Just Breathe
Take a
deep breath in, now blow it out: in and out, in and out. It comes so easy and
so natural, I had never even thought about it. The ability to breathe without
difficulty was something I have always taken for granted. Then, in September of
2007, I heard two words that would change me as a mother. Two words would drive
me to become a fighter, never give up, and to become stronger than I thought I
could ever be. Those two words were Cystic Fibrosis. With this diagnosis, the
reality of breathing easy was no longer a way of life. I believe, just breathe,
was no longer a passing thought, it became our every thought.
When
I first heard the words Cystic Fibrosis, I was confused, heart broken, and
angry. It is not fair that my little 19-month-old girl been diagnosed with such
a scary, life-threatening, genetic disease. How is it possible that this
beautiful, energetic, smiley, blue eyed little girl only had the life
expectancy of 37? Just breathe, is what I had to tell myself when I needed to calm
down. I began to learn about this disease.
Cystic Fibrosis, CF for short, is a genetic disorder that effects the
pancreas. With no cure, all I can do is administer her medicines throughout the
day and help her do chest palpitation treatments morning and night. With all of
the side effects the disease causes, the worst is lung disease. The ability to
breathe deep, an involuntary action, is now what she fights for every day. As
her mom, I take her to her appointments, help her with her medicines, and teach
her how to do her chest and breathing treatments on her own. I strive to teach
her that she is strong because of her disease, not in-spite of it.
It has been almost 10 years since
we have begun the fight for our daughter’s life; we have had our ups and our
downs. Cystic Fibrosis has become part of our family. Through it we support
each other, fundraise together, laugh together, and sometimes we cry together.
Sometimes the tears are sad and sometimes they are happy. Some of the hardest
days have been dealing with bad news. For example, the day she found she would
be hospitalized her for a 2-week stay at the local children’s hospital. I felt
as if someone had punched me in the stomach. She was devastated and did not
want to go. What 9-year-old wants to sit in a hospital room with no visitors
under the age of twelve allowed? I am not that entertaining. The Disney Chanel
gets old fast. Thankfully, we have had more happy days than sad. When her lung
function was up and she is breathing strong, or when she finally hit the
desired healthy weight for CF patients, above 50% in weight. In addition, there
have been days filled with joy and gratitude. We have worked to raise funds to
find a cure through neighborhood bake sales. There were days when we have been
overwhelmed as people came, despite a torrential down pour. They came because
they want to help find a cure too. I
could not hold back the flood of happy tears that day.
Our family has become stronger as
we find moments to breathe and enjoy the journey. Our daughter is a fighter
through and through. She is my inspiration. I read a quote by Ruth Bell Graham
once that said, “As a mother, it is my job to take care of the possible and
trust God with the impossible.” That is what I strive to do each day. I follow
what the doctors and specialists say and teach, and then I pray. I know that
she has be blessed with this challenge for a reason, and I will continue to
fight with her and for her. For now, we will be grateful that we can just
breathe, and wait for the day when CF will stand for Cure Found.
