A bowl full of worry with whipped cream and a cherry

Our time in Long Beach is flying by.  We are squeezing in as many visits with friends and loved ones as possible, while Lou and I also try to take some time for ourselves to walk the boardwalk or eat some pizza uninterrupted.  It’s been a very nice break from everyday.  Ty has been doing well at the beach, too.  Much better than last year because he is willing to go out on the sand and spend some time there.

We were able to prop him up in a chair and he seemed to enjoy just watching the waves.  We just have to be extremely careful about sun exposure because of the Accutane he is on.  Gavin, of course, couldn’t love it more.  These great days at the beach are the whipped cream and cherry sitting on top of our bowl full of worry.

While we are so happy to be here, and Ty and Gavin are clearly enjoying themselves, this week has still been filled with ups and downs.  Ty has had head pain that required morphine three times.  His eyes are crossing on and off again.  He is very physically uncomfortable at times.  Our heads are spinning every day, unsure if we should be doing something – taking him into the hospital.  But then he usually improves, his eyes will look better, and we start to exhale.  Until the next episode. 

I can’t explain what this feels like.  After two hours of lying with him this morning, both of us crying because of his head pain, I walked into the kitchen and toasted a bagel for breakfast as if life is normal and I should eat breakfast.  I stood there like a zombie, unemotional and spreading cream cheese thinking how bizarre it feels to fix myself something to eat while Ty is hurting in the room next door.  All morning poor Gavin has been busy entertaining himself (as he learned to do so well), because neither Lou or I have the energy to play with him when we become consumed with worry or sadness.  I keep hearing him tell Woody that he wants to take him outside to play, but I can’t seem to pick myself up, get dressed and take him out there.  I just want Ty to be better.  That’s all I ever want. 

My faith and optimism is being challenged.  My mind is playing a lot of tricks on me, and I feel like I have no control over the thoughts I’m having lately.  I sit with Ty and I beg God to relieve him and free him of his pain – but then I immediately retract my statement and clarify that I don’t want death to be the answer.  That I want him to live a wonderful, pain-free life here on Earth – with ME.  I don’t want God to misinterpret my thoughts and prayers.  I panic because I used the words “free” and “relieve him” which are so commonly associated with death and moving on.  I am not okay with that.  I never will be.  Ty is a fighter and I don’t care if heaven is something we should long for… I want him here with his family, growing up and enjoying life.  Doing the amazing things as a young man that we all know he is capable of.  I need to get control of my thoughts and stop making myself so crazy.

I’m scared.  It was only two weeks since yesterday that we were in the hospital for an emergency MRI due to head pain and vomiting and everything turned out fine.  What is going on now??  Lou and I actually think he may be having issues with his shunt again.  The stress level we are experiencing is indescribable.  We want to make pretend vacation is all fine and good, but we are also aware of how dangerous it can be if we ignore these recent symptoms.  Lou is looking to arrange for a scan locally, just to check his ventricles and make sure hydrocephalus isn't building.  We will keep you all posted.  Thank you for your thoughts and prayers.  Poor Ty.  Such a fighter.  Life is so unfair.  Cancer is the devil.