Hello. My name is Kaytlyn. I'm 22 years old and I have the most sassiest, goofiest, smartest baby girl I've ever laid eyes on. She was born August 12, 2017 at 5:57pm weighing 7lbs 9oz. She was perfect. She had a head full of brown hair. & she was everything I could ever have wanted.
We took her home the 13th of August and enjoyed her with every ounce of our being. On August 20th around 11am, I got one of the most terrifying calls I could have ever received. It was her doctor, stating that she may have Cystic Fibrosis and she needed to be seen ASAP for further testing and possibly diagnosis. On Sept. 04, 2017 she was diagnosed with C.F. I didn't know what that meant, or what the future held for us.
I did what everyone told me not to do, I searched on google what the hell this Cystic Fibrosis stuff was, & it scared the ever living shit out of me. "Most people who have C.F. don't usually make it out of childhood." That was probably the scariest thing I'd read, I wasn't prepared to give my baby up. Not now, not ever.
It's been a year and a half since we found out about her C.F. Diagnosis over the course of a year and a half she's had thankfully only one hospital admission, and countless of prescription refills.
This diagnosis often feels so heavy. At times, I have found some words. I have been able to open up about little things that happen, to my family and my SO. This is real. She is actually chronically ill. This isn't going away.
But most of the time, more so in public, my vocal cords feel broken when the topic of my daughter's illnesses come up. I can talk about her and her sass, all day long and her ability to be "normal." That makes sense to me. This doesn't. This illness is foreign. It doesn't belong here.
But it's been an whole year and a half, and I can talk a little bit more about it and her.. My heart no longer feels like it is drowning, when I think of what this means for my daughter – what this means for me and our family.
I am learning what it means to be a parent of a chronically ill child.
Being a parent of a chronically ill child means all the pharmacist at Walmart knows us by sight, and our names. They know all the prescriptions. They say yall are regulars. They say, "See you soon!" every time I leave, and we both know they will.
Being a parent of a chronically ill child means I check to see if she is breathing sometimes, in the early morning hours, when she is finally asleep. I slowly grew more confident as a mom.
Being a mother of a chronically ill child means we live our life according to good days & bad days. Good days mean we go places, we go out in public, go the grocery store, park, etc. Bad days mean we stay home, and pray for a better tomorrow.
Being a parent of a chronically ill child means I see a side of life that I didn't really knew existed. I see other parents, in the waiting rooms, at the hospital, in the stores. I see them with their obviously medically fragile children. I really, really see them.
I pray a lot. It means I am learning to surrender to this life I have been handed. I cry, a lot. It means I love, a lot. It means I try harder. I give-up. I lose it. I laugh. I wish I could sleep more. I wear PJ pants more often than I should. I enjoy everyday moments so much more.
Being a parent of a chronically ill child, at its core, is really not any different from just being a regular parent. We all worry about our kids. We all struggle with how to help them the best we can. We all wonder how prepared they will be for adulthood. We all do the best we can. We all fail. We all succeed. We all struggle with how to not mess it up. We all pour ourselves out.
Being a parent of a chronically ill child is more about being a parent, than it is about chronic illness.
We've got this.
