How to Support Friends Who Have Children With FIRES or Another Chronic Illness

Being a parent can be demanding. From laundry and preparing meals, to playing chauffeur and therapist during a single car ride home, we find ourselves starring in many different roles. We endure sleepless and showerless nights, early mornings, and somehow still manage to keep it together.

But what about those of us who aren’t just parents (who are already superstars in their own right), but parents to chronically ill children? The ones who aren’t simply doing laundry and preparing meals for the family, but are also taking it back and forth to the hospital? The ones who regularly spend sleepless nights checking monitors and medication, and wake up praying that their child made it through the night?

Other relevant stories:
• Can Flashing Lights Cause Seizures Without Epilepsy
• Can Students with Epilepsy Participate in Sports
• Can Epilepsy Cause Memory Loss 

I see you. Because I am one of you.

I see the tears that others don’t. I see you worrying about your child’s future, about your future. I see you wishing you could have a break. Not because you are ungrateful — no, you know how far your child has come and are so very thankful that it isn’t that bad. You just need a break because you are a human being and exhausted. And you know what? That’s OK! You are allowed to need a break. I’d go as far as to say that you highly deserve that break.

On top of being Mom to a chronically ill child, I’m a military wife, which means I literally have no family around to help. When my son was first diagnosed with febrile infection-related epilepsy syndrome (FIRES) (a horrible, horrible epilepsy disorder that unfortunately does not have a positive prognosis), my parents flew out and stayed for a couple of months here and there, and my sister was able to fly out and help as well. But they can’t just hop on a plane every time my son is in the hospital. We’ve had more hospital stays than I can count. Thankfully, I have an amazing church family and great friends who have really gone above and beyond for my family. We had a friend who picked up our younger son from school on a regular basis while my oldest was in the hospital, other friends who cooked for us, some who brought food to the hospital — I could go on and on. All of this was done without me asking, and mostly, without them asking. They knew we needed help, and they just stepped up and did it. At the time I didn’t realize it, but for them to just do those things without asking was huge. I wouldn’t have known what to tell them I needed. I didn’t know what I needed.

Now that we are no longer in crisis mode, I often find friends asking me what they can do to help out. But when they ask, I have so many things going through my mind that I can’t even pinpoint one! It’s like my mind just freezes thinking of all the things that need to be done — how can I pick one that’s appropriate to ask a friend to do? Based on my own experiences, I’ve come up with a list of Dos and Don’ts, a sort of guide, for those who want to support friends with chronically ill children.

Do:

• Learn about the child’s condition. Do research. Ask the parents. In my son’s case, it’s seizures. Ask what they look like. As odd as it may seem, my husband and I actually have videos of our son’s seizures on our phones because we need to time the seizures and then describe them to his neurologist. The most efficient way to capture all of that information is by pulling out our phones.

Do not:

• Try to give medical advice. Unless your child has the same illness, or you are a specialist, to put it frankly, you are wasting my time and yours. Yes, it is great to learn about the child’s condition and do research — but I can guarantee that no matter how much research you’ve done, I’ve done more. That popular diet you’ve heard is helping others — I knew about it before it was a fad. That new medication? Because my child’s illness is more complicated than the “norm,” it won’t do squat for him. After explaining to about 50 well-meaning friends on 50 separate occasions why my child is not on the keto diet, I’ve hit my limit. Don’t push your poor friend to that point.

Do:

• Get to know and love the child. Some seem afraid to become close to chronically ill children. It’s understandable. It’s scary to love someone that is chronically ill. It’s a roller coaster. But I can guarantee you it is worth it and will change your life for the better.

Do not:

• Be standoffish and awkward. Children, whether chronically ill or not, have so much love to give and deserve even more love in return. Don’t make them feel worse about their condition by being weird about it.

Do:

• Offer to take care of the children. If you’ve gone through the first two “dos” and have a good relationship with the parents, then chances are, you are one of the few the parents will actually trust with their child. Thankfully, I have several people I can count on to watch my children. My husband and I have been able to go on date nights knowing that our children were safe, and in good hands if anything were to happen. Don’t limit it to date nights. Maybe your friend just needs a shower or a nap. Maybe she needs to go work out because that is her only stress relief. But offer.

Do not:

• Think your friend is a superhero who never needs a break just because she doesn’t ask for it. Whether it’s date night or quiet time, we always need a break. Our lives are so consumed with taking care of others that often our most important relationships, and our own self-care, goes neglected out of necessity. Also, it’s hard to ask for help. Not because we’re being prideful but because sometimes we just don’t realize we need it or can’t pinpoint what we need. So offer.

Do:

• Realize that if both parents work, their allotted days off will not last them the year. Parents of chronically ill children save their vacation days in case anything happens to their child. If you are blessed enough to have no obligations during the day, offer to take care of the children for the less serious illnesses (for example, the stomach bug or a cold) so parents don’t have to take off work. Instead, they’ll be able to use their days off for the more critical issues that result in hospital stays. This is one of those things I wouldn’t dream of asking anyone who isn’t family but would take in a heartbeat if offered.

Do not:

• Assume your friend has it all figured out. The only reason we “make it look easy” is because we don’t have any other option but to do what is necessary. Either we do our best, or our child goes downhill fast. Some days that may mean that we are rocking this parenting thing, and other days it means we’re barely making it by the skin of our teeth.

Do:

• Occasionally offer to bring/make food for the family. Whether we are in crisis mode or are having an out of the blue easy week, we are still busy and very appreciative of a meal we don’t have to prepare ourselves. We still have 100 things to do. We have doctors appointments, therapies, prescription pickups, and that block of time we specifically set aside to harass the insurance company, on top of normal parenting responsibilities (which we already know are numerous). We are not going to turn down a meal.

Do not:

• Forget about us because we are no longer in crisis mode. We often still feel like we’re drowning.

Do:

• Realize we are exhausted. There are so many events that I just don’t have the energy to attend. Whether it’s a church event or ladies night out, I only have so much I can give. Because I just gave it all to my cute little munchkin. Because that’s what I do.

Do not:

• Stop the invites. As much as I value my alone time these days, sometimes I need human interaction that doesn’t involve talking about my son. It makes me feel like “me” rather than “the lady with the sick kid.” It is important that I don’t lose myself in all of the chaos.

Do:

• Offer encouragement. Let me know you’re praying for my family. Tell me often. It gives me hope and blesses my soul.

Do not:

• Tell me to pray harder. Don’t tell me I don’t have enough faith. Both are insulting and make you look bad. One of the things  I personally hate hearing is “Have faith.” To me, that sounds like you’re assuming I don’t, which isn’t true. With all my family has faced, faith has been the only thing we could stand on. So those who tell me to have faith are showing me how little they know me.

Do:

• Above all, continue being an amazing friend, shoulder to cry on, and a vital part of my girl squad. We are friends for a reason, and I love that you have persevered with me on this journey. I will always need you to just be you.