Raising a child with a health condition can be a lot of things: stressful, a blessing, educating, hopeful, tiring, eye-opening, frightening and heartbreaking. And until you’ve done it or been close to someone who has, you just don’t know what it’s like. Sometimes you don’t know what to say or how to help. Here’s what parents of children with cystic fibrosis, a genetic condition that leads to life-threatening lung infections and failure to thrive, want you to know.
1. You Would Do It Too
People often comment that they don’t know how I do it, or that they could never do what I do. First of all, I’m probably in awe of how your children always have their hair brushed and don’t have stains all over them. That, to me, is amazing. And second, you absolutely could and would do everything I do because you wouldn’t really have a choice—not if you love your child. When my daughter was first diagnosed, I cried and wondered, “Why me?” Why did I, the one who can’t seem to keep the kitchen counter clear for more than 30 seconds, end up with a child who needed to be protected from germs and bacteria? People ask me how I do it, and honest to God, I am not sure I am “doing it.” I’m just getting through the day in one piece like any other mom (with laundry on the floor and dishes in the sink).
2. We Break Down in Private
Some days, I have to force myself to do anything. I distance myself from emotions regarding my own child’s condition and then cry my eyes out over other children. I smile. I fundraise. I say that this is just our life and that treatments and appointments and medications are our new normal. And they are. But every once in a while, I lose it. As much as I would like to say that CF never controls our life, there are moments when it has to. That sucks. If I have to cancel plans because of something CF-related, I say it’s no big deal. It’s a half-lie; don’t let me get away with it or assume I’m okay. I could probably use a good venting session. Just ask the ladies at the salon who witnessed me break down mid-haircut.
3. We Don’t Want Your Pity, We Want Your Support
Don’t feel sorry for us. Support us. Be there for our fundraising events. Show up when we need help getting everything taken care of. Babysit for us when we have appointments. And follow our rules surrounding our child so that we can keep her healthy with less of a struggle. Don’t stay away out of fear.
4. We Are Grateful
Yes, treatments for CF take a big chunk of time out of our days. In one month, my daughter spends more than 50 hours doing treatments. That’s the loss of more than two days’ worth of time. She might not be at the point to be grateful yet, but without those treatments, she would be a very sick child. Before these therapies were invented, children didn’t live long enough to go to school. But thanks to these nebulizers and medications and products like The Vest, my daughter gets to go to school and has yet to spend more than one night in the hospital because of CF. The treatments may take up hours of our time, but they give us back years of a precious life.
5. We Can’t Get Out A Lot
One of the downfalls of all of those treatments is that someone has to be around who knows how to do them. Your average teenage babysitter probably won’t be able to jump right in. Don’t stop inviting us out just because we keeping turning you down. It’s not that we don’t want to get out for an evening, but sometimes (many times) it just isn’t possible.
6. We Need to Believe Our Children Will Outlive Us
We work hard every day to ensure one thing: that our children will outlive us. Unfortunately, we can never really be 100 percent sure of that, can we? But no parent can. Tragedies happen. And with CF, they happen a lot. We push through our fears and try our best to stay positive, but that underlying fear is always there.