I have to apologize...I realize that most of the time my blog posts are bitch sessions....if that bothers you....best thing to do would be to hit "back on your browser".
Randy: I wish I never knew about pediatric cancer. I mean that...I really do at this point. On October 15th we were shown the door...and it looked scary enough just peering inside for a few seconds....then on November 5th we were shoved through and the door was locked behind us. I've learned more about myself, our society, and people in the 5 months since that day than the 33 years that preceded it. These have been both good and bad lessons, seeing the best of us that I talked about back in December, and seeing some less than desirable behaviors. People being incredibly generous, both with assistance and more importantly time. People willing to put their own lives on hold to help our family enjoy some slivers of normalcy. I've also seen people withdraw from us, whether because the friendship wasn't very strong to begin with, or the fear of not knowing what to say or do.
I can give a piece of advice....not knowing what to say and saying the wrong thing is WAAAAYYYYY better than disappearing when your friend needs you.
I wish we had never been shoved through this door. I wish I could go back to October 14th....and be ignorant to this world. I wish Jake had just simply broken his leg....how great that sounds now. I remember thinking that Saturday night "wow how awful if our little boy fractured his leg?"....lol...yeah that would be horrible now. Now I get to watch Jake, Ethan, and Aubrey get robbed of a normal childhood on a daily basis. Jake now has completely irrational anger, Ethan is acting out, and Aubrey is just too young to say "hey why the hell is my brother always crying?"....but I'm sure she is thinking it.
I used to cry a lot....it helped. When I felt the need I had some things that would bring the emotion out. The song by Phillip Phillips "Home" was my first outlet. As time has passed I learned the story of Anna Basso, who courageously fought Ewing's only to succumb to this piece of shit disease before her life could really get going. Her favorite was "Float On" by Modest Mouse. That is my favorite song to run to, and it was the song I chose to have playing when I finished the half marathon in March. None of these work now....I honestly feel like I need a good "release" on a regular basis...but the emotions just won't come out anymore.
I want to yell....but nothing comes out....
This is taking its toll on me...my marriage....my ability to concentrate....my health. I don't eat well anymore...I drink more than I should....I don't sleep enough....Running used to be my outlet...but I can't seem to stay healthy long enough to keep that hobby up. I get angry way too fast now....I threw eggs all over the kitchen and then promptly put my fist through a wall this morning......really? Am I fucking 14 years old...? How pathetic do you have to be to take your anger out like that??
I know that which does not kill us makes us stronger...maybe this is killing me?
Is it okay to feel angry...? Okay then....FUCK YOU CANCER!!!!
Sunday, April 14, 2013
Monday, April 8, 2013
Under the weather
Kait: Jake wasn't feeling well on Friday so he wasn't able to come to The Color Run with us on Saturday. He has had some pain in his bottom but didn't have a fever until today. He woke up with a fever of 101.8 which is very dangerous for him. He is considered "high risk" so they put him in a room at the emergency room right away. Kind of like an ER VIP. They did a chest X-ray because he has a little cough and swabbed him for strep. Both the test and the X-ray came back normal so we aren't sure why he had the fever this morning. They have given him two antibiotics, one of which targets the intestinal tract so that if he has a tear in there he will be covered. He is being cross matched right now to receive a transfusion. His white blood count was .34 this morning, platelets were 6.7 and ANC was 320. All of those numbers are low. They aren't as low as times before when he has been admitted so they said we might get to go home on Wednesday. If his counts recover enough then he could possibly still get chemo on schedule this Thursday, but that is a wait and see how it goes type of thing. I wouldn't want to be in the hospital for a week straight, but I also don't want to delay his treatment. So, like usual, we are at the mercy of this cancer...more specifically of the treatment. There are so many fundraisers and charities working hard to raise money and donate for research, it just gives me hope that there has to be better treatments on the horizon. I know not for Jake, but for the countless others who will be diagnosed after him. Hopefully in the future the treatment for Ewing's will be just an inconvenience instead of a life changer.
There are two things I want to mention, one of each coming from my Dad and from my Mom and both are related to faith. Two days before Jakes's limb salvage surgery we went out to eat at my favorite restaurant. We wanted to enjoy a relaxing dinner together before our worlds would change once again. Sometimes I can't think of anything to say. My brain is tired and I often just sit and stare into space. Apparently I was doing just that and must have had a certain look on my face. Dad got up (visibly upset) and went to get some fresh air. He went out front where a man stopped him. The conversation went as follows:
The man: "sir, is everything alright?"
Dad: "no, it's not".
The man: "what can we do to make it better?"
Dad: "nothing. Actually, you can pray for my grandson."
The man: "then I'll do that"
Dad began to walk away and turned to look back at the man but he was gone. Nowhere in site. Only now Randy was walking toward him. The story gives us chills. How often does a total stranger stop another person to offer comfort? And the fact that he just disappeared? A guardian angel, perhaps?
I mentioned in a previous post that I keep reading the stories of other children who have lost their lives. I was following one particular story about a baby named Heaven. She was diagnosed with PNET when she was about 8 months old and fought it hard. At 12 months she was struggling and put in hospice care. The family went for days, maybe weeks expecting her to die at any moment but she kept fighting on. Finally at 13 months old she passed away. She was barely older than Aubrey. I was telling my Mom about Heaven and asked her why God would put her family through the heart wrenching days leading up to her death? Why would God let her suffer that way, let alone her family? Why prolong the pain and misery? Mom said "it was explained to me best that life is like a tapestry. But we are living on the other side of the tapestry- it isn't beautiful, there are strings in knots and out of place. We can't see or understand the masterpiece on the other side." Maybe these hard things happen so we can learn something. Maybe so that we will come closer to and trust in God. Maybe we aren't meant to know the why. Every time I read about a child who is losing their battle I think of the tapestry. I hold onto that idea because I can't handle the thought that all of these beautiful lives lost are for nothing.
There are two things I want to mention, one of each coming from my Dad and from my Mom and both are related to faith. Two days before Jakes's limb salvage surgery we went out to eat at my favorite restaurant. We wanted to enjoy a relaxing dinner together before our worlds would change once again. Sometimes I can't think of anything to say. My brain is tired and I often just sit and stare into space. Apparently I was doing just that and must have had a certain look on my face. Dad got up (visibly upset) and went to get some fresh air. He went out front where a man stopped him. The conversation went as follows:
The man: "sir, is everything alright?"
Dad: "no, it's not".
The man: "what can we do to make it better?"
Dad: "nothing. Actually, you can pray for my grandson."
The man: "then I'll do that"
Dad began to walk away and turned to look back at the man but he was gone. Nowhere in site. Only now Randy was walking toward him. The story gives us chills. How often does a total stranger stop another person to offer comfort? And the fact that he just disappeared? A guardian angel, perhaps?
I mentioned in a previous post that I keep reading the stories of other children who have lost their lives. I was following one particular story about a baby named Heaven. She was diagnosed with PNET when she was about 8 months old and fought it hard. At 12 months she was struggling and put in hospice care. The family went for days, maybe weeks expecting her to die at any moment but she kept fighting on. Finally at 13 months old she passed away. She was barely older than Aubrey. I was telling my Mom about Heaven and asked her why God would put her family through the heart wrenching days leading up to her death? Why would God let her suffer that way, let alone her family? Why prolong the pain and misery? Mom said "it was explained to me best that life is like a tapestry. But we are living on the other side of the tapestry- it isn't beautiful, there are strings in knots and out of place. We can't see or understand the masterpiece on the other side." Maybe these hard things happen so we can learn something. Maybe so that we will come closer to and trust in God. Maybe we aren't meant to know the why. Every time I read about a child who is losing their battle I think of the tapestry. I hold onto that idea because I can't handle the thought that all of these beautiful lives lost are for nothing.
Subscribe to:
Posts (Atom)