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?
Showing posts with label sad. Show all posts
Showing posts with label sad. Show all posts
Tuesday, March 3, 2009
Monday, October 27, 2008
A smile is worth a 1000 words
This past week I noticed something and its really been bothering me
I am surprised I hadn't really thought too much about it before, but after being around other children all week it dawned on me.
I was laying in bed in the hotel, while everyone else was asleep (Lonnie and Daniel)
and I thought "wow, Daniel doesn't make much sound at all" compared to the other kids,
and I cried for a long time.
I cried because I will never hear Daniel speak. I might hear a word in his language every once in a blue moon. I will most likely never get to have a conversation with Daniel unless he is using his augmentative device. It's not that he doesn't form words, he doesn't even really babble too much. Some days he will, then it might be days again before he does.
When we are in between babbling days I wonder if he is sad. I wonder if he understands he can't talk. All this wondering makes me feel incredibly sad for him. Will he ever be able to verbalize to a girlfriend that he likes her? Will he ever be able to tell me he is scared and if so what of?
Daniel doesn't make the sounds that a normal child of 3 makes, nor does he make the sounds of a younger child very often. He can do it, I've heard him.
He watches my mouth when I talk, he does try to form the words, but his brain just can't send it to his mouth.
bilateral perisylvian polymicrogyria = SUCKY CRAP! This is what causes Daniel not to be able to speak, and no matter what therapy or how hard I pray or try, will I be able to fix the brain malformation. Why does he have it? Fluke? God playing a mean trick? there will never be an answer, but I will tell you it truly is heartbreaking because I know there is so much in this little boy that needs to be heard. I mean its crappy enough that his body doesn't work for him, but he also doesn't have a voice. How many people in his life are going to just ignore him because he can't be heard? Because they can't understand him. Because they feel he isn't worthy of anything because of his disability?
I get all bummed out about this when its quiet in the house, and then tomorrow will be better because I get to wake up and see this
and I know that I will always hear Daniel, and anyone that has a heart will be able to hear him too without him ever saying a word!
I am surprised I hadn't really thought too much about it before, but after being around other children all week it dawned on me.
I was laying in bed in the hotel, while everyone else was asleep (Lonnie and Daniel)
and I thought "wow, Daniel doesn't make much sound at all" compared to the other kids,
and I cried for a long time.
I cried because I will never hear Daniel speak. I might hear a word in his language every once in a blue moon. I will most likely never get to have a conversation with Daniel unless he is using his augmentative device. It's not that he doesn't form words, he doesn't even really babble too much. Some days he will, then it might be days again before he does.
When we are in between babbling days I wonder if he is sad. I wonder if he understands he can't talk. All this wondering makes me feel incredibly sad for him. Will he ever be able to verbalize to a girlfriend that he likes her? Will he ever be able to tell me he is scared and if so what of?
Daniel doesn't make the sounds that a normal child of 3 makes, nor does he make the sounds of a younger child very often. He can do it, I've heard him.
He watches my mouth when I talk, he does try to form the words, but his brain just can't send it to his mouth.
bilateral perisylvian polymicrogyria = SUCKY CRAP! This is what causes Daniel not to be able to speak, and no matter what therapy or how hard I pray or try, will I be able to fix the brain malformation. Why does he have it? Fluke? God playing a mean trick? there will never be an answer, but I will tell you it truly is heartbreaking because I know there is so much in this little boy that needs to be heard. I mean its crappy enough that his body doesn't work for him, but he also doesn't have a voice. How many people in his life are going to just ignore him because he can't be heard? Because they can't understand him. Because they feel he isn't worthy of anything because of his disability?
I get all bummed out about this when its quiet in the house, and then tomorrow will be better because I get to wake up and see this
and I know that I will always hear Daniel, and anyone that has a heart will be able to hear him too without him ever saying a word!
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