Sunday, March 6, 2011

So Tired

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.


Anonymous said...

What you are feeling right now is 100% understandable and expected, and i hope that everyone around you respects that. i do not know you personally (we have a mutual friend), from your blog i can tell you are one of those amazing people. i am not sure how the hell you got dealt these cards, but you certainly didn't deserve it. i think of you daily and hope that although your life will never go back to the way it was, that you get a break and things start turning around.

Erin said...

I won't say I understand how you feel. But I can relate to some of the things you have experienced. I don't know why you have been given such a heavy load to bear. I hope it helps to know that there are people listening to you out here who do care.

Natasha said...

Oh Tiffany....I'm so very sorry that you are struggling right now. I know that sometimes the weight of knowing your child will never be here on this earth again is enough to make you scream- do it if you need to. It is most definitely overwhelming. On top of that you have to manage your little guy and his needs. My heart goes out to you.

Please know that even though I only know you from your blog you are in m thoughts and prayers. I wish I could do more but my prayer for you is that you have peace and strength to carry you on. I hope that things begin to turn around for you and that all those insensitive people stay out of your way. Hugs to you mama.

Our Journey said...

To this day I remember the ONE friends who got it. She was the ONLY friend who would just come to my house at random times and just sit on the floor while I was curled up in a blanket looking dead to the world. She was the ONLY friend who would come and get me and take me to lunch. She was the ONLY friend who gave me new flowers for the house after the ones from Eden's funeral died.
Your right, very few people get the pain. Even thought we all grieve in different ways, it's still grief.
And oh, do I get what you said about being punished...Sometimes I still think that way.
Please know you are not alone. I pray that someone close to you just knocks on the door one day soon, expecting nothing more than to just sit with you. But most of all, in those days and moments when all you want to do is scream, curse or break one more thing in the house (been there) I pray that after its all over, you find peace...if only for a little while.
Love you Tiffany!

ccc said...

Just tonight the thought of "being punished" ran through my head. Not just because of the baby I lost, but also because of my special needs child.

Life can be so unfair. I wish I had the magic words to make it better.

I'll be thinking of you.

Jen said...

Thinking of you. Wishing I had the magic words to make things better, but knowing those don't exist.

Anonymous said...

There are many of us out there thinking of you. Wishing there was something we could do. Remembering your sweet Ellie and sending you oceans of wishes. No one deserves what you are dealing with.

Anonymous said...

I stumbled upon your blog last week and you have been on my mind ever since. The day I found your blog I ended up reading it from start to finish and was up until 4am crying and wishing there was something that could magically take away your pain!

In 2005 my 14yo cousin fell off his bike and into the path of a truck. One minute he was happy & healthy and the next he was gone. My aunt is more like a sister and I stayed with her the first few months. She had many angry days. One day, out of the blue she remembered a time whe she felt a neighbor (who she barely knew) was less than nice to her son. She marched over there and threw a screaming fit on there porch at like 9 at night. They were having this formal dinner party with guests and candles. It was terrible. I kept trying to get her to come home and she would scream at me, too. Her anguish was so intense she would lash out at strangers if she thought they had been ugly to kevin.

I guess I just want you to know that yor anger is justified and normal. I also want you to know that people you've never met are thinking of you, praying for you and want so much for your heart to ache a little less.

Rachael F
Fort Worth, TX

Anonymous said...

I happened to find your blog today, and am so sorry for your pain. There are many parents on twitter who are dealing with autism, as well as loosing a child. You may find more support there than you would think. I work with kids with autism, and know how unbelievably hard it is for parents. Hang in there! Max will develop, and eventually things may feel less overwhelming. Do whatever it takes to get through this time. Blessings to you.

Tabatha said...

Tiffany my sweet friend.. I can't tell you how you spoke directly of my heart.. As you know I recently had a really rough couple weeks.. and people were calling my husband left and right telling him it was clearly a cry for help and I was mentally unstable and needed help.. You are absolutely right.. there is a difference between wanting and yearning to be with them and actually doing it!! People are quick to judge and react to your feelings but slow to REALLY TRULY come to your aid when you need it!

It's funny, ya know.. I have come to find that I think a majority (not all) of people say 'if you need anything, i'm here for you' do it to make THEMSELVES feel better. As if it gives them an out.. they did their due dilligence.. so if we don't call.. than it's our problem our choice. The thing that pisses me off most is when I say I am not strong and than in the same conversation they say, i don't care what you say you are strong!!

My heart is hurting for you.. and you're right, I don't understand not one little bit the life and the load you carry with Max, and I won't even pretend to. But I do know the burden of having a dead daughter.. I just wish we didn't have to fight so hard.. not only are we fighting every day to breathe and keep going in each moment without our babies, but we are fighting to actually grieve out loud.

So glad you posted this. It is good for you to get it out there and good for others on the outside to read it. A word of advise to outsiders.. when we say we don't want something.. we mean it! Don't think you're an exception to the rule.

Thinking of you of my friend.. ((((hugs))))
PS sorry for the novel.. i know that dark space.. and it SUCKS! <3

Anonymous said...

I am so sorry for what you are going through. It really does suck when people who promise to be there aren't. Life is so unfair and people really do not understand. Nothing they can say or do will make the pain go away or make you magically feel better. Even though, you and I were never very close, I think of you every single day and my heart goes out to you. I hope that the people who are close to you realize that you will never get over your loss and wake up to be there for you for as long as it takes!

Jenn said...

I've been reading your blog for a few weeks but have never commented before. I just wanted to tell you how sorry I am for your loss of Ellie and loss through autism you've had with Max. I can't imagine how stressful and hard and full of hurt your life must be right now. Just wanted to tell you I'm thinking of you and wishing I could make it better somehow. xx

The Three Sams said...

Hi...I stumbled upon your blog through the blog of a friend who lost a child as well. That precious Ellie's scrunched brow while sleeping reminded me of my son when he was young as well. This post touched me deeply. Thank you for sharing so honestly and open. I will remember Ellie. I will remember all of the mommys I meet through blog land and all of the babies like your Ellie. They will not be forgotten. Love to you and prayers as well.

My Life with Autism said...

I came across your blog not very long ago. I am not going to say that I know what you are going through with your daughter Ellie, but I can relate to you about the autism. My son was diagnoised in January of this year. I know how hard and depressing when your child is lost in his own world. I also want to say I am so sorry about the passing of your daughter. I am trully touched by the photos you have of her. My prayers are with you and your family.

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