I found the below list on a friend's blog, and found it to be appropriate, helpful, and
so painfully true.
To have a child with cancer:
I know it is difficult on all of our friends and coworkers wondering what to say. It’s
ok to wonder what it would be like if this happened to your child; this is the only way
you will know how we are feeling. Please don’t tell us what we should or shouldn’t have
done or what foods our child should eat. A simple “I’m sorry” or “we’re praying for you all”
is probably the best thing one can say.
Please don’t ignore us or think that there are support groups locally that will help us.
The truth of the matter is, there are very few people locally that have been thru this so
to rely on support groups alone would leave us alone. The people that we’ve met
that shared a similar journey -we thank you for sharing your story and being
there for us. Oh there are great groups on the web but that is not the same as
being with a person and sharing feelings. It is not the same as venting to a friend.
Again, thank you to everyone that has been there for us no matter what you
said (lol). Without each and every one of you we would not have made it this far.
Over they past year I have created a list of Not to Say and Do Say that hopefully
will be helpful to people in the future. Gosh, I wouldn’t have known what to say if I
hadn’t already been given this horrible nightmare but here is what I feel: (please do
not feel offended if you were the one that said anything that we didn’t find helpful).
Please do not be offended by any of this but I’m hoping it will help other families in the
DON’T SAY (a list of do nots)
- I’d check out if it was me
- I don’t know how you do it - (this one I hate and so many say it; like we have a choice?)
- Do you have other children?
- Don’t tell us about your grandparents, uncle, parents or even spouse who had cancer -
( it is so different when it is YOUR child)
- Can he/she see out of that eye?
- Did you get a second opinion?
- Don’t talk about your child’s minor illnesses right now because we can’t relate; unless it
is a brain tumor or another life threatening illness we consider you lucky
- Don’t tell me it might have been the fertilizer we put on our lawn, the chemicals we inhaled
while pregnant or the vaccine we gave our child
- Don’t tell us this can be cured by thinking positively even if that is what you believe
- Don’t tell us to switch religions
- Don’t tell us it is the devil
- Don’t ask how long they give him/her?
- Don’t forget about the siblings of these ill children, be kind to them for they are going thru
a tough time as well!
AFTER the Child flies to Heaven:
- Know that you do not have to have the right words to say to us, there are no right
words. Just your presence in our life is great and maybe a hug.
- Call and send cards. Knowing someone cares helps.
- Don’t tell us we will heal. This is not a cut. It is more like losing a leg and eventually
you may learn to live without it. Don’t think we can move one and put this behind us.
The grief of a child is a long process and very difficult and is different for everyone.
- Don’t tell us we are strong. Ah, you have no idea how weak we are but what would
you do in this situation.
- Know that we need you for a long long time along with your support and understanding.
- Know that we have very little energy for anything other than “working thru our
grief.” It is very tiring.
- Cry with us if you feel like it. I like a good cry and I love to talk about our angel child.
- Know our ability to concentrate on things is very difficult.
- Don’t say I know just how you feel unless you have lost a child.
- Don’t say how many children do you have?
- Don’t say you’ll be fine.
- Don’t rush us thru our grief
- Don’t pull away from us because you don’t know what to say or how to act. This
makes us feel lonely. We don’t have anything that you can “catch”, we have a
broken heart and can use your support right now.
- Know that one day when we are able to better cope, we will thank you for being there.
- My prayers are with you
- If there is anything at all I can do please don’t hesitate to call me (if you really
mean it of course)
- Call me anytime
- May I babysit sometime for you so you and your husband/wife can get out?
- May I bring a meal over?
- May I add him/her to the prayer list at my church?
- You are showing him/her so much love; you are great parents to him/her
- He/She is an angel
- You WILL get thru this and I will be there to help you (probably the most
important thing to say if you can do this and really mean it)
- I will be your rock
- Love him/her Love him/her Love him/her
- Enjoy every minute
- Whatever decision you make is the right one
- Can I do some research for you?
- Can I make some phone calls for you?
- Can I address Thank You’s for you?
- If you need help going to appointments or getting your other child to school
let me know.
- Can I watch the kids while you rest?
- Can I answer the phone for you (especially during the first few weeks after diagnosis)
- If you need me to go to appointments with you, please let me know.
- Do send the ill child and siblings cards, stickers, etc…
- Do sign the guestbook often
There are probably many more do’s and do nots and I will try to add to this list as I
get the urge. It is healing for me and good information for supporters. Thank you
(Orignanlly Posted Jan 11/09)