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.

Baby, baby, baby… no!

Becoming a mom was my biggest dream from the time I was very young. If you’ve known me for all of five minutes you know that my daughter, Morgan, is the absolute love and light of my life. Being her mom is my calling, my passion, the thing I am most proud of.

I never really planned on Morgan being my only child — I thought I’d have at least two — but it soon became clear that I probably shouldn’t have more children. Pregnancy and those early years were incredibly rough (in fact, those first few years of being a mom were far more difficult and taxing than pregnancy itself was). My health suffered greatly. By the time Morgan was just a couple years old, I had decided that I was done having children. The risk simply wasn’t worth it. I already had all I’d ever wanted and I was at peace with the decisions I’d made.

When Randy and I met, one of the things that initially attracted us to one another was the fact that neither of us wanted more kids. When I was dating, post-divorce, I was surprised at how many men wanted to start a family or have more children. That was honestly a deal-breaker for me. But Randy’s mind was made up — no more babies. In fact, he’d had a vasectomy 10 years before we even met, which was perfect!

I’ve often said that I was not made to be the mother of more than one child. I LOVE being a mom, but I don’t necessarily love kids in general (I know, I know, you’re not supposed to say things like that). The people I’m closest to in life (my siblings, my best friend) all have 4-5 children and, to me, that seems like an absolute nightmare! I love their children, and I admire their parenting skills, I just don’t think I have the same level of patience or ability to manage a life with several children.

Even as recently as a few months ago, I joked with a friend about how I was totally over having periods and feeling hormonal, and “could someone please just take my reproductive organs from me, because I’m done with them. They are of no use to me.”

But, soon after that conversation, I started feeling very… strange. Almost sick, but not, like… a virus or anything. It felt more akin to homesickness, like my body or heart was longing for something. Then one day, out of the blue, I swear I actually heard my uterus shout, “PUT A BABY IN ME!”

I was shocked. What in the world was happening? WAS I BABY HUNGRY?!?! Ew.

That’s not possible, I thought. The thought of having a baby hasn’t even crossed my mind for almost a decade! But sure enough, I found myself remembering how much I loved being pregnant, how precious newborn babies are, and I began genuinely longing for those things again. I knew I was being irrational. Randy can’t even have kids, and I don’t actually want to, do I? But those feelings didn’t subside. In fact, the more I tried to suppress them, the stronger they got.

One night, while laying in bed, I got up the courage to tell Randy what I’d been thinking. I was certain I’d be met with things like, “You’re crazy!” “Absolutely not!” and “Why are there cracker crumbs in the bed again?” (Okay, maybe that wasn’t super relevant to the conversation, but it certainly would have been valid.)

Instead, he started Googling “vasectomy reversals.”

I know! The audacity!

I needed him to tell me I was insane; to temper my impetuousness with reason or an ultimatum. But instead, he was open-minded and willing to consider all options…??? Who does he even think he is? For a few weeks, he indulged me in conversations about this and ultimately, we landed back in the land of rational thinking. We really don’t want another child or to start over at this point in our lives. My top priorities in my life are taking care of my daughter and taking care of my health. I am truly content with the way my family looks. I don’t need or want that to change.

I’ve heard women talk about being baby hungry or worrying that their biological click is ticking, and I did experience those things before having Morgan, but I thought I was over that phase of my life. Apparently not! Which makes me think that someone really should take these organs of mine so they don’t trick me like this again in the future…

But this whole experience makes me wonder, how many people experience this back-and-forth thinking about babies. How do you know when you’re done having children? How do you differentiate between feeling baby hungry for a while and truly wanting to have a child? Is there a set of criteria that needs to be met (financial stability, emotional readiness, health status, parental age, etc.) before you’d consider having a(nother) child?

Also, and perhaps most importantly, are there any of you who know you don’t want more children, but still feel baby hungry sometimes?! Please tell me I’m not alone in this.

No longer confined to the sidelines

I’ve been on Trikafta for just over two months now, and I feel like it’s been a bit of a disappointment when I’ve said that my day-to-day life hasn’t changed that much. This drug is supposed to be “life changing” after all.

Well, yesterday we went sledding and at one point, my nephew was waiting for me at the top of the hill so we could sled down together. So I ran up the hill to meet him.

Did you catch that? I ran up a hill!

If you know me, you know that I don’t like to climb hills, even when I’m “hiking.” And I don’t run. Ever. For any reason. It’s just too painful.

But yesterday, I ran up that dang hill more times than I can count. I didn’t collapse or nearly vomit from coughing, and my lungs didn’t hurt or feel like they were seizing up. I felt fine!

Although at one point, I did sit down at the top of the hill and cry because I was hit with a startling realization. I wasn’t watching from the sidelines as I so often do. I was able to run and play with my kid for the first time that I can remember. Do you know how crazy that is?!

Last night as I was putting Morgan to bed, I felt tears on her cheek as I kissed her goodnight.

“Oh, no, honey. Why are you crying?” I asked.

“Because you ran up a hill,” she sobbed. Then she assured me, “they’re happy tears.”

This. Is. Life. Changing.