Parenting a Child With Cystic Fibrosis: 10 Ways You Can Actually Help

I remember the exact moment everything changed.

One minute, I was arguing with my toddler about why we do not put blueberries up our nose and the next, I was sitting in a sterile hospital room, nodding like a confused bobblehead while a doctor said the words “cystic fibrosis” with the kind of gentle voice people reserve for funerals and Hallmark movies. 

My brain went quiet. Hoping that it was just that the doctor was speaking Hebrew and I didn’t quite understand what he was saying. I was hoping it was just the communication gap I, as a new oleh, had grown accustomed to.  

 My heart started sprinting. 

And all I could think was: “Wait… what? No. That can’t be right.”

Turns out cystic fibrosis means the same in English and Hebrew. 

The First Month: The Great Hug of Humanity

People showed up. My phone buzzed nonstop. Meals appeared at my door like clockwork. Friends cried with us. Neighbors dropped off toys for our other kids. Family members flew in and hovered like we were national treasures wrapped in bubble wrap. We were held very close by so many people. I mean there were a few people I thought were close friends but they ended up avoiding us like they would somehow “catch” our misfortune. But for the most part, the community showed up for us. 

For about six weeks, it felt like we were floating on a communal raft made of hugs, lasagnas, and “Call me ANYTIME” texts.

And then…

Approaching Six Week Mark: Silence

Suddenly… nothing.

Our parents flew back to America. The check-ins dwindled. The meals stopped. People went back to their lives… understandably. But we couldn’t go back to ours.

We were still drowning in treatments, meds, hospital runs, respiratory therapy, and the terrifying reality that this isn’t a phase.

 There’s no “see you when this is over.” There is no “after” in sight.

Cystic fibrosis is a forever diagnosis.

Month Three: The Loneliness Settles in

What no one prepares you for is that after the crisis passes, the marathon begins. And marathons, as it turns out, are very lonely when everyone else has gone back to sprinting.

We didn’t need casseroles anymore (although on some days it would have been helpful). We needed company. We didn’t need daily texts (we didn’t even want them). We just wanted to know we were not alone and thought of with some sort of consistency.

We didn’t need pep talks (really, we didn’t). We needed presence.

But people don’t know what to do in these situations unless they have been through similar.

They assume no news is good news.

And honestly? We didn’t want to be the ‘nebachs’ always asking for help. 

Even if we could put aside our fragile egos, what would we even ask for help with?

So we smiled. 

We coped. 

We became experts in medical jargon in both Hebrew and English and more importantly, we became proficient in emotional duct-taping.

But inside, we were screaming:

“Please don’t forget us. We’re still here. This is still hard.”

Until Krovim came around we felt lonely and invisible. And I’m sure that people, had they known how hurtful it was, would have done things differently. So I thought it was important to share ways the community can be helpful when it comes to showing up for families who have a child with chronic illness (besides for donating to and volunteering for Krovim). 

10 Ways to Show Up for a Family With a Child Who Has a Chronic Illness (Without it Being Overwhelming or Awkward)

These aren’t casserole-delivery type suggestions (though casseroles still help).These are sustainable, real-life, “I love you and I’m not going anywhere” ways to support people you care about who are going through this kind of hell long-term.

1. Schedule a recurring reminder on your phone to check in.

Not every day, not every week. Just… regularly. A simple “Thinking of you” means more than you think. Don’t worry about it sounding inorganic. Just do it. 

2. Ask specific questions, not vague ones.

Instead of: “How are things?” Try: “How is the new treatment going? ”It shows you’re engaged and not afraid of the topic. Avoiding the words of the illness makes it feel like you think there is something to feel shameful about. And there is no shame in having a child with an illness. 

3. Offer practical help without making a big production out of it.

• “I’m already at the store… Do you need anything?”

• “I’m dropping off coffee, text me your order in the next half hour.”

• “Want me to take your other kids for an hour after school?”

Do not underestimate the power of an hour. Make sure to offer practical support, not vague like “how can I help you”. We don’t always know what we need. 

4. Keep inviting us…even if we often say no.

Our capacity fluctuates moment to moment. The invite says, “You’re still part of this friendship.”

Please don’t be insulted when we say we are coming and we don’t show up. We love you and still want to be on your radar.  It’s not you. We just might not be coping so well. 

5. Celebrate the tiny wins with us.

A good lung function score?A treatment breakthrough? A hospital-free month?

YES… throw confetti in our group chat.

(I forgot to mention… it is underrated how helpful it can be to start a besties group chat so there are people standing by to throw the virtual confetti with)

6. Learn the basics about the condition.

You don’t need a medical degree. Just care enough to google. Then you’ll understand why we’re tired, protective, and constantly sanitizing everything like germaphobes with trust issues.

7. Don’t disappear because you “don’t know what to say.”

You don’t have to say anything profound. Presence > poetry.

A simple heart emoji is way better than ghosting. 

8. Encourage your kids to be kind to ours.

Teach them how to include a child with medical needs. Kindness from peers is life-changing.

9. Share our load in invisible ways.

Send a funny meme. Drop off fresh fruit. Help with a school pickup.

Especially after month three… Little supports stack up. They keep us from completely collapsing.

10. Make it known you're with us for the long haul.

Not just drawing the crisis situation. Not just during the dramatic parts.

Chronic illness is a lifelong story. 

If You Remember One Thing…

Parents like us aren’t looking for pity. We hate feeling needy!We’re so appreciative of our genuinely compassionate friends who sit with us in our darkest moments even when it’s uncomfortable and a community that doesn't vanish once the initial shock wears off.

Sometimes the greatest kindness is simply not forgetting. It’s staying close, which is why Krovim is such an important organization. 

If you can do that, you’re already making our world lighter.