We’ve all been in that situation. Someone we know is struggling and we want to help, we want to make an impact, we want to say, do, give the right thing. I’ve been on the receiving end of that…more than once. The stillbirth of one baby, another being diagnosed with cancer…when things like that happen, so much is taken away. Dreams, plans, security, certainty…
We’ve been beyond blessed with an amazing support system who has given us so much in so many ways. But sometimes, what people think is helpful, actually…isn’t. Even the most well-meaning, well-intentioned, heartfelt words or actions aren’t always very helpful. And sometimes, I hate to say it, they may even be hurtful. And NO ONE wants to be hurtful. As someone who’s also been on the giving end as well… and who now knows that I’ve definitely been guilty of not only NOT helping but perhaps being hurtful…I wish I would have had some advice to help guide me. And in fact, I’ve had people ask me point blank for advice on this subject…”what did you find most helpful”.
I hesitated to write this as I don’t want anyone to tip toe around me…or anyone else. I truly hate that. Please know this is NOT meant to scold or disrespect anyone’s intentions. Every parent I’ve ever met genuinely does realize that it’s all done in love.
So here it is…the start of it anyway…my guide for What to Give When So Much has been Taken Away.
Let’s start today with What to Say…and perhaps more importantly, What NOT to Say. (I’ll follow up with What to Do and What to Give in the coming weeks.)
Here we go…
~ What NOT to Say ~
I know it can be hard to think of the “right words”. You don’t want to accidentally offend or make things worse. Maybe it makes you too sad or uncomfortable to discuss. You’re concerned that what you do have to say is inadequate. You figure you’re not good at knowing what to say and that there are plenty of others who will do a better job. So you retreat and say nothing. Who can blame you? I’ve made my peace in my heart with those people…honestly, I have. I really DON’T blame you. But…I did notice. And I’d be a liar if I said it didn’t hurt on some level. (I hate liars.) So…my best advice when you don’t know what to say. Say, “I don’t know what to say”. We get that…we know that…we just appreciate that you reached out.
“How Can I Help?”
There may be some out there who find this question helpful or comforting but to me, it was awful. Not that I would have expected ANYONE to know that…I truly did appreciate the offer, because I know that’s what they were trying to do…offer something. But the thing is, it wasn’t an offer for anything specific…it was a question that required me to think, which I didn’t have the brain power for. Furthermore, it required me ask for something, which was not my comfort level at.all. So I’d end up saying “anything is helpful”, which didn’t serve either of us well.
You want to try and relate. And if you don’t personally (thank God), it’s normal to try and still make some connection. As in, “I know someone who…”. Many of those stories were ok, like the ones where there was a positive outcome, or when it resulted in a connection with another cancer momma, organization or other source of helpful information. But some, I realize unknowingly, were NOT helpful. Because some ended with “he didn’t make it”. Ugh…talk about a way to make my stomach tie up in knots. I get it, it’s reality. But it’s not a reality that any of us cancer parents need a reminder of. It’s lurking inside all.the.time. Functioning at ALL means we need to force ourselves to keep it there…inside…and acknowledge it in our own way and when we’re ready to do so. For me that means with my husband, sisters and parents, closest friends, medical professionals, counselor…on.my.time…when.I.want.to.
“Everything happens for a reason” or “God doesn’t give you more than you can handle”
Ohhhhhhhhhhh boy. This is a tough one to take. And a phrase that I’m guilty of saying a LOT in my “former life”. But dealing with the things we have, I’ve come to have a VERY different perspective on this. While I DO believe wholeheartedly that amazing, positive, blessings can come out of any situation…I DON’T, WON’T, CAN’T believe that my God took my baby or gave my baby cancer for a reason. In addition, the whole “He doesn’t give you more than you can handle thing”…it’s not biblical. It’s a misquoted verse that’s become accepted by many as true. God never promises that. What He DOES say in the Gospel of Matthew is:
Matthew 11:28–30 • “Come to me, all you who are struggling hard and carrying heavy loads, and I will give you rest. Put on my yoke, and learn from me. I’m gentle and humble. And you will find rest for yourselves. My yoke is easy to bear, and my burden is light.”
Most who truly dig into this find it to mean that you WILL have trouble, perhaps more than you can bear by yourself. That leaning on and trusting in and learning from God is how to truly find rest. For me, that’s been incredibly true. One of my wonderful friends summed it up like this…”We live in an imperfect world where shit happens…God’s there to help you through it.” Love her.
~ What TO Say ~
“How is everyone doing?”
I love that people want to know about Dani. Even in her final stages of treatment. People care. And that’s so great. But know what I’ve loved even more? When people ask about the rest of us too. Because this childhood cancer thing affects the whole family…in major ways. We’ve had some big-time ups and downs but feel blessed that we’ve been able to navigate it pretty well. It’s actually brought us closer in many ways, forced us to re-focus our priorities on what’s really important, helped us grow in our faith, introduced us to so many beautiful people, opened up lots of doors of opportunity, helped us learn to choose joy…there really are some amazing blessings that have come our way. But it’s still hard…mostly on Dani, of course…but for all of us in different ways. The fact that people recognize that this is a family affair really touches my heart.
“I’ll Pray for You”
THIS was huge for us. Prayer is such a big part of our lives and I wanted to know that others were lifting us in prayer as well. But…I caution you in saying this to someone who doesn’t pray…someone you know isn’t a believer. Because you know what it comes off as? A hint…a nudge…like there’s something inside of you thinking “maybe THIS will make them a believer”. Even of that’s NOT what you’re intending. I’ve heard that from so many…and truly…it’s not helpful. They’re up against enough. And while I personally can’t wrap my head around getting through this without prayer and believing in God’s promises…that’s just not where some people are…I feel strongly about respecting that. YOU may feel good about it because it’s what YOU believe…and I get that, being true to who you are and honoring God by offering prayer. But honestly, if your goal is to help and make them feel better in a tough time, that comes so much more than just in what you say. BE an example. SHOW them what it means to be His hands and feet. Lip service is just that. So if you know they pray, if you know they find comfort in knowing others are praying for them, great…tell them you’re praying and then ACTUALLY DO IT.
“I’m going to do this, is that OK?”
Instead of giving them an open ended question like “how can I help”, I found it much more helpful when they said “I was thinking of doing this…would that be helpful?” Or at least give some ideas. “I was thinking of doing this, this, or this…what would be the most helpful for you and your family?” (I’ll be sharing some What To Do’s next week). This was so much easier for my weak brain to navigate and chances are really good that you’ll end up doing something that truly IS helpful rather than something that just FEELS helpful.
Suggestions for Treatment
I know many cancer parents LOATHE this and find it very offensive…so beware…and be respectful of that. It’s hard enough to be a cancer parent…your brain swimming with information on treatment (which you MUST follow by law) and then all sorts of alternative, holistic, complimentary, therapies as well. And that’s a crazy big ocean…all that complimentary stuff. And some of it…total crap. But in the beginning, when things were so new, and I was so numb, and so desperate, and sooooooo just wanting to help my daughter…I didn’t know what I didn’t know. And if it’s outside of conventional treatment, our oncologist CAN’T bring it up. So I was open to suggestions, ideas, what’s worked for others. Without that, I would have no knowledge about what’s out there, what to bring up with our oncologist, and how to help her outside of the standard protocol. I WANTED to know and WANTED to research. That knowledge has led to an amazing relationship with our medical team…in fact they say they’ve even learned a thing or two from what we’re doing to keep Dani so healthy and strong…our onc says I should share what I know with other parents and admits he’s not trained in “this stuff”. 🙂 It’s also led to my work with KICKcancER, one of those doors of opportunity I mentioned before.
Again…my goal is not to offend anyone or make you question everything you’ve ever said…or given…or done. PLEASE know that. And honestly, this is just my perspective. It’s not all-knowing, all-encompassing, or true for everyone. It’s a beginning point. A conversation starter. Some things to consider when you’re truly trying to help someone in what seems like an un-help-able situation. We know you love us, we know you mean well…THANK YOU!
…To Be Continued…