Posted by Steph in
Blog, on Friday, June 23. 2006 at
I received a few emails from close friends asking about my online journal about Asher....
First I want to say that I started it thinking it would be the only way to update family and friends, and as the news was spreading, there were many people looking for updates. I thought Scott and I would have one blog and both post. Then I started one but he did too and it ended up being we both had one.
I can't even really begin to tell you why I have decided to not share it online, but I'll say I decided it during the night around 2am when Aubree was up, wide awake. I saw Scott's post about 'treatment protocols' and the 'Steven Bell Blog' and I clicked....probably my biggest mistake this week....
It depressed me....as if cancer isn't depressing enough. I didn't want this website to turn into a "memorial" some day. I didn't want complete strangers or even my mom reading about how I was really feeling but at the same time I wanted to be able to say whatever I felt at the time, without feeling guilty or someone saying I shouldn't feel that way. I want to remain positive and optimistic that my son will be in the 80% that get cured from this (although I don't really believe statistics matter). He is a fighter, and I am sure every kid is!
The biggest thing that affected me, that I read on a blog that night, and it was linked from the first one (I think I visited 5 that night), was the mom saying she had guilt....guilt about not being able to save her son's life and guilt about being on the computer when she could be with her son.
That's it, that is when I hit the delete key to my online journal. Wake up call for me! Going into my room on my computer or opening my laptop on the couch didn't feel good, didn't make me feel better....being with my son did and does! I am amazed at how good I can feel being near my son, even when he is in pain, telling him it is okay to cry or whatever it is he needs to do. I am there with him, for him, as much as I can. It was so hard for me to leave the hospital each night, but I knew Aubree needed me as did Alexa, even if it was during the night. Now my son is home, most of the time, and I want to be right there, with him, no where else.
You know, I don't want to cry right now, and I don't feel the need to, for the most part. I want to be focused. I want to fight this cancer. I want to go to bed when all the kids are sleeping so I can get as much sleep as I can. I don't want to be held by this computer and website. I have decided, even if I do journal, it will be for me and just for therapy, to get through my days when I can't cope with feelings, so I can sleep at night....if my mind is racing with thoughts or feelings and I can't sleep, I can type it out and then go to bed to get the rest I need to function the next day.
I am a perfectionist and wanted to make the site for everyone else, with great presentation, photos, and accurate info....now I realize this isn't about anyone else. This is about Asher. This is about my son, my husband, my daughters, me and our future. I am sure, unless you have or had a child with cancer, you can't begin to imagine how I feel right now and I have heard that some people don't want to know. That reading the journaling is too hard. That they just want to know the medical updates. That that is all they can deal with. I think that makes a lot of sense and maybe the most sense right now. I don't want to get others caught up in my emotions. I just want everyone that is willing to pray, to pray for Asher, for my son to not have to suffer or feel too much pain, for his strength and courage as well as our's, his family, those that must take care of him and watch over him and his sisters....pray for us all!
So with all of those thoughts going through my mind (they sound cluttered and messed up, don't they?) I hope you understand why I went private with my journaling. I hope Scott will still find the time to update all of you here in his blog when he can, but he returns to work next week and Asher goes to surgery this weekend and starts chemo shortly after....there is always a lot going on but I am sure he will post when he has time (and he types fast so that helps too!).
Thank you for your thoughts and prayers - God Bless You - Steph
Stephanie Hamilton - #1 - 2006-06-23 02:12 -
I understand why you went private. We'll keep the prayers coming!
God bless you all. And do what you each need to do to take care of you and your family! Thinking of you all!
Linda Foshag - #2 - 2006-06-23 03:26 -
I totally understand all your feelings, including the guilt that only a Mom can understand. I understand all the "ups" and "downs" in the cancer world and how stressful it can be. I will continue to pray for Asher. Prayer is very powerful. My advice is to stop researching on the internet unless you have a definite website to go to. We also became scared after reading what's out there. You are doing the right thing by focusing on Asher.
Martha Treadway - #3 - 2006-06-23 09:01 -
(((hugs))) I won't ever stop praying!
Mom - #5 - 2006-06-23 14:00 -
I saw you today with Asher (and of course holding and feeding Aubree, and interacting with Alexa) and I am in awe of your strength. Moms aren't a dime a dozen; they're one in a million ... and you're that one for Asher. You'll do great supporting him, encouraging him, caring for him, and loving him when Scott goes back to work. And I'll be there whenever you need me, even if it's every day; just call.
Brandie - #6 - 2006-06-23 15:43 -
I can totally understand wanting to spend your time in the best way and being a very private person myself I also understand not wanting everyone to know everything you are feeling all the time. You are doing a GREAT job caring for Asher and the girls. I admire your strength! With Scott going back to work I'll know things will be extra crazy so let me know if you ever want a visitor to help provide a sane moment. And I'm sure Cole would love to play Cars or video games with Asher!
I am a cancer mom, and can totally understand what you wrote..and the best thing is, your family has a wonderful loving mom, and you can basically do whatever you please in this mess, spending time as you feel best...it is all fine, as long as you decide on your own what is right for you to handle this...and, there are a LOT of us out here that can help you IF you ever need us to vent to..my daughter is a 4 yr survivor..you are just one step behind..keep walking day by day. Just know your family is in my prayers, and there are lots of us out here that are well and share some of your feelings..hold your boy tight. Steph, a big group of strangers is here for you, rooting you on unknown to you..lots of brain tumor moms and dads..you can do this.. call if you ever need a voice that has been there too. 757 934 0703, Virginia no.
The internet is a great tool when you are ready for it...I found Lizzies Doc at StJude that way...emailed him and he answered that day..best thing of all this, the whole blogging thing is your choice! totally..use your strength where it builds .
Much love from a brain tumor mom in Virginia
Tim & Connie Mendal - #8 - 2006-06-24 18:02 -
Interesting writings. I felt compelled to write something but realize that nothing is truly appropriate. I believe that some of your friends who have been caregivers may have some insights and thoughts which may assist you in your current situation. Feel free to call.
Tim & Connie
Vera Lim - #9 - 2006-06-25 19:17 -
Steph, I joust found out about Asher, I will keep Asher and you all in my prayers...God is with you!!
Marsha - #10 - 2006-06-27 02:01 -
I am one of those strangers out there who can do nothing for you but pray that God be with you all during this trying time. And I will. I have discovered that prayer is a very powerful thing. I was diagnosed with cancer Feb 16, 2005. I believe prayer is and was my greatest medicine. For my own self preservation I had to put faith in my doctors and stay off the internet for information. It was just information overload and too overwhelming for me. You will do whatever is right for you. May God be with you and may He bless you and your family.
P.S. My stepdaughter had a baby boy May 5, 2006. She named him Asher James.