Is this parenting decision right or wrong? Is this the correct schedule for today? Will our schedule give us enough time to get everyone where they need to be and get treatments done at a decent time before bed?
I think it is safe to say there is no handbook for parenting and there is definitely no handbook on parenting kids with cystic fibrosis. There may be things that are similar, especially for our CF kids, but how we plan our treatments, how we make decisions for our kids and family, and how we parent each and every day is different.
I have learned during my time as a mom — and as a mom to kids with CF — that different is OK. There is no right or wrong way. We as parents have to do what is right for our families. This may look different every day in my home. I am raising three very active boys — my oldest does not have CF and my two youngest were diagnosed via newborn screening. We are on the go often and we are constantly changing our routine to make things manageable, but possible. My husband and I decided early in our parenting that we wanted our kids to be active — active in sports, active in school, and active in the community we live in. When our second son was born and diagnosed with cystic fibrosis at 6 months old, we began to learn just how important being active would be for him.
It’s definitely not always an easy task to juggle kids who are on the go while managing their extra needs — like cystic fibrosis medications, treatments, and extra medical appointments. To me and my family, it's worth it.
When our third son was born and diagnosed with cystic fibrosis, I remember thinking to myself that I had no idea how we were going to manage TWO kids with CF. How could we manage two kids in vests multiple times a day, and even more if they were showing signs of illness? How could I remember all the medications and timing of medications for two kids?
Just like parenting healthy kids, there is no right answer. We do what works for us on that day and in that moment. We just have to plan our day a little more carefully. I am always reminding myself that what works today may not work tomorrow. And my plan for today may not work today — like any other normal human being, I am hard on myself and I need to remind myself to give grace, especially to myself. I am learning on this journey and I always want to be learning.
Our two children with CF have different routines. Everyone is so different — even in the same family.
They are five years apart and their treatment routines look different from each other. If anything caught me off guard, that was the biggest thing. I thought their treatment routines and medications would be the same, but we learned we would have to adjust to two different routines.
Is it ideal to haul two vests to a hotel for one night? Absolutely not, however, each vest is part of my children’s treatment regimen and I have learned some tricks along the way without jeopardizing their health. We do what works for us and we give ourselves grace along the way. We also involve our oldest son as much as possible. He is old enough to understand what CF is and why we do everything we do to be active and stay healthy. It is important to me to make sure he understands the importance of health, not only in the presence of CF, but for all of us.
When I reflect on the days and weeks behind me, I have to remind myself there is no right way to do this CF parenting thing and no one telling us how this is supposed to work. My husband and I can only say what has worked for us and what has not worked for us.
To all the parents and caregivers of young ones with CF — we are all in this together. Give yourself grace.
Do what works for you and your family at the moment and do the best you can do. This is not a race and we should not compare our family to other families. Be open to change and be open to learning. We are always learning.
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