This Mom of 2 with Cystic Fibrosis Shares Her Parenting Struggles as She Awaits a Double Lung Transplant
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Name: Lauren Molasky Fierst
Location: Los Angeles, California
Occupation: Author of The Sky Cracked Open and Fashion Blogger
Family situation: Married with two children, 12 and 9. I am lucky enough to be a stay at home mom. We are very close with our families so there are many sleepovers with grandparents and close cousins. My sister’s three kids are close in age to mine. The five cuzzies are inseparable, so we’ve always called them "The Five Tribe."
Parenting “philosophy” in a sentence: Your kids will always remember how you made them feel so I always try to be loving, open and honest.
What was your journey to having the family life you have today?
I was diagnosed with Cystic Fibrosis (CF), a chronic disease that affects your lungs and digestive system, at three days old. At the time, my parents didn't know anything about the disease and my life expectancy was pretty grim. Thankfully, doctors have made incredible advances so now people are living a lot longer, fuller lives. I feel really fortunate that I had as many hospital-free years as I did.
Throughout my life, I was relatively healthy compared to others. My first hospitalization wasn’t until I was 16. After that I had many relatively healthy years without any hospitalizations. Some people are as young as teens when they require a transplant, so I feel very fortunate to have made it as long as I have. CF destroys a person’s body.
CF is a progressive disease so no matter what you do, your health is going to decline and you're going to continue to get worse as you get older. However, there are so many new drug therapies out right now that didn't exist when I was younger. Things feel a lot more promising for anyone who is diagnosed now, and that's amazing.
Ever since I was little, I couldn't wait to be a mom. Given what I knew about my health, I wanted to have kids relatively young so that I could spend the most time I could with them. I had my son when I was 24, and my daughter at 27. I'm really grateful that I have been able to have all of these wonderful years with them and be a very hands-on, active mom. My kids are my everything — my motivation. I fight my battles as hard as I do, all for them.
For years and years my son has used every chance he's gotten for a wish — every a birthday candle, every eyelash — for his mom to get new lungs, which is amazing and heartbreaking at the same time. I've currently been at the hospital for 80 days, which is the longest I've ever had to stay. It's been really hard, and of course they are very sad, but they know that this is where I have to go sometimes to get better.
I have a collapsed lung that won't heal, and so there's no way I can be home right now. The real solution for my problem would be to have a transplant, so we're hoping that any minute now, I will get called.
It's incredibly hard being away from my kids for this long, and COVID-19 has added a whole different, awful layer to this. Because of COVID, they can't come visit regularly. Other times they could come and be in the room every day, but now, they've only gotten to come twice and we've had to go outside, which is not the norm.
With all that being said, my kids are still very, very happy and adjusted. We talk and FaceTime every day. They're with my parents and they are very caring, sensitive, sweet kids who are extremely tough and understanding.
Due to COVID, hospitals have had to become very strict with their visitor policies. It has made this hospitalization incredibly hard for me since I am not able to spend this unforeseen amount of time with my family the way we would want to be spending it. Visitors are not allowed in the rooms and we are forced to take the risk of COVID and its repercussions very seriously, both pre and post transplant.
There's a drug modulator that came out at the end of last year that helps about 90 percent of the population with CF who have certain mutations. It almost stops the disease in its tracks so it doesn't really progress. It's made people's lung functions go up and there have been really positive outcomes for people who are able to take it. Unfortunately with my mutations, I am not in that category. I'm in the 10 percent that it does not help. But [researchers are] working on that so I believe my future with CF is bright.
For young people with CF thinking of having a family, I want you to know that it's absolutely attainable. I never wanted my disease to stop me from living my life. Having children was really important to me, and now I can say my kids are the most incredible people I know.
How did your upbringing influence your parenting style?
My parents always let my sister and I have a voice. They have always been incredibly supportive of everything we wanted to do. They listened to us, even while disciplining, so that made me want to do the same for my children.
I've always tried to talk to them like adults and I've tried to be very open and honest. I make it clear that they have a voice too and that they should use it. I always want to be the person that they come to if they need help or if they need something. We're a very, very close family.
What’s your favorite thing about parenting?
Everything. I mean, there's really nothing like it.
I really love hearing their thoughts and how different they both can be, especially now that they're at really fun ages. It's been fascinating to experience life through their eyes and it's something I really enjoy.
What’s the hardest part?
The hardest thing right now is not being able to be with them — not being able to swim with them, play with them, do all the things that I used to be able to do. It definitely weighs on me. I feel horrible that I can't be that type of mom anymore but my goal and what I really focus on is that I will be able to be that mom again, and soon.
What's the best advice you can share with new parents?
Don't stress about everything, find a routine or a rhythm that works for you and trust yourself. You don't need to read every single baby book, every baby blog or listen to any other parents. Trusting your own instincts is the best thing. They're usually right, especially for mothers.
What would you want your kids to say about you as a parent?
I would want them to say that they were always heard and that they always felt loved.