Nothing looks the same to me anymore. I try find to peace,faith, something to hold onto but I am empty. I try to care about eating healthy or having a healthy budget but all i can think is that my child is suffering and i cant save him.
I can pretend so well that i am fine. Its almost a game this mask I wear. I seem strong, maybe somewhat capable but I am a mess. it's like I'm numb or cynical but I feel like nothing will ever be good again. I am still so confused that this happening. How can it just happen? This makes no sense to me. How can their be perfectly healthy murderers and sick children in the same world?
I feel like we are being punished for some reason. Nothing works out anymore. I don't even remember what it was like to be normal, to have faith in a future. i was always so certain in my faith, my believe in an afterlife. Now I just can't find a way to believe in a higher power. Okay i guess i believe in a higher power i just don't know how to faith in something that could allow this to happen to my kid. I keep reading that God's plan is perfect but honestly I can't say i get that. In no way can I believe there is some perfect reason for this. I just can't.
Every milestone we pass now is like being punched in the gut. stating a new school year means we are 1 year older, 1 step closer to the inevitable. I wish I didn't feel this way that I could find a way to be happy and content but maybe i am just not built that way.
I feel like a shell of my former self. some days I look in the mirror and the person looking back at me is so tired, not young or carefree but weighted down and filled w/ venom and sadness. Sometimes when moments of happiness strike it actually hurts. it hurts to go through life knowing what I know. I want to give up but i can't because he needs me.
For Robbie, I find a way to fake it when I have to. i fight the battles I have too and keep my broken heart to myself. i talk to his doctors and his teachers and i find a way to keep togethe because I have too. Only here and w/ my mom or shelby do I let my guard down. Only to shelby do I share the dark thoughts the ugly kind the kind that I hate myself for having but can't escape.
I carry on because I have to but i yearn to be normal, to not have an iEP, to have faith, to look forward to tomorrow.
I am amazed at what makes me flash back to this disease. Sometimes we are camping and he is riding his big wheel up and down the road and we are yelling at him to stay out of the way of cars. It almost seems normal except that in the back of my head I an cringing as he takes his feet off the peddles to roll down the hill because I know the steroids cause his bones to loose calcium and I am afraid he will wreck. Or we are buying school clothes and he wears his new shoes and i notice that his heels don't hit the ground when he walks and again I am saddened. Or worse yet watch everyone trip over a root or string and catch themselves as they trip but see him face-plant every time. Or he takes as big a breath as he can to blow out a marshmellow that has caught on fire in the camp fire just not to have enough breath to do it. I think the parts that hurt the most and make it hard to be "normal" are the little reminders of the diseases that only we and those super close to him see. For everyone else viewing from the outside they don't see anything and they look for the big symptoms but DMD just isn't like that, right now the symptoms are all there and constant reminders but they are discrete and it is easy to look past them if you are not in-tune to what DMD is and you worry that everyone will think you are some sort of hypochondriac parents seeing diseases where it isn't, but you can't help it.
ReplyDeleteI want to let you know we are always here for you both no matter good or bad. I can't begin to understand the depth of your sadness but you should know it is very heart breaking for us as well. As I sit here and cry writing this I hope that you both know you should never feel alone you have all of us anytime you need. I am sure it is hard to be possitive sometimes but there is always a bright side to everything. Please don't take this in a bad way that is not what it is ment to be but I think we should all be greatful for the years that we have with such a loving and caring little boy. I hate hearing about parents that only get days or weeks with their children. Never to hear their voice, see their smile or have that wonderful hug you never forget as a parent. The future will be hard for the entire family and we will all share many tears I am sure but please remember that we are here with you on this path. We love you all and anytime you are feeling blue call or text and we will help in any way ( possitive spin, just that sholder to cry on, or someone to vent to) we are always here.
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