Tactical Guide for Civilians on the Home front
So, your daughter/sister/best friend just found out her baby, this child she was over the moon to be expecting, will be born dying. Yep, that’s heavy. You hurt. You hurt to see your loved one in such pain, and you hurt for this child who was going to be part of your life. You hurt in all kinds of ways but you cannot hurt as much as she does.
I know you’re close friends, but for the next few years you’ll be on the “outside” with a lot of this because your friend truly is in a state of grief. It’s not personal. She has to go inside herself to survive something this harsh. You have to give her time to process and figure it out, but stay on standby – many a friend has been lost to parents in this situation because it was too much for everyone to endure.
First: Just listen to her (or him if it’s the dad) about whatever she wants to say, and don’t tell her it’s all going to be OK. Telling us that it’s going to all be fine really makes us mad because it’s not fine, and it’s never going to be fine, it’s essentially either your baby has his chest ripped open 2-3 times or he dies, or both – it’s a lose/lose/lose situation, and playing it down really doesn’t help. Downplay is about the worse thing people can do to us, so don’t do that.
Second: Acknowledge that you don’t know what she’s going through – own that. A lot of people try to compare what they’ve been through to that, and short of your child having a near or full death experience there is no comparison. I once blew up at a lady comparing her college aged daughter getting her wisdom teeth out to what it’s like for a child to have a debilitating chronic condition – it’s not the same.
So, tell her that while you can’t understand how hard it is, you know it’s amazingly overwhelming and that you’re here for her no matter how hard it gets or what happens. Don’t try to understand how much it hurts, just know that it does and try to help her by responding to her cues. Another similar thing is for people to say, “People die every day,” “Any of us could be hit by a bus, you can’t live in fear all of the time,” kind of crap—the randomness of lightening is not an accurate comparison to the 5-20% mortality rate for newborn babies having certain neonatal open heart surgeries. To marginalize her experience or her fear as something unfounded is insulting. I’m sure you wouldn’t do that, but some people don’t know what to say, so they say stupid things. When in doubt, just shut up and give her a hug!
Third: Don’t leave it up to her to tell you how to help, think of your own ideas and see if that would help. So many people tell us, “If you need anything don’t hesitate to ask,” but I never knew what to ask for until after. Asking your friend to figure out what she needs is simply giving her a chore and that doesn’t help anyone. Here are some things you can do for her:
- Ask her if she still wants to have a baby shower and if she does have one that is positive and beautiful – make her know this baby is welcome and wanted by everyone and has his/her own cheering section from day t-10 and into infinity. Let her know that all of her family and friends are behind her hope will bolster her fighting spirit. If she doesn’t want to have the shower (some people don’t) offer to do it when the baby is home and better no matter how long that take. Remind her that her baby will be a cause for extra celebration because he/she is a champion.
- Buy her a nice journal to keep notes and information in during the baby’s treatment – something with pockets and dividers where she can keep notes and keep track of what’s happening.
- Get her a hospital care kit with a disposable camera, nursing pads, a good book or magazines, some nice lotion, just to let her know you know she’s going somewhere difficult and while you can’t be with her for the entire lonely and difficult journey, you’re behind her all the way. Also, SNAP-FRONT baby clothes that don’t have to go over the head are great gifts because heart babies are hard to dress, and those little gifts make long hospital stays a little nicer because you can actually put some real clothes on your baby. A boppy pillow is good for under your arm when you hold the baby in the hospital for a long time. Sometimes we don’t get to hold our babies for whole weeks and when we can it’s a battle with cords and tubes, so we hold them for a very very long time. See if you can find a plastic cover to keep it sterile. Thinking of her comfort is a great kindness.
- Don’t send flowers when the baby is born, they can’t be in the NICU and they are often thrown out in the chaos of treating a heart baby, but DO send flowers and balloons to celebrate coming home from the hospital. Get your other friends to participate. Ehen we FINALLY brought our son home from CA after one month (we live in CO and he had been airlifted) there were no flowers, no cards, nothing to celebrate a new baby. We only had get-well wishes and prayers that reminded us Liam nearly died, not the tokens most new parents receive to celebrate life. Whatever special things you got for your own healthy baby, make sure your friend doesn’t miss out because she’s already missing out on so much.
Fourth: Give her space, call and check on her, don’t forget her, but don’t push. If she doesn’t want to talk about it, don’t make her. If she does, do NOT change the subject; just let her know you’re open. The conversations will be hard because she’s working through “why me.” Some people never get past that question and it really ruins their lives, let her work through it. Being stilted will limit her enjoyment of her child and make it harder for her to fight any postpartum depression.
Stand up for her, if someone else says something inappropriate, call her on it. Share this advice with other friends, help her enforce hand washing and no smoking and any other limits necessary for the baby’s health. You really will have to walk on eggshells for a while because your friend will be wounded and in pain, and slights or comments made right now will stick with her a lot longer than they would under normal conditions. We don’t mean to by hypersensitive or thin skinned, but the minute you hear your child will be born fighting for his life, you go into survival mode, and having a friend like you who is sensitive and wants to do the right thing will really help her get through it.
Things to Do You’ll say things like, “Anything you need, just ask,” but she won’t ask. She is catatonic, and she is broken. You want to help her but you don’t know how. So, here is my advice to you, the good friend who isn’t running to the hills when the shit goes down. You are good people, and you deserve good advice:
- Check the Supply List in the field guide and make her a basket.
- Find someone to befriend her husband. He needs support just as much as she does, and he needs someone to listen without judgment. Help her help him.
- Refer to the end of the Never Better, or It’s Complicated chapter for the right things to say.
- Let the couple decide if they still want a baby shower or not. I wanted mine because I needed it. To me it was a testament of faith in Liam’s life by all the people in our lives. Don’t assume they won’t want to do it, but make sure they still do before anything proceeds.
- Don’t disappear, even if she’s unbearable, know that she’s grieving and not in her right mind. Know that what seems like her being selfish is merely her self-preservation.
- Pick up the slack, if she needs help with older kids, help with errands, or if you’re a coworker and she just needs a little help getting ready to go on leave, step up and step in to help. And don’t expect glory or credit for it; just do it because it’s the right thing to do and you’d want someone to do the same for you.
- Don’t tell her everything is going to be all right – you don’t know that. Tell her you pray for her child, her strength, her future, but don’t make bold or blind assurances. The odds may be in her favor, but eight thousand CHD babies die in the USA each year, there’s no way for you to know who will make it and who won’t.
- Don’t tell her how strong she is, because she doesn’t want to have to be this strong.
- Support her decisions and listen to her closely so you can give her support when she questions herself later.
- Rally the troops. Get your friends together to pamper her, spoil her, or just do some little nice thing. Organize meals, or organize silence. Organize a group to walk at a CHD walk in their honor or bring meals to the Ronald McDonald House for them and their new friends.
- Be a bully, not to her, but to her one ridiculous relative, or annoying former friends. Keep people away if she wants you to, but take your lead from her. Run interference so she doesn’t have to, and feel free to call the entourage on whatever rude comment they’ve made.
Things To Say When I started writing this book, all my Heart Mom friends said, “Make sure you put a list of all the stupid shit people say in it.” I did in the first draft and then my good friend, who is not a Heart Mom, read that draft and asked, “But, what can we say?”
It’s a fair question. People outside of this do-or-die, submit your kid to butchery and torment or watch them whither to death situation don’t know what to say. Sometimes they’re trying to be supportive but it doesn’t translate. So here are some things you can say and do that shouldn’t hurt.
Disclaimer: There are some people who are so sensitive that you can’t possibly ever do anything right, so just give them a hug and be quiet. For the rest of us, here’s your list:
- I’m sorry this happened to your family, but I’m glad you have medical options to help you.
- Can we bring you some fresh fruit in the hospital?
- Do you need your sidewalks shoveled/lawn mowed when you’re in the hospital? (or don’t even ask, just do it)
- Can I take your other kids to the zoo/museum/park/etc. so they can have some fun?
- Can I come sit with your heart kid and read him a story so you can take a nap or a shower? (or go cry in private . . . this is really important, don’t go expecting to visit the sleep-deprived parents and think you’re going to get conversation, if they want to stay and visit, give them that option without expectation).
- Hey, I was going to get a rotisserie chicken on the way home, want me to bring you one too? (You can only eat so much hospital cafeteria food before you feel like you should to be admitted yourself)
- I know you’re really afraid and that you have really good reasons for your fear. I’m not trying to take that away from you, I just want you to know I’m here and I will listen.
- Do you need a hug?
- Do you like soduku? Crosswords? What kind of junk magazines would you like to have with you in the hospital?
- Wow, people sent you a lot of stuff for your kid! Would you like me to take some of it to your house for you so you don’t have to worry about all of it? I’ll even write thank you cards for you!
- I was at the store and saw these cute blank notes, so I got them for you and some stamps in case you need to be able to send anything out while you’re stuck here.
- Guess what, I picked up your mail and here are all of your bills, and I grabbed your checkbook too! (Seriously, this is helpful because these folks are sitting in the hospital worrying about what they can’t get done at home).
- I know it’s a private thing, but just so you know, if you need help with all this time off work and the medical bills, let me know and I’ll see if I can get my church, HOA, school, fraternal org, etc. to do a bakesale/garagesale/silent auction/ etc. to help you guys out. No pressure, just know we’re here if you need us and people want to help.
- Would you like me to stop by your house and get you some more clothes so you don’t have to worry about doing so much laundry while you’re here?
- What’s your favorite kind of gum?
- Did you forget anything (dental floss, etc.) that I could run out and get for you? Or better yet, let me run you over to the store real quick so you can get a break.
- Want to take a walk?
- Wow, your baby has been through so much, but he still has such a great attitude, smile, laugh – whatever, (just don’t focus on how he looks – we all know he doesn’t look good so don’t say that).
- When you get home and settled back in, let me bring you a Starbucks. (or just keep on bringing the lattes)
- We all really care about you and we know this is harder than we can ever really know.
- Do you need a hug? (repetition on purpose).
- Wow, I can totally understand why you can’t let people smoke around your baby and are so sensitive to viruses with his compromised lungs and all. I didn’t realize before that these heart problems also affected the lungs so much.
- Of course I will wash my hands, in fact I brought you this great smelling new soap and lotion set! Let’s share!
- I realize that this is a life-long problem and you’re going to have ups and downs. Please know that we like to know your ups as well as support you in your downs because we’re with you for the whole ride.
Notice: I never once thought to ask, “What can I do for you?” because that’s like a pop quiz. They don’t know, so don’t make your suffering friend work to make you feel better. You do the heavy mental lifting and figure it out.
The only big no-no that cannot be excused as foot in mouth, or misplaced concern is this: Unless she is the mother of your child or your own mother, never, ever, ever tell the mother of a child who is near to death how hard this is emotionally on you. You don’t get to do that, I forbid it. No matter how hard it is for you to see a child like that, unless it’s your child, zip it, lock it, and put it in your pocket. We’ll forgive you for just about anything else