Have kids, they said ... It'll be fun, they said. You find out that you are expecting and you're excited, anxious, and above all, you have to pee.
The day finally comes and you give birth to this beautiful little being, only to be told that they have cystic fibrosis, a chronic, genetic disease. And you have so many fears, so many questions, so many concerns. You read the posts on social media. And the blogs. Do this. Don't do that. Keep them away from these everyday things. It seems impossible. But you make the appointments, and you meet the care team who will help you navigate. You learn about the meds they need now and ones they will need in the future, so you feel prepared.
And just when you think you have this new life in order, you have another child with CF. Now the troubles have doubled. But you face it head-on and adjust the routine together. Then you get that life in order and find out your youngest also has mild cerebral palsy. So, you make those doctors appointments. You meet the new physical therapist, occupational therapist, and speech therapist. It's a few more appointments, but you make it work. And then, another curveball -- that first child, the one who made you a parent, the easy one -- is diagnosed with Type 1 diabetes. More doctors, more appointments, more meds, more education, more advocating. You wonder if there ever will be a real normal.
But here are a few things I have realized since having both of my beautiful CF babies. A lot of parents think doing everything for their kids makes their lives more "normal," allowing them to really be kids. They put all this pressure and guilt on themselves that doesn't need to be there. Making your kids responsible and self-aware is a huge help. You can educate friends and family, and that's a huge help. It takes some of the pressure off you as a caregiver.
But educate your kids. It allows them the independence needed to visit friends, have sleepovers, go play games, live their best life.
We may all live with it, but it is their disease. I know I can't be everywhere, and don't feel I should be. I believe our family is a team. And teamwork makes the dream work, folks. That responsibility has led us to get pets. Lots of pets.
Life is a balancing act. I know it sounds cliché, but it is. The ability to balance everyday "normal' life and meds, treatments, and doctors appointments seems like a never-ending battle. And sometimes it is. But I am a big believer in my kids' quality of life as well. So, if they are healthy and we are at the lake, an amusement park, or the beach, and we need to miss a treatment, it is OK.
No day is going to be perfect either; so if we don't have enough enzymes, or vitamins, or PediaSure, then we will get it tomorrow. And try to remember better for the next time.
If we don't know the exact carb counts for what my oldest is eating, we will Google it to get as close an idea as possible and fix it later.
I'm lucky to have great kids who know what is expected of them, and in every situation do their best to do so. Granted, they test me daily. But they have been through many doctors, medications, surgeries, treatments, admissions, and overall tests of will and have come out on top. I asked them what they would change about their lives. My oldest would have an endless supply of books ... and another dog. My youngest would have every gaming system ever made ... and a scorpion.
Interested in sharing your story? The CF Community Blog wants to hear from you.