No one told me how brutal the first month with a new baby can be. I asked one of my friends why she hadn't warned me and her response was, "I didn't want to say anything in case your experience was different." There were days where all my daughter wanted to do was feed. She wouldn't sleep or let me put her down, and the nights weren't much different, so I was exhausted. There were days when my precious husband would get home and hold her for an hour or so knowing she was going to cry but knowing also that I was desperate for a shower and a nap. I see a lot of people post about postpartum depression. I don't think I had that, but I know I was extremely exhausted and underfed (I was literally too tired and busy to eat properly). Pair that with the hormones of after birth and breastfeeding and it was a definite struggle. Cue a diagnosis of ocular histoplasmosis to really break a girl down. The day our daughter was born, my husband mentioned a black spot popping up in his vision. We'd been up for over 24 hours due to labor and everything, so we both just thought he was tired. After a few days with no change, he made an appointment to get it checked out. Loula was born July 26; he was diagnosed August 1. My first reaction was praise God it isn't a brain tumor. I read his texts and listened to him explain this weird disease to me and was ok at first because, yay, no brain tumor. That night while he slept I decided that 3 am, while feeding my daughter for the 29th time that day, was the perfect time to research this disease. I read things like "incurable." "Leading cause of blindness in people ages 20-40." "Disability." "No central vision." It was just a super positive experience overall. I ended up getting in my car because even after both breasts were empty my child continued to cry cry cry so we drove around the church parking lot across the street from our house. She calmed down. Hillary Scott's "Thy Will Be Done" came on the radio, and I wept uncontrollably. I was preparing to drive every year on vacation because Tyler was going to be blind. I had myself trying to find words to adequately describe to him the beauty that would no doubt be our daughter on her prom night, wedding day, or just a random Thursday. I knew how badly he wanted to throw the baseball with our kids one day, and that seemed like an impossible goal at this point. I went to the depths of despair and was envisioning the worst case scenario. I laugh now as I write this because if you know me at all, you know that’s not my natural reaction to such things. I typically have more of my dad in me than that, but I was too tired and drained to be even a little bit positive. I was scared regardless, but exhausted and scared is a dangerous combination. Ocular histoplasmosis is such a rare disease, there isn't much to find about it on Google. It's basically in less than ten states and caused by chicken droppings. We breathe in their droppings in the wonderful state of Arkansas, and very rarely it gets in our lungs and stays there. Even more rarely it manifests itself in our eyes, and even more rarely it "activates" and therefore causes blind spots. {that was the Abbie version. Very very dumbed down and not even close to medically accurate but you get the point}. Years ago doctors would just blast a hole in your retina to get rid of the spots. Unfortunately with the hole went your central vision, too. Thankfully, they changed treatment in recent years. Tyler's disease started out in one eye, and then after Nanny died the other eye activated as well. His doctor can see 40-60 spots on each eye that could activate at any point. There are injections that he gets in his eyes to dry up the spots after activation. Yes, literal needles going in his eyes. This is our course of treatment for as long as he has spots that continue activating. We did this from August 2016- June 2017 every 4-6 weeks. He has not had another spot activate since then, and we are prayerful that his eyes will continue to be stable. Stress and smoke aren't great for it. I get real protective if anyone thinks it's a good idea to stress him out or smoke around him. Good thing this last year wasn't stressful for us, right?! Tyler's vision is affected on a daily basis, but thankfully at the moment it isn't enough to make too big of a difference. Praise God for giving us two eyes because it is a game changer for Tyler. If he closes one eye he says "Babe, you look like a snap chat filter. Your head is ballooning up." If he closes the other, I "look wavy." When both are open though, each eye makes up for the other eye's distortion. It has affected his depth perception some and therefore his golf game. As his wife that makes me sad. He wasn't great to begin with, and now this happens. (He appreciates my humor I promise). I learn a lot from my husband. He has made me worlds more humble than I used to be simply because I've watched him be humble. He leads wonderfully, gently, and intentionally. He has never told me I need less pride or more humility, but his actions made me desire that. He handled this diagnosis perfectly. He expressed genuine emotion to me. He didn't like it or want it, but he never once got mad. He never doubted God or pushed Him away. He didn't even give himself 3 seconds to be pitiful. He amazed me with his reaction, and I was already utterly impressed by him. We pray every night- "Lord, please keep Daddy seeing." I think if Tyler were to write this next part he would probably say that ocular histoplasmosis has been his "thorn in his flesh". Much like the apostle Paul had something that reminded him of his need for a Savior, something to keep him from a subconscious pride or lack of dependence on God, this has been that for Tyler. If you know Tyler you know he succeeds at everything he does. He is the most coachable, reliable, eager learner no matter the subject. He has mastered everything from engineering to hip hop dance. He gives everything his absolute best. He is talented and intelligent and athletic and hot. (Not sure what relevance that last one has, but it needed to be said). Most times it is easy in earthly endeavors for Tyler. He knows and gives God all the glory for his talents and giftings, but there are moments where it definitely feels easy and natural, which can cause a lack of dependence. There's nothing Tyler can do to help himself see better. I wanted there to be, but I researched and got nothing. I have watched Tyler trust God with his sight, eyes, disease, and treatment 100%. I know he would say that this disease, this "thorn," has helped him depend on God. I don't know what thorns you may be living with. I don't know what weird, rare diseases you have that make you google and drive and weep at 3 am. I do know that God is there in the thorns, just like He's there in the absence of thorns. In the ever changing world and bodies we live in, He is consistent, and you can depend on Him. One last thing. If you encountered me between July 31, 2016- August 25, 2016 let me just say, I'm sorry. If you "blessed my heart", I get it. I'd be impressed by you if that's all you did. My daughter took a paci on August 26, 2016, and it was literally life changing. Praise God for my mom who saved my old Mams because those were the only ones Loula would take. In review: • Newborns can be very, very hard. • Eating and sleeping is good for you. • Ocular histoplasmosis is stupid. • My husband is impressive in every way. • Please join us in praying that he "keeps seeing." It's important to us. Â
