Wednesday, January 4, 2012

feedback and writing

I just want people to know how much I appreciate what they write in response to my blog posts. It really helps me to read all of your feedback. When I write about feeling pressured or about grieving my way that is not meant or directed to anyone specific generally. sometimes it is. please keep the feedback going. ty


  1. Mike, I comment on Kezia's Blog today, but I also will post on yours. I don't think that anyone should ever pressure you for how you are grieving, it person grieves differently.

    I do understand what you are receiving because although my daughter Emily is fighting NB still, we get comments a lot of things that we should do and they don't know why we aren't this or that, and there is always some type of negative.

    While I don't know what you are going through, I do know what you were going through with Saiorse with NB. Its hell and back and I can be open and honest and say that.

    I think both you and Kezia are amazing parents. For that I love you both and I know you will make a difference.

    Emily's Mom, Shannon

  2. When my son died, the priest said to us, "People are going to say a lot of stupid things". I asked if it was okay to hit them. He said "it is advisable NOT to". You will hear so much advise (even I have given it!) take what you want, throw the rest out! One day at time!

  3. I understand what you meant. I also agree with the other two posters above, and my condolences to their loss of a child.

  4. Mike, I don't comment much but I do read it all. I have a friend from high school who is going through NB with his young daughter. Keep writing. It's a way of processing what is going on and a way of getting the thoughts out of your head so that you can think. This blog is for you and about you, so never worry about what others might say or not say. Someday you will come back here to see where you were and how far you've come. Just make sure to create backup copies of the database every so often in case the technology goes poof. You don't want to lose what you have here.

  5. Hugs to all of you. I really am sorry any of you have to go though this. Mike and Kezia as always thanks for sharing your life and thanks for touching my heart. Hugs.

  6. Hi Mike,

    I like thecookiegal's post above about what the priest told her. I am sure that people say a lot of stupid things because they don't know what to say - because there is nothing to say to make it better. You know, I felt awfully that I didn't call you and Kezia before the memorial service, but I just didn't know what to say and I didn't want to say the wrong thing. I didn't want to start crying on the phone with you. I wanted to be strong for you and I didn't think I'd be able to. But maybe it would have been ok to cry with you. Saoirse is worth shedding tears for. People all over the world are shedding tears for her - people who have never met her!

    The morning that Saoirse died, I called my dad to tell him because my parents have been as concerned as I have been. My parents lost their first daughter. Theirs was a very different situation from yours, but nonetheless, they still suffer from it. Her birthday was right between mine and Heather's (we're 2 weeks apart) so that time of year gives them very mixed emotions. As I cried on the phone with my dad that morning, he told me some of the stupid things that people told them (he wanted to make sure I wouldn't say such things to you, but they were so obviously insensitive that I would never have even thought to say them!). I have tried to think very carefully about what I say, but who knows? Please, when I or others say stupid, thoughtless, insensitive things, please know that it is because we don't know the right things to say. When someone gives you advice on how to grieve and it isn't welcome or it isn't advice that will work for you, ignore the advice and try to focus on the fact that this person cares for you and wants to help, even if the method is misguided. (See - I just gave you advice about how to take other people's advice! If you disagree with my advice, that's totally fine, I just hope you understand my intentions!)

    That is all about that. I just looked to the right and saw the page has 61,955 views! How awesome is that???? Your blog is reaching so many people and spreading awareness of neuroblastoma to each person who views it. Many of those views are repeat visitors (probably at least 50 views are mine), but that just means that each time they view the page, the message sinks in a little deeper and they will be more inclined to further spread awareness.