A Letter To A New CF Mom

Dear New CF Mom,

I noticed you and your child today at Great Strides. Your newborn was wearing the same purple CF Fighter shirt my daughter was wearing. So many moments happened between where you are and where I am today and I have so much hope for you and your sweet baby. I wish I had stopped to say hello and introduce myself, but as you know, that is a hectic event and we were both juggling a hundred different things that day.

Had we had a longer conversation, here are some random thoughts I would have for you based on my own experience as a CF mom:

The first year is hard

Crazy hard. You are balancing new momhood with learning all about CF and what your baby needs. You are constantly concerned about how much weight your baby is gaining. If your baby spent any time in the NICU, you are likely dealing with the after effects of being home with the baby—you are relieved to be able to hold them with ease and not see them sleeping in the incubator with cords and monitors, but you also left the safety cocoon of 24-hour care by the medical team. It’s a hard balance but you will figure it out. Every week will get easier.

Tummy stuff is tough

Feeding your baby applesauce with pancreatic enyzmes beads poured in it is a pain, but it will be short-lived. Once your baby is about 18 months, I can teach you a trick to teach them to learn how to swallow pills, if that is something you are interested in. It involves a fruit pouch—you place the pill on the “mouthpiece” and when they squeeze the pouch to get the puree, they’ll swallow the pill at the same time. It’s amazing to see them learn and practice- it is one of the first steps in their independence when it comes to their medical care.

Touch is important

You’ll wish for the vest all the time in the beginning, thinking it will solve something. And it might. But don’t be surprised to find you miss manual PT and that you’ll crave for the physical connection it brings. Our daughter gets manual and vest treatment and to this day still prefers manual.

She is tall and wiggly and it is such a different experience doing it from when she was a baby or toddler, but I cherish those sessions. There are benefits to both and I advocate for continuing manual if you are able to, but I also recognize all families have different needs.

Don’t let CF hold you or your child back

Travel, whether by plane or car. Explore the world if you are able. Enroll your child in sports and activities when they are older—swimming is particularly good for our kids’ lungs. My daughter loves soccer, gymnastics, swimming, dance, karate, and running. She is extremely active and I really think this has helped her maintain her health.

Working is possible

If you are a working parent and want to continue working outside the home but don’t know how it’ll work, I have so much advice for you. My daughter was in daycare from 4 months old until she started kindergarten and I have learned so many tips of how to identify a good daycare for your with CF child and what questions to ask.

Worry is normal

My first Great Strides in Philly was when I was 6 months pregnant with Margo. I really didn’t know anything at that point; just the diagnosis. The next year, Margo was almost 9 months old and we had gone through so much. We had just finished her first round of Tobi and I was still breastfeeding and just constantly worrying. I haven't stopped worrying, they are just different ones now.

Whew! That was a lot. But I know these questions are on new CF parents’ minds because I thought them all. I didn’t discover my CF mom group until my daughter was older and I could have used an outlet and more personal resources to help. With each new step added, it will seem impossible. But suddenly months have gone by and it's simply a habit. I wish you and your family nothing but the best as you learn about your new journey.