The stuff of nightmares

Early this morning, right before she awoke for the day, Morgan had a dream that I lost access to my medications. She then sent the following text from under her covers with tear-filled eyes.

“Momma, are you gonna lose all your meds?”

This is the fear we live with. I don’t just mean myself or my family, but also millions of others who are disabled or chronically ill and rely on expensive medications to stay alive.

While I currently have access to comprehensive healthcare and affordable prescription copays, I know firsthand that something as simple as a small change in personal circumstance, the whim of a health insurance company, or a faulty piece of legislation are all that stand between myself and a total healthcare crisis.

It’s exhausting.
It’s frustrating.
It’s sometimes terrifying.

This morning, after receiving her text, I called Morgan in to my bedroom to talk about things. We both expressed our thoughts, I offered reassurance, and we snuggled for a while. By the time we got out of my bed we were laughing, and I think that for a while at least, her worries have subsided.

I’ve said before that living with CF oftentimes feels like waiting for the other shoe to drop. Even when things are going well, uncertainty lurks in our minds and the minds of those who love us.

It is quite literally the stuff of nightmares.

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.

Finally taking a breath

“This means so much to me,” I said to the sweet nurse administering my first dose of the COVID-19 vaccine back in January.

“Living through this pandemic as a high risk person has been… a bit stressful.” I chose my words carefully, not wanting to regurgitate my many personal frustrations onto her unsuspecting lap.

What I didn’t say was:

This has been so scary.

I absolutely hate the way we’ve been treating each other throughout this pandemic.

I’ve been shocked at the ease with which so many were willing to sacrifice the safety of the vulnerable for their own comfort and convenience.

I’ve been enraged by the politicization of medicine and science and human lives.

I’ve been saddened by the way this last year has forever changed some of my relationships.

I’ve been enraged and heartbroken by the massive amount of preventable loss we’ve experienced.

Those were the things I didn’t say, but as we talked a bit more, it became evident that I didn’t need to. She understood and shared some of her own frustrations and experiences with me.

For a moment, right before she gave me the injection, we looked each other in the eyes and smiled behind our masks (you don’t even need to see faces to feel genuine smiles; the eyes are always a tell).

“Well, maybe now you can take a breath, honey,” she said warmly.

• • • • • •

I was lying awake in bed last night and this conversation came flooding back into my mind.

When I hear or read people talking negatively about these vaccines or still debating the necessity of taking precautions (which, let’s face it, happens on the regular) I just remember this conversation and the peace it brought me. Her kindness and the moment of connection we shared made an exciting experience even more memorable.❤️

Some thoughts on life expectancy

“Cystic fibrosis is a fatal genetic disease.” I was in a 9th grade Biology class when that phrase jumped out at me from the pages of my textbook. “Many individuals with cystic fibrosis die before reaching the age of 20.”

“Hey,” my friend loudly said from two desks behind me, “Isn’t that what you have? Are you, like, gonna die soon?”  Awesome. Just the conversation every young teen hopes to have in class. [Insert: heavy sarcasm]

The phrase “life expectancy” has hovered over me like a dark cloud for much of my life. I don’t recall the first time I heard the specific words or began to truly understand their meaning, but I’ve felt the weight of them for as long as I can remember. After losing a sister to CF when I was just 6 years old, I began to realize what that could mean for me one day. I have never been blind to the ugliness of this disease, but carrying that knowledge in my heart and mind is a bit different than being confronted by it out loud in a classroom full of my peers.

“Yeah, that’s what I have,” I said, probably a bit awkwardly. “But I don’t plan on going anywhere anytime soon.” This was not the last time I’d be asked about my life expectancy. In fact, after years of practice, it’s something I’ve become quite comfortable discussing. Only now, my thoughts about it have begun to change.

Growing up, I couldn’t picture life very far into the future. I never imagined myself growing old. I’d envision things like high school graduation, sometimes even marriage and motherhood, but after that… it was blank. I literally could not picture myself at any advanced stage of life. Mind you, I was always hopeful, but there was a distinct blank space whenever I tried imagining the distant future.

Because of this and the uncertainly of CF in general, it’s always been difficult for me to make long-term plans. Instead of planning things out, from quite a young age I chose to focus on the day-to-day, to pour my heart and soul into whatever I was doing, and to hope that I’d be able to navigate whatever obstacles I might encounter along the way.

Life is uncertain and tomorrow is guaranteed to no one, but knowing that my life expectancy is significantly less than average has taught me to approach life with my heart and eyes wide open, appreciating everything. I believe that being well-acquainted with hardship and learning to accept mortality gives a person the unique opportunity to be bursting with life. As a fellow fighter said, when it comes to CF “no love is half-given, no day is not lived to its fullest and nothing is ever taken for granted.” If anything, isn’t the possibility of a short life even more reason to seize the moment, to find and pursue the things you’re passionate about, to really live?

I imagine all it takes is a simple Google search or a quick conversation about CF for the parents of a newly diagnosed baby to learn about their child’s life expectancy. As a mother myself, I’m sure that is an absolutely heartbreaking and terrifying experience. Seeing that number feels a lot like being hit in the stomach with a ton of bricks. While that pain is valid, it’s important to remember that there are so many things NOT captured within that simple statistic.

Life expectancy cannot measure the worth of a person’s lived experience. It can’t capture the complexity or beauty of the relationships we create. It’s impossible to quantify the lasting impact a person can have on the people around them. Life expectancy can’t count memories made, or gauge the amount of love shared, or put a numerical value on the quality of a person’s life, no matter how brief it may be. Life expectancy is an ever changing, indeterminate number. It holds meaning, yes, but there are so many things that carry more weight and significance in life.

When I was born, my life expectancy was in the low 20s. By the time I had reached that age, the projected numbers had increased into the 30s. Currently, life expectancy for people with CF is higher than ever and increasing each year thanks to fundraising, research, and development of new drugs and treatments. CFTR modulators in particular are changing the face of this disease and the future for many of us is bright. My life is transforming before my very eyes in ways I had never dreamed of.

Recently, I was talking with Morgan about her future: college, travel and hopefully one day, children of her own. As we were discussing this, I could vividly picture her in a hospital bed, exhausted, but lovingly cradling a warm, wrinkly new babe on her chest. In that moment, there I was – a proud grandmother — standing near the bed smiling. And then it hit me…

I could actually see myself there, grey hair and wrinkles included. More than just hoping for that future, I was finally seeing it for the first time.

Maybe that doesn’t seem like much to some, but for me, it’s a huge step. Carrying the emotional weight of a shortened life expectancy and experiencing the mental/physical trials of CF have helped shape me into the person I am – a person I genuinely love and am so proud of. Because of these things, I’ve learned so much about life and the way I want to live it. These things have instilled courage, resilience, and determination within me.

While these things are all positive, the downside is that I’ve always hoped but never planned. I’ve lived well but haven’t prepared well. Perhaps it’s time to start planning for the future I’ve always hoped for; the future I can finally picture myself living.

A love story (of sorts)

I’ve said it before, and I’ll say it again: I don’t need flowers, poems, or over-the-top gestures. One of the most romantic things Randy does for me is sterilize my nebulizer cups.

But it hasn’t always been that way…

Spending a lifetime dealing with the challenges and unpredictability of CF can make a person (me 🙋‍♀️) long to control whatever tiny thing they can.

The things I can control are related to my healthcare routine. I may not get to determine the outcome or know what bumps lie in the road ahead, but if I do everything within my power in a very specific way, I can face the unknown with a bit more composure.

(Yes, I’ve talked about my control issues in therapy.)

When Randy came into my life and wanted to start helping with things related to my care, I wasn’t sure I wanted him to! It took a long time for me to let him take over certain tasks (even small ones like sterilizing nebs) and it wasn’t an easy thing for me to do.

But in time, I learned that letting go of some of the smaller things is not only okay to do, it’s pretty freaking awesome!

While he and I both know I’m totally capable of doing things on my own, it’s nice to know that I don’t always have to.

He’s got my back.
And my nebs.
And to me, that’s real love.