What I want you to know is that faith is a two edged sword. I rely on it to function some mornings and I feel abandoned by it when things fail to improve. Sometimes I read my Bible and sometimes I can’t look at it. Me and God have a pretty complicated relationship right now. I skip church on the bad days because I wouldn’t want to interrupt the perfect sermon with my imperfect child’s seizures. She lets out a little scream when they start and that might make people uncomfortable. It has been made clear to me that we don’t want the church people to be uncomfortable. I skip church on other days because I just can’t make myself get out of bed. The darkness overwhelms me and the thought of seeing all those smiling faces while I am treading water is more than I can bear. I do wish they would notice my absence though. I’ve been faithfully attending the same church for more than a decade. I have laughed and cried and prayed with those people but I have drifted away and no one seems to be looking for me. I feel like some kind of a leper sometimes, like I remind them that bad things happen even if you follow all the rules. It’s easier for them to push me aside, to think that I did something wrong and let this come into our lives or I am just not praying enough. I’m different. That’s why my world is falling apart. They are all obviously better at this whole Christianity thing than I am so their kids are safe.
Several times, people have casually asked how we are and I have replied with “fine”. Then, I have had to endure long (and loud) praises to God for her obvious miraculous healing that they knew was coming. When I said fine, I meant that we are not currently in the hospital praying to make it through the night. Fine means that today she knows what her name is and who I am. Fine means that she is not on the floor having a seizure at the moment. Or, maybe fine means that I am having a rare moment of normalcy where I’m more focused on grocery shopping than on my child’s impending death. Fine is relative these days. If you would stop to care about what’s really going on, you would know that. But most people don’t care and I am tired of rehashing every medical detail. When I do mention that we are struggling, I tend to get Pollyanna answers when what I really want is a hug and an acknowledgement that I am in a state of pain and desperation that few people understand.
What I want you to know is that I need your help. One of the best gifts since this whole thing started was an afternoon where someone sat with her while I took a nap. She was very sick at the time and I had been up for days and was completely spent. Those few hours where I knew she was safely being watched so I could rest meant the world to me. It would be great to have a casserole waiting when I come home from spending several days in the hospital with her. I have done that for others but we just get the occasional well wish on facebook. Speaking of facebook , I don’t want you to post my little girl’s picture with a sob story for your “prayer chain”. No, a like doesn’t equal a prayer and 1000 of them will not convince God to heal her. What I want you to know is that a friend sitting down for coffee with me would mean more than a million shares of that photo you high jacked off my wall.
What I want you to know is that I completely understand if you can’t help me but please at least give me some grace. Don’t judge me when I snap at something little or look like I’m about to break. I need you to be accepting when I can’t be at every school function anymore. I really need you to cut my other kids some slack too. Our family is in chaos and they don’t know how to handle it any more than their parents do. When they act out, please remember that even good little Christian boys might not always behave like angels while they are watching their sister wither away at home.
What I want you to know is that having being a Christian doesn’t make me super-human. I’m exhausted because I haven’t had a full night’s sleep in months. I’m stressed because I’m watching my family unravel. I’m hurt because the support system that I thought was there isn’t. I’m terrified that I will lose my daughter. What I want you to know is that I’m not as strong as you want me to be. I know I should be quoting scriptures and singing hymns but instead I’m just falling apart. I’m mad and scared and devastated and a million other things. The world is collapsing and I don’t know what to do. I’m waiting on a miracle and hoping that it gets here in time.