Well... life is hard. Period. Oliver's health continues to decline. I've been feeling like I'm on the edge of a nervous breakdown. I feel as if I just can't deal with everything that is happening in my life. My mind races with so many emotions that I'm seemingly fine one minute and wanting to pull a 'Thelma and Louise' and drive off a cliff the next. I however wouldn't be flying over the edge in a sweet convertible with a crazy friend... it would just be myself in a light blue minivan. And... there really aren't any cliffs to speak of around here. All kidding aside, I feel calm enough now to joke about things, but really there are times that I just feel like I can't handle all that this life is throwing at us. Most people who know me know that I deal with things with humor most of the time. I think if I didn't I would be bawling every second of every day.
I'm so tired of being angry. I'm tired of feeling lost, alone, confused, exhausted. This has been such a trying time in life. I really hope this eventually has a happy ending. I don't want to be bitter. I don't want to live life jealous of the families whose children have survived their cancer. I want to be happy for them. Happy that their scans say "NED" (No Evidence of Disease). I'm jealous... I want Ollie's scans to show that the tumor has disappeared... that the cancer is gone. I don't want to be planning a freaking funeral for my 10 year old. I don't want to see his lifeless body laying in a child sized coffin. I don't want that picture imprinted in my memory. I don't want to walk into my living room and remember that 'he died here'. It's not fair. It's NOT fair. I don't want to hear, "He's in a better place." I don't want to hear "It's all part of the plan." I'm sick of hearing that. I'm sick of hearing what I 'should' do and how I 'should' feel. I'm sick of feeling like a failure because I have no control over my life. I have no control over what is happening to Oliver. I'm angry.
What is the right decision? We've chosen to have in home Hospice care and have him pass away here, but I don't know if I can handle being reminded that he died in a certain spot in our home, but I know that he is more comfortable here so I want to do what he wants to do. Obviously if there comes a time when he has to be in the hospital, we'd go there, but I just go back and forth with our decision. There is also the hospice house or the hospital, but we also have three other children. I just don't know what to do.
What is the right decision on funeral plans? I don't even want to have a funeral. I hate funerals. I know sometimes they are called a 'celebration of life', but I don't think I'd feel like celebrating anything. We are debating whether or not to have a private funeral just for family and close friends, but then... the people pleaser in me risks pissing off massive amounts of people. Oh well. I need to get over it. As a good friend said the other day... no matter what you do... you can't please everyone... someone is always mad about something. So true... in our own little world... someone is always mad that I gave them the wrong color sippy cup or made the wrong thing for dinner. UGH... life is hard.
Everyone has their opinion and sometimes... I just don't want to hear people's opinion. Maybe that's why I've been more of a hermit the last two years. I'm just sick of the advice people give without me asking for it. I'm sick of all the 'well you should...' and 'I know exactly how you feel...' stories. I know I 'should' have a thicker skin, but it's hard for me to let things just slide off my back. It's so much easier said than done.
Ed is sleeping on the love seat and Oliver is actually sleeping in his hospital bed with his oxygen on. Usually Oliver is on the love seat and Ed is either on the couch or in the hospital bed. Oliver wants Ed to sleep in the living room with him and be around at all times. I can no longer lift Oliver up to help him use the restroom so Ed is here all of the time now. He's almost used up all of his vacation for the year and will be starting his Family Medical Leave soon. Ahhhh... no paychecks for us... fantastic. Yeah... so financially speaking... we are pretty much at a loss. I just don't know what to do. Cash out our 401 k... I think that is the only way we can live for the next few months. Everything medical is out of pocket now for several thousands of dollars and we have to come up with the thousand dollar monthly premiums. Awesome. Then... to top it all off, Ed tells me that you can only have FMLA for like 3 months... so if Oliver miraculously hangs on until May or June, he may be out of a job. I hope they wouldn't do that to him, but they could if he's missed a lot of work. So... mentally, physically, spiritually, financially... I'm spent. It's not like we live in a nice house that we could downsize... we live in 'a bad part of town' and our house payment is less than what we would pay in rent right now for a rental house or apartment that would house us all. I'm just at a loss. Where do we go from here??? I now see why people drink themselves into oblivion. I just want to be numb. I know that it doesn't help the problem in the long run... but man... it would be nice not to be in so much pain and worry all the time. I'm just at a loss.
It's been hard because Ed and I never have time to spend alone because Ollie always wants us near. It would be nice to get to spend some time with Ed and we NEED to get together and discuss funeral plans. I hate talking about things like that in front of Oliver. We need to do it sooner rather than later, but there is always someone around in need of one thing or another. It feels like we've been living in a haze for the last two years. Nothing is ever planned out in stone because we never know what tomorrow brings... how Ollie will be feeling. We just fly by the seat of our pants all the time. I'm so tired of living in a fog, but who knows if life will ever be how it was before. I'm sure it won't be... I can already feel the change. I'm always feeling sick to my stomach just wondering what is around the next corner. No matter how hard I dig my nails in... the inevitable will happen. Life continues to go on.
I started going to a class at church that will hopefully be able to help me deal with certain things. I didn't feel so alone in struggling with certain things in life. I need to learn to give myself a break... to not be so hard on myself... to keep trying... to hold on. I need to be okay with feeling the feelings that I have. I'm angry... okay... it's okay to not like what is happening in life. Hopefully this class will help sort out some things and uncloud things for me. I need all the help I can get.