"I wish I was him again"

Tuesday April 7th, 2009

Hi All,


Well I must start with what seems to be not enough but THANK YOU. Thank you to my friends Sandra, Mariette, Paul and to my sister Ali who 3 months ago decided to put a fundraiser together for us. Who knew it would end up being the best life lesson that I could have ever experienced. Sunday, we were blessed to have been able to see with our own eyes what caring is all about. I would have not believed it if I hadn't seen it. When we walked in and saw all these people, some friends, some I haven't seen in over 10 years, some family, some who have never met us all there for Jacob was a feeling we will never get back. Thank you to ALL who were there , who worked so hard to make it happen and to all who contributed in one way or another. There are simply no words. I am overwhelmed with the love Jacob has around him and its just one more reason to fight the sh*t out of this cancer. Thank you. 

Today was an eventful day. It was another chapter in our journey. It was Jacob's last day of radiation. 30 treatments every day for the last 6 weeks. What can I say about my baby? He has shown me more courage than I could every have hoped for...the only problem now is that he has been so brave it feels almost impossible to complain when I give birth...lol :) 

We are doing well. There are improvments every day. Some small, some slighty more signaficant. He is generally in better spirits, more energy and having better moments in a day. It scares me to even think that now that he is getting better we are getting ready to take him away from home and when I say home I mean CHEO which right now is his safe haven. To think that now we must start over a whole new part of our journey and make him very sick all over again....in a new city, with new staff, new environment, it is almost incomprehendable to us let alone him. 

We had a good day up until this evening. I am heartbroken as I write this blog which started out on a great note. Tonight I did something I thought was a good thing. I made the mistake of showing Jacob the absolutely beautiful video they put together at the fundraiser. That was a big mistake. Instead of making him feel good it made him cry and broke his heart and all he kept saying was "i wish i was him again", "i wish i was the same boy i was in that video". I couldn't believe it, i just wanted to and still want to sink in a dark hole and not come out. How didn't I know that was going to happen? How didn't I know it would make him so sad instead of happy. Tonight, I feel like the worst mommy ever. 

I am home now. Crying. Daddy is holding the forth at the hospital. I am not sure how he is right now but all I know is my son will close his eyes and go to sleep tonight filled with sadness. 

I am sorry Jacob. I wish I could take that moment back. Oh how I wish i could.
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I hope...
I hope you never have to hear the words “Your child has cancer”.

I hope you never have to hear “The prognosis is not good”.

I hope you never have to watch your child prepare to undergo chemo, have a “port” surgically implanted in their chest, be connected to an IV pole, look at you with fear in their eyes and say, “Don’t worry Mom, it’s going to be okay.”

I hope you never have to hold your child while they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the “cure” you pray for slowly take away your child’s identity, as they, lose their hair, become skeletal, develop severe acne, become barely able to walk or move, and look at you with hope in their eyes and say, “It’s going to be okay Mom.”

I hope you never have to stay in the hospital for weeks at a time, where there is no privacy, sleeping on a slab, your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled in a dark hospital corridor crying quietly, after just being told “there’s nothing more we can do”.

I hope you never have to watch a family wandering aimlessly, minutes after their child’s body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope, and fear overwhelm you.

I hope you never have to see your child’s head bolted to a table while they receive radiation.

I hope you never know what it is like to take you child home, (grateful but so afraid) in a wheelchair because the chemo has damaged their muscles, 35 pounds lighter, pale, bald, and scarred, And they look at you with faith in their eyes and say, “It’s going to be okay Mom.”

I hope you never have to face the few friends that have stuck by you and hear them say, “Thank God it’s all over” because you know it will never be over.

Your life becomes a whirl of doctors, blood tests, and MRI’s, and you try to get your life back to normal while living in mind-numbing fear that any one of these tests could result in hearing the dreaded words “The cancer has returned”.

And your friends become even fewer.

I hope you never have to experience any of these things. Because only then ...

will you understand.

Author: Carol Baan