Looking Back

One year ago today was when our journey with TJ changed to a downward spiral.  However, honestly looking back there never really was an upward part of our journey.  I remember it as if it were yesterday.  I started off the morning exhausted and beyond tired from the lack of sleep the night before.  I was frustrated and completely worn out.  Carol came over to ride with us to Iowa City.  We had an appointment with Dr. O first and then we were to go to radiation.  But that's not the way it would end up.  We went back to the exam room to wait for the dr. when TJ started his screaming fits.  It would start with "I can't stretch" - in a normal tone - to repeating it several times over and over as his voice became louder and louder to the point he was screaming, shaking and beyond angry.  I remember Dr. O's concern.  I think she was about as scared as I was and at a complete loss at what to do.  We tried to go over and do radiation, but it never happened.  Dr. Buatti witnessed what I had tried to explain to him the day before.  All of this took WAY longer than normal and I needed to get in touch with Jon, but we had no reception.  They told us that they wanted to admit him - how they just didn't feel comfortable sending us home.  Dr. O walked with us to 7th floor - PICU.  We were greeted by familiar faces from the first time TJ was admitted.  I broke down - and fell into the arms of Dr. Erin who held me and told me it would be ok.  I sent Carol to go call Jon - TJ was screaming way to loud for me to have any kind of conversation and I didn't want to leave him either.  This screaming and being unsettled lasted for hours.  I remember having screaming fits with him.  He would yell at me for texting his dad.  I would scream back and ask if I could scream too - to his response was NOOO!!!  I have to admit that now - Carol and I can actually laugh a little bit about it now.  At the time all I could do was cry and scream with him.  I had no idea what was going on with my kid.  What were we going to do to change/fix it?  What was causing all of this?  How long was this going to last?  I remember them giving him so much medication that he was basically sedated that the screaming stopped and he fell asleep (around 9-10pm).  We were again exhausted.  What I didn't know then was that we would be staying there for 10 days.  That my son would lose his voice.  That he would be so medicated that he wouldn't even be able to interact with us.  That they would tell us that his tumor was outgrowing his radiation.  That radiation was really making this tumor angry.  That they didn't think there was anything more they could do for our son.  That we would be making so many huge decisions this early on in our journey.  It wasn't supposed to be like this.  This isn't where I thought our journey would lead us.  Everything happened so fast that I don't think I ever really fully processed it.  It is now - a year later  - that I can see how it all played out.  I struggle everyday with the decisions we had to make.  Were they the right ones?  Could/should we have done something different?  If we would have done this - would TJ still be here?  If so, what would he have been like?  I HAVE to keep telling myself that the decisions we made WERE the best ones for TJ.  My 10 year old son couldn't walk, talk, feed himself or even go to the bathroom on his own.  It was as if I had a baby in the house again - except he was as tall as me and weighed about 90 pounds.  Is that the kind of life TJ would have wanted?  One where he couldn't sing, tell jokes, stories and make people laugh?  One where he couldn't dance, jump, run (not that he really liked to) and walk?  A life where he was totally dependent on someone else to do everything for him?  I would give ANYTHING to have him here again.   However, I have to believe in my heart that that kind of life was not what he would have wanted.  I do believe that is why TJ told Jon he wasn't afraid to die because he knew he was going to Heaven.  I got to thinking about that (what he said) the other day.  He said it so confidently - without being scared.  Would I be able to say that if I were in his exact situation?  I still can't fully grasp how he was able to say that.  How he had such peace about it.  He was so beyond his years.  I strive to be like that.  I miss that voice, laugh, and the touch of his hand.  I know his dad misses the way he used to greet him at the door every night he would come home.  I miss his goofiness.  I miss playing Dance Central with him on the X-Box.  I even miss fighting with him about doing chores.  I miss everything about that kid.  I can't wait to see him again in all his glory - dancing, singing and being the TJ I know, love and miss. 

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