CF Mom

This is a perfectly written letter by a fellow CF Mama. She says everything I think, except she’s been on this journey for over a decade longer than we have. It’s not written, or shared, with the intent of making anyone “feel bad for us,” it’s to hopefully give a little insight into the daily choices most don’t have to think twice about:

Dear Everyone,

When your beautiful baby is born 1st thing you do as parents….10 fingers. 10 toes. They are pink full of life and good loud cry. Hopefully.
Life is good.

Then a doctor says your child’s median life-expectancy is 42. That means they have a 50% shot at living over 42, not their average age lifespan. And those years they are here will be hard work to stay alive on them and you. They may spend a good portion of their life in and out of hospitals hooked up to toxic iv antibiotics alone with no friends and NEVER ever allowed to play or be within 6 ft of any other children or adults experiencing the same thing. No support groups. They are quarantined for their safety. Unless they are lucky to have siblings or a friend who cares enough to visit, which is only once in awhile. They will miss school, being with friends, class outings, family gatherings, holidays, birthdays, these important happenings in our everyday lives that we take for granted. Kids will be afraid to be friends with them and people will be afraid to love them for the fear of losing them.
They will take 1000’s of pills a month (not exaggerating) and do hours and hours of physical treatments, never getting a day off just to slow the progression. They live in physical pain that it becomes normal. They can get pancreatitis attacks so much needing it removed completely. They will cough, weeze, gasp for air at times.
Your baby will look healthy and people will say they must be fine because they look like any other child. As much you wish that were true it is not. Cystic Fibrosis is not just a disease of the lungs, sinuses, pancreas, digestive system, ETC.
Its about all this.
At first and many times for years things appear to be good and you never know when the progression will become noticeble. You sweat every pound dropped or not gained. You worry when they sleep a bit too much, catch a cold, or another child/person sneezes or coughs near them. You will feel sheer fear from a few coughs, “is this the start of a bad lung exacerbation”. You worry what side effects they will get, like severe or complete hearing loss.They are watched very closely by the CF center, typically a checkup every 3 months. You go to that appointment never ever knowing what to expect. You pray the CF related diabetes, osteopena, osteoporosis, or arthritis won’t hit them. You dread the term Cf related. You privately or silently cry as their lung function drops and continues to drop until of they are LUCKY enough to qualify and receive a lung transplant. Or Liver transplant for some with CF related liver disease. And then pray that they make it through transplant, if it comes in time, if it lasts and don’t reject. This is trading one set of issues for another, so transplant is Not a cure, its a bridge to help carry them and bide them more time. They are never ever a burden. In fact you feel honored to be their caregiver. The disease is a burden.
You will worry, cry, hurt, have fits of rage for this is not fair, in the shower, the car, while they take a nap. But your child will not notice because they are busy. Busy working hard to keep up and even get ahead of others. Busy living their life to the fullest no matter how long or hard it will be. Busy making this world a better place. We all need to make it better for them.

You will take that beautiful baby with the 10 fingers and toes home, broken hearted but in love. In love with an amazing soul. An amazing person that will teach you how to fight for them, and smile for them, and be proud of them despite of everything. A fire will ignite inside you out of love and sheer despiration to save your child. To give them an equal shot at life as anyone else.

So how would you feel if this was your child, spouse, sibling, friend, or parent? What would you do to save them? Honestly? People say “Don’t say things like that! It’s too painful. Too negative!” They are right about one thing….it is too painful. But it needs to be known. How else will people know that they really truely need help.

For so many years I feel like I have held a lot in on account of being afraid of upsetting others. But I have held it in too long. This was not meant to be sad, and wasnt the way we personally found out our 2 kids CF diagnosis, they were real late diagnosed. But it all ended up feeling the same way. But I felt it may be useful to paint a picture of what happens when a child is diagnosed and what follows. Not for pity, just understanding. Please share.

Thank you,
A mom who loves her 2 great kids who also have CF more than life itself