Feels like an out of body experience all around, posting this included, but I'm in the shit here and just want to get it out. Hope you all don't mind.My wife and I (both 31) have been together since 19. We went to elementary school together. I dated her friend in high school...I took a few runs at her as well, but wisely, she bowed out. She messaged me out of the blue in 2007, finishing an Arctic Monkeys lyric I'd posted to facebook because I was so. high. cultured. We went to lunch, we fell hard, and it basically stayed that way throughout our 20's. I was lost at various points, lagging behind, afraid at times that I was so in love and so committed, afraid at other times that 20's version of me was in fact me and I wouldn't in fact mature and be the partner she felt I could be. She told me that fear spoke too much for me and learning to face fear and failure was a process and that she'd help me because she was confident in me. She did, and I did!She's an absolute freak. A rock. If anyone persists, its my wife. She's unbelievably good at absorbing the moment. She's talented. A person who works her ass off but whose efficiency in tasks make everything seem trivial. She's just....good. Thoroughly good. Smart, introspective, studious, strong, quick, and bitingly funny. All the adjectives.Our daughter was born in July. Holy shit....what a beautiful, magnificent cliche! Life is so funny like that. I spend my time analyzing every moment needlessly, sure that I'll be the one to experience an historically common life event in yet unprecedented ways. And what happens? I'm bowled over with awe. I'm mush. I'm looking at this conehead kid and high-fiving my wife and thinking, holy shit, everything everyone said was bang on. This is a cornucopia of intensity. This is the love of my life bringing the love of our lives into an exceptionally clean hospital room. This kid won't know such cleanliness soon, let her bask in it.And then some things started happening. 3 months in, my wife starts lisping. You all know too well how draining the early months are. It was weird, but we were just dust....just ground up. And then she starts slurring words, and not sleeping, and unbeknownst to me, her instincts kicked in. She knew something was wrong, so she started documenting symptoms and put together timelines. She went from PCP to OB to Speech to ENT and Endocrine, to Neuro and PT and Chiro, and back again. She went through a battery of tests. It's anxiety! Anxiety does crazy things! You need a little "help." Maybe BF didn't agree? Maybe counseling will fix this? Maybe Lexapro? One ENT (a thoracic surgeon) told us he feared it might be a motor neuron disease. We were floored. He gave us some options to look over, and referred us to a neuromuscular specialist. We dug around on the web, scared ourselves silly, and waited for the appointment.And now it's official. My wife has bulbar onset ALS. It's fucking terminal, of course, and it's also the worst one to have because of where weakness starts. Adding mustard to this shit sandwich is that her breathing has taken a considerable hit (about 15 ticks above needing a vent full time) and her right hip is giving out, making walking more and more difficult. She's ~15 pounds since early March. This seems to be going fast.And here's the thing. We have a great support system. Our parents are all alive and present and involved. They've been kind enough to divorce and re-marry over the years, multiplying for the benefit of their children (HA)! Our friends are fantastic people, and there's been the requisite gofundme set up to help us out, spearheaded by my wife who worries about me and the chubster when the time comes. We have extremely caring, specific, qualified help in our corner...a testament to the strength of the bonds we've been fortunate to create over the years.But I'm [secretly] a fucking wreck. I think I've successfully fooled people because there's so much to do and I'm staying busy doing it. It's almost exhilarating to have so much to do and manage, by the skin of teeth, to get it done. That way, I don't have to think to a level that paralyzes me. I'm a pretty open dudebro, so burying things really isn't my style. I'll tell you if you ask me: this is horrible and it could put me down on any given day.That's not the whole story though. You can't tell the whole story...things don't flow that way. The whole story is that I know that my life will be spent trying to strike a balance between showing my daughter how much her mom loved/wanted to be with her with how utterly broken I am without mommy but not present so outwardly broken that it affects daughter negatively. I hope that will come with time.The only thing giving my existence meaning is how strong and present my wife is and how incredible it feels to be a father to our child. To have a part of her with me for the rest of my life. To look at my daughter and see my wife's big, round, blue eyes. People tell me how hard this must be with a baby, and don't have the heart to tell them that without her, losing my wife would very likely do me in.My face hurts and I'm out. Thanks. via /r/Parenting http://bit.ly/2WravBF
No comments:
Post a Comment