My child’s knowledge of CF

(CW: talk of death)

Morgan was just six years old when she first asked, “Mama, can you die from CF?”

She has known the words “cystic fibrosis” for as long as she can remember. From the time she was a baby, she’s been immersed in the world of CF. She’s attended clinic appointments, stayed countless nights in the hospital with me, and seen me do treatments her entire life.

As a parent, I’ve tried to create a culture of openness in our home, which has included candid conversations about CF.

I’ve allowed her to guide the conversations, never giving more information than she asks for, but also being as honest and transparent as possible.

This has been helpful for her (as her anxiety is lessened when she knows exactly what is going on) but it has also led to some difficult conversations throughout the years. Like the one mentioned above.

“Can you die from CF?”

I believe that honest questions deserve honest answers, so at the tender age of 6, she and I had our first (age-appropriate) conversation about CF and the possibility death.

Because she knows she can come to me with any question or concern about my health, she is never left alone to wonder. While she understands that the realities of this disease can be harsh, she also knows that I am filled with hope.

Not only that, but she understands that I do everything within my power to ensure that I’ll be here as long as possible. She knows that pills, treatments, and hospital stays are all things I can do to stay healthy – so she cheers me on and holds me accountable.

CF adds a dimension to parenting that can be difficult and terrifying. The ways in which we choose to talk with our children about it will be as unique and individual as they are. Not all kids will benefit from the approach I’ve taken, and not every parent will be comfortable with that. I believe we intuitively know what’s best for our children.

For us, this approach has worked well. It’s what she has needed and explicitly thanked me for now that she is a bit older.

The hard things are always peppered with hope.
The scary moments are tempered by love.
And we face it all hand-in-hand.

CF Awareness Month

May is Cystic Fibrosis Awareness Month! If you’ve been around here for any length of time, you know that CF awareness is pretty much always my MO, but this month is made for it!

Throughout the month, I’ll continue to share things about CF here and there (per usual) but what I really want to do is let YOU take over.

If there is anything you’d like to know about CF, particularly regarding my personal experiences, please ask! No question is too big or small, no topic too sensitive.

Are you curious about what life was like with three CF kiddos in our family? Do you wonder how the partner of someone with CF feels (a question for Randy)? Do you want to know more about what CF is or how it affects the body? Do you have questions about pregnancy or parenthood and CF? CF and college? CF and relationships?

I would love to answer these or any other questions you may have! I’m an open book. Please feel free to comment here or send me an email: jenny@lungsnroses.blog

I look forward to chatting with you and doing more of something I am incredibly passionate about — spreading CF awareness!