It's quiet here this afternoon. There is the sound of a large airplane overhead because the flight patterns for Akron-Canton are often directly above our neighborhood. We've lived near airports as big as Dulles and as small as Leesburg, Virginia and Wadsworth, Ohio and this "noise" comforts me like living near a train during my childhood once did. It gives a rhythm to my day I'm never really thinking about but that guides me through. There are birds outside my window in some kind of chirping duel. It makes me chuckle because I think I know them personally now, my little winged friends who find refuge in feeding condos I have so lovingly developed around my windows in hopes of glimpses into their simple but brilliant lives. He cares for them. How much more does He care for me? There are also several doves who have been cooing love songs to me in these late summer afternoons. I find them sleeping near the corners of our home. There is a steady drip from the girl's bathtub faucet that is so bothersome all other pleasure seems cancelled out by this repetitive sound. It's a metaphor for what living in my brain is like most of the time. No matter what good I am given there is a constant pain muffling the fullness I cannot help but feel. Maybe I could never survive the greatness of it all, and this is my safety net. I understand for sure there are people who live entire lives who aren't able to hear these little things or at least never pay attention to them even once. I know God made me different from first breath . . . from first day . . . for some reason.
Social media has been a beautiful way of connecting me from this bed to an outside world of friends and family and even strangers who become family because we share a strange genetic code and similar lives of suffering. Usually I am in love with watching each of you share your lives in snapshots and words. I have almost made complete peace with the difference between your world and mine. As my "real life" friendships have disappeared slowly over the past few years I know in part it is because people feel so incredibly uncomfortable with putting their happiness and vacations and marathons and zoo trips and even just a walk at the park next to my life. It's unfair, and it really is easier not to have to draw any comparison. I have learned an important lesson of not weighing my space against yours. It's so different it wouldn't even make sense to talk about them in the same vein any more. But, I'm desperate to share in all your good and even your bad. When you see me I may not want to talk about me being sick at all. I want to hear about your son's potty training and your new bathroom remodel and the dinner you had out last week. I want to know what trip you are planning and how your heart really is. I love to hear about your work. Do you know how much I miss being part of an organization and managing projects and accomplishing creative things on a daily basis? I don't want you to feel guilty you bought a new $300 purse when you know I can barely pay for my prescriptions. I want to see your purse! Your car needing a new starter is a huge burden for your family and a skin biopsy for a mole is still something I'd like to pray about and care about with you.
I have to admit I am not scrolling much through facebook the past day or so. There are still a few times a year when it hurts. It just plain hurts to see so many milestone smiles. Delaney began sixth grade yesterday with no mom to kiss her on the forehead and pray her off to school. No one snapped a picture of her in her perfectly ten, almost eleven years of beauty. Her momma was drugged here in bed. Even if I had woken up I would not have been able to scrape my self to any kind of enthusiasm she deserves. Another day with a mom whose neck is cut open again. Another beginning of a school year where she'll explain why I'm not there for parent-teacher open house or be involved in the PTF or sign up for fruit and bagels. She handles this with grace. We talk about how it feels and also how we hope it will get better. Maybe next year it will be better.
Today was a dose of reality for me. Danica had kindergarten preview at 10 am. My dear angel planned to pick us up at 945. The door bell rang and Twixie barked and my little Danica who had been up for hours since Dan and Laney left this morning had a pop tart feast in the sun room watching cartoons and playing Groovy Girls. I pulled myself out of bed to realize we were supposed to be at school. This was the beginning of Danica's school life. This deserved a picture and a caption and a smile. Shaky and sad and so wanting to just not do it at all I pulled my hair in a clip. I wiped my face with a baby wipe and pulled on clothes. Five pairs of jeans later I realize the steroids are in fact some kind of concoction born of the devil. I get my fattest pair of old lady dress jeans on with a jog bra, a tshirt and scarf to try to cover up my hideous neck because I had no time to bandage it and we left. Danica was supposed to have a nap blanket and a buddy. The dog ate a few of her new crayons. I'm not sure how she will survive without a yellow and blue crayon. Forget it all. I have to keep standing up. Let's go. Here's the thing. Any other woman picking me up would have made me crumble in shame because they would not have known how to react to this scene. This woman made me move forward and do all this without talking about it. She could see my wide eyed overwhelmed look entering the building. She could sense my intense fear of getting jostled in the halls. She knew how each step was hurting me. The little kid chair meant for parents while the kids sat on the circle mat was painful for me, but I didn't want to stand either. After some songs Danica's teacher announced the children were going out to recess while she met with the parents. My heart seized. I don't have Danica's plan of physical restrictions written yet. She can't just go out on this playground with her neck. What if someone hits her with a swing? What if she's running on the blacktop and falls? I should have been more ready. I really had to leave. I was sweating in that hot and cold way where you know you might collapse. Danica's dear friend's mom offered to take them for the afternoon to do something fun. Thank you God for a village! She would get the rest of my paperwork from the parent's meeting. My angel reminded me Danica is very self aware. It will be okay on the playground today. We ran into my mom in the hall, and she took me to see Laney for a minute. I hugged my girl. That's it. No pictures. No captions. Just a hug.
Tomorrow Danica will have her first full day of kindergarten. I will make sure Dan physically removes me from my bed and into my chair for coffee. I will kiss them both goodbye and pray with them. I will get ready and head to see an endocrinologist. Maybe, just maybe someone can help me with this adrenal nightmare. A week ago I was in the hospital. I had someone cut open my head and neck and remove big pieces of metal from bone and sew me back up. A month ago I was in the hospital. I had someone cut me four places and put a camera in my belly button and remove disease from my entire abdomen and pelvis.
Every single morning I wake up, and I think this is the first day of the rest of my life. Be better today. Do something kinder today. Pray for someone on your knees today. Walk across broken glass and then make art with incarnadine. Pay attention. Listen. Do you hear it? The details He created for us to notice ARE the life. The soul not one other person might carry today is the one you were meant to love and save. I have tattered quotes everywhere from years of scratching my way to find more truth about how to grab the most important moments. I found it in an old book last night on an aging not so sticky note,
“Listen to your life. See it for the fathomless mystery it is. In the boredom and pain of it, no less than in the excitement and gladness: touch, taste, smell your way to the holy and hidden heart of it, because in the last analysis all moments are key moments, and life itself is grace.” ― Frederick Buechner, Now and Then: A Memoir of Vocation
Thank you God for every moment. Today, with no photos of my girls in sweet outfits headed for sharp pencils and fresh notebooks, You gave us all the amazing ways you really created us to sense the heart of life. Our key moments sing out grace. It's all grace, God. Help us listen more closely to this life, I pray.
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