today was church. dad is out of town, so i am solo today. he is enjoying the beach and his family, who we live too far away from to visit with any regularity. i dropped off the oldest son and our onliest daughter in the alley next to the building so she wouldn't have to walk too far. walking makes the spasms in her vocal cords so much worse. she coughs eternal, it seems. this is new territory for us. way different than last years coughing spells. last year, when she stopped moving, the coughing ceased. now she can go for hours coughing at a rate of 60 coughs a minute. these episodes scare the crap out of me. this morning was no different.
we showed up to Sunday School at 10, ready to go, and coughing all the while. i had a quick discussion with her sunday school teachers, explaining the condition "Vocal Cord Dysfunction." i feel like i am talking into one of those microphones that alters your voice to sound like a circus tent announcer from the looks i receive. but they are gracious. most in the church are sympathetic pray-ers for my daughter, esp after i wrote a letter about 1.5 years ago to the congregation about the stinkerbell's asthma struggles. she coughs, it's her norm now, and we just have to go on with our lives.
Sunday school went relatively well. the kids in her class (it's a small one) are used to her wearing a mask and don't skip a beat. she is pretty comfortable there. as her teacher said "she handles it really well." i am the one who handles it poorly. i hate seeing her cough and miss out on stuff or get looked at like she has some contagious disease.
church is another matter. we sit in the side room so that we aren't disturbing the quiet of the sanctuary. there are open arch windows between the two halls, so people can still hear her, just not as clearly. one lady gets up from our side and moves to the other room during the opening prayer. i guess the noise is too distracting for her. most, again, are generous. we get lots of "poor thing" and "we are praying for her" and "have you tried (fill in the blank with whatever is the latest oil trend)?" it gets exhausting and after we leave the sanctuary, i have to go to the bathroom to cry.
i so want this to be done. for her sake. it is exhausting for her little body physically to continue coughing with this intensity and regularity. it is exhausting for us as a family to keep explaining. to pretend the whispers and stares don't matter. to wait not knowing what will work and what won't. to realize i have been holding my breath when she coughs because i don't breathe until she stops coughing. it is exhausting not knowing what will set it off next time. it is exhausting waiting for the next next time.
Sunday, May 22, 2016
Friday, May 20, 2016
It has been such a long time since I put any thought to paper (blog). Several years, in fact. I don't even really know where to start, except with right now. The Here. Which is so flippin' scary. Life has thrown us so many curveballs, small and big, and we are just hitting foul balls left and right. We continue to homeschool, work, and try to have a home life of some kind. but it is just so difficult. What's on my mind, right NOW. Here? My feelings are hurt. Not because anyone hurt them, but because I let them be hurt. I desperately need a friend, a confidant. I thought I was doing ok in this department, but the friend that I thought I had just isn't as much in need of friendship as I am. Does that make sense? How pathetic is that. I would like to be that friend, the one who gets called when things get crazy, that brings the margaritas when someone else's sh*t hits the fan. But I find that I need someone to be THAT friend to me, not the other way around. But everyone else is so caught up in their own rotating blades that no one ever talks at all. Or drinks margaritas. This motherhood thing keeps getting harder and harder. Pretty soon all my chicks will be out of the nest, is that when I will have time to be a friend to someone and have someone befriend me? I can't wait that long.