Hope

 Dear Evan,

We pray, we plead every day for a cure.  We aren't there yet, but today we are one step closer.

Evan 9 Months

Today, we received an email that VX809 has been successful in the clinical studies and is now awaiting FDA approval. During our very first appointment with Dr Asfour, we asked if there were any new medications or advances in the pipeline for your mutation.  He mentioned VX809 and that if everything proved successful, you would be right on target to begin treatment with it at the age of two.  For that moment and again today after reading the email, all I could do was cry because my heart felt different. I felt different. I felt hope.

Celebrating with bubbles

Hope is what drives me to be perfect in every way possible when it comes to your care.  Some days it's overwhelming between the breathing treatments, CPT, Creon, blessed Creon, keeping the bills straight, appointments made, prescriptions ordered, weekly calls to insurance, the trips up to Primary's, trying to prevent your crawling, teething self from putting every disgusting thing you can find from the floor in your mouth, sanitizing the house, getting you to eat anything, nursing, wondering if I'll have to nurse forever because you refuse to do anything else, oh and somewhere in there having fun and creating memories.

Swimming at Nana and Bampa's June 2014

But, I know that you were meant to come to our family and this earth at this time for a reason.  The medical advances made towards finding a cure and improving lung function are historical.  What seemed like a distant glimmer of hope for a drug that literally improves lung function, something that has never been achieved before, is becoming a reality.  I hope there will come a day when we can look back and say remember when you had to do all of those things!  I believe we will get to experience that day.  Hope. It is what drives me.

A typical look into mealtime

To look too far into the future is too overwhelming and scary and frankly impossible.  Instead, we focus on small, attainable goals.  Right now we are working on getting you to eat three meals of solid food a day.  You refuse to be spoon fed anything. You also refuse to take a bottle or sippy cup.  Only nursing and feeding yourself will do.  Ideally, we would be giving you calorie-filled baby food, and power packing your formula, but we don't live in an ideal world and you are far to stubborn for that.

Let the battle begin

Ultimately, I hope that through your journey and life, you will know that your dad and I did the very best that we could to provide you with the best medications, treatments, home and life we could.  There isn't anything we wouldn't do for you.  Before you and your brother, I always felt like there was some great mission or something bigger I was supposed to be doing with my life.  Now I know it was you.  You are my purpose, you are my mission.  I no longer yearn for some grand worldly status.  Instead, I hope for more tomorrows.  I hope for more memories.  I hope for a long and happy life for you.  I hope.  I love you son.

Love,
Mom