There are so many things going on in my brain, it’s complete chaos. At any given moment my brain could just implode. Not explode. Implode, like the Swan Station on LOST. I feel at times that I am losing grip. Mentally, I need a break. I can’t get that break. Sure, I do yoga and it’s awesome and always amazing. What I need is a week off from my brain. A totally unplugged week where I feel no need to speak to anyone about anything at all. A week where I don’t have to worry about my son, or my life for that matter…
Will I ever get that? Is that even possible? Will I have a heart attack before that happens? Probably. The amount of stress I am under is not normal, and I know I’m strong. How many pieces of straw did it take to break the camel’s back? Will I ever reach the destination that I prepared my life for? Is this some other plan that someone or some higher power created for me? If that’s the case, let me be the one to tell you how much it truly sucks. I’m all for church, and those who believe in God.
I wish I could believe. At times I really do, maybe I could find a reason why someone would wish this life for a child, or for a mother to endure. This feels like more of a sick joke. Like it’s all part of a mental mind game that maybe would be in one of those SAW movies. I’m stuck, I’m lost, and no I can’t escape the escape room. I’m done. Where’s the emergency deploy button? I’m ready to eject myself outta this plane. I knew this day would come. The time when I feel like I’m done, and there’s not much fight left in me.
Then I look at my son and I see he’s still breathing, and wants to live a normal life. Which he probably will never have. Not just because of the medical, but because of his mental health as well. When I ask myself to define normal, I can’t. Maybe his life will end up being cooler than any of us can fathom at this point. Maybe mine will be pretty cool too. We can only hope for that. This is me, giving up. NOT COMPLETELY.
What I mean is, I’m done fighting. I’m just going along for the ride offering him the support and love that he needs. I have come to terms with the fact that Lucas may not survive this. I’m almost okay with that if it means he doesn’t have to live like this anymore. Maybe this is me hanging my white flag from my window. I surrender. Please leave us alone. Maybe it’s time to let go, and let God. Enough with the medicine, and the procedures, and the chemo’s.
We are at the hands of doctors who are the best in the country, and they don’t know how to help him. That doesn’t make me feel good at all. I’m scared that the next step they will want to take is to give Lucas Rituximab. That’s the chemo they said all along that they didn’t want to give him because it can destroy his immune system completely, making him a candidate for a second life saving bone marrow transplant.
DO I REALLY WANT HIM TO GO THROUGH ALL OF THAT AGAIN? This child has autism, and things do not make sense to him. All he knows is medical trauma, and repercussions for bad behavior. He doesn’t know what it’s like to LIVE his life. How as a parent can I keep going on in the way we have been? He’s completely isolated, and he still gets sick, and could die. Honestly when we talk about death these days, it’s almost like talking about skittles. There is a lack of sensitivity around the subject.
It sucks more than any pain I’ve ever felt in my entire life, but to watch him suffer is also just as awful. So what do I do? Keep him isolated, and let them trash his immune system with stronger chemotherapy that will only result in the worst case scenario? Another bone marrow transplant could very well give him cancer, or kill him. Is there a good choice in this situation? I really don’t think there is. Something deep inside of me is telling me to let go and let him truly enjoy what time he has left on this planet.
The other voice in my head says NO, maybe they can save him. Which is what we always think of when it comes to doctors who can fix or cure life threatening illnesses. Maybe Lucas was just meant to have one, and for some sick reason he wasn’t meant to be here on this planet for a long fulfilled life. Maybe I’m insane because I know a lot of you would tell me to NEVER GIVE UP. However, this feels different. I feel like his quality of life is HORRIFIC, and he has NO concept of fun or enjoyment. What’s the point? He’s not getting any better.
His Dad won’t go down without a fight, for sure. But I have to ask myself… Since we do have a choice here. What is best for Lucas? How do they not know how to help him. There’s over 500 email’s about him and his case. From world renowned specialists. If they throw their hands up, don’t I get to as well? My boy needs to know what it feels like to have his toes in the sand, his hair blowing in the wind, and a smile across his face. My boy deserves the world, and I cannot give it to him. My heart is just broken.