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.

Whose body is this?

Life is funny.

Shortly after I posted about my amazing PFTs, my doctor called with some news. Turns out, the X-ray she ordered “just in case” showed that I have pneumonia in my left lung. I’d been experiencing some pain in a couple areas, but no other symptoms.

To say I was confused is an understatement.

Two things that I regularly stress are that 1) CF is insanely unpredictable and 2) numbers are only part of the bigger picture.

If we had just looked at those beautiful numbers, we would never have guessed that something was brewing. Because my doctor wanted to be thorough, we were able to catch this (hopefully early) and start treatment to take care of it before it turned into something much more scary.

I’m still blown away by the fact that I could have such great PFTs while also experiencing pneumonia. That leaves me feeling even more grateful for the effects of Trikafta which have likely kept me out of the hospital.

But it’s also incredibly unnerving to feel so disconnected from my body.

For so many years, I’ve been so in tune with every feeling, every single symptom. I’ve been able to tell the moment something seems off. But this time? I truly had no clue. I’m not having the same symptoms that would previously let me know, “Hey, girl, something’s going on in here.”

Learning this new Trikafta body might be even trickier than I thought. But I’m so grateful I have the chance to, and I feel extremely fortunate to have a whole team of people helping me learn how to navigate this new normal.

Three decades of advocacy

My sisters, Teresa (left) and Shannan (right), on Sun Up San Diego circa 1986

This video of my sisters is so precious to me.

It’s crazy to think that this was a year before I was born. Three years before the CF gene was discovered. Seven years before Shannan died.

Thirty-four years later, here we are… still raising awareness and fighting for a cure. I’m proud to be part of a family who’s been fighting so long.

Mind: Officially Blown

Yesterday, my lung function was the highest I’ve seen since 2014!

I think I’m still processing that a bit.

PFT (3)

I’ve gained 8 percentage points since starting Trikafta in November. Many others have seen improvement far beyond 8% but I’m not complaining! I went into this experience with cautious optimism and absolutely zero expectations. I told many people that if I could simply maintain my level of health and quality of life, I’d be happy. But to see these improvements is a little mind blowing!

I’m not one who generally puts too much stock in numbers. I’ve talked before about how CF is a total numbers game, and sometimes it’s detrimental to obsess over them. Numbers are a helpful tool to measure what’s happening in the body, but they aren’t the whole picture.

Yesterday my doctor reminded me that for those of us with structural lung disease and decades of damage to our bodies, there may never be those HUGE improvements in numbers (although, to me, 8% is still pretty huge). We will always have lung disease. That’s not something to get discouraged about. This drug is also working in other ways, as evidenced by my improved digestion and clearer sinuses.

When Randy first entered my CF world, he asked if lung function was kind of like a cell phone battery – the higher the numbers, the longer the battery life. I told him it’s far more nuanced than that, but for someone who was just learning about CF, that was a decent analogy.

My whole life, I’ve known that battery will drain out. I’ve seen that scenario play out over and over as I’ve watched friends battle and ultimately lose their lives to this disease. It was never a matter of it, but a matter of when my battery would burn out.
When I saw those numbers yesterday, even though I know they’re only one piece of this complex CF puzzle, I couldn’t help but visualize that battery getting a little charge.

And it truly feels like years are being added onto my life.

We’re in this together

“How long have we been on Trikafta?”

Morgan asked this the other night and I’m still smiling about it.

Fighting CF is not something I do alone. I know this. I have friends, family, and care providers who are deeply invested in this battle. But I’m never more cognizant of how CF affects my loved ones than I am in moments like this.

“How long have we been on Trikafta?”

That one word was a reminder that my health affects her every bit as much as it affects me. She doesn’t feel the physical symptoms of this disease, but it has shaped her life in more ways than I probably even realize.

My fight is her fight. She shares in the celebration of my triumphs and the heartache of my challenges. My future and hers are intricately entwined.

She’s right – this isn’t just about me. It’s about us. We’re in this together.

We’ve started this thing where, when we notice the subtle (or sometimes not-so-subtle) ways that my body and health are changing – like when I run up a dang hill or swim the entire length of a pool — we look at each other and simultaneously whisper, “Trikafta!”

I feel so fortunate that I’m able to take this drug. It’s not just changing my life, it’s changing hers as well. I still really struggle with the idea that so many don’t have access or won’t benefit from it. But I’m overwhelmed with gratitude every time I see this little girl’s face light up because she knows her mama is feeling good.

Mom and Morgan

We’ve officially been on Trikafta for 72 days.

And we’ve expressed our gratitude out loud each and every one of those days.

Originally posted January 27, 2020