Most people ask me, "How are you REALLY doing?" And I have a myriad of answers. None of them completely truthful as I hold many competing thoughts in my head at all times. So proceed with caution as you read this. It's raw. It's confusing.
Every time Manny stops breathing, it feels like a little piece of me dies.
When he sleeps peacefully, it wakes me up. Why? Because I have had this conversation with God - if You are going to take him, would you please take him peacefully in his sleep so he doesn't have to suffer? And while that is what I want, many times every night I wake up and check to see if he is still with me.
When he cries, I have to go immediately to him. With a "regular" baby, I would teach him that he needs to wait sometimes. But with Manny ... I never want him to have to wait for anything. (That's not possible with 6 kids, but it's my heart to do it.)
When one of my other kids needs me, I'm so torn. I want to immediately help them because I don't want them to every be resentful of him, ever. And they are great, but I don't want to take advantage of their kindness and understanding.
When Manny wants to play even though it's waaaay late and he should be sleeping (like last night at 10:30), I play. I find myself not being able to say, "Go to sleep" because ... what if.
I find myself growing very tired of telling the same story over and over and over again. Like today it was to hospice nurses. And yes, they need to know the whole story. Yes, they need to know where I am emotionally. But every time I tell it, I feel I am re-opening a very raw wound.
I have come to dislike the balancing act I watch people try to do for me (professionals mostly). If I'm not "sad enough" they think I don't have a grip on reality and they say things to make me face reality. If I show any emotion they try to "fix" me and put me back together. I HATE both of those reactions.
I am tired of people telling me how wonderful I am for doing this. I don't feel wonderful. I feel inadequate.
OK ... enough confessions for now. Baby is crying and I have more important things to do.