I am no hero…
1.Please stop calling me strong. I am not strong. I can’t make it 24 hours without crying. I can’t fake a smile convincingly. Not only am I not strong, I’m not even strong enough to make a pretense of being strong. Nor do I want to have to. I value authentic pain over false pride any day.
2.Please don’t ask me a question that you don’t want to know the answer to. I broke down in public when I ran into someone I hadn’t seen in awhile and they asked how Haley was doing. I never know if people want the honest answer or the polite answer. I never know which to use. It’s like an internal debate every time I have to answer this seemingly innocuous question.
3.Please, for the love of all things holy, please don’t tell me everything happens for a reason. There is no reason compelling enough to watch my daughter endure this suffering on a daily basis. None. Nada. Zilch.
4.Please stop saying God only gives us what we can handle. I’m quite certain most of us have at one point or another felt that he/she waaaaaay overestimated our abilities. I just happen to live in a perpetual state of that.
5.Please stop telling me miracles happen every day. I don’t want to acknowledge that the only thing left is a miracle. Even though it’s true. Hearing that is like a knife wound to my heart- Every. Single. Time.
6. Please stop saying that you don’t know how I do it. Frankly, you would do it too. The thing about epilepsy is that we didn’t get a choice.
7.Please don’t give up on me. I know some days I can’t answer the phone because the tears in my voice are too thick to speak through. Please call anyway. I know I’m juggling a million appointments and obligations and holy cow! Christmas is in a few weeks! Please ask me out for coffee anyway.
8.Please don’t take it personally if I can’t answer your questions or if I answer them too thoroughly. Sometimes I can’t talk or think about anything other than Haley and I’m happy to expound on everything I think I know about epilepsy and service dogs and cannabis. And other days I feel like if I have to answer the same question I’ve answered a million times again my head will explode. If I can’t give you the answer you are looking for, feel free to ask me again another time.
9.Please don’t ask what I need or offer to help me. My answer will always be nothing/no thank you. If you see I need help with something please go ahead and do it. I will be immensely embarrassed that you saw my weakness but I will be humbly and incredibly grateful too. Other people are wonderfully able to accept and ask for help. I am not one of those highly evolved creatures.
The cliches and the platitudes, they are harder than silence. Silence at least conveys the gravity of Haley’s struggles. Let silence be your answer when there is nothing to say. I promise I’m ok with that. And don’t be surprised if someday you ask an innocent How are you? And I can’t hold it together enough to answer. I am broken right now. I’m held together with tape because I’m too tired to find glue and the cracks keep getting wider. And every day I resolve to be better, to do better, to shake the sorrow. And every day I fail a little more.
Every day that Haley lives, I celebrate that she’s alive while simultaneously mourning that she’s had to live one more day without access to the medicine that could be her miracle. After all, miracles happen right? (See #5)