Last night I was reminded of how deeply I both DESPISE and appreciate cystic fibrosis. I'm sure to most people that sounds completely insane, but I AM thankful for what CF has given my family. It's hard to put into words....so pictures may do better justice.
Why I hate CF.....medication after medication, but they only treat the SYMPTOMS. They don't fix the problem.
Why I hate CF.....I can't look at newborn pictures of Rylan without crying. Those 1st two weeks of her life we thought she was 100 percent healthy. We had no idea what life had in store for our little family of 4.
Why I hate CF.....having to explain to a then 3-yr old why his tiny baby sister has to have all of these tests done.
Why I hate CF.....having to take antibiotics that haven't even been approved for children under 6 yrs old....when you're 5 months old.
Why I hate CF.....your sense of 'normal' is something most people will never have to experience for even one day of their life.
And the list goes on and on....but what I'm finding is, as time marches on, that 'other' list is growing even longer. And one day, THAT list, the list of reasons why I'm THANKFUL for CF will be the longer of the two.
CF has given Kohen a chance to be a REAL superhero
CF has made our hugs a little tighter.....
.....and our kisses a little sweeter.
CF is teaching my kids companionship.....
.....and compassion.
It has given me a 'CF family'.....
.....who understand the importance of a superhero cape.
In the words of a great CF mom, "So many people's trials and struggles in this world are over the pettiest of circumstances, they can't see huge blessings when they're staring them right in the eyes......we warrior moms can. cus we know breathing isn't always a priviledge, sometimes its a right, that we have to fight hard for." She is so incredibly right. There are so many reasons to be pissed off at life...but then I look at that little girl. How can I waste ONE single moment on pettiness?? How can I get angry or upset at ANYthing when God placed that little angel in MY arms? Everything about that little girl is a blessing. Every. Singe. Little. Thing. And that includes CF.
Just ran into this blog for the first time. Thanks for sharing. Your children are beautiful and you've given me hope for the future. I just started chest pt and neb treatments with my daughter on a daily basis because of hypotonia, not cf (she's unable to cough up secretions). Like you said, how can you get upset when that angel is in your arms? God is good.
I am a 30-something stay-at-home mom whose daily ramblings may never change the world, but they just might save my sanity. This is my journey of raising a son & his 'cyster', in the hopes that sharing our story will help spread awareness for cystic fibrosis.
Daddy
The most amazing dad/super-hero you will ever meet. I knew from the moment I met him he would be a great dad, but I could never have imagined the truly AMAZING father he would become. He is my rock & our kids' favorite playtoy. I truly can not imagine life without him. Thank you GOD for bringing this Prince Charming into my life.
Big Brother
My son...the light of my life. He is so many things. Sweet. Adventuresome. Handsome. Mild mannered. His sister's hero. Unbelievably kind. Curious. Mindful. Athletic. Imaginative. Oh, and did I mention sweet? There are not enough words in the world to describe everything this little man is to me. He is what puts a smile on my face through it all...
Little 'Cyster'
My baby girl. Kohen's beloved little sister. Daddy's angel. She has turned our world upside down and inside out, and yet make it perfect all at the same time. She was diagnosed with cystic fibrosis when she was 2-weeks old. My son changed my life, my daughter changed my world. She has given me gift, after gift, after gift. She has taught me so many lessons on life and love. She has shown me how to REALLY live in the moment and to TRULY appreciate everything, no matter how small the blessing.
About Cystic Fibrosis
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. With advancements in treatments and medications, many people with the disease can now expect to live into their 30s, 40s and beyond. This is why I will fight for my daughter's cureevery day of my life. An average life expectancy of 37 years just isn't ok with me.
Rylan's Current Treatments
Vest treatment 30 min, 2-3x per day
Albuterol nebulizer 2x per day (opens airways)
Pulmozyme nebulizer 1x per day (thins mucus)
Cetirizine 1/2 tsp 2x per day (seasonal allergies)
Just ran into this blog for the first time. Thanks for sharing. Your children are beautiful and you've given me hope for the future. I just started chest pt and neb treatments with my daughter on a daily basis because of hypotonia, not cf (she's unable to cough up secretions). Like you said, how can you get upset when that angel is in your arms? God is good.
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