Truth be told. I'm tired. I'm tired of the endless stares from mothers with typical children who so much won't even look up to say hello to me while they sit at swim class knitting and socializing only with each other. I'm tired of the countless emails that I have to write each day to Noah's county services, his durable medical equipment provider. I'm tired of the phone calls I have to make to deal with SSI and Medicaid problems. I'm tired of trying to fundraise my guts out to help my child which falls flat on any attempts I try, either because I'm not networking well enough or there isn't enough help to go around or another child's tragic story trumps Noah's. I'm tired of entering Noah in contests to win adaptive equipment knowing he'll lose, but like a moth to a flame I can't help myself because I feel like I'm failing him if I don't at least give him a chance. I'm tired of the bills I can barely keep up on because I don't know how else to pay for things he needs when insurance says no.
So, yes sometimes I crave just a bit of kindness that I rarely experience.
Yesterday I got our first cell phone charges since switching to another company. Should have been no big deal, our contract was bought out so that we could obtain IPhones - for Noah no less for a communication app he needs. (Every single decision in our lives is for Noah). But instead of getting one bill, I received two for nearly $250 each. When I called to inquire as to why, I was told that there was a mistake in setting up our account and that our lines were not merged into one account. I was asked to stay on hold while they attempted to fix the problem. I was on hold an hour and seventeen minutes, a customer service representative would occasionally get on the line to say "Stacy, continue holding" and then immediately back on hold without any chance to respond. Finally, the customer service representative gets on the phone to tell me she can finally transfer me to someone who can help me (when all this time I thought she was and wasn't.) She transfers me to a customer specialist who says they cannot assist me, that not only will I have two lines but I won't receive any discounts for transferring as promised because of their mistake and they cannot combine them. I ask to speak to a supervisor who confirms the same, yes a terrible error was made but now I would have to pay the price - a big mistake, one with two large monthly bills for the next two years. The supervisor telling me there was only one person *maybe* in their ENTIRE company could fix it and that would be the person who set it up originally, even though they had no information of who that individual was. I told him there had to be more than one person who worked for them that could fix it. He said no and advised me that I should personally go into an outlet store to see if they could help. When I explained that was nearly impossible as I had a severely disabled child on the floor, and the only other person who knows how to care for him outside my husband and I was his grandmother and she's ill, and I couldn't just easily get to a store, he snapped at me and said "Don't Make Me Feel Guilty."
In the end, I did have to go to a store, and no it's still not fixed to my knowledge as I was told someone would be in touch to no avail I'm still waiting on a phone call not holding my breath. Screwed over by another set of circumstances and mistakes that were not of my making.
But here's the thing. When I tell you how difficult my life is, I'm not doing it to make you feel guilty. I'm doing it because I genuinely want you to understand, to say you know I'm going go out of my way to be kind to you because damn you have it rough and why on earth would I want to further contribute to your massive pain? Everyone is so far removed from caring anymore about anyone else. My pain my problem I get it. I have the memo plastered to my head. But that doesn't mean that I don't wish that just sometimes someone would want to go out of their way to be kind or nice or gosh even helpful maybe.
And I'm starting to get really mad about it all, I have no one to help me. There isn't a soul who would dream of helping me shovel my snow, or ask me to coffee or call me and say how are you today? Because everyone is going about their perfect lives. While I sit here saying how did this all happen to me? I'm nearly treading special needs water, and no one cares that I'm drowning, no one even wants to throw me a life jacket.
And PS: My son lost his second tooth last night and thankfully didn't choke or aspirate on it, but I wasn't here to witness it because I was trying to correct a cell phone bill.... but please don't feel guilty.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
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