"How's Jake?"

In most of our blog posts we have shared updates about our lives, and some insight into how we feel.  It has been a little therapeutic for us to share our world, and more importantly we can open up our world to our friends and family.  It helps to see comments and "likes" on Facebook because we know that people care.  We see that people now take time out of their day to check on our little man and our family's progress.  We've decided that on Facebook we will stick to brief updates and positivity, but on the blog we want to be free to explore our emotions.  We need this as an outlet for our grief, and it is a LOT easier to type these things than to say them out loud.  If you have advice, a prayer, a thought, anything...please share it with us. 

Randy:  In all of this we have still remained a little bit guarded, even with some of our more emotional blog posts.  When I'm at the shop and people ask, "How's Jake?", I usually say quickly "He's good", and then a few lines where I talk about his upcoming treatment or surgery.  I don't make it seem like puppy dog tails and sunshine, but I definitely don't dig down very far to find my answer.  This situation is so unique, so rare, and so terrible that I often hide reality.  If I did open up and explain how I REALLY felt, I would sound like a pretty unhappy person.  I could almost guarantee that you wouldn't want to ask "How's Jake?" again for fear of having to be trapped in that conversation.  I don't want to be "that" guy.

The reality is....this is utter hell.  I hardly know my son anymore.  He's a different boy than the one that was running in the street on October 16th when he collided with Desmond and got hurt.  He is nowhere CLOSE to the same, and only once in a while do we catch a glimpse of how he used to be.  Kait and I have to administer medicine to him every day in the form of a shot that never goes without one of us holding him down screaming his little head off.  He has to drink awful tasting medicine twice a day on the weekend.  He screams and we have to hold him down to get him to drink it and sometimes he just throws it back up.  This medicine will prevent him from catching a nasty form of pneumonia, so he has to drink it.  The rest of the days he take anti-nausea medicine every six hours and pain medicine because the shots make his bones ache.  He's 3 and can't be reasoned with.  He doesn't understand that without all of this medicine his story doesn't have a chance at a happy ending.

Quite a few friends have said "call me if you need to talk"....but what do I tell them?  What do you say when you know that there is no advice.  There is nothing anyone can say that will change these realities.  We are living out our worst nightmares, every parent's worst fear.  We have been thrown into a world that we're trapped in, and there is no exit door. I even hesitate opening up to Kait for fear that it will drag her down even more.

Kait:  I have a lot of anxiety.  I look into Jake's eyes and see fear, pain, uncertainty, and confusion.  I spend the days trying to make him happy while trying not to create a spoiled monster.  I spend lots of time, money, and gas driving to restaurants and buying food for him that he thinks he wants.  Most of the time it doesn't taste right to him and is a waste.  But, I have to try to get him to eat.  He is frail and thin.  Sometimes he stares off into space and I think the emotion on his face is depression, but he doesn't know what that word means.  I think it has to be what he is feeling when he wants to eat something he loved and discovers it isn't good anymore, or he goes outside to ride his scooter only to feel too tired after a couple minutes.  I wonder if the changes in his personality will be permanent...and if they are, how will we know if he is the person he was supposed to be before he went through hell, or the person he became because of it?  Does it matter?  Is it one and the same?

I worry about his upcoming surgery.  What and how much do we tell him?  Should he just go to sleep and wake up not being able to walk and not knowing why?  Will this fact cause emotional problems or trust issues for him in the future?  I hope that since he is only 3 that he won't remember most of this.  I worry that what he does remember is that Mommy held him down when people were hurting him and forced terrible things down his throat.  I googled "how to handle stress when your 3-year-old has cancer, you have a kindergartener, and a baby, and your husband goes to school and works." Even if I break those thoughts up to try for a better result, I still can't find what I'm looking for.  How are you people doing this?  Randy and I both no longer meet strangers eye to eye because we know why they are looking at us.  Why do we care if they look?  I used to be the person that smiled to let strangers know it's okay, to make them feel more comfortable.  I hate to say that I would rather just look down or at my kids instead.  What if I don't have the strength to hold it together?  There is no telling what would set the tears flowing.  And once they start it takes a good while to stop. 

I know there are many people who are in much worse situations than ours.  I can't imagine how hard it must be for them if it's this hard for us.  We said to each other from the start that we were going to share our story, good and bad, to help raise awareness.  When times were rough we were going to be open, even if it meant people thinking less of us.  We are doing the best we can with what we have, and hopefully that will be enough.  Even though this post has not been the most positive, please don't give up on our story.  Please don't read into this blog as us saying our friends aren't helping, because that's not at all what we're saying.  We love all of our friends and family, and you guys are helping us in more ways than we can express here.  Sometimes there just isn't anything you can say or do.....