By Lexi Behrndt via Redbook
It’s hard to support people through difficult times. Honestly, before two years ago, I would have felt a lot of compassion and a lot of confusion if I were placed in a situation of supporting a parent of a chronically or critically ill child. That is, until I became one myself.
On April 10, 2014 I gave birth to my second son. He was perfect, and he was purple. What I thought would turn into a quick visit with the on-call pediatrician in the hospital nursery suddenly turned in to my son fighting for his life, not just for a few hours or for a day, but for six months and 17 days in an pediatric cardio thoracic unit as he fought for his life against the giants of childhood disease: congenital heart disease (Obstructed TAPVR) and pulmonary hypertension.
If I could, I would choose ignorance and health over experiential wisdom, unfortunately, in his life and his death, I’ve learned big lessons about how to support other parents of chronically ill children, what to say, and even more so, what not to say.
1. “Don’t worry.” Friends, don’t say this. We know you mean well. We know you want to ease the burden, but it would be impossible not to feel fear or concern for our child. This isn’t helpful at all. Follow this little piece of advice: if you are outside of the position, don’t give advice or instruction to the person inside.
2. “They’ll be fine.” Ask any parents of chronically ill children, and we’ll tell you that we want the best for our child. The reality is sometimes stark, and sometimes, we are put in positions we never want to be, where our child is so sick, and we have to face that there may be a day when they will no longer be in our arms. It’s not being a bad parent. It’s acknowledging reality.
3. “If you have enough faith, they will be healed.” This is my personal hill to die on. This is just not true at all, and while it may be said with the best of intentions, it’s more condemning than loving. When people have faith, they doubt themselves. If they don’t have faith, it will implicate that God chose not to heal their child. This is unnecessary and damaging in any form.
4. “Well, they don’t look sick.” We would love if looking well on the outside indicated internal health. The reality is that there is so much more than meets the eye, and sometimes little organs work much harder than the eye can see. Please don’t discount the gravity of their illness.
5. “You’re so strong.” Thank you. That’s very sweet of you to say, but we’re not that strong. We’re just doing what we have to to help our child survive.
6. “At least you have X normal children. You should be happy about that.” Trust me, we are happy about that, but in absolutely no way does that negate the fact that we love this one just as much and hurt for this one just as much as we would any other of our children.
7. “They’re just a sick kid.” Absolutely not. There is nothing farther from the truth. They have a sickness, but they are not defined by their sickness. They may have a disease, but that disease is just a part of them. They also have personality and spirit and make us giggle and love them every single day.
8. “It’s hard not to notice that he’s sick.” For my son it was all about the tubes and cords and oxygen. When he had less, people told me he finally looked like a “normal baby.” I just wish they would notice that medical equipment doesn’t negate that he still is a normal kid, he’s just a normal kid fighting big battles.
9. “I know what you are going through.” We know you are just trying to empathize, and we thank you for that, but friend, no one knows what exactly going through. Instead of helping, this comment sometimes serves to minimize our struggle.
10. Don’t be silent. Lastly, silence is louder than words misspoken. I can guarantee you that we’ve all heard all of the above at some point in this strange journey, there’s grace for stupid comments, also our brains sometimes are a little foggy from sleepless nights and stress and exhaustion and trying to help our child survive, so honestly, we sometimes just forget. What we don’t forget is silence. Don’t be silent, even when you don’t know what to say, and even when we don’t respond. Just reach out. A quick note. A short text. A sweet comment. Let us know you are thinking of our child. Let us know that you care.
It’s hard to be a friend to a parent of a chronically ill child, but friend, we can’t do it without you.