May is a big month for us. My son's birthday is May 7, Great Strides is May 6. And today, the third day of May, is the anniversary of my Sean's
diagnosis. Twelve years ago today, we got a phone call that changed our world.
Forever. Sean had cystic fibrosis.
Robert and I knew something was wrong. Although happy, alert and active,
Sean was small for his age (hanging in the 5 percent) and there was definitely
something wrong with his digestion. But we just thought is was a food allergy.
Actually I think we just were hoping was something innocuous like that. We
actually walked into the sweat test (the standard diagnostic test for CF)
thinking this was just something to "check off" our list so that we could figure
out what was really wrong. Looking back, I think we were young, scared and
definitely a little bit in denial.
What a difference a decade makes. We are in such a different place than we
were back then. As you can imagine it is hard to transform fear into hope, pain
into determination and tears into a positive attitude. And we owe it to
countless people who have navigated us through the uncertain emotions and
reality of living with cystic fibrosis. So today, I dedicate our walk and our
efforts to not only all the brave adults and children living with CF, but for
the doctors and nurses and caretakers who are the driving force behind our
battle. Today, we tuck into our hearts: Dr. Steffan, Dr. Lewis, Dr. Pian, Dr.
Kelly, Dr. Granet, Dr. Magit, Dr. Block, Yoli, Murray, Kathy, Laurie, Sandy,
Patty, the nurses at Radys, the technicians at Radys and the countless other
caring individuals who have made Sean's journey better, brighter, healthier and
longer. We literally would not be here emotionally without their support. And
Sean would definitely not be here physically without their expertise.
Dr. Steffan, Sean's first CF doctor in Dayton, OH, told us a lot of things the day Sean was diagnosed. But the one that sticks in my mind the most is, "Just because your son has cystic fibrosis, doesn't mean all your hopes and dreams for him can't come true." And that has become our mantra for Sean. Dr. Steffan instilled a sense of hope and determination in our hearts and we will always be grateful for that gift. He gave us the ability to embrace our son and his life exactly as they are, but to also move forward with hope, purpose and lots of love. Dr.
Steffan passed away a few years ago from cancer. He will always be tucked into
our hearts because he showed us that life is not about counting the days that we
have, but enjoying every single second for all they are worth. Thank you Dr.
Steffan.
Dr. Pian, has been Sean's doctor ever since we moved to San Diego. And he
is such a big part of our lives, we consider him a friend and part of our
family. Smart, honest and caring, Dr. Pian is the director of the CF clinc at
Radys Children's hospital. He is also Sean's mentor and emotional guide. When
Sean was eight, he came to us with a question that literally stopped us in our
tracks. He wanted to know if "cystic fibrosis would make him die one day."
Robert and I muddled through the answer to the best of our ability, but I was
afraid that our emotions got in the way and we didn't answer the question in a
way that would give Sean hope. So we brought it up to Dr. Pian at Sean's next
appointment. And what he said to Sean has always stuck in my heart. And I hope
it always stays in Sean's, as well. He looked him directly in the eye and asked
if Sean thought he was old. Of course, Sean answered yes - because, after all,
anyone older than a teenager is ancient in a child's eye. Dr. Pian said, "Good.
Because what I think is that you will one day grow up to be older than me. I
also think you will grow up to be old enough to figure out where you want to go
to college, what profession you want to choose and what names you want to give
your children. I think that you will have all of that and more." Brief, honest,
accurate and kind. Dr. Pian did so much more than just gracefully alleviate all
of Sean's fears. He taught us that the truth doesn't always have to be dark and
scary. If you keep it simple enough, throw in a dash of hope and a lot of
thought, it can change your entire outlook on life. And that is no easy feat
with cystic fibrosis breathing down your neck. Thank you Dr. Pian.
Twelve years ago, my husband and I stayed up all night thinking, wishing,
praying and crying. And while those emotions still exist, Sean's doctors and
caretakers along the way have given us the tools to funnel them into something
hopeful and positive. Please know that our walk coming up this weekend is so
much more than donations and science and research. It is an active way that we
can truly do something to give Sean a better life - in every sense. It literally
gives us the strength to put one foot in front of the other. We are grateful for
Sean's doctors for teaching us how to do this. And we are grateful for all the
people in our lives for cheering us on.
