Magnanimously homeschooling, worshiping, creating.......

Join us on a journey of faith, healing, learning to live with part of our hearts missing, and recovery, as our family rebuilds our lives, after our son's long battle with cancer....and his eventual rise on eagle's wings into Heaven...victory is his...he is serving the King!!!

Friday, January 6, 2012

do people know?

From a post of carepage friend who lost her son...just had to share it..

Do people know?

Posted 14 minutes ago
We have entered a month of sadness. Too many losses. I was thinking about all of the people who follow the kids thru CP or CB or FB . I was thinking of how some of you become family and keep in touch and how some others seem to just go from one kid to the next as if they were following a drama TV show . They read our words, until our child goes in remission or dies. Then they move on . Are they actually understanding what is happening? That our flesh and blood is tortured daily either by the disease or the treatment? Do they truly understand the depth of it? Do they actually learn something or get something out of it ? Do they realize the trauma we go thru as parents when the words “ Your child has cancer”?
When I heard those words and they were directed to us and our child , I lost touch with reality. It just couldn’t be. Not Julian , not my son. I felt that someone had their hands around my neck and were holding it tighter and tighter until I couldn’t breathe . I felt like throwing up . Then listening to the oncologist explaining the treatments he had to have was more than my brain and my heart could handle. Radiations for 30 days total brain and spine. Chemotherapy for over a year. The more she went into details the fastest I was losing it. She asked several times if we wanted to wait till the next day to finish discussing the details. But I knew shed better just doing it all right then. When she was done , I couldn’t stop the tears. I couldn’t go back to Julian’s room and face him knowing what we were about to put him thru. I couldn’t face anyone else either. So I ran away to the hospital chapel and just couldn’t stop the tears no matter how hard I tried. Then I went to a different floor in the hospital , sat on the ground on one of the balconies looking down on the atrium and listened to a young girl playing the piano. So many thing racing thru my mind, trying my best not to throw up. My lil man , my buddy …God he was not even four yet. We were going to put him thru hell . The only thought that validated doing this to him was that it was necessary to save him . Hope. Hope is all you have when you face those hard decisions.
Do people understand that when they read our stories? Do they understand the impact on our whole being when we hear “your child has cancer”
How about when we hear one of the siblings ask “is he going to die?” NO child , absolutely NO child should have to worry about the potential death of their baby brother!!!
Then you wake up your kid very early for 30 days , take them to the hospital every single morning but weekends , to have their brain and spine zapped at unimaginably strong doses of radiations and if they are too little to stay awake , they get put under anesthesia every single day. And all you hope for is that they will have enough healthy brain cells left to learn to tie their shoes someday , because we are given no guarantee …
Do people realize what it takes to get up one more day and another and actually voluntarily bring your child in to have his brain radiated??? Do they?? Do they understand how we might feel??
Then there is the poison that you watch dripping slowly into your baby’s veins. You know it is going to make him sick as a dog . You know it is going to make him bald . You know it is going to make his skin burn and peel . You know he is going to have mouth sore so bad his mouth is going to bleed and he wont be able to eat for day. You know his joints are going to ache . You know all that but hope that one day he will be cancer free makes it all bearable to watch . Except some days it is too much . We lose it , we scream in our pillow so he doesn’t hear. We have to step out and lose it. Except some days panic sets in . You just cant see that it will ever get better. You feel guilty for doing this to your child. You hurt watching him so weak and broken. You get angry, why did it have to be him . You envy your friends and their healthy children.
Do people realize how overloaded with emotions we are? Do they understand how screwed up our minds become? How bad it all hurts?
Yes , we still smile, the kids still smile . But **** it hurts.
Do you remember when I explained how it felt when a child is first diagnosed, when we first hear the words “your child has cancer”?
Well , that was nothing compared to hearing the words “ You child has relapsed” or “the tumor is back and growing fast” or” We have very few options left” and eventually “ There is nothing more we can do” , oh and try “ We have arranged for hospice staff to meet with you” .
The initial punch in the stomach from original diagnosis has now turned into a hand actually reaching inside your chest and ripping part of your heart out. THERE IS NOTHING MORE WE CAN DO … A nice way to say “ YOU CHILD IS DYING “
Can anyone who hasn’t heard those words actually comprehend any of the feelings and emotions ?? Do they try or would they rather not even go there?
From the time those words are softly spoken to you (like it makes it any easier to hear) until the end, it spirals down . You know you cant stop it and it is the most sickening feeling ever , deep in your gut. It is like having fine sand in your hand and you try to keep it there but no matter what you do the sand slips through and is eventually all gone. You just couldn’t stop it . I couldn’t stop Julian from slipping away . Again , so very sickening. I watched him getting worse and worse each day , with death as the only possible outcome. MY child who was seemingly healthy 9 months prior was going to die. HE WAS GOING TO DIE . I repeated those words in my head so many times over and over as to try to make sense of it all . But it never did make sense. None of it makes sense.
Then he died. It was the most heartbreaking experience ever… NOTHING compares to watching your child fight for his last breath ( exactly like a fish out of water) , nor to feeling his little heart stop beating in his chest right under your fingers. NOTHING.
Again can anyone comprehend the trauma ?
I don’t think so . It is too huge . It is too scary .
I wouldn’t ask of anyone to truly go there but please , please , when you follow our kids stories , be respectful , keep in mind that they are real , and so are our feelings and emotions. To us , they aren’t just another sick kid , they are our babies and for those of us whose children died , the trauma is so great we will never get over it. Our children are our life and we couldn’t spare them from death. We long and ache for them with all our heart , the thought of never being able to hug Julian , kiss his sweet lips , smell his skin , kills me.
So if you just like to read our stories for the drama of it, maybe you should stop and think that maybe, just maybe instead , you should be hugging your healthy child, closing your eyes, smelling his skin and taking him fishing while you still have a chance. No one knows what tomorrow will bring…
Well, we do know that tomorrow in the US ,another 46 sets of parents will hear the words “ your child has cancer “ and that 7 sets of parents will say goodbye to their child and will be forever broken . And the sucky part is, IT COULD BE YOUR CHILD … It was mine…

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Noah Webster's 1828 Dictionary of the American Language defines Magnanimity as such:
MAGNANIM'ITY, n. [L. magnanimitas; magnus, great, and animus, mind.] Greatness of mind; that elevation or dignity of soul, which encounters danger and trouble with tranquillity and firmness, which raises the possessor above revenge, and makes him delight in acts of benevolence, which makes him disdain injustice and meanness, and prompts him to sacrifice personal ease, interest and safety for the accomplishment of useful and noble objects.