Thursday, November 5, 2009

A View from Our New Normal ...

An afternoon,four beautiful hours, filled talking, laughing and crying with, the most hopeful, faith filled woman I have ever been in the presence of.A mom who kissed her beautiful 8 year old boy goodbye for one final time this past March and still can call herself blessed and brimming with gratitude,for those all too short but precious 8 years.A few hours this evening,watching my boys run,laugh,and play with a beautiful, bald headed,NG nosed,giggly,smiley little love,while her mom and I talked about the upcoming months of treatment and all the fear and anxiety that goes along with it.A facebook update from a 4 year old cancer veterans mom,wondering how in the world can it be, that blasts are still present after 5 months of treatment?How can this be when her daughter had already successfully fought ONE type of leukemia only to relapse with a completely DIFFERENT kind?A post update tonight,that brought me to tears,that a sweet,courageous,fellow chromosomally enhanced AML warrior,diagnosed only one month before Zoey,is potentially facing relapse .. already.Mind you,she too fought one type of leukemia as a small child,relapsed and beat that,only to fight AGAIN a new type in her early twenties.Has she not endured enough?Has her family not been asked to endure enough?

While there are moments. that I wish I could more easily meld in with the PTA talking mom's at the boy's school ... that world is really longer mine.Nor,to be honest,do I really want it to be.This is where my new normal his now.My heart and life now dwells with THESE mom's.Mother's who would,in one second give their lives,in order to spare the lives and pain and paths of their children.I know that some have come to my blog and clicked away without reading much.A sick child,with sick children as friends, sad posts and updates,is more then they can handle.One time it was complete strangers.I followed my site meter to a "mom's board",I use that word "mom" loosely because what I read was down right painful.One of them had found Zoey's blog and was sharing the address.A few went,came back and said something along the lines of "I don't need to read another f***ing blog on a sick child.WAY too depressing."Seriously ... what kind of a narrow minded and quite frankly cruel "mom's board" was that?Hurt me then and pisses me off now.And believe me,it isn't just strangers that feel this way.My life has been filled to the brim the last year with people too stuck in their own selfish world and unable to "deal"with the sickness and sadness to keep up with our lives or the lives of these other children.This is real.These are real lives and you know,people can bury their heads,avoid because they can't handle it but know one thing,it could be you one day.And maybe that is what scares them and maybe that is the saddest thing of all.That peoples own fear for their own child and themselves, keep them away from experiencing some of life's greatest blessings.If people come here and see sadness and despair,then they have truly missed the voice of this blog.The voices of hope,resounding loudly not only from Zoey but from all of her friends,here on earth and those flying free from above.

I have digressed ... my post's main objective is to shed light on our new normal,not for my sake but for the sake of those standing on the edge in this moment. I come to all of you,and beg all of you who do care, to lend whatever support, in whatever way, you are able.Please look at the faces of Ashlyn,Kristen and Gavin.Study their innocence and pray for them and their families.Send them peace and strength for their journey's.

25 comments:

stephanie said...

Thanks again for writing what needed to be writen. I was one of those people afraid to even say the "C" word out loud ..least it hear me and attack. Then came Em and then came all of you!!!!! And I felt I could not sit quietly any longer. If you love your kids you do pray every second that this nightmare passes you by, I know I do. Nobody asks for it, but you also have a responsibility to do something. Anything , but bury your head, or shy away from some one because they are fighting the demon of cancer.I wouldn't what to miss a moment of what you and so many others share, I've been blessed a hundred times over by being present on your blogs.I've cried a hundred times over too, but it all has changed my way of thinking and living for the better.

SammyJo said...

It would take more time than I currently have to find the right english words for a "full comment", but I feel sorry for those moms. They miss out a lot, about the beauty of live, that doesnt't lay at the surface, about deepness, truthfulness.

Sorry, not easy to express, would be easier in German ;-)

All my best for those little warriors!

The VW's said...

Life can be so sad.....children should not have to suffer! Praying for you and these families! HUGS!!!

Lacey said...

you know, Ray said that a while ago. "Are you sure its a good idea to make friends with all these people that may lose their children". Not meaning it rude, just how much sadness can one person take, we were hit hard by our first friend lost when Jax was a baby, his little girlfriend Makenna. but this is real, people face it everyday, you can't run from it. Ya its hard, but the more support these people can get the better, so I'll always be there, and hope that I don't need the return favor with Jax.

Anonymous said...

I very rarely post on a blog, but I have been following Zoey's journey now for about 4 months. She is a beautiful, precious little girl and oh so brave. She is very blessed to have you as her Mom as you are so richly blessed to have Zoey as your daughter. I pray that Zoey stays healthy and stays the happy little girl that she is now! I also love her name as I have my own little Zoey! My grandaughter who is almost 2! I think my Zoey and your little Zoey would be very good friends!
May God Bless you even more than he already has. You are a very special family!

ABandCsMom said...

Stupid people say stupid things. That really burns me up. One way I like to look at it is this ~ God gave Carly to us because He knew we would be better parents to her than those narrow minded fools who make comments like that on a "moms board". Little do these fools know. Cancer and sick children knows no boundaries. It could very well be those people walking in our very shoes one day. I sure hope not though. Because, I would fear for their child, having parents like that.

Kristy said...

I love me some Zoey and ALL the little warriors (angels included) that have blessed ME with persepective hope and the realization that life is so much more than work and stupid issues. Life is about laughter, love and spending precious time with your loved ones!!!

Anonymous said...

What to say.....hmmmmm. My feeling is that those who suffer greatly because their children are suffering have an incredible depth to offer the world. I'd much rather have a cup of coffee with you, as opposed to someone whose deepest thought is what color tile to use in the guest bathroom.

Our society is filled with narcissistic people who have no depth and only care about their moment-to-moment desires being fulfilled.

Take care, Jenefer

datri said...

Sometimes I forget that everyone is not us. I always find it weird talking to people who don't get it.

Lorraine said...

I think Zoey is as cute as button. Her sweet little face and smile makes me sit here and smile :)) Thank you for sharing her with us or I should say allowing us to share her with you.

scrappy quilter said...

Heather you said it all. Hugs and love..

Angi said...

My child is not sick. I come to your blog and see positive and hope for every person. I look to see a happy face and see a cheerful word. I love to see Zoey's smiling face ( I grew up with two brothers that had Downs)You make me smile (and cry) you give me hope in this world that isn't always smiling.

Bea Braun said...

What courageous children and what amazing families. Saying prayers for Gavin that he will soon know pure joy in the arms of Jesus. Laughing, dancing, running, and singing. And for Ashlyn and Kristen that God provide them with the healing that they need. May we each love, embrace, and enjoy our kids and our loved ones, and not take our time together for granted.

just jean said...

Heather,
This post was so well said. When some of my colleagues get upset about the most unimportant things, I wonder if they need a dose of reality...a brush with what is really important....a brush with what makes life truly beautiful...a brush with hopeful faith....a brush with the importance of each moment in life.
Your posts rarely evoke tears of fear or sadness to me, but often evoke tears of hope, love, and beauty. Thank you.

K said...

Saying a prayer for you and theose lovely children
So many tears I have shed over this post
So inspired by you and your child

Kristen's mom said...

Oh Heather I really don't know what to say. You have always been such an inspiration. Even though I knew this was a likely possibility and I thought I was somewhat prepared for it because I thought about it every day, but now that it is staring me in the face I know that no parent can ever be ready. I know I should be organizing, grocery shopping, getting my household of 3 teenagers and a husband ready for a once again absent wife and mother, but I can hardly move and the tears just don't stop. Thank You so very much for your support it truly does lift me.

Leightongirl said...

It doesn't seem fair, does it?

3saints said...

I wish sometimes I couldn't understand what your writing, and while our sweet children fight two totally different types of battles...we both still feel that true heartache of not being able to fix everything for them...oh how painful it is when people turn away from us...it's something I'm struggling with now.
Thank you for writing this blog...
Warmly
Kate

Amy said...

We are forever changed. I write about it often but it's only those of us who walked in the dark and learned to feel our way around that can truly be in tune with life's curves.

Screaming inside our heads at those who turn away - but you know what - I'll take Z and L any day of the week over the shallow life they lead.

Kisses from us.

Googsmom said...

I love Zoey!! She is my Hero.
{{{{HUGS}}}}

Kele said...

I am just at a loss for words... WoW!

Stephanie said...

How indescribably maddening it is that the word "normal" is an acceptable part of that sentence...

Love, Steph.

Alisha said...

I agree with a previous commenter. Stupid people say stupid things. Instead of being ignorant to the lives of children who are dealing with things that are nightmares to many people, they should be taking a stand, fighting for more money to go to more research, to save these kids lives.

Anonymous said...

My daughter just finished treatment for ALL, today I see lots of bruises on her legs. This is our new normal. I come visit your blog because your one of a few who understand. Zoey is beautiful, thank you for sharing her with us!
Nancy in NJ

Judy said...

Great post, Heather! Thank you! Our daily journey is faced with uncertainty too. We have lost touch with friends/family/etc. Our children struggle with different challenges but I can tell you, I feel isolated and "shunned". I'm so glad to hear you almost embrace your "normal". It inspires me to do the same :) ((((((hugs))))))))