What NOT to say:
I hope everyone living life has a support system. Everyone deserves to know they are loved, cared about, and wanted. When facing difficulty or uncertainty in life, that is when that support system becomes vital. My wish is that everyone we meet on this journey has a huge tribe taking care of them and supporting them along this path. Mostly I was surrounded by love and grace, however, from time to time the things that would come out of people’s mouths were astonishing.
Why is it that the harsh things people say or do stick with us much more than all the amazing, supportive things they do? Remember the golden rule: If you can’t say anything nice, don’t say anything at all. We would all be better human beings if we followed this.
“Kind words can be short and easy to speak, but their echoes are truly endless.”-Mother Teresa
If you know someone who has lost a child or has a child who was diagnosed with a life changing diagnosis or suffered a catastrophic accident here are some things that you can do and more specifically NOT do or say to help them along this journey.
First, put yourself into their shoes. If you can’t even fathom their situation, be incredibly careful with your words. Sometimes there are no words and that’s ok. A simple arm squeeze, a hug, just saying I am so sorry, goes a really long way.
Do not try to bring the positive side to light because there isn’t one, at least not yet and it’s never your job to point it out-ever. For instance “At least you can have other kids, or at least you have your other healthy kids.” “At least they didn’t die.” “Well, at least he’s cute.” Yes, these were all said.
Never say, “they weren’t meant to be”. “Everything happens for a reason”. “God doesn’t give you more than you can handle”…bullshit. “I couldn’t even imagine”. Neither could they until it happened. “You are so strong you can handle this”. They are strong and they can handle this but sometimes they don’t want to be strong, or they want to feel sorry for themselves because what choice do they have… they have to deal with it.
“Be grateful for the kids you do have”…. How do you think this poor parent gets out of bed everyday- it sure isn’t to seize the day, its because of those other kids.
Parents do not need to be reminded of what they have because let me tell ya, they know. They know how fragile life is and if they just lost a child, they are probably scared shitless of losing another. I wouldn’t give my mom my older son’s car seat when she watched him because I didn’t want anyone driving him. I was terrified of my world falling further apart.
One thing I suggest saying is “I know you’re trying to be helpful, but can I tell you why it’s not?” This way you are educating along with putting an end to the conversation.
Do your best to avoid complaining about your perfectly healthy child to someone who just lost theirs. Parenting is hands down the most difficult job on the planet and I am happy the world is starting to respect that but know your audience.
Don’t complain about pregnancy. Bringing home a new baby is a huge adjustment and it’s hard but coming home empty handed or having to give one back is harder. Don’t complain about how wildly active your kid is to someone who would love for their wheelchair bound child to get a little crazy and jump all over the couch even if it is pure chaos.
Your thoughtless complaint might be someone else’s biggest dream.
Let them grieve however they want, listen to them without trying to fix it. Check in on them often and invite them to things. Understand if they don’t respond or join in but KEEP asking. They are in fight or flight and trying to process things.
Everyone gives meals, which is helpful, but maybe do a gift card instead so when the meals stop- and they will- they can still get dinner.
Send a card or flowers on their baby’s birthday. SAY their baby’s NAME. Often people think if they bring up a baby that has passed away it will make a parent sad, the parent is always thinking of that baby and hearing someone else remember them is a beautiful thing. Ask how the baby is doing if they are medical complex and really listen. Let them say it how it is and sometimes it’s really freaking hard and don’t for a second dare to judge them for wanting to just give up sometimes, they won’t and probably already have guilt for these normal, valid, feelings.
One thing that got to me was when people would say “while I was there he was calm and didn’t cry that much.” Brady cried 97% of the time, we don’t know why. I know they didn’t mean this harsh but are you trying to make me feel worse when I already feel like a failure? Do you think you can do better? Do you not realize that life still happens, there are other kids to be taken care of, pets and a house to take care of and I don’t have the time to sit or stand holding a paci into his mouth 24/7? Reverse the roles before you say something, is it really helpful?
At Brady’s celebration of life someone had the balls to say “Kind of a blessing, eh?” This person never even met Brady. I started off this night stuck on a couch in front of the window just watching people walk to the door. I couldn’t move and this is the comment that stuck with me most from that night. Ouch. The room was packed, PACKED and you could truly feel the love, but I don’t remember one good thing someone said. Our minds are real a holes sometimes.
I have since realized that this man is just an idiot. He was probably in his 60’s or even 70’s when he said this so chances of him changing are slim to none but maybe. Since he felt to entitled to an opinion about Brady, maybe he reads this.
Most medical professionals are wonderful and want to help, however a few need a lesson on manners, and others should lose their job.
During our first visit to Children’s Hospital of Wisconsin where we found out about Brady’s complex issues, we had a medical doctor who specializes in genetics say to us “You can choose to skip the feeding tube to make the process go faster.” What the literal F*ck. Two or three days prior we thought we had a colicky baby and now we were supposed to help him die faster??
This was so shocking to me I actually forgot about it until I took a trip down memory lane messaging with a mom who recently lost her son who had some of the same issues as our Brady.
She was a female genetics doctor at Childrens WI.
These scientific doctors look at our babies like an experiment and it’s awful. To them it’s work, to us this is our child, our baby we wished for, longed for, had huge hopes and dream for and it all comes crashing down in a second. Imagine that. We don’t just lose the day they pass we lose the first smile, the first day of school, the first mama or dada, the first tooth they lose, prom, weddings, grandchildren. EVERYTHING changes in an instant.
Families who learn about complex neurological complications potentially lose the first step, the first smile, the entire life they planned for this baby. They must relearn how to think about everything and yet they are expected to be grateful. Expected to be hopeful because nobody can say for sure exactly how neurological complications will impact their baby down the road but also receive devastating news constantly. One sentence telling parents their baby probably won’t live to next week the next sentence telling them to schedule an appointment with their pediatrician. Where’s the logic? I imagine it takes some time, a lot of time to learn how to process this. Brady’s news wrecked me. He lived for 166 days, and I was still as wrecked on the last day as I was on the first. Some days were better than others, but it would have taken me a loooong time to find stability in that life, had he lived. Give them time to process while showing how much you love and support them.
A doctor at John Hopkins Children’s hospital in St. Petersburg FL said “We don’t need to look at the EEG results from Cincinnati Childrens. She’s probably autistic or OCD and engaging in ritualistic activities.” This was said to parents of a precious 7-month-old after it was confirmed by a hospital that specializes in her disorder that she was having seizures. The doctor at John Hopkin’s left her seizing and walked away. Do better medical professionals.
Sweet Emmy
Look at that baby, how could anyone be so cruel and not even believe what they are doing is wrong.
“Seizure control for her isn’t an option. Just accept she’ll never have seizure control and she’ll likely be retarded or have cognitive delays. I’d be happy to hook her up to another EEG to prove it to you.”- St. Joseph’s Children’s Hospital, Tampa FL. I am disgusted by this. Shame on you. How are we supposed to have faith in these “professionals” when they speak this way. This little lady has had seizure control since January because her super mama found a team that wouldn’t give up on her baby.
Visit the BWF babies page to see Emmy’s story.
If you know someone who just lost a baby or got difficult news about their child be sensitive in telling them you’re expecting. Call or let them know privately instead of them finding out in a group setting or worse on social media. Don’t post pregnancy announcements on holidays. This seems like such an innocent thing, but it can ruin someone’s day so quickly. Ruin a random Tuesday or Friday but not a holiday. If you’re sensitive, like I still am from time to time, to these things avoid social media on holidays. People aren’t trying to purposely hurt us even though it sure feels like it. We must protect ourselves from the world because we can’t expect the world to protect us. People don’t get it unless they go through it, and I wouldn’t wish that on anyone. That’s why there is such an instant bond between loss mama’s and mama’s who have medical complex children.
I am sure I have said things in my past that have offended someone, I am human. We make mistakes. I’m not writing this to make anyone feel bad, I am writing it to help people do better.
“Do the best you can until you know better. Then when you know better, do better.”-Maya Angelou
Together, we can spark a string of light that can move across the world.
Let’s spread love and kindness.
Your family, friends, co-worker didn’t choose this life. They are adjusting and they deserve time and space to process. Be there for them. Love on them. Spoil them. They might act out, they might say hurtful things because they are hurting so much. Let it go and keep on loving them. Eventually they will emerge. They will be different but in the most beautiful way and if you’re lucky, you’ll get to know this amazing new person. Just by reading this you are stepping up for them, learning how you can show support. That says everything.
Remember you are loved, you are worthy of everything you desire, and you are enough just the way you are.
With love,
Mandy (Brady’s mama)