When we learned at 23 weeks in to our pregnancy that both Patrick and I carried the CF gene, I was crushed. I was uneducated, overwhelmed and terrified. Having heard the story from Patricks families experience with cystic fibrosis, I wasn't ready to have an open mind to the advances in technology and medicine and had tunnel vision to all of the negative possibilities in our future. Most of all, I was filled with guilt, as my ethnicity wasn't a likely candidate to carry the gene.
We decided to wait it out and test after birth instead of risking his safety with an amneo. We went through his newborn screening which came back positive, his blood testing, which also came back positive and finally his sweat test which came back extremely positive. We were crushed. We had to learn to live with this fragile little human whose future was more unknown than anything we have ever not known before. We had to give him medication starting at 3 weeks old. We had to give him chest clearance therapy. We had to be strict about germs and illness and smoke, and we closed ourselves off from the outside world while we processed this diagnosis and learned how to deal with the general public.
What really shot us out of our deer in the headlights state after Riley's diagnosis was our community. You guys. The people who we shared our story with who offered support. The people who went straight to cff.org to learn how they can help us transition to this new life. The people with our CF clinic at Seattle Childrens Hospital and our CF community who have taught us so so much.
Riley is now turning FIVE and comes out of his quarterly clinic appointments with gold stars and flying colors. Our team has become our family, and we are learning about life with CF as well as finally getting to a place where we are excited and optomistic about Rileys future. He wants to play baseball and hockey, and he is excited to learn piano drums and trumpet. He loves to garden, paint and learn about everything he possibly can. ESPECIALLY science.
He may not fully grasp his situation but he is learning and advocating so much for himself and his health. He knows that he needs his orkambi with a fat containing snack and vitamin every day morning and night, and that if he doesn't take his enzymes he won't feel good. He can walk you through setting up his "vest and mists" and he is learning how to distribute his medication for himself, he even knows his dose. He also keeps Patrick and I on top of therapy and meds with our daily routines. This little man has tought Patrick and I so much, and we look forward to him teaching and inspiring us for years to come.
We feel like we have a grasp on this. We get it. We still have so much to learn, and we still get anxious, but we have learned balance and most of all we have learned to put it out there. To spread our story and awareness for the disease. And now we want to make as much of a difference as we can.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. I am a CF mom. Not only do I walk for my son, I walk for the entire cf community and hope you will support me in my efforts.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. Not to mention the medications and special needs cfers have. There still is no cure for this devastating disease, and insurance isn't always able to cover the extras they ned. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.