Speech

What a surreal night Saturday was. Having the opportunity to speak to over 400 people about what Canuck Place Children's Hospice is to us. Pretty incredible. My nerves were fairly calm until we stepped into the arena and the sudden realization hit me as to how impressive this event truly is. It was absolutely stunning. The prizes made me wish I had the money to bid on them. The food was so delicious. The people were gorgeously dressed.
About 10 minutes prior to us going on stage the nerves got worse. That's when I felt a huge knot in my stomach and was tempted to run for the hills. Not sure if it was the heels that stopped me or my intuition that this was where I was meant to be, but I stayed. And I'm so glad we did. The response was overwhelming. I thought that surely everyone was seeing my hands and legs shaking uncontrollably.. apparently just Aaron saw that. The good thing was that because the lights were focused on us, I was unable to make the faces of the people, just their shapes. Walking off the stage, giving the host a big hug I couldn't believe there was a standing ovation. Trying to keep my cool I arrived safely back to our seats. After the live auction finished and the dance floor opened we had numerous guests approach and thank us for giving them the insight into our lives and what they were really there to support. Since almost every person that we actually know and follows Layla's story on a regular basis was unable to attend I thought it would be a good idea to share our speech with you! So here it is: (You have to read it really loud in your head because it's all in capitals..jk. I do not have the time or energy to change it.)

HELLO MY NAME IS KAITI THIS IS MY HUSBAND AARON. OUR ONE AND ONLY DAUGHTER’S NAME IS LAYLA. SHE IS THREE AND A HALF YEARS OLD AND HAS BEEN RECENTLY DIAGNOSED WITH PONTOCEREBELLAR HYPOPLASIA TYPE 2D - A MOUTHFUL I KNOW, SO WE LIKE TO REFER TO IT AS PCH.

PCH IS A RARE GENETIC CONDITION THAT AFFECTS THE DEVELOPMENT ON THE BRAIN PARTICULARLY IN THE CEREBELLUM, WHICH IS THE PART OF THE BRAIN RESPONSIBLE FOR BASICALLY ALL GROWTH AND DEVELOPMENT MILESTONES INCLUDING SITTING, WALKING, AND TALKING. THIS DISEASE IS LIFE LIMITING AND PROGRESSIVE. LAYLA STRUGGLES WITH SEIZURES AND HAS BEEN DIAGNOSED WITH CORTICAL VISUAL IMPAIRMENT.

WE HAVE BEEN A PART OF THE CANUCK PLACE FAMILY FOR TWO AND A HALF YEARS NOW. 

WHEN LAYLA WAS BORN WE HAD NO IDEA WHAT WE WERE IN FOR. THE DOCTOR NOTICED LOW MUSCLE TONE AT BIRTH BUT THERE WAS NO MAJOR CONCERN. A WEEK LATER WE HOPPED ON A PLANE AND MOVED ACROSS THE COUNTRY TO ONTARIO SO AARON COULD ENROL IN A TRADES PROGRAM. A NEW LIFE FOR OUR SMALL FAMILY WAS BEGINNING.

 AT 4 MONTHS OF AGE WE STILL HADN’T BEEN ABLE TO SEE A DOCTOR AND NOTICED LAYLA HADN’T HIT ANY EXPECTED MILESTONES BUT, BEING OUR FIRST CHILD, WE BRUSHED THOSE CONCERNS TO THE SIDE.

LAYLA WAS 6 MONTHS OLD OUR LIVES TURNED A CORNER. WE WERE CONCERNED THAT SHE WASN’T DEVELOPING, AS SHE SHOULD BE.

WE WERE SENT TO A PAEDIATRICIAN WHO TOLD US HE BELIEVED LAYLA HAD SPINAL MUSCULAR ATROPHY (SMA). HE SHARED THAT SHE WAS LIKELY TO ONLY GET WEAKER AND WOULD PASS AWAY SHORTLY. OUR HEARTS WERE SHATTERED. 

WHEN WE TYPED SMA INTO GOOGLE THE FIRST TITLE TO APPEAR WAS “#1 BABY KILLER DISEASE.” THERE WAS NO WAY THIS COULD BE HAPPENING TO US. THIS PRECIOUS GIRL THAT WE WOULD DO ABSOLUTELY ANYTHING FOR AND SUDDENLY THERE WAS NOTHING WE COULD DO.

OVER THE NEXT TWO MONTHS WE WATCHED THIS ALREADY VERY WEAK BABY GET WEAKER. HER BREATHING GOT WORSE; SHE LOST THE ABILITY TO SUCK AND WAS SEEMINGLY DYING IN OUR ARMS. AND WE WERE TOLD TO ESSENTIALLY WATCH IT HAPPEN. IT WAS BY FAR THE HARDEST THING WE’VE EVER HAD TO ENDURE.

AT 9 MONTHS OLD WE HAD HIT OUR LAST STRAW. THE THREE OF US HAD BEEN SURVIVING ON SUCH LITTLE SLEEP, WE COULDN’T THINK CLEARLY BUT IT WAS CLEAR WE NEEDED HELP. SO WE DROVE 2 HOURS TO THE CLOSEST CHILDREN’S HOSPITAL IN LONDON, ONTARIO.

LAYLA WAS IMMEDIATELY TAKEN INTO THE PAEDIATRIC INTENSIVE CARE UNIT AND MONITORED. FOR A MONTH THIS WAS OUR HOME. SOON THE DIAGNOSIS OF SMA WAS RULED OUT BUT THEY DIDN’T KNOW WHAT WAS CAUSING HER TO DEVELOP AND ACT THE WAY SHE WAS AND WE ASSUMED WE STILL NEEDED TO PREPARE FOR THE WORST. 

DURING OUR STAY LAYLA UNDERWENT SURGERY TO HAVE A PERMANENT FEEDING TUBE PLACED. SPECIALISTS FROM EVERY AREA WERE ASSIGNED TO OUR CASE: NEUROLOGY, GENETICS AND BIOCHEMICAL DISEASES – ALL ATTEMPTED TO COME UP WITH A SOUND DIAGNOSIS BUT WITH NO LUCK. COPIOUS AMOUNTS OF TESTS WERE PERFORMED ON OUR LITTLE GIRL - LOTS OF BLOODWORK, MUSCLE AND SKIN BIOPSIES, A MRI, EEG, EMG, ECG… BUT STILL NO ANSWERS. WE WERE DISCHARGED AND LEFT WITH A HEALTHIER CHILD, BUT WE WERE STILL SO UNSURE OF WHAT TO EXPECT AND WHERE TO GO FROM THERE.

WE DECIDED TO MOVE BACK TO BC. THE MAJORITY OF OUR FAMILY LIVED THERE AND IF OUR TIME WAS LIMITED WITH LAYLA WE KNEW WE WANTED THE MOST IMPORTANT PEOPLE IN OUR LIVES TO ALL GET A CHANCE TO KNOW HER. 

BEFORE WE LEFT WE SPOKE TO THIS NURSE PRACTITIONER SPECIALIZING IN SYMPTOM MANAGEMENT AND SHE RAVED ABOUT AN INCREDIBLE CHILDREN’S HOSPICE CALLED CANUCK PLACE. I DIDN’T UNDERSTAND HOW SOMEONE COULD RAVE ABOUT A HOSPICE. ISN’T THAT WHERE CHILDREN GO TO DIE? 

WHAT WE WOULD COME TO REALIZE IS THAT CANUCK PLACE IS NOT JUST A PLACE CHILDREN GO TO DIE, BUT A PLACE THAT HELPS CHILDREN WHO ARE DYING REALLY LIVE.

WHEN WE FIRST ARRIVED BACK IN BC, JUST IN TIME FOR LAYLA’S 1ST BIRTHDAY, WE HAD NO HOME SUPPORT SERVICES – SO 24/7 WE WERE ON DUTY ATTENDING TO ALL OF LAYLA’S CARE NEEDS. I WAS UNABLE TO RETURN TO WORK BECAUSE OF LAYLA’S HIGH LEVEL OF NEEDS. AARON NEEDED TO WORK FULL TIME TO PROVIDE FOR US. 

WE WERE TIRED. AT TIMES IT WAS HARD TO CATCH OUR BREATH BUT CANUCK PLACE OFFERED US THE MOST IMPORTANT THING WE NEEDED AT THAT TIME – COMFORT AND CARE.

CANUCK PLACE GAVE US PEACE OF MIND KNOWING THAT LAYLA WAS IN CAPABLE HANDS AT THE HOSPICE WITH AROUND-THECLOCK CARE – WE WERE FINALLY ABLE TO RELAX. WE COULD LEAVE HER ON THE NURSING AND PHYSICIAN FLOOR, CUDDLING WITH A VOLUNTEER IN A LAZY BOY CHAIR, LISTENING TO MUSIC AND GO TO SLEEP!

WE HAD BOTH FORGOTTEN WHAT A FULL NIGHT’S REST FELT LIKE. IT BROUGHT SUCH A SENSE OF PEACE TO KNOW THAT NOW THERE WAS A WHOLE TEAM OF SUPPORT BACKING US UP. IT WASN’T ALL ON OUR OWN SHOULDERS ANYMORE.

CANUCK PLACE NOT ONLY TAKES CARE OF US IN THE HOSPICE BUT ALSO, HAS HELPED US GET ACCESS TO ALL THE RIGHT SERVICES AND SPECIALISTS WHEN WE’RE OUT OF THE HOSPICE. HAVING THE ABILITY TO CALL SOMEONE AT CANUCK PLACE ANY TIME OF THE DAY OR NIGHT, THAT KNOWS YOUR CHILD’S BASELINE, IS INCREDIBLY HELPFUL WITH A COMPLEX CHILD. I DO MY BEST AT ADVOCATING BUT WHEN YOU HAVE A CANUCK PLACE DOCTOR BACKING YOU UP - PEOPLE LISTEN. SINCE LAYLA WAS ACCEPTED ON THE PROGRAM THE AMOUNT OF SUPPORT WE HAVE ACCESS TO AND RECEIVED HAS INCREASED SIGNIFICANTLY - I DON’T THINK THAT IS BY CHANCE. 

THE DOCTORS AT CANUCK PLACE HAVE HELPED BRING LAYLA TO A PRETTY STABLE PLACE WITH SPECIALIZED PAIN AND SYMPTOM CARE MANAGING HER MEDICATIONS. SHE EXPERIENCED A DIP WITH CLUSTER AND GRAND MAL SEIZURES LAST SPRING BUT OVERALL, LATELY, SHE HAS BEEN SO CONTENT WITHIN HERSELF. FOR THAT WE ARE INCREDIBLY GRATEFUL. THOUGH SHE IS NOT DEVELOPING TO MEET ANY MILESTONES, SHE KNOWS WHO WE ARE, THAT WE LOVE HER AND IS MORE RESPONSIVE THAN I THOUGHT WE WOULD EVER SEE.

WHEN YOU SEE LAYLA BELLY LAUGH, YOU CAN’T HELP BUT SMILE. THOUGH HER TIMING COULD BE BETTER. WHEN HEARING CHILDREN CRY, OR A SAD STORY ABOUT SOMEONE BEING HURT - THAT’S OFTEN WHEN SHE CHOOSES TO LAUGH. I GUESS SHE’S JUST TRYING TO LIGHTEN THE MOOD. I LOVE THAT ABOUT HER. SHE BRINGS JOY WHERE THERE SHOULD BE SORROW. 

LAYLA HAS BEEN GOING TO MUSIC THERAPY EVERY TWO WEEKS AT DAVE LEDE HOUSE IN ABBOTSFORD FOR A YEAR AND A HALF NOW. IT IS HER ABSOLUTE FAVOURITE THERAPY. THE FIRST STRUM ON CANUCK PLACE MUSIC THERAPIST KARIN’S GUITAR BRINGS AN INSTANT TOOTHY GRIN THAT MELTS YOUR HEART. EVERY NURSE WHO HAS WORKED WITH LAYLA KNOWS THAT HER FAVOURITE BAND IS THE LUMINEERS. WE HAVE PLAYED HER THEIR MUSIC SINCE SHE WAS A SMALL INFANT AND IT IS THE GO TO THROUGHOUT THE DAY AND NIGHT. WHEN THE CANUCK PLACE MUSIC THERAPY STUDENT TOOK IT UPON HERSELF TO LEARN A FEW OF THEIR SONGS IT SHOWED ME ANOTHER REASON WHY I LOVE THIS PROGRAM SO MUCH. I KNOW THAT MY DAUGHTER IS SO SPECIAL TO ME - TO US - BUT WHEN I SEE OTHERS CREATE A BOND AND GET A PEEK INTO HOW WE FEEL - THAT IS THE BEST GIFT. TO KNOW SHE IS MAKING AN IMPACT. THAT SHE FEELS LOVED.

 LOVE IS THE ONLY THING THAT KEEPS US GOING. 

THIS PAST JULY WE TRAVELED TO UCLA AS LAYLA HAD BEEN ACCEPTED TO THE UNDIAGNOSED DISEASE NETWORK. THAT GIVES YOU AN IDEA OF HOW RARE LAYLA’S CONDITION IS. AFTER ALMOST 3 YEARS, WE RECEIVED AN ACCURATE DIAGNOSIS. WE FINALLY HAD A LABEL TO TELL PEOPLE WHEN THEY ASKED WHAT HER DIAGNOSIS WAS - PONTOCEREBELLAR HYPOPLASIA TYPE 2D. WE HAVE BEEN TOLD THAT THERE ARE AROUND 100 CASES WORLD WIDE OF LAYLA’S CONDITION. 

THE SLIVER OF HOPE THAT THEY WOULD DISCOVER LAYLA DIDN’T HAVE A LIFE-LIMITING DIAGNOSIS OR, IN THE BEST-CASE SCENARIO THAT THERE WAS CURE, UNFORTUNATELY DIDN’T HAPPEN.

IT WAS A STRANGE FEELING TO HAVE THAT INFORMATION NOW OFFICIALLY CONCRETE. AND TO BE HONEST IT DIDN’T CHANGE A LOT FOR OUR DAY TO DAY. TURNS OUT WE HAD BEEN DOING ALL THE RIGHT THINGS, GIVING HER THE RIGHT MEDICATIONS AND SEEING THE RIGHT SPECIALISTS. WITH NO POSSIBLE TREATMENT, IT’S ALL ABOUT SYMPTOM MANAGEMENT. KEEP LAYLA HAPPY AND HEALTHY AND TREAT THE SYMPTOMS AS THEY ARISE, IF POSSIBLE. 

AND AGAIN, BACK TO THAT SIMPLE IDEA – HOW DO WE HELP LAYLA LIVE HER BEST LIFE? 

IT’S A TALL ORDER AND HAVING A CHILD WITH A COMPLEX CONDITION CAN FEEL SO LONELY AT TIMES.

IT’S HARD TO FIT IN WITH TYPICAL PARENTS WHEN YOUR ENVIRONMENTS ARE SO DIFFERENT. EACH TIME I HOLD A NEWBORN BABY AND FEEL THAT THEY ARE ALREADY STRONGER THAN MY SWEET GIRL, I FEEL A PRICK IN MY HEART. WHAT I WOULDN’T GIVE TO SEE HER SIT UPRIGHT ON HER OWN. 

IT’S NOT FAIR. LIFE DOESN’T FEEL FAIR. HOWEVER, WE CAN’T LET THAT KEEP US FROM HELPING LAYLA EXPERIENCE LIFE IN THE BEST WAY SHE CAN. SHE NEEDS US TO BE STRONG FOR HER. EACH TIME WE STAY AT CANUCK PLACE WE HAVE AN OPPORTUNITY TO MAKE A CONNECTION WITH ANOTHER FAMILY GOING THROUGH SIMILAR THINGS. WHEN YOU MEET OTHER PEOPLE WHO GET IT, IT HELPS MAKE THIS ROAD A LITTLE LESS ISOLATING, IN A WORLD THAT DOESN’T UNDERSTAND. 

LAYLA HAS BEEN SO STABLE LATELY. IT CAN SOMETIMES SLIP OUR MINDS THAT THE REALITY IS WE DON’T KNOW WHAT HER FUTURE HOLDS. THE DEATH OF A CHILD IS OVERWHELMING TO EVEN CONSIDER BUT WITH THE HELP OF THE CANUCK PLACE, WE WILL SURVIVE IT.

THEY HELP US GRIEVE THE LOSS OF OUR DREAMS FOR LAYLA WHILE SHE IS HERE AND WILL LONG AFTER SHE IS GONE. 

SURVIVING THE FIRST YEAR WITH A COMPLEX CHILD WITHOUT CANUCK PLACE CONFIRMS TO US HOW ESSENTIAL THIS PROGRAM IS. UNLESS YOU ARE A PART OF THIS CARING COMMUNITY, YOU WILL NEVER FULLY UNDERSTAND HOW GRATEFUL YOU WOULD BE FOR ITS EXISTENCE.

THANK YOU FOR BEING HERE FOR OUR FAMILY AND DAUGHTER LAYLA. WE WOULDN’T BE STANDING UP HERE WITH THE ABILITY TO SMILE WITHOUT YOUR GENEROSITY.

TONIGHT I HOPE YOU ALL CAN WALK AWAY KNOWING HOW NECESSARY CANUCK PLACE IS FOR FAMILIES LIKE MINE. 

IN CLOSING I WOULD LIKE TO SHARE A QUOTE FROM JEAN VANIER’S BOOK CALLED BECOMING HUMAN,

“SO MANY PEOPLE WITH DISABILITIES ARE SEEN BY THEIR PARENTS AND FAMILIES ONLY AS TRAGEDY. THEY ARE SURROUNDED BY SAD FACES, SOMETIMES FULL OF PITY, SOMETIMES TEARS. BUT EVERY CHILD, EVERY PERSON, NEEDS TO BE CELEBRATED. ONLY WHEN ALL OF OUR WEAKNESSES ARE ACCEPTED AS PART OF OUR HUMANITY CAN OUR NEGATIVE, BROKEN SELF-IMAGES BE TRANSFORMED.” 

THANK YOU.

The End.