One Wave at a Time

Just a note before I start today’s writing: I am so grateful for the picture above, along with many more, you never know when these moments will no longer exist. And we have the opportunity in our pockets (phones), to take glimpses of these moments. I encourage you to not hesitate, take the pictures! Video all the firsts, seconds, thirds, the moments that you can’t get back! I know how these priceless treasures can make my day just a little bit more do-able, I never wish this on anyone, but believe me if you are ever left with just pictures and videos and memories, you won’t regret a second of taking the time to snap the picture!

In the past few posts I have shared the path of many diagnoses. I left out a lot of the circumstances and life that was happening during these periods, because those are for another day. However, it has come to my attention I left out a huge part of my life, which is my vision. One thing that writing has done for me is this, in sharing life, I am realizing more than ever (although I already knew my life story wasn’t typical), that I haven’t really ever given myself the permission to sit “with” my story. And what I mean by that is, I do the things that are needful for my daily wellbeing, went to all my doctors appointments, journaled my migraines, reflux, etc, but I can’t ever remember just laying it all out and sitting and reflecting on it all. For this, I am very grateful.

Onto my vision… so funny stories first: 1. my brother had his teachers, my parents, etc tricked into thinking he was colorblind. He is not, and when he was taken to the optometrist they found out he knew every color and that he really wanted to experience all the machines 😊 Love ya bro! 2. I came along and my friend’s dad was and is an optometrist. In second grade I started to struggle to see the board at school. But it wasn’t too horrible yet. Until we went to the state fair and I couldn’t see the menu overhead, and that’s when it hit my parents, SHE CAN’T SEE! They felt horrible because they assumed the combination of my friend’s dad plus the experience with my brother, that I was just intrigued by the machines. Unfortunately that was not the deal. I tell this story because, well, it’s too funny not to! And we are all human! 😊

Well, my eyesight decided it would like to go absolutely bonkers! So I was sent to Duke Pediatric Eye Center, which at the time was located, can you guess? IN THE BASEMENT of the eye center! A little creepy and quite claustrophobic, but they have redeemed themselves now with a new clinic for pediatrics ☺️. From 2nd grade, so 7 years old until around 18-22 years old my eyesight progressively got worse almost every year at my yearly exam. As of right now, my prescription for glasses is R-7.50 L-8.50, with astigmatism and dry eyes, which all this combined puts me at risk for detached retina.

I share this because I can barely remember life before having to wear glasses (which have drastically improved, might I add). Even the memories before, all seem like glasses were always apart of my life. When you have eyesight like mine your mind involuntarily memorizes your surroundings. You are adamant about where you place your glasses, and threaten anyone who moves them or breaks them. Bottom line: You just don’t have the luxury of having them or not having them, you have NO choice, you cannot do anything without them!

Grief, daily and secondary loss, the ebb and flow of loss, can be like eyesight. When you have your glasses on and they are the right prescription, the path forward is clear. But when you have your glasses off, or they are the incorrect prescription, everything is a complete blur, nothing can be fully seen. There is no making sense of where you are or what is around you, nothing is familiar. It’s a reality that is absolutely, positively, unavoidable.

There were a lot of pictures taken of Lucy and I with our foreheads pressed together, that’s how close I would have to get to see her clearly, without glasses. It’s also how we slept 99% of the time ☺️. I find this one of the kindest gifts God provided for us. In all seriousness, I believe He have me find out about Dock-a-Tot when my nephew was little and he LOVED sleeping in one when he spent the night! It keeps them cozy and in one place 😊. And so when Lucy arrived I immediately ordered the infant size, and when it was bed time, you best be leaving Lucy with mommy! Such a stinker- she would let you know!

These are the secondary and daily losses that make my lying down and getting up, somedays incredibly hard. There hasn’t been a night or a morning that I have not said her name. I have to say “good morning, Lucy.” “Good night, Lucy.” She’s my little girl forever. I talk to her all the time.

There are tons of losses along the way, the times when you lose your clear vision, and have to allow yourself time to ride the wave of that loss. You may need silence, or just sit a bit, or journal, or craft, or take a bubble bath, whatever it is, give yourself time and space.

One of the things Lucy loved was music, at nighttime she loved hymns… Her very favorite, “I need Thee Every Hour” sang by Joey and Rory Feek. So one of my “riding the waves” waiting on my vision to become clear, I listen to these hymns and seal them in my heart and mind.

I encourage you to remove your glasses when the waves starts to come and your vision is cloudy, let the waves come, don’t avoid them, feel everything, and when the wave passes, put your glasses back on, believe me it’s worth the pause!

Life Book of the Week: “One Wave At A Time” by Holly Thompson and Ashley Crowley

https://www.indiebound.org/book/9780807561126