Tuesday, March 3, 2009

A bad case of guilt, why's and the what if's?

When does the overwhelming guilt stop?
When does the feeling of helplessness lessen?
When does the "what if's" go away?
When does the questioning yourself of "why this is happening to us? we're not bad people.."

Today I dropped Daniel off for school. In one part of my head I know he enjoys school, his teacher, and learning. He thrives on learning, show his a flashcard, ask him where colors are, spell something to him and he is hooked on you and does not want to stop.

In the other part of my head I wonder if he is thinking, "Why is she leaving me? Doesn't she want to be with me?". And I feel like I am abandoning him. I say bye bye to him and I'll see you in a while and he just looks at me with those big brown eyes. I am assuming he is ok with all of it.

But maybe he's not, he can't voice his opinion. Some people say if he wasn't happy he'd cry. Maybe he knows that his cries don't do any good and I won't understand him. Maybe he just sits in his wheelchair and thinks.."I can't say anything she doesn't understand that I don't want her to leave."

I don't know why today it hit me hard. Today was no different that any other day except that I cried all the way home. Just have this knot in my stomach, of this big ball of guilt. Guilt for not protecting him from all that is harmful, from not keeping the monsters away, for not keeping him healthy, for not doing everything humanly possible. Guilt for making him suffer with this brain malformation. Maybe if I had done something different when I was pregnant. Ate better, took better care of myself, if he felt loved enough, if I did something and this is suppose to be a punishment for me but God is making my child suffer instead. I know in my head that there was probably nothing I did wrong, that it was just a fluke. But there is always that little part of my brain that is so strong and it over rides all the other areas and says I am to blame. That I did something to hurt him, and now he must suffer his whole life.

There is the guilt that I don't do enough for him in the day. But I am torn between getting him all the therapies possible each day and just letting him be a little boy. If I let him be a little boy and watch tv or play with him, I feel like I am holding him back and if I put more hours of therapy in, maybe he would have been walking by now. Maybe he could talk more if I spent more time trying to get him to say words. But I don't want to constantly be asking him to repeat words because I don't want him to get frustrated when and if he is trying but it just doesn't come out. I don't want him to think I don't love him/like the way he is, because I do.

Maybe all these things I want for Daniel (walking, talking..) he doesn't want to do and when I push him during therapy, he is thinking I don't accept him? But if I don't push him, will he think I give up on him?

When does the guilt and the questioning of "why" and the "what if's" go away?

9 comments:

Susana said...

Dear Melanie,

I can't fully relate to you, but what I can say is this. Today, at 33, my family struggles too. I am not the person they wanted, expected to see, etc. etc. and my adoption and life up to this point has in turn, made me feel just as bad. However....I have no blame game stuff going on....no more angry lashing out....I keep everything tucked in, because it's what they desire. I honor them this way. See, speak, hear nothing from her, and we as a clan will be just fine. Walking and talking are now my most despised things. I thought that once I did all this and more....they would learn to see that I am always going to be disabled, mentally, physically, and otherwise. I know every parent on this earth desires to have able bodied families, and no one wants a child with special needs, or even an older child. All the moms I talk to want perfectly healthy babies. They see me as a woman who is totally alien to them. Even the doctors and nurses who see me as an adult still see me as a child who needs to grow up....and be able bodied instead of disabled.

The war you are facing will never stop. The roles we all play in this life are never going to end. Parent, child, professional people, anyone....and the last thing that needs to happen for you and Daniel is any type of blame. Hell is where I sit. This is not just according to me or family. Every person who sees me sees "wrong" stamped on every inch of me from the inside out.

I isolate now more than ever because I need to. I can't face people who refuse to see me. All of me. This is not easy, nor is it all happy days. But I work just as hard as the able bodied creeps in my life who tell me I should be doing more.

When they live the life I do, body, mind, and broken spirit, then they can judge me. Until then, I simply say to them....men, women and children....if you don't have anything nice to say to me, don't say anything, and don't expect me to.

This is a two way street. I love me. I accept all the stuff that I have. Year after year, I get progressively worse, because I age 2 times faster than someone without Cerebral Palsy. But the kicker they will never really grasp is...I never complain.

And as for the broken spirit....my mental state being DID and all.....will forever be shattered. And I'm okay.....okay with the fact that my brain has had more stuff piled inside over 32 years that I go nuts trying to forget everything.

People will always hand you horrible things towards you and Daniel. Our society is conditioned to hate those that are different.

Having seen hate crimes in my state, and having been a victim of several within the last 3 years, I know this from experience. People hate. And no matter what you do to change you, the hate will just grow with something else about you.

I hide. I hide behind smiles. I hide behind laughter. I make people think it's really okay. Because I know they just don't have what it takes to "get it" and I'll probably be dead and gone by the time that wake up call gets here. Most think I am suicidal. This is something I have dealt with since age 12. Losing classmates all the way through school....keeping my head up....knowing this is not something I want....and yet, they still think it....that, my dear, is what sickens me most. Weak, strong....no....it's called life. You have birth, life, death, and rebirth. And if society is smart, they'll see this. And they'll learn that no matter what, I plan to live the best life I can. When I turn 40 in a few years, I hope to be in Europe on a nice getaway. Till then, I sit in the stillness of life, and let my heart remain open and accepting of the one person I have always loved, and will keep loving for all eternity....me.

When the world turns its back on your son, on you.....he can look to you and say, hey, mom, I still love me. Self love, self acceptance. These are what pull me through a 24 hour day, 7 days a week. I need nothing else.

Let me know how you feel and what you think after reading this note. No thing worth having in life comes easy. That's why I value my simple life.

Take care, and know I am here for you and Daniel. Hold on to your self love and self acceptance, and see where he is with it. I guarantee you, this is the best gift the two of you can ever have in life.

Bird said...
This comment has been removed by the author.
Bird said...

Whenever I get in this mindset I just remind myself that this is not my journey. That's what helps me.

Stop beating yourself up. You are an amazing mom and maybe that's why you've been entrusted with Daniel--because he needs an amazing mom!

AshleyS said...

I often cry after dropping Clayton off at school, and it can be any old day when nothing special has happened. And then I just count the hours until time to pick him up and try to make up a reason I need to go get him early! Glad to know I'm not the only momma feeling guilty!

terriblepalsy said...

I actually agree with Bird. This didn't happen to me, it happened to Moo. And whilst it is incredibly unfair and the rest - I have been incredibly fortunate to be his proud mummy.

The why's and the what if's do eventually turn into occasional whispers.

TMI Tara said...

I have been feeling very similar feelings recently. I can't seem to find the balance between accepting Chloe exactly as she is and pushing her to reach her greatest potential. I have a feeling, though, that all we really need to do is love our children the best way we know how, and the rest will work itself out. There is a reason God gave us this charge and blessing.

Justinich Family said...

It is so hard to know what our kids are feeling and what they are frustrated about and how they feel when we leave them. I take Evan to a special needs daycare that is paid for by Medi-cal, it is basically a break for me. I take him once a week for about 4-5 hours and we took him there when we had a funeral to go to. But a few times he has cried when I dropped him off and then he is so excited to see us when we pick him up. This is not an educational place, it is basically a safe place for Evan to be. All of the staff are nurses so if he ever has a seizure or any other emergency they are able to handle it. But I often feel guilty when I leave him because it is not like it is school it is a place for him to be so I can have a few hours to myself.
And regarding therapy I feel really guilty because all of these other moms and families are doing alternative therapy with their kids and I kind of thought Evan did not need that because he is walking but I really started researching and I want to get him into conductive education and HBOT but how am I supposed to pay for this stuff. It is so hard to balance the therapy vs. letting the kids just play. I think we all go through the guilt and play the what if game. I imagine all the time when Evan is talking to me in his own little way what he is really telling me. Hope you feel better soon.

Big brother, Little sister. said...

Melanie, I am not sure if the guilt ever goes away, days just get better and the moments are few and far between. When they happen ride with them and I find if I go and do something fun with Cooper it helps pick me up instantly! oh and chocolate too! and yes it starts to get to a point where it is about them and not you as such. thinking of you xo

C said...

Aw, geez, Mel. I'm sorry you're feeling so crummy. I know it ebbs and flows and that it doesn't rule every little thing, but it sure can color how we think about stuff.

I think the most helpful thing for my mind set so far has been to view this from Q's perspective: he loves therapy. He loves his sibs. He loves chocolate. He loves to do stuff. His experience is what it is, and it's my job just to facilitate him the best way I *can.*

I'd love to be doing alternative therapies with him -- things that would help him hold his head more easily, swallow with less risk of aspirating, get those fingers out and use them. But. I cannot afford to. I have only so many hours in a day, so much money in the bank account, so much of myself to spread around. I've had to sit back and look at the big picture (since my punkins are younger than yours and don't drive themselves places -- darn it!) and figure out how to use what I've got. It's just me. Me and the therapists and whomever else may have time to drop in and help that week and all my lovely internet friends. But the work? It's me.

I concluded that I truly just do not have time to worry about it and I now find myself rejecting those thoughts the instant they begin to enter my head. Will I get everything just right for him? Heck no! I won't for any of the kids. (It's why I have a therapy fund -- life insurance.) But we keep moving, keep thinking, keep sharing with each other.

Steven Covey put out a tape, years ago, called "How to Write a Family Mission Statement." He describes how pilots fly their routes, that they are *off course* about 90% of the time! 90%!! But they check in with their flight plan, their co-pilot, the towers, and they make small course corrections until they get where they're going, most of the time right on schedule.

This is one of my favorite stories because I often have chunks of days, sometimes chunks of *weeks* that seem just plain insufficient in every single way.

And yet.

Q rarely misses meds. Not even by so much as a half hour. He almost never misses therapies. The big kids continue to learn and do and be. They have great friends, good life skills, and enjoy their piano and violin.

Stuff. moves. on. I often have no idea how it happens (I'm pretty tired), but it does.

I still don't have the boy in preschool, though. Honestly, I can't figure out how I'd fit the time for transportation in, much less attend to any of the other details that are weighting my decision.

Oy.

I wish you peace, dear mama. Let go whatever you can. Make it a mantra. He's having a pretty spiffy life, you know. And you're making it happen for him. Take the good stuff, knowing that there's plenty of work ahead, and breathe through the rest, like labor pains. You're awesome. Focus *there* and don't let the guilt eat up the good stuff. Remember that God doesn't play those kinds of head games.

::Smooches::
C