The organizer of this fundraiser asked if I would share my story, so I thought I would put it on the blog as well.
Our daughter, Kelsie, was diagnosed
with CF at 2 weeks of age after it was discovered on her newborn
screening test. My husband and I had no idea we were carriers of the
CF gene and were naturally shocked and devastated at the news.
Looking ahead, we were faced with heart-wrenching fear and
uncertainty wondering how this diagnosis would affect our little girl
and our entire family. It was a very difficult few weeks as we
processed the news and started to educate ourselves about the disease
and how to manage it on a daily basis. The initial visit took almost
an entire day as we met with healthcare professionals from various
disciplines. I remember I kept tearing up, thinking, I can't believe
this is happening. This is my first child, the daughter I have waited
my whole life for, she is 3 weeks old and this is supposed to be the
most joyous time of my life. Instead, I am sitting here in a hospital
hearing about this disease that will require her to take medicine
every day for the rest of her life, sit through chest PT &
breathing treatments on a daily basis, suffer from recurrent
respiratory infections, struggle to breathe, endure multiple hospital
stays, and it will likely take her life at an early age. The fear and
the distress thinking about all of those inevitable factors
threatened to consume me and rob me of the joy of being a new mom.
But I decided I would hunker down and
stop dwelling on the negatives and the “what ifs?” Instead, I
would focus on taking the best care of Kelsie that I possibly could
and make sure that she had the same opportunities as any other child.
I would do everything in my power to make sure she never felt held
back by CF and would do all I could to keep her as healthy as
possible. I quickly learned that the list of therapies to do the
latter was quite extensive! As a new mom, I was exhausted. As a new
mom with a child with CF, I was doubly exhausted, both physically and
emotionally. I still feel that way most days. But every day with her
is still wonderful. I absolutely love being with her, spending time
with her, teaching her new things and doing all the mother-daughter
things we can do together. But keeping up with managing her disease
is a job (and we will soon be tacking on even more therapies that
will make it even busier). She currently takes about 20 pills per
day. And gets chest PT 30 minutes twice a day every day when she is
healthy and even more when she is sick. She has to take 4 capsules
(we have to open each one up and sprinkle it on applesauce) before
she can eat anything or even drink her milk. It is time consuming,
difficult, and stressful doing this for each meal and each snack,
whether in your kitchen, in the grocery store, at church, or in your
car, especially when you have a hungry and inpatient toddler who is
ready to eat. But it is the only way her body can digest and absorb
food so it is absolutely vital for her. There is also just the mental
battle of balancing everything nutritionally (salt, fluids, fat,
calories) and worrying about infection risks/prevention. It is hard
to explain - there is just simply a lot to think about every day.
Kelsie is now 19 months old and has
done very well so far with her illness. She has only had 3 colds in
her life, but 2 of them quickly turned into a sinus infection (a
complication of CF). She is currently being treated for the 2nd
sinus infection with a 20 day course of antibiotics. This is her
first real cough since she was born but I can't help but think, this
is only just the beginning. As a pediatric nurse practitioner, I see
kids with cough every day and generally don't get too excited about a
little cough and cold. But with Kelsie, the cough is more than that.
A lot more than that. For me, her cough somehow represents a lifetime
of lung infections and respiratory symptoms. So every time I hear it,
I cringe. It also makes me worry about the additive effect, worrying
that each infection is just going to do more damage each time. And no
matter how far I have gone to accept this diagnosis, there are days,
I still can't shake that looming fear. I try not to let it stand in
my way of being the mom Kelsie needs me to be, but it is still there.
It's like a storm cloud off in the distance. It is beautiful and
sunny where you are now. Everything is bright and lively but you
can't help but notice that ominous cloud ahead. You know it is
coming, you just don't know how long it will take to get here. And
you know after one hits, there will be a series of others popping up
along the way. So you do your best to enjoy every single minute of
the sunshine because you have that sliver of fear that the storm just
might take your sun away forever.
My sunshine – my sweet Kelsie - is
the happiest and most vibrant little toddler who is full of
personality. She is independent and resilient. She is strong willed
and determined. She is so affectionate. She is very social, saying
“hi” or blowing kisses to people she doesn't even know. She is so
smart. She is beautiful. And she is just like any other child her
age. I think of all of her qualities and I can already tell she is
going to do something great one day. She is going to be successful,
she is going to make an impact on people, and she is going to love
life. The only thing that will threaten to stand in her way is this
disease. It will tag along beside her every day for her entire life.
There will be days it will be somewhat forgotten as the pills and
treatments will be just as routine to her as brushing your teeth is
to you. But there will be other days when it will feel like it is
suffocating her, both literally and figuratively. She will never get
a break from the meds, the treatments, or the thought of a shortened
life expectancy. That is, as long as there is no cure. The Cystic
Fibrosis Foundation has done amazing work to date researching new
therapies to improve the quality of life for children and adults with
CF. We cling to the hope that they will continue to unveil new
discoveries that may one day lead to a cure for this disease so that
no one with CF will ever have to suffer the consequences of this
terrible disease again. Please help us fight this disease by
supporting the foundation that funds this vital research. My
daughter's future depends on it.
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