND CARE FOR YOU AND IT CHANGES YOU, W IT COULDN’T. HOW DO YOU THANK PEOPLE FOR GIVING YOU STRENGTH AND SUPPORT WHEN YOU CAN'T MUSTER UP YOUR OWN? YOU SEE HOW HARD EACH DAY IS AND YOU FEEL FOR FAMILIES DEALING WITH SIMILAR SITUATIONS, SOMETIMES THEIR SITUATION MAKE YOURS LOOK LIKE A WALK IN THE PARK. YOU WANT TO HELP MAKE THEIR DAYS BETTER JUST LIKE PEOPLE DID FOR YOU. YOU TAKE STOCK OF YOUR LIFE AND WHAT'S IMPORTANT TO YOU. IT'S MADE US WANT TO BE BETTER PEOPLE, FOR RYLIE AND FOR OURSELVES.  WE'VE HAD MOUNTAINS OF CHALLENGES AND SCORES OF BAD DAYS. WE'VE BEEN PUSHED TO OUR LIMITS AND THEN PUSHED SOME MORE. WE'VE BROKE DOWN AND THOUGHT WE COULDN'T GO ON... AND JUST WHEN WE REACHED OUR BREAKING POINT THERE WAS ALWAYS SOMEONE THERE TO HELP US PICK UP THE PIECES AND START FRESH. IT'S TRUE WHAT THEY SAY... “IT TAKES A VILLAGE”. OUR VILLAGE IS HUGE. THERE ARE FAR TOO MANY PEOPLE TO THANK, FAR TOO MANY SUPPORTERS WE'VE NEVER EVEN MET. ONE THING IS CERTAIN WE NEVER WOULD HAVE SURVIVED THIS LAST YEAR WITHOUT EACH AND EVERY ONE OF YOU! EVERY SINGLE MOMENT WE’VE NEEDED SOMEONE, A LITTLE PICK ME UP SOMEONE HAS BEEN THERE TO RESCUE US FROM OURSELVES. IT'S BEEN A YEAR OF LIFE LESSONS AND I'M SURE WE HAVE FAR MORE TO LEARN BUT GOD WILLING THIS CHAPTER WILL CLOSE IN THE NEXT FEW MONTHS. AND WHILE WE HOPE TO NEVER ENDURE THIS AGAIN WE WILL REMEMBER THESE LESSONS AND STRIVE TO LIVE EVERYDAY WITH LOVE, LAUGHTER, AND EXTREME GRATITUDE. 

AND THIS GIRL… SHE’S EXPERIENCED FAR TOO MANY CHALLENGES IN THE LAST 12 MONTHS AND NEVER HAS SHE COMPLAINED. WHILE SHE MAY SHED A FEW TEARS SHE ALWAYS DOES EXACTLY WHAT THE MEDICAL STAFF ASKS OF HER. OUR HEARTS BURST WITH PRIDE WHEN WE THINK OF EVERYTHING SHE HAS HANDLED IN THIS LAST YEAR! GROWN ADULTS STRUGGLE WITH THINGS SHE DOES DAY IN AND DAY OUT. SHE HAS GROWN SO MUCH IN THE LAST YEAR IT’S UNBELIEVABLE. TO SAY WE ARE PROUD OF HER WOULD BE THE UNDERSTATEMENT OF THE YEAR. SO MANY PEOPLE NEVER GET TO MEET THEIR HERO; WE GET THE CHANCE TO WAKE UP EVERY MORNING AND RAISE OURS! 

RYLIE MARKAY, WE LOVE YOU SO MUCH! WE ARE SO PROUD OF YOU AND ALL OF THE ACCOMPLISHMENTS YOU HAVE MADE THIS YEAR. MOST ADULTS CAN NOT HANDLE THE THINGS YOU ENDURE YET YOU DO IT EVERYDAY. YOUR STRENGTH INSPIRES US EACH AND EVERY SINGLE MOMENT OF EVERY DAY. THANK YOU FOR TEACHING US SOME OF THE MOST IMPORTANT LESSONS SOMEONE WILL EVER HAVE THE PRIVILEGED OF LEARNING. YOU’VE MADE US BETTER PARENTS; HECK YOU’VE MADE US BETTER PEOPLE IN GENERAL. WE KNOW THE NEXT FEW MONTHS MAY BE JUST AS CHALLENGING AS THE LAST 12 BUT REMEMBER WE WILL ALWAYS BE RIGHT NEXT TO YOU, HOLDING YOUR HAND AND ENCOURAGING YOU TO KEEP GOING. TOGETHER, THE THREE OF US WILL BEAT THIS!  WE LOVE YOU LADYBUG!!!