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| Me with my mom on my birthday 10/11/1981 |
"You made all the delicate, inner
parts of my body and knit me together in my mother’s womb."
Psalm 139:13
I sit here in awe! He had a plan for me
long before I was even born. As I sit here thinking about Mother's
Day I'm so thankful God has given me four amazing children on earth
and one in Heaven.
The life events that have happened over
the past 37 years of my life all bring me to a beautiful story and
the most amazing part is that it's not finished.
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| Rylee on her birthday 10/12/2018 |
Seven months ago today we welcomed a
little girl into our life and we would soon learn she had something
called Cystic Fibrosis. The day we found out, just seven days after
she was born was overwhelming to say the least. Marty received a
phone call from the pediatrician's office saying they found two
mutations in her newborn screening test that could possibly be Cystic
Fibrosis. At the hospital they pricked Rylee's foot and dropped some
blood on a small piece of paper. Who new that these few small drops
of blood would have such a huge effect on our life? Rylee was born
with this. It's something that doesn't go away. Something that was
carried to her from Marty and me. It's in her biology. It's in her
genes.
She has two specific mutations of her
CFTR gene which prevents the chloride in her body from moving back
and forth and causes a sticky mucus to build up in various organs
like the lungs and digestion system. CF causes a wide spectrum of
various symptoms in CFers. For Rylee, she's pancreatic sufficient so
her body absorbs nutrients. A lot of CFers have to take enzymes
before they eat, to allow the body to absorb the nutrients. Based on
one of Rylee's gene mutations she's able to take a very special
medication that fights the actual build up of mucus. Everyday she
takes a little salt and vitamins with her milk and we do chest
physical therapy (CPT) on her every morning and night. She goes to
clinic every two months. At these visits she meets with her
pulmonologist, physical therapist, dietitian, nurse, pharmacist, and
social worker. She also sees the pediatrician for her continued
checkups and to keep her updated on her immunizations.
Over the past months we have learned so
much about the words Cystic Fibrosis. Some days I want to just close
the door and not take in any information and I do that but others
days it's a huge pile of mud that I can't seem to get away from.
Rylee is so special to us, she is a
miracle from God.
God places various people in our walk
for a reason. Sometimes we never know why but other times we do!
About nine years ago I met with a
pulmonologist because I had a nasty cough that I couldn't get rid of
and I wanted to know why. After meeting with him many times and
trying various treatments I honestly left without any answers. My
cough continued and several years later I developed GI issues.
About two years ago I went to Brody's
seventeen week ultra sound and his little heart stopped beating
around fifteen weeks. Two years ago today I walked into a hospital
room and delivered him into the world. We had all the tests done.
Everything came back normal. I remember telling Marty weeks later
that I thought maybe something was wrong with me. Maybe I was meant
to learn something from Brody's passing. Pregnancy related issues are
consistent with CF.
Which brings us to two months ago when
I met a special person while we were visiting a hospital. I was
telling her about this cough that I've had for years and my
gastrointestinal issues. She
told me that they treat some people that only have one mutation. They
have a mutation that's symptomatic. After hearing this, I went to
Rylee's CF team and asked if I could have a sweat chloride test done.
This is pretty much the gold standard test to see if you have CF. I
scored a 47. Twenty-nine and below is unlikely you have CF, 30-59 you
have a possibility of having CF, and anything 60 and above is
consistent with CF. After getting this number I honestly was so
relieved to finally see that my one mutation was probably causing my
health issues. We decided to take it a step further and get a genetic
screening test done just to make sure I didn't have another mutation.
We found out just two weeks ago that I
do have another mutation. I have Cystic Fibrosis. Yes, it's crazy to
think I've lived my whole life not knowing that I was carrying this
in my biological makeup but I'm so thankful that we're now finding
out. If I knew nine years ago, my life could have been much
different. Would I even be celebrating Mother's Day now? These are
thoughts that have run through my mind over and over in the past
weeks. I think about all of the doctor's that I've seen over the past
nine years. Pulmonologists, gastroenterologists, obstetricians,
primary care physicians, and none of them were able to give me
answers for my issues until now. I have an answer finally and we
couldn't have found out at a better time in our lives.
In one week, my family and friends will
be walking on a team named Rylee's Sweet and Salty Crew for the
Cystic Fibrosis Foundation! Each CFer will have a special shirt
designating them as having CF. Rylee will have a shirt and I will
have a shirt now too. We are a team!
We are so appreciative of all of our
family, friends, and complete strangers that have walked the past
seven months with us! Your love, your hugs, your prayers, your listening
ears, your help with the kids, your questions, your smiles, your
meals, your positive words, none of it has gone unnoticed. We thank
you so much! So from my heart to your heart if
you haven't heard that you are loved today, we love you! Thank you so
much for loving us.
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| Pregnant with Wyatt |
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| Pregnant with Haylee |
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| Pregnant with Garrett |
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| Pregnant with Brody |
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| Pregnant with Rylee |
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