Hope

I wrote this story for a new book that Beverley Street School is planning to publish in the next year.   I thought I'd share it here too.

HOPE

We are a family of five with a Mom and a Dad and three beautiful daughters.   Our youngest daughter was born with a brain injury and a rare genetic disorder.    All three of our kids have a world of potential ahead of them.  

We didn’t know that our youngest child had challenges until she was about four months old.   It was during a routine check-up with our then pediatrician that our lives were ever changed with a handful of clinical, impersonal, descriptive words.    This was the beginning of our battle against what I call the ‘Hope Stealers’.   That day, the doctor came into our appointment and without any kind of ‘warm up’ said;  “Let’s get you set up with some appointments at Sick Kids”.    My heart dropped and I couldn’t breathe.   “Why?” I asked.   The doctor said, “Well, you’ve got what we call a ‘Funny Looking Kid’”.   Believe it or not, this is actually a term used in the medical community and it even has an acronym; F.L.K.   “What does that mean?” I asked looking at my beautiful baby.  The doctor proceeded to describe our baby girl with terms like floppy baby, bossy forehead, strange hair pattern, low set ears, long upper lip, upturned nose, strabismus, nystagmus, the list went on.   

Just like that, the way I looked at my daughter changed.   “What does this all mean for our baby?” I asked while sobbing, trying to catch my breath.   “It’s too soon to know but we’ll get a referral for neurology and genetics.  It should take about 6-8 weeks” and then he backed his way out of the room telling me that the office staff would be in touch with our appointment dates.     Off he went to his next appointment without looking back.

This doctor could have delivered the news of his suspicions to our family in many ways.   His choice of message delivery was to be ‘to the point’, emotionless, disconnected, and move on to the next patient.  This doctor stole the daughter we had known for the past 4 months, filled me with fear and questions and delivered her back to us as a ‘funny looking, floppy kid’ that had some big problems ahead of her… but we’d have to wait 6-8 weeks to start finding out what they were!  

I cried all the way home, trying to reach my husband by phone to deliver this news.  Surely, at some point during medical school, doctors must be taught how to deliver sensitive information about a patient to family members.    If so, I am fairly certain that our pediatrician missed that class.    That appointment and the doctor’s choice of words changed our world in a matter of fifteen minutes.   We still had three daughters whom we loved very much but one of them was now abnormal with some big challenges and a mystery medical condition to uncover.  It was uncertain what she would be capable of or how she would develop.   Boom.   Hope stolen.  

Our journey to uncover our daughter’s challenges continued as we met with a neurologist at Toronto’s Hospital for Sick Children.   Our first diagnosis was a brain malformation.   Refreshingly, we were told to have both parents present when the neurologist reviewed our daughter’s MRI results with us and it was suggested that siblings stay at home – regardless of the news that was to follow.   When we asked our neurologist to put this initial diagnosis into a prognosis, he said among other things,  “your daughter has a 25% chance of developing seizures by the time she is 4 years of age”.   Although more positive and supportive than our pediatrician, the neurologist could have worded his prognosis differently as well.   If perhaps he had told us that she had a 75% chance of never having a seizure, he would have left us with more hope and less worry.

After the neurologist, we met with the Geneticist at Sick Kids.   Her diagnosis was that our daughter had a very rare genetic disorder.   To her knowledge, there were less than 100 people in the world with this syndrome.   When asked “What does this mean for our daughter?” she said “It’s hard to be sure but what we know is that most of these children never talk or sit independently and many have heart and kidney disease”.   Boom.   Hope stealer.  

At the age of two, we were told that our daughter would need surgery to correct her strabismus (wandering eye) because it would not correct itself.  At three, we were told that she would need AFO’s (foot/ankle/leg braces) “for the REST of her life”.   At the age of three and a half, we were told to get our daughter a wheelchair for her mobility because it was unlikely that she would walk.   

Each year, we visit our developmental pediatrician.  After each appointment we receive a letter in the mail summarizing the outcome of the appointment.   The letter always starts out by describing everything that our daughter is challenged with and listing her numerous diagnosis.   I dread receiving the annual letter – it sinks me emotionally.   It would be so amazing if the next letter we received from our developmental pediatrician celebrated our hard work and my daughter’s fantastic progress before listing her challenges. 

Over and over again, our community of medical support tries to lower our expectations.   I’m not clear on why, but I imagine they are protecting themselves from liability and possibly trying to protect us from disappointment.   I don’t really care why, but they need to stop stealing the hope that fuels us to do better, be better, feel better.   They need to think before they speak and realize the impact of their words on their patients and the parents who view their children as perfect just as they are.

We decided very early in our youngest daughter’s life to hold onto our hope and never let anyone take it from us.   As a family, we believed that she would be happy and healthy and that she would sit independently and crawl.  We continue to believe that she will communicate with us, learn to read and speak and walk on her own.    We are ever hopeful.

We believe that you have to work hard for the things you hope for in life.   It is hope that drives motivation, determination and perseverance.   There are no sure things in life, but you are far more likely to achieve your hopes and dreams if you believe you can than if you have no hope.  There is no such thing as false hope.   Hope keeps us going when times are challenging; hope helps us see through to a brighter future.

Our youngest daughter has just turned five.   She is happy and healthy and does not have heart or kidney disease.   She has NEVER had a seizure.   Her wandering eye corrected itself.    She sits independently, transitions independently, crawls, rolls, pulls herself up on things, moves non-stop and is able to stand and walk while holding our hands (without AFOs).  She is starting to feed herself and holds her own cup when she drinks.  She knows a few words in sign language and makes choices with her eyes and occasionally her hands.   We have taught her to read over 2500 sight words and are working on finding a communication device to help her find her voice.   We are very hopeful that she will one day speak her own words.   She is funny, loving, stubborn, determined and smart.

For a short period of time, we allowed ‘the experts’ to steal our hope, limit our expectations and mold our beliefs.   We let them hold the power and momentarily shape how we saw our youngest daughter physically and developmentally with their statistics, descriptions and scepticism.   Thankfully, we listened to our hearts and looked into our baby’s beautiful brown eyes and saw nothing but hope.   We found the strength within our family unit to help her chart her own path.   We believe in her and have all the hope in the world for her life ahead.  

Today, five years later, we are a regular family with three beautiful daughters, ALL of whom can do ANYTHING they dream of with their lives, fueled by HOPE.