Teaching My Kids Hard Truths About CF
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Having enjoyed good health most of my life, I gave little thought to cross-infection risk -- even though others in my family have cystic fibrosis. The birth of my son has me rethinking that.
Figuring out your child's CF diagnosis is complicated on its own, but learning how to communicate everything that goes into caring for your child to those outside of the CF community can be even more overwhelming. Here are my tips and tricks to using your voice to both educate and advocate on behalf of your child.
When our daughter was diagnosed with cystic fibrosis, all I could think about was walking into that first CF clinic appointment and walking out with “the vest.” Although transitioning to the vest was the change I feared the most, it's been a welcome change to our once-difficult routine.
My husband and I spent our first weekend as parents contemplating the news that our new son had cystic fibrosis. Although we handled it in very different ways, we were ultimately able to overcome the initial shock, with an entire team to help us along the way.
Before my daughter's most recent clinic appointment, I took to social media and asked for tips on getting your child to start wearing a mask. Here's what worked for us.
My husband and I tried everything to encourage weight gain in our young son to no avail; so we chose to get him a gastrostomy tube.
When our daughter was born with cystic fibrosis, we knew that our older son's brotherly duties would be more complex than we had originally anticipated. But, as our family has grown, I have complete faith that while their needs may be different, the love we give these two amazing children will always be the same.
Not many people can say they had a second chance at life. But, thanks to organ donation, I can. And I'm not just alive -- I'm living. My feet hit the floor every morning because there is no better motivation than clear purpose, which for me is motherhood.
Before we knew what to call it, cystic fibrosis had inflicted damage on the lives of my sons and me and left fear in its wake. Three years after my sons' late diagnoses, knowledge has calmed the storm and provided a measure of peace.