I don't think I can write too much about today's big news. I'm afraid to cry, because once I start there won't be any stopping me until that little guy gets back off the bus at 3:50pm. So, we'll share the pictures instead.....
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)