My Messages for the Newly Diagnosed

I recently connected with a local mom who, like me, has two beautiful daughters. Her baby girl was born with cf. She invited me as an “experienced” cf mom; along with a social worker and respiratory therapist from our center, and staff person from our chapter; to join in an evening gathering at her home to talk about what life is like with cf in the presence of her closest extended family and friends.

The purpose of the evening was to inform the inner circle about how best they could support this family and their little daughter. But the benefits of the conversation were exponential. I can’t think of a smarter, more inspired idea than calling in your reinforcements during those early days of cf parenting. Those are the days when you’re still fretting over your baby’s every gurgle and wondering what warrants calling the doctor. Those are the weepy days of wondering when or if you’ll ever feel (back to) normal. Frankly, you’re wondering if anyone else can adequately learn how to care for your child with so many complex medical needs. You’re seriously doubting you’ll ever get another date alone with your spouse.

This family welcomed me warmly into their home on an icy winter night. We shared in food and wine before settling comfortably in the living room to talk. We gazed upon the baby who kicked and cooed happily on a blanket on the floor. While we can predict certain things about cf, we can’t know what’s in store for this child, what challenges her future holds. Only one thing’s for sure. The goodwill of the exceptional people who gathered together in that living room is sure to carry her through.

Here are the thoughts I shared with them:

  1. You can still be the parent, or family member, or friend you are meant to be. You just add on an extra layer for cf. Think of cf like a blanket, albeit sometimes a wet and scratchy one! My advice is to stay true to your parenting style. Hold fast to your family traditions. Keep the pastimes you love in your life. Keep traveling. You just have to bring along the blanket.
  2. Your child can still be the person she is meant to be! Remember, cf is now a manageable condition people survive with thanks to advances in treatment and care. Grown-ups with cf often say their disease does not define them, but is only a part of them. Give your child any opportunity to pursue her dreams. She just has to bring along the blanket. For a long while, you’ll be there to help her carry it.
  3. There is no denying cf requires a lot of extra time, work, emotional and physical energy, organization, money, and more. These factors will become your new normal. Be ready. Because before you know it, you’ll be cooking nebulizer stew every night for at least the next eighteen years. And you’ll get so good, you could do it with your eyes closed. Guaranteed. You’ve got this!
  4. Cf will absolutely change any old easy-going ideas you used to have about germs and cleanliness, and illness and medication. You will panic every time you hear about a sick classmate or cousin. You will never again forgo a flu vaccination. You will never leave home without having enzymes and hand sanitizer in your possession. Never ever. Welcome to the hyper-vigilant club.
  5. Cf will change you forever. It brings the whole family plenty of heartache, but also silver linings, and maybe even a greater purpose. While much of cf feels uncontrollable, remember the parts you own. You can:
    1. Establish a good routine early-on for your child and your family;
    2. Make adjustments as you learn. Once you know better, do better; and
    3. Jump into cf events to feel like you are actively helping your child.

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