As the mother of a child who spent many weeks in the hospital, carrying frequent flyer cards in the ER, OR, ICU, NICU, PICU and TICU at Children’s Healthcare of Atlanta, I want to pass along a bit of knowledge for those who are feeling a lack of direction about how to be a good friend/family member/support to someone who is also facing a child’s critical illness.
My son, Hoyte, was born in 2010 two months premature with a host of birth defects, needing emergency surgery and later suffering infections and complications that took us by surprise. We didn’t see any of it coming – our feet were knocked out from under us many times for several years.
Luckily, Hoyte just turned 3, and I am feeling somewhat normal again as he has gained strength through maturity and medical intervention. And so I can write bit by bit about what I wish I had known – and what I wish others had known.
While we were going through the most critical days we had unbelievable amounts of love, support, and prayer from our family and friends, and I have so much gratefulness in my heart for every word of care, every morsel of food and every whisper of prayer that helped my baby – and us – survive a times when the odds were against him.
But as the weeks and years went by, part of our journey was walking through the road of changing friendships. We encountered severe ups and downs for 2 straight years it seemed, and had some people close to us not really know how to respond. Fact is, we struggled, like so many of you have, with the lack of understanding with those who had never walked a similar road to us. Fact is, I know that no one really meant to hurt us, but hurt inevitably happened, leaving us feeling quite isolated at times.
As a result, we learned to turn mostly to each other and that very small number of close friends who could truly relate to what we were going through – and those are our closest friends to this day. In hindsight, I wish that I had been more honest, and so that is what I am offering you today.
Perhaps I can help someone out there navigate through this very unfamiliar road by offering some suggestions of helpful ways to relate to help parents who are facing scary days. I am sure these are not absolute, but they are my experience, and I pray that they do some good for those who need it.
DOs and DON’Ts of Helping Parents Who Have a Critically Ill Child in the Hospital
1. Don’t stop calling because you feel like you are bothering them.
DO check in when you think about them and let them know you are there.
I had a lot of friends stop calling me because they did not want to bother me (very loving, in hindsight), but at the time, it left me feeling very forgotten, wondering where my friends were and why they weren’t checking in. Remember, the parents are very sleep deprived, scared and sitting in silence in the hospital room often – they can’t talk much, but when they want to, it is a gift to be there.
2. Don’t continue to forget the name of the diagnosis.
DO remember the major diagnosis you were told and look it up.
Ask for the spelling of the diagnosis(es) so that you might take a moment to look it up – write it down and care enough to support through being informed. You don’t have to speak the medical language as well as they can (you can’t), but by understanding the main issues, you are giving them a loving gift.
3. Don’t forget a major surgery or test.
DO put the date on your calendar and send a message that morning that you are praying for them and their child all day.
This will mean the world. They will not be bothered … but blessed by your words, even if they don’t have time to respond as they wait. Chances are though, you will get a grateful response. This was especially true for anyone who was awake early on surgery days and sent me a text as we waited for them to take Hoyte away. I felt so loved by them.
4. Don’t ignore them because you are scared of the illness or don’t know what to say.
DO have the courage to check in and still be present even if it means you might hear some emotion on the other end.
People often don’t contact someone who is facing critical situations because they don’t feel like they know what to say – totally normal. But please do, even if it is just to say that you feel like you might not say the right thing because you are hurting for them so much.
5. Don’t tell them at any point that they seemed needy during their ordeal.
DO continue to be available when you can without creating guilt out of their needing support.
No one wants to be overly needy, and the one time I was told this still rings pain in my heart.
6. Don’t believe that they really don’t need anything at all.
DO pray and just drop a tray of sandwiches off while they are at the hospital.
The majority of people have a very hard time asking for what they need, and knowing that you are praying and that they have something to eat at night can help them get through the day.
7. Don’t overstay your welcome by insisting on a sit-down visit if you drop something off.
DO bring food or supplies by but understand that they might not have the energy to entertain you … unless they are clear that they need to talk. DO encourage them to leave a cooler outside their door so that meals can be left there if need be.
Their schedule revolves around spending time at the hospital and tending to domestic needs, showers, meals and other children, so just stay aware that they have a lot to get done while they are home. On the other hand, if you are close and your friend insists that having you nearby (or helping with laundry, dishes, feeding kids …) would be a comfort, then by all means, STAY as long as you can.
8. Don’t get your feelings hurt and punish them if they cannot answer their phone for days at a time, spend time talking or be available to you during their crisis.
DO know that things will eventually get back to normal, but for now they need to reserve their energy for their child and this crisis.
Understand that this does not reflect how much they love you, they are just doing the best they can to stay afloat and only have time to nap or shower between hospital visits.
9. Don’t forget to respond to emails/texts/posts if you have a second to do so.
DO send a short response to messages letting them know that they are heard and supported.
While they may not have the time for one-on-one conversations in waking hours, they will likely find great comfort in the middle of the night as they lie awake in the hospital room listening to the machines beep, checking Facebook messages and emails, being reminded that they are not alone (because they feel like it).
10. Don’t simplify or dismiss their child’s medical condition by saying things like “At least you have other children who are healthy …”
DO validate the seriousness of the present crisis by listening, saying you care, confirming that they are facing something very difficult, and that you are praying for them to have strength and faith to face what is ahead.
Talk about the preciousness of the child and how much you care about his or her life and health. Speak what is on your heart, like you don’t understand how they could be facing so much and don’t jump over the crisis by dismissing the emotion involved. If you can’t handle it, then just listen without interrupting, and say “I am so sorry you are going through this – it just isn’t fair – but I am praying for healing and am here for you.”
11. Don’t act like you can relate to the seriousness of the medical complication if you have not indeed experienced something similar.
DO acknowledge that you are trying to understand all that they are going through and are there to support them.
I actually had a Mother tell me when I stopped by a baby store that she could relate to what I was going through with my baby in the hospital facing critical surgeries by telling me “I understand how it is, my daughter just had the worst diaper rash, and I didn’t know what to do! It is SO hard!” I would never do it, but I wanted to say so many times, “NO, No, no, you really and truly do not understand.”
12. Don’t tell your friends all of the details about your fabulous week at the beach while they are in the hospital with their baby.
DO encourage them to do something ‘normal’ when their child stabilizes and offer to watch the children or join them for dinner when they have the energy.
Of course, don’t lie about your life or hide your activities, just don’t make it all about you unless they express that this will help them ‘escape for a moment.’ Most hours, they are struggling with not having the energy to be a friend like they used to and are battling so much confusion , feeling isolated, and missing out on life outside of the ICU.
13. Don’t show up with a lot of junk food at the hospital or home.
DO remind them how much you love them and how much you hope they are staying healthy with so little sleep by offering healthy meals or snacks.
They can grab junk food out of the vending machine, and I cannot tell you how good it felt for us to enjoy natural, healthy meals (sorry, but casseroles don’t really count) that helped my body feel cleaner & healthier while I survived on so little sleep and self-care. A tray of healthy sandwiches and cut up fruit were lifesavers.
14. Don’t make fun of them for asking you to wash your hands, stay away from them if you have a cold or keep sniffling children far from the hospital/their house.
DO understand that a cold in you or unknown virus on your hands might mean a catastrophic infection for their fragile child.
It hurt me greatly when people rolled their eyes when I offered sanitizer or soap when they walked in the house – even though there was a bold sign to “WASH YOUR HANDS” on the door. Our child is still medically fragile during viral season, and I have had to educate friends of the seriousness of a simple cold virus in them, which usually leads to pneumonia in my little one.
15. Don’t forget to ask the parents how THEY are doing themselves.
DO follow your “How’s our boy/girl?” question with, “And how are YOU?” And then wait for the truth after they say, “I’m fine ….”
People often forget to check in on their closest friends and try to understand all of the struggles that they are facing, and a good friend can make all of the difference when a parent is facing exhaustion, guilt, confusion, anger, and most of all … FEAR. Be there for your friend just like you were before, and again, please do not be afraid of their emotion – they need to know that they matter.
I hope that these tips have helped you if you are looking for guidance.
And if you are a parent facing these issues, I encourage you to post this link on your Facebook / Twitter page or pass the link along with a message saying, “This Mom says all of the things that I haven’t thought of yet.”
And PLEASE leave a COMMENT below if you have any pointers to add from your own experience. Your stories matter and your input will help others.
God bless you all.
