Let’s be honest

I hate my life sometimes…I mean doesn’t everyone? I don’t know, maybe its just reserved for people like me who are filled with anxiety and struggle on a daily basis. Having a son who can’t walk is a struggle. It changes everything, so many things that you don’t even realize until it pops up and then you are like “oh shit we can’t do that anymore” The pain is real and it spreads like wildfire.

Having two older typically developing boys I want nothing but the best, most joy filled life for them. I don’t want them to be “stuck” with us not being able to do things, or limited to the amount of things we can actually do, because that simply is not fair for them. This is not THEIR life, it is my life and Hut’s life. Yet, last night when a situation arose it made me hate my circumstances of my life, it made me jealous of the “normal” families and it made me wonder what the purpose in this disease is when it finds so many ways to bring me down, but thankfully I walked out to get some air instead of mowing everyone down due to my own sadness.

My older boys have opportunities this summer to go away for some days with other people and they will go and have a great time. I would never stop them from living because that wold just be plain old selfish. Unfortunately it is not that easy for the rest of us. If I am being honest, I want to go and take them to the beach, or take them to the waterfalls, I want to go back to Dutch Springs, or go out in the ocean and ride waves for hours with them like we did so long ago. I want to LIVE and enjoy these moments with them but when you have a child or two with special needs or who can’t walk anymore suddenly all those things become a distant memory.

I don’t want to be bitter but damn its hard not to feel that way some days. Eric and Evan deserve more…they deserve to be free and not be chained up to going places that only a wheelchair can go. They deserve more and they deserve a mom who is happy that they have other opportunities in life to do things that they simply can’t with us. Please God don’t let me become a bitter woman who pushes people away because of my anger and sadness. Please if there really is a God help me see the purpose in this pain and please let me push Eric and Evan away from these chains into the “normal” life that they should be living and that they so deserve!


~ by Rebecca on August 3, 2020.

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