left unsent...

When Brandon was sick (when wasn't he?) I bought a good medical stethoscope so I could listen to his various body noises. I haven't seen the stethoscope for years so I was looking through some of Brandon's things to find it. Looking through his things is not something I do often, so there is always something that surprises me. Today it was an update of sorts that didn't get sent to friends and family in a complete piece, only the first paragraph got sent out originally. So I want to share it now, in its original form and again with notes on what I thought about it today. If you are prone to tears, skip ahead to the second one.

Last night I spent the night in the recliner at my mom and dads house holding Brandon. I didn't get much sleep, but I held my baby all night. It was like he was newborn again, which would be very endearing if it weren't due to his terminal illness. He is so thin and weak that he can barely hold his own weight. His mucous glands are beginning to create more saliva and he can barely make out words that we can understand. It's a heartbreaking change from the child who used to use words like "fabulous" and "actually." He is emotional like a newborn also, but thankfully he can still communicate to me that my breathing bothers him. Did it bother him when we was little too? Brandon would be 3 1/2 in two weeks. I don't think he will live that long. My heart hurts writing this. He has lived four months longer than anybody expected and is still fighting to stay alive. I wonder what about this world is so appealing to him. His hair has grown back, and is a beautiful light brown. Right now it is messy and sticking to his head in weird angles from the night sweats. He is so jaundiced that he looks like he's been pickled. Over the last few days though, his skin has lost its shine and taken on a duller more muted shade of yellow. It is quite a contrast from the deep but lively orange-yellow from last week. He has dark rings around his eyes that tell me he didn't sleep any more than I did last night. He whimpers in his sleep, like the honkers on Sesame Street when they snore, but with a lot less motion.

My office is a mess. The recycle bin is overflowing. I have post-its stuck all over my desk with notes of things I need to buy or do or make arrangements for. One of them is about the transportation of Brandon's body to UCSF for the autopsy. If people didn't know me and read the notes on my desk they would definitely think I was a very twisted person. I have notes about embalming, refrigeration of bodies, distribution of remains, etc.

My emotions are a mess. My emotional thermometer is at the bursting point on a daily basis just from dealing with Brandon. Any little thing that happens above and beyond that is sure to be a crisis. I say goodbye to Brandon every night, just in case. When I leave for work I say goodbye to him, and I always make sure to say I love him and give hugs and kisses. I know that the one time I forget a ritual will be the time that I don't see him alive again and that one fault will stick with me forever.

I feel like I am dying inside. I have actual physical pain when I think about Brandon being gone. I think about the rest of my life, when people ask how many kids I have. Or when I meet somebody named Brandon. Or when I talk to people who have kids the same age as Brandon. I will constantly be thinking about what Brandon would be doing that he won't ever get to do.

I have made a couple of CD's to play at a reception for Brandon after he dies. It is a collection of songs that make me think of him, that he likes, or that bring back memories of his father and I. I'm so relieved to finally be able to get Sean out of my life, but now I can look fondly at some of those times. I wonder how long it will be until my first thought in the morning isn't of Brandon. I wonder when I will stop missing him. I wonder if I will ever meet someone that I will love enough to have another child with. Someone who would be worth the heartache and pain, and the risk of loss. I wonder...will I ever get my shit together enough to make sure Dylan's homework gets done and turned it. Will I ever volunteer to chaperon field trips, or help with class parties, or be involved in the PTA. There are so many things I haven't done because of Brandon. Will I really do those things, or did I just want to because I felt held back?

Whew. That seemed long... Ok here it is with current notes in red, if you are still interested.

Last night I spent the night in the recliner at my mom and dads house holding Brandon. I didn't get much sleep, but I held my baby all night. It was like he was newborn again, which would be very endearing if it weren't due to his terminal illness. He is so thin and weak that he can barely hold his own weight. His mucous glands are beginning to create more saliva and he can barely make out works that we can understand. It's a heartbreaking change from the child who used to use words like "fabulous" and "actually." He is emotional like a newborn also, but thankfully he can still communicate to me that my breathing bothers him. He would yell at me "Stop breathing!" Did it bother him when he was little too? As if he ever got big. Brandon would be 3 1/2 in two weeks. That puts the date of this writing around March 9, 2005. I don't think he will live that long. He didn't He died 4 days before the 3 1/2 year mark, 2 days before Easter. My heart hurts writing this. My heart hurts reading this. He has lived four months longer than anybody expected and is still fighting to stay alive. I wonder what about this world is so appealing to him. Although life is good, I still wonder. His hair has grown back, and is a beautiful light brown. Right now it is messy and sticking to his head in weird angles from the night sweats. Haha, now MY hair is messy and sticking to my head in weird angles from night sweats too!! Poor kid, now I know how he felt. He is so jaundiced that he looks like he's been pickled. He was even a bit wrinkly because his skin was loose. Over the last few days though, his skin has lost its shine and taken on a duller more muted shade of yellow. It is quite a contrast from the deep but lively orange-yellow from last week. He has dark rings around his eyes that tell me he didn't sleep any more than I did last night. He whimpers in his sleep, like the honkers on Sesame Street when they snore, but with a lot less motion.

My office is a mess. The recycle bin is overflowing. Why was I worrying about work? Ugh. Oh yeah, I had to worry about work because I had to maintain health insurance. I have post-its stuck all over my desk with notes of things I need to buy or do or make arrangements for. One of them is about the transportation of Brandon's body to UCSF for the autopsy. Hmm. Turns out I wasn't worrying too much about "work," just keeping the job... If people didn't know me and read the notes on my desk they would definitely think I was a very twisted person. OK, I am a pretty twisted person. I admit it. I have notes about embalming, refrigeration of bodies, distribution of remains, etc. I still tend to have notes about those sorts of things lying around. Sheesh.

My emotions are a mess. My emotional thermometer is at the bursting point on a daily basis just from dealing with Brandon. Any little thing that happens above and beyond that is sure to be a crisis. I say goodbye to Brandon every night, just in case. When I leave for work I say goodbye to him, and I always make sure to say I love him and give hugs and kisses. Then I was on edge the whole time I was gone. It's the only time in my life I was good about having my cell phone on me at all times. I know that the one time I forget a ritual will be the time that I don't see him alive again and that one fault will stick with me forever. Luckily nothing like that happened.

I feel like I am dying inside. I was. I have actual physical pain when I think about Brandon being gone. I still do. I think about the rest of my life, when people ask how many kids I have. A difficult question to answer. Or when I meet somebody named Brandon. And especially when I meet some named Brandon Scott - which has happened. Or when I talk to people who have kids the same age as Brandon. Or the same birthday, or blond hair, or you name it. I will constantly be thinking about what Brandon would be doing that he won't ever get to do. Yep. Constantly.

I have made a couple of CD's to play at a reception for Brandon after he dies. It is a collection of songs that make me think of him, that he likes, or that bring back memories of his father and I. I'm so relieved to finally be able to get Sean out of my life, but now I can look fondly at some of those times. Now, four years later I no longer look back at those times with Sean. Sean who? Much better now that he truly is out of my life. The music is still powerful for me, but it is only about Brandon now. I wonder how long it will be until my first thought in the morning isn't of Brandon. That may never happen. I wonder when I will stop missing him. That WILL NEVER happen. I wonder if I will ever meet someone that I will love enough to have another child with. I had already met him, I just didn't know he would become that someone, or that he would become my husband. Someone who would be worth the heartache and pain, and the risk of loss. He may be worth it, but I still can't do it. I wonder...will I ever get my shit together enough to make sure Dylan's homework gets done and turned in. I didn't, but Dylan did. What a spectacular child he is. Will I ever volunteer to chaperon field trips, (yes) or help with class parties, (yes) or be involved in the PTA (turns out that's not my bag). There are so many things I haven't done because of (caring for) Brandon. Will I really do those things, or did I just want to because I felt held back? Not held back really, just overwhelmed.

All that, and I still didn't find the stethoscope.