I'm having a time of it right now. This past week or two has somehow been very trying for me. I'm tired. I'm inwardly stressed (out of my mind) wondering what's happening with Max's cancer. Is it shrinking? Is it stable? I know his markers (urine and blood) aren't showing any real changes for the worse, but will the fear - the wondering - ever go away?
I read Margo's post the other day (Sam Hutchison's Mom) about being on cloud 9 since his NED news. But then settling down on cloud 6, where the view is still fabulous, because she knows the truth of this cancer.
I'd love to be on cloud 6 with her. It's just so sad to think that even when your kid is NED (no evidence of disease) there is most likely an NB cell hiding out just waiting for a break.
Cloud 9 is therefore unattainable... until a true cure has been found.
6 comments:
You are an AMAZING woman! Your schedule just yesterday alone was crazy... Yet you always have a smile. I can only begin to imagine your inward fears. Max is such an incredible boy - EVERYONE who meets him falls instantly in love with him. People often ask me, "What are Max's parents like?" I run out of superlatives to use: INCREDIBLE, AWESOME, WONDERFUL. Only you know how hard your journey is. A lot of people (more now with my "overmarketing") are praying for you all. I am praying for a cure and Cloud 9. lisa
There is a Japanese poem by a woman who had a pretty hellish life in Japan during the war. I can't translate the entire poem but every verse starts with a line; "don't show your tear of despair to your innocent new born baby." I often remember this poem whenever I see you. Of all the things you are doing for Max, showing a smile on your face for him is, to me, one of the best gift. I salute your strength as a mom and yet hope that you will get a break, from time to time, to cry, scream, or simply vent. Shiho
Shiho - you're right. When Max was first diagnosed Andy & I made a decision that positive attitude was the only way to go. No tears in front of the kids.
Oh,lil Sis--how I wish there was a break in all of this for you. Mom and I were talking before lunch today about how you always have a smile and bright outlook. I cannot imagine anything more difficult to live with everyday. I agree with Shiho--I admire you so very much and hope you will get a break and just vent--it's okay!! I love you--Big Sis
Melissa,
I have not had the pleasure to meet your family.. I haven't even actually talked to you alot.. but... I have read your posts and I think you are an amazing inspiration to us all!! You helped me soo much in making my decision to go to Vermont and I will forever be grateful for that.. I was struggling with taking that leap to be off chemo for those weeks and you told me to just schedule it and then freak out later if you have to and you can always cancel it.. That was the best advice!!! I thank God every day that I went to Vermont and met wonderful Dr. Sholler.. I think what magicwater and you all are doing is amazing and I for one am forever grateful for what you all are trying to do..Keep your chin up.. this is a rough, horrible road and it seems that so far you have traveled it with dignity and grace and a smile on your face..
Thanks for everything!!!
with love,
rhonda dudley
www.caringbridge.org/tn/sydneymarie
so true...cloud 9 is always within reach, yet too far to feel good about. I couldn't have said it better myself.
You do insprire, and I am glad to have found your site and journey along the way.
www.brenda-chad.blogspot.com
Brenda
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