he's loves me even though I am flawed. I am Mommy even though i can't make this hurt go away. I am tormented w/ thoughts of a future w/o his hugs, a world still spinning w/o him in it. If that days comes I don't know if I will be able to keep breathing if i will have it in me to say goodbye to a child.
I try to accept what i can't change. i try to find comfort in the little things but its never enough. there is a part of me that froze on December 15th and I don't know if that will ever thaw.the world looks different to me. colder, more harsh, I find myself craving winter when the world will look bleak and I will feel the same.
My child is sick in his DNA. there is nothing i can do to change that, its part of him like my eyes and his fathers need to know how things work. i cannot have my child w/o this disease. I would never choose not having him although I feel so guilty that by having him he is sentenced to this disease. i wonder all the time would I have attempted having children if I had known this would happen?
Honestly, i don't know. I can't imagine not being the person to raise these little people but I hate that their world will be colored by this disease. i have faith in my children. the three of them have a bond I envy i was close to my brother growing up but theirs is stronger different. I see Kelsey as Robbie's constant support and Madison pushes and challenges him but she will take anyone out if they give him a hard time.
Robbie will be stronger then I can even imagine. he is not going to lay down he will fight and he probably give us the strength to fight w/ him.
My every view of the world has changed. Some days i don't even know what is that i think. I don't know how to care about an election, or a policy. I just want my kid better. i want to vote for the person that will make this go away. i know it's selfish and I know that i don't care that it is. I know i should be fighting harder, raising more money, but I also know i am a mess right now and i can't do that until i am more together.
The world wants me to cherish every moment I have w/ him but that's bull shit. it is simply not possible to cherish heel chord stretches or steroid swallows. You only say it to someone that is eventually going to lose something. Like if I cherish every moment it will somehow make it less tragic. Now I am not saying i don't file away every single happy moment and hold on to it knowing someday it might be all I have. can you imagine knowing that unless something changes all you would have from your childs life are memories? would you be able to dig deep and enjoy every moment knowing they will end in a horrible fashion?
I'll admit maybe I need some faith but i prayed so hard and i am so angry that this prayer wasn't answered how I wanted it to be. I know god has a plan and all that crap so he gets to do this to my son and I am supposed to bend to his will but i can't. i wonder if God in enjoys doing this to people or is he is hurting w/ me or am i a barbie doll and all his decisions have been made and he sits back watches.
Wow i feel like this all over the place today. I have been all over the place this week. DMD is starting to make is presence known in life our again. appointments, IEP's, i wish I could explain the stress of all of it but its hard to explain. it makes me crave normal whatever that is. it makes me jealous of other people, it makes me cling to food, to watch baseball games that don't matter 3 times in a 24 hour period, I am desperate to just be like everyone else. for Robbie to just be a little boy.
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