Tired. Exhausted. Overwhelmed and overcommitted.
I didn't really think it would bother me as much as it does. I knew that people would start to disappear a couple months after Ellie died. But I didn't think I would care as much as I do. It makes me mad that people pretend they are going to be there and now just make half-hearted attempts to support us. Everyone has just gone back to their lives. Which is great for them. That they have lives to go back to. But my life has stopped. I'm not getting my life back. People think that as time goes on, the pain of losing our daughter lessens. That could not be more wrong. As reality sets in, it only hurts more. The less people talk about my girl, the more it hurts.
I am so sick of people that think they understand. Unless your child is dead, you don't get it. Unless you watched your baby's perfect little body turn purple, cold, hard and swollen right before your eyes, you don't understand. Unless you tried to awkwardly hold your baby's unrecognizable body while a doctor clamped off the large lines full of blood coming out of her neck that connected her to the machines keeping her "alive," you don't understand. The only people that understand are the strangers I have met online. It makes me mad that I depend more on them for support than some of those surrounding me.
I am tired of the things people say that they think are helpful. I am sick of hearing "God doesn't give you more than you can handle." This makes me want to scream. I don't fucking care (if you don't like my language read something else) what God thinks I can handle. I am sick of everything being so hard. I am tired. I just want a break. I am sick of hearing how "strong" I am. This doesn't make me feel good. This actually makes me feel bad. It makes me feel guilty for not spending my days in bed sobbing. It provides the assumption that I am ok. I am NOT ok. My baby has been dead for less than five months but everyone wants me to be over it.
I feel like an outsider in my own life. All of a sudden, everything is gone. My Ellie is gone and my Max is gone. Which brings me to my next source of irritation. Autism. I fucking hate it. Unless you know anything about autism or anything about what my life is like on a daily basis, don't pretend like you understand. My daily life sucks. I have a dead daughter and a son that is barely present. Unlike Ellie, his actual body is here, but like Ellie, the rest of him is somewhere else. He is in his own world. He spends all day screaming and being hysterical. Lately, nothing suits him. There is nothing (not even Wonder Pets) that can distract him or satisfy him enough to keep him from screaming. My life is one big trantrum.
For those tempted to make suggestions on how I should deal with this, listen up. You don't get it. My child is not like yours. My child is autistic. My child is not a poorly parented spoiled brat. Your child likely needs a smack on the behind and some serious time out time. You likely need to learn to be an attentive parent. My child needs therapy. Apparently, he needs it five times a week. I cannot turn on the damn TV and expect that whatever mind-dumbing show appears, will distract him long enough to let me get ANYTHING done. Max won't even play with his toys. He wanders around the house with no purpose, and he screams. And he whines. And he hits things and throws them out of his away. My child's mind does not work like your child's does. So unless you have some actual acknowledge on this subject, keep your useless suggestions to yourself. And to those who you say, "You have to remember he's also a two year old." I say, "No, you have to remember he's a two year old with autism."
I can't get anything done. Lately, Max requires 100% of my attention. He does not understand or listen to "NO." He is climbing on things and does not understand why the hell he is falling off and getting hurt. I can't take him anywhere because all he does is scream and thrash around. Carts and strollers cannot contain him. He runs away, without any regard for safety. I can barely have a conversation with another person because my eyes can't be taken on him for one second. If by chance, he decides to stay in one place, he is usually screaming and making it impossible for me to talk with whoever else is trying to eat at the same table. While we are on the topic of eating in public with Max... we can't hardly do that either. Max has no ability to wait. Not because he is spoiled but because he does NOT understand that other people exist besides himself. We can only go places that have allergy information available because he can't eat anything with milk, nuts or seafood in it. We also have to make sure they will have something that is not only allergy safe but Max approved. The list of foods Max is willing to eat is slowly shrinking. Going out to eat is by NO means a treat, break or anything of those sorts. In fact, it's almost a punishment.
Lately, I feel like my whole life is a punishment. For what, I'm not sure. But it must be something big. To have both children taken away must be some form of punishment. Yes, I understand that I still "have" Max, what most people don't understand is we don't "have" Max the way other people have their kids. Everyone seems to be afraid of us. Like our shitty life is contagious. What our shitty life is, is lonely. I feel like a prisoner.
My mind is so messed up, I can't focus on anything. I am sick of everyone's expectations of us. Our lives suck right now. We don't have time to fix with your problems. We are not your parents or guardians. Everyone wanted to be so helpful right after Ellie died, but now it's like almost everyone has forgotten. Almost everyone has forgotten that we still need help. I am barely functioning but I am expected to make arrangements and follow everyone else's schedule. I am tired. I am exhausted and I am overwhelmed. People expect Dave to deal with all their technical problems and anything else he may have been nice enough to do for them before our lives became a dark cloud. Really? We are tired. Offering help isn't enough. I am so overwhelmed that I no longer possess the ability to make plans. If I offer to do this, don't let me. I am not dependable. I will forget. Or I don't have enough motivation to follow through. I am up to my ears in headstones, dead daughter, therapies, and screaming. I really can't take it anymore. I'm pretty sure these paralyzing headaches are a direct result of off-the-charts high blood pressure.
For anyone that may be tempted to ask "should we be concerned for your safety?" Yes, you should be concerned. I think my head will blow right off my neck if my stress levels don't go down a little. And for anyone dumb enough to question whether or not I am suicidal- you should really be more concerned for your own safety. If your child dies, the only thing people are concerned about is if you are suicidal. It's almost like they want to know because if you are then they will have to do something, but if you aren't, then they are off the hook and can go on about their merry little life. I would like to make something clear. There is a big difference between wanting to climb into that casket with your child and actually killing yourself. There is a big difference between having a few really bad days and wanting to kill yourself. I feel like we can't say what we are really thinking or feeling because everyone jumps on the big fucking suicide bandwagon. Yes, I don't want to be here anymore without Ellie. But I don't have a choice. I don't like it. I hate it. But I'm not stupid. So unless you want to piss me off, don't ask me. No, I am not ok but no, I am not suicidal. I am allowed to have bad days. I am allowed to be angry and sad. I am sick of everyone else deciding exactly how sad I get to be. I am grieving the loss of my daughter and dealing with a son with autism- which comes with it's own grief.
I understand that people aren't sure what to say or do. But if you are a family member of friend of someone who lost a child, that doesn't get you off the hook. So here is a link that might be helpful.
Some other things:
- Don't broadly offer help. An open offer doesn't help us. That leaves us making all the plans and arranging the details. We can't handle that. Yes we would like to be notified but not left with all the work.
- Randomly stop by. We are lonely. We miss our old lives and friends. We need the distraction. We just think to ask or it seems to overwhelming to ask. But don't stay super long. It becomes too much and at some point the anxiety seems to go up.
- Know that it won't always be like this. Right now, I have little ability to look beyond my life. I know that, and I can't help it. I am way too overwhelmed. It's not that I don't care, it just doesn't come up on my radar. I still want to hear about your life, you just need to bring it up. I want to talk about my stress, but I want to hear about yours too. In fact, small talk irritates the hell out of me now. So yes, talk about your life- just don't pretend that the frustration of your child spilling their milk is the same as my child dying or screaming hysterically if things don't go EXACTLY as he expects.
- If you didn't say anything to me after my daughter died, don't tell me Happy Birthday. That makes you look like a total jack-ass, which really isn't that far-fetched.
- Remember anniversaries: the day she died, the day she got sick (this day is the worse for me), her birthday. Know that every little holiday is a reminder what what we are missing. We are not only missing Ellie, but Max. Max is here, but he's not. Halloween, Christmas, Fourth of July, etc. isn't the same for us. Max gets NO enjoyment out of such things. And this is just as hard as not having Ellie.
- Things that remind me of Ellie make me the happiest. Most mother's who have lost children feel this way. It doesn't have to be something big, but knowing that someone was thinking our of child is the best gift you can give.
This was definitely a post filled with a lot of anger. And that is how I feel. I will not apologize for it. And I do not want to be told to focus on the happy, positive things. This diminishes how I feel. I don't not want to be told that I won't always feel this way. I know that. But I am angry now. I am angry with people who are supposed to be HERE and aren't. I am angry with my life. And that's how it is. If you don't like it- too bad. I am lonely and dealing with more than someone should ever have to deal with. Instead of getting defensive, I wish some people would just think about how it would really feel to be in our shoes. It's not easy.
And I am tired. I am exhausted. And I am so overwhelmed.