I Have CF SO WHAT?!

On Substack today- celebrating my wrinkles! Trikafta has given me a new perspective on beauty. Link in bio!

CHEERS 🥂 to an easy life. Over on substack I’m writing about the new perspective Trikafta has given me on ease vs difficulty. I’d love if you follow along on my new writing endeavor! https://laurenbweeks.substack.com Link in bio

HAPPY CHEATING DEATH BDAY TO ME! 32 was always the life expectancy growing up from the time I realized cf might shorten my life. Today I’m celebrating with my 3 gray hairs, my proud wrinkles, and getting to experience life as a mama to this sweet boy, and of course with Trikafta that’s made it all possible.

What if I told you, young Lauren,⁣⁣
with the crackles in your chest⁣⁣
and the vibration of your Vest ⁣⁣
and the hum of your neb⁣⁣
and the tears before bed, ⁣⁣
That it was all going to be ok. ⁣⁣
⁣⁣
What if I told you⁣⁣
all those choices, ⁣⁣
(you know the ones) ⁣⁣
(The ones where you wondered⁣⁣
If it was worth it to decide ⁣⁣
because you didn’t know⁣⁣
if you’d be alive) ⁣⁣
didn’t have to be so fraught,⁣⁣
so filled with ⁣⁣
uncertainty ⁣⁣
and wondering ⁣⁣
and questioning.⁣⁣
The future plans⁣⁣
didn’t have to be⁣⁣
wickless candles⁣⁣
melting, ⁣⁣
when all you wanted was a flicker⁣⁣
to light the way. ⁣⁣
⁣⁣
That degree you won’t use?⁣⁣
That career that’s just for now? ⁣⁣
That marriage without anniversaries?⁣⁣
That kid who loses their mom too soon?⁣⁣
That 401k for a retirement that never comes?⁣⁣
That house with a 30 year mortgage you never intend to pay off?⁣⁣
You’ll whisper to young Lauren,⁣⁣
“Thank you,” ⁣⁣
for striking the matchbox⁣⁣
with Hope. ⁣⁣
A blanket in the backseat⁣⁣
“Just in case.” ⁣⁣
⁣⁣
What if I told you⁣⁣
You’d get to. ⁣⁣
Get to breathe⁣⁣
(without wincing)⁣⁣
Get to laugh⁣⁣
(without coughing)⁣⁣
Get to love ⁣⁣
(both a husband and a baby) ⁣⁣
Get to live ⁣⁣
without limits ⁣⁣
and fear ⁣⁣
and inconvenience ⁣⁣
and fu***ng hospital beds. ⁣⁣
⁣⁣
What if I told you⁣⁣
miracles happen? ⁣⁣
And they’ll happen to you. ⁣⁣
⁣⁣
You’ll probably look around ⁣⁣
At the life you’re building anyway⁣⁣
smirk ⁣⁣
and nod your head, ⁣⁣
raise your eyebrows,⁣⁣
looking smug, ⁣⁣
wink
and say ⁣⁣
“Told ya!” ⁣
⁣

Dear Mom, ⁣
⁣
Why didn’t you tell me?⁣
That my heart would burst through my rib cage ⁣
When he took his first breath, cried that little squeaky cry. ⁣
That my face against his soft downy hair would make tears spring to my eyes in the best way. ⁣
⁣
Why didn’t you tell me?⁣
That one stare from his eyes into mine, ⁣
one squeeze of his little hand around my finger,⁣
one hiccup, one sigh, one tiny little milk drunk smile⁣
would leave me breathless. ⁣
⁣
Why didn’t you tell me? ⁣
That a whiff of his soft freshly bathed skin, ⁣
a kiss on his teeny tiny nose, ⁣
his warmth against my chest in the middle of the night,⁣
would turn me to mush. ⁣
⁣
Why didn’t you tell me? ⁣
That when he finally settled after my rocking and sshhhing and loving,⁣
when he latched onto my breast for the first time ⁣
when he lulled himself to sleep all by himself ⁣
That my pride might burst through my skin. ⁣
⁣
Why didn’t you tell me? ⁣
⁣
Oh but I was telling you all along. ⁣
⁣
When I told you to slow down and rest, cause I didn’t want to see you sick or in pain. ⁣
⁣
When I called too many times just to chat and hear your voice. ⁣
⁣
When I hugged you a little too tight the day you left for college. ⁣
⁣
When my eyes welled up seeing you marry the love of your life that day in August.⁣
⁣
When I stayed up all night while you labored with my grandson, eager for my baby to meet her baby, who I would love just as much. ⁣
⁣
Why didn’t you tell me? ⁣
That love could be this big, this real, this pure, this unbelievable, indescribable, unrelenting. ⁣
⁣
Well, maybe I knew all along, Mama bear. After all, it takes a Mother’s love to learn how to love at all. ☂⁣
⁣
-Lauren B. Weeks⁣
⁣

Haven’t hopped on this account in a while but just had to announce my Trikafta baby’s arrival! I have never felt such immense love and gratitude for the gift of being alive and healthy enough to be a mom thanks to . Every day I’m in awe of getting to experience such love and such joy. The other day I sat crying, not because I was overwhelmed or tired (ok maybe a little tired) but because I couldn’t handle the emotions of how blessed I feel. I never ever imagined being here today, 31 years old, virtually no health issues to speak of, a future filled with raising my son without a concern I would have to leave him too soon, but here I am and life is so so sweet. 💜

Having kids was never a given for me. I with the decision to bring a baby into this world when my life expectancy told me I might have to leave them behind. I worried about if my body would be healthy enough conceive or to carry a child. How would my body handle sleepless nights and germy toddlers? How would I balance taking care of myself and taking care of another human? ⁣
⁣
Enter Trikafta. ⁣
⁣
After a year on this drug, my lung function was back to 100%. Read: normal. I no longer needed daily treatments, and when I got sick with a cold or allergies, it didn’t land me in the hospital. I truly felt cured of cf. My future opened up wide and the decision to have kids became a lot more clear. All those barriers that existed my whole life were suddenly... gone. Suddenly I had all the same concerns a “healthy” person had when it came to deciding to have kids, and none of them were cf related. And after witnessing first hand the love my mom has for me, I knew in my heart I wanted to be a mother. ⁣
⁣
I’m beyond excited to announce that Kyle and I are expecting a baby boy this October. Pregnancy has been a beautiful, scary, and miraculous experience for us. I have felt completely embraced by the love and support of family and friends. We are over the moon and can’t wait to meet our little guy! ⁣
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