I'm having some conflicting feelings.
On one hand we are surrounded by incredibly generous people - some of whom we don't even know and may never meet - who have seen our hope in the MagicWater Project (and the Sam & Penelope Fund before that) and have made a donation in an effort to help us give Max and kids like him time to be a kid. They leave notes on our blogs, they're interested and openly caring - and so many of them have made donations to MWP that it would boggle your mind. Even their kids bring change to school for the Magic Coins bottle in their classrooms. They offer help, caring thoughts and concern, prayers - and it comes from the heart. It makes me cry.
On the other hand, we've got very close friends who have never seem to ask what keeps us going. And I love these friends, but I feel a bit disappointed and (today) mad a them because I feel they don't care that we have a child with a deadly disease - how would i know if they care? I never hear from them in any medium. In writing this I see that it can appear that $$ = caring... but that's not what I mean; that's not what I'm getting at.
How many times do we have to say that neuroblastoma has no cure? How many times do we have to say that even though Max is doing well today, things could change overnight? Sure we keep a positive attitude, but that doesn't keep the constant nagging in the back of our minds from reminding us that life really is precious.
We have a little boy who carries a deadly cancer in his little body that could erupt like a volcano. How frightened would you be every day if you had that thought in your head about your child?
I guess it's easy for the people in our immediate community to feel more affected by Max because they see him all the time and their kids may talk about him, or they've signed up for a blood drive in his honor. Out of sight - out of mind doesn't play a part here. Max and neuroblastoma are in the forefront.
Thank you so much to all of you who have played a positive part in Max's journey. And I'm sorry for striking out at those of you who I'm mad at tonight (whoever you are!) - I get to do that... it's my blog and an outlet is required to keep my mind from completely fogging over. good night.
8 comments:
Missy,
As I read this entry this morning I couldn't help but get teary eyed. I had a similar experience (by the way I am not trying to compare my experience to yours in anyway) after my mom died I remember the pain and lonliness all too well. I remember that the comfort and support I got was from people I least expected it from. The friends I had for many years who knew the journey my mom went through were sometimes no where to be found. I would get so sad about this. After time went by I started to realize that it wasn't so much that they didn't care but they didn't know what to say or do. I hope that your friends will realize that even the simple "regular" phone call really makes a difference.
We love you all!
Bree
I think I know what you are saying. I don't blame you for feeling sad, neglected and angry. You need all the help you can get to hold on your sanity. It's good you have this outlet to vent and it is OK to get mad, yell and throw things. In the end focus on those who are there for you. They count!
Love you, Mom
I have thought about your posting for hours... I wonder how many of your friends who have disappointed you have been through a crisis. I find the most empathetic people are those who have survived cancer themselves, had an immediate family member with cancer, or had a child with a major health crisis. I think those experiences make you stronger, and it is through that strength that you are able to reach out to others in need. Perhaps these friends are afraid: afraid of saying the wrong thing, afraid of their own mortality, afraid of the mortality of their children, afraid of experiencing emotional pain. The fear freezes them. It is sad because they are failing you and themselves. It seems that it is through these crisis situations that you find out who truly are your friends, those with both love (in action) and loyalty. I'm sorry that you have to experience this... it is a loss and one more thing you shouldn't have to deal with. But in the end, know that you are loved and cared for by MANY. I only wish I could take all the pain and cancer away. xolisa
Dear Melissa,
I think I am one of those people and I am sorry. I don't think an hour of any day goes by with out thinking of you and Max and Andy and Hannah and Nicky and all you have to endure every minute of every day. By if I don't pick up the phone how do you know. My prayers are many, my actions are few--I will do better--I love you more than you will ever know. Randee
Thank you, my family and friends, for leaving such great comments regarding this post. I received an email from another NB parent who read this post and went crazy with it. He, too, has experienced the exact same thing with "close" friends. I feel validated by your thoughts and remarks. This has also caused me to look at nyself and make sure that I am a good, giving person to others who are in need.
Randee: you are SO NOT on my list! Cripes! You just left work not too long ago to help with Nicky when I couldn't have him at the hospital due to a runny nose. You always keep up with our blog and leave notes. We know you are there for us whenever we need you. You do not need to do anymore than you already do. You are a great sister. And we have a great extended family that we know we can count on in any kind of emergency. Thank you all.
You are completly entilled to have those feelings..Lisa's message is all I would say also but with a few other comments..I found in my own journey as well as Lisa did that some people come back into our lives...and leave again...people who you didn't ever think that would be there for you, ARE!..some people are afraid...and then there are your FRIENDS! A blessing! Everyone some day is going to be touched...they can run but they cannot hide. One person who will always be there for you is your heavenly Father..you can talk to Him,cry to Him, and lean on Him. He is constant in every aspect of your life..the good and
the bad.There are many people who do care..love you..and want to help..focus on the positive and feel the love and support from many who do know how to show it. Give Max a hug for me..he is blessed to call you mom. xo Linny
Missy,
For what is worth I want to validate what Bree said: "it wasn't so much that they didn't care but they didn't know what to say or do." I SO do not know what to say to you guys the situation is so difficult. I mostly just listen to the conversations and wonder how hard this is for you guys and how you cope. I can vouch for Randee's comments she truely agonises over this. Even though I am one of the quite ones and will likely alway be, your all first in my prayers.
Love Mike
Hey Mis,
Wow..I am reading the posts and don't quite know what to say. Isn't that unlike me?
Max's disease and situation is bringing out the best and worst in people. Try not to judge. I don't think we know what to do or say. If we knew how to react in a better manner we would. We are scared, as well.
Let me say this. Max has people in many states and many countries who know about his journey and pray in the best way they know how. We are so sensitive to your family's (mine) struggle with this monster. If any of us had a magic wand, we would wave it for Max. The only magic I know is that the Father has a plan and Max is a precious part of that plan. I rest in that thought. I hope you will too.
You both have remained so very postive and upbeat, hopeful and that is as it should be. I am amazed at the tone you and Andy maintain. You both are Max's hero's. I am in awe of your strength, stamina and the depth of your love.
I am a parent and a grandparent and I cannot imagine anything other than Max will prevail.
UrBro..
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