There are people who are more aware of the world, in it's entirety, than others. During our last hospital stay, soon after we received news about Ty's progressive disease, I stepped out to use the bathroom and spotted Lou talking with a stranger down the hall. He was gone for a while, and I thought "oh boy, I wonder what that's all about." Later, I was walking down the hall with my sunglasses on - feeling inconspicuous - when I was stopped by the same individual. She was working at the front desk. She told me she isn't looped in on what our child's situation is, but that she felt a strong need to share her own experiences with me. "Here we go," I thought. "What could she possibly know about what I'm going through?"
Instead of something totally irrelevant to my situation, or something religious that may or may not ring true for me, this young woman proceeded to share with me her perspective on life and death. Everything she told me was so perfectly aligned with what I was struggling with in my own head at that exact moment that I have to believe she had some sense of the conflicting thoughts that were racing through my mind. She briefly explained her own hardships and her daughter's poor health. How she has been brought to her knees in sadness, doubt and confusion. She pinched the skin on her arm and she said... "This? This is nothing. We are all so much more than this. That? The sadness that is happening in that room? That is yours, not his. He is so great beyond words. Too great for us to even comprehend." "I know," I answered, and she said "I know you know."
I didn't mention it to Lou because things were so busy when I returned to the room. Later that night he asked me if he saw me talking to a young girl in the hallway. I told him yes, and that I had spoken to her too. "Oh yeah? He said. "I liked her, did you? She said so many things that were so weirdly connected with all we've been through. I feel like she was sending us a message or something." I think so, too.
Ty had a great day yesterday, and a pretty good day today up until the late afternoon. Yesterday his best friend Eva came for a visit (accompanied with her parents who are great friends of ours). Afterward, Lou and I agreed that for all that's going on it felt as nice and normal as possible. Ty was so happy to have his friend over. Of course they couldn't play together, but she brought him gifts and candy and she wrote a note that she read aloud, "To Ty, I love you, Love Eva." Then she added, "I wrote that because I love Ty!" We caught a big grin when Eva was standing in front of Ty on the couch, and then a nice group kiss among Eva, Ty and Gavin (who was dressed up like Thor all day and preferred to be addressed by the name Thor, only).
I mentioned yesterday how I am so worried that I will begin to forget. Then again, how is that even possible. He is part of every single object that surrounds me in this house. I am especially obsessed over what will happen with Ty. To the biological piece of him. When I change his pillowcase I actually contemplate over keeping the dirty one (instead of putting it in the wash) because I don't want to clean it of Ty's physical presence. I took a picture of his feet because I want to still be able to kiss that perfectly adorable freckle on his big toe like I've been doing since the day he was born.
At the same time I am experiencing a very strange need to clean and organize. I don't have time for it, though, because I am so busy caring for Ty, which is stressing me out. When I open the cabinet, for example, I see all the jars of baby food and supplements I bought to help keep his nutrition perfect. Now that I am advised not to use most of it, I feel I just can't wait to get it out of here. I don't want to see these kinds of reminders of when things were better. Reminders that I am not fighting anymore. I took Ty's adorable Calvin Klein underpants out and they have been sitting on my dresser for days. Is it so morbid for me to think that I want him to be wearing them after he dies? I bought a slew of new school clothes for Ty - comfy yet cool stuff - so he can ride around in his wheelchair in style. I put them in a pile to have some one get them out of my sight and return them to the store or give to a charity. He is still here, why am I doing this? It is like reverse nesting and I can't stop this desire to keep cleaning. I hate it, it's not a good feeling.
Please understand that this does not, in any way, mean I've given up hope. There is no such thing as false hope or blind hope - those are oxymoron's. I will hope. Always. But I have given up trying to control this disgusting cancer anymore. I lay in bed with Ty and I recite Psalm 23 because it helps me.
The sad truth about laying in bed with Ty is that I can't really do it anymore. As soon as those arms go around my neck the tears are flowing so bad that I soak his pillow. the poor kid is trying to sleep and I can't get a hold of myself. I keep annoying him by kissing him on those delicious lips. Breathing in his sweet breath and holding it in as if I can keep this part of him with me forever. The night time is when the house is quiet and I am alone in my head. Instead of falling asleep with Ty, I usually sneak off downstairs so I can write this blog or do the dishes. It helps me so much to release some of the thoughts that would otherwise consume my mind when I'm trying to sleep. Then it is easier to climb in late night and get a couple of hours in.
Physically, Ty is still doing pretty well. His eyes are always crossing on and off which makes me sad because it probably limits him as to what he can see - especially when I'm reading a book or putting on his favorite TV shows. He has some very quick upswings where he is filled with smiles and laughter, but those can easily come crashing down at any given time and he is instead riddled with anxiety and he tells us through his tears "I just sad." We are going to try to address this with medicine because he needs to be more comfortable. His pain is under control and it's really not bad all things considered. All in all, Ty is doing well. I am not just being positive. Clinically, he really is doing pretty darn good. I don't usually like to share photos when his eyes are crossed, but this one was just so cute (and it's barely noticeable). He is laughing out loud and pulling his head up to witness whatever funny activity was taking place. This is a very strong maneuver for his very weak neck so you can only imagine my surprise. You never know, maybe he will just get stronger with each passing day and I can't even say I would be all that surprised :)
Goodnight and thank you all SO much for your amazing comments. I promise I read them, and I love them. They are so comforting. I will also try to respond to your thoughtful emails over the course of a few days. Thanks again, it means so much to all of us.