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. We also remember Aunt Rose wrote in a card to us saying “Whatever decision you decide on will be the best thing for Leah”. That was the ultimate best statement we have ever heard.

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 future.

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 she see out of that eye?
- Did you get a second opinion? (come on! we’ve gotten 15 conventional and
  about 5 alternative at least)
- 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 (these thoughts go
  thru our head already and we don’t need more people adding to questions of
  how and thoughts of guilt)
- 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 her? (pleeeeze)
- Don’t forget about the siblings of these ill children, be kind to them for they are
  going thru a tough time!

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.

DO SAY
- 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 can get out?
- May I bring a meal over?
- May I add her to the prayer list at my church?
- You are showing her so much love; you are great parents to her
- 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 (thanks Dad Cioma)
- Love her Love her Love her
- Enjoy every minute
- Whatever decision you make is the right one
- Can I do some research for you? (Thanks Diane)
- Can I make some phone calls for you?
- Can I address Thank You’s for you? (thanks Mom James)
- If you need help going to appointments or getting your other daughter 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 for listening.