Faith
"We walk by faith, not by sight." 2 Corinthians 5:7
As Christians, we are called to live by faith; an attitude of complete trust in God. Something that is so simple to say, yet can be hard to live by. So often I find that it is so easy for Christians to share about how God redeemed them and showed His grace after they've gone through a hard season. But, how hard is it to live by faith when you are in the middle of the storm? I've been reflecting on this as we are at the one year anniversary of Presley's last eye surgeries. We have come so far in a year, and I can only thank the Lord for bringing us through some of the toughest days of our life.
Surgery days were hard, even with the most caring and skilled of doctors in the world. After Presley's 5th eye surgery last year, I started crying when I got to hold her-like I did every time. I will never forget the nurse looking at me and saying, "Oh sweetie, I thought you've been through this before." Seeing your innocent baby groggy with a patch over her eye and likely in some discomfort is never easy no matter if you've been through it before or not. Sometimes I wish I could just slap people across the face, but instead I took the passive aggressive route and just ignored her. Michael handles the insensitive and hurtful comments much better than I do. I’m learning from him but am definitely a work in progress still. I know people don’t mean to be malicious but the ignorance can be gut-wrenching.
I've learned my whole life about Jesus Christ and His atonement but for the first time in my life all that I had learned and believed was being put to the test. Did I really believe? Did He really suffer for me and feel all my pain? Could the atonement really heal my broken heart?
Let's be honest-some seasons just suck. They are the worst. They hurt like hell and there is no way around it. But, other seasons are so incredibly hard and yet, hard does not always equal bad. Times can be hard and also good.
A difficult workout is not necessarily bad. Hard work, a rough patch in a relationship, a time of feeling lonely are not always bad. They may seem bad at the time, but getting it done and pressing on will bring good results out of a time of exhaustion.
I believe that my seasons of "hard" have and will continue to be (as they are far from over) an opportunity to live out what I say I believe. God is the one and only source of true joy and peace. He has healed my broken heart. I have a smile on my face because of the gift He has given me in Presley and the precious life growing in me. He has shown me how to choose faith over fear day after day, which isn’t always easy for me especially being pregnant again and all the worry that comes with that. We've all heard the expression, "I'll believe it when I see it." But you can't see faith. Walking by faith and not by sight requires you to go to a place you do not know, one that God will reveal as you walk in obedience with Him. Walking by faith requires you to follow God’s plan regardless of what life throws at you. And life will throw you curveballs. I have a hard time when I hear people planning out every second of their future or their kid’s future like everything will happen and fit their perfect timeline and picture of their life. I’m not saying don’t plan. I still plan, but I now plan knowing that these are just my plans. God may have something different in store, and I want to be willing and ready to accept that.
Being Presley's mom is my greatest accomplishment. People ask us a lot how we've known what to do and the best ways to help her, and I always say she's our daughter. Just like any new parent, you learn your child and his/her needs and it just comes naturally. Well, for the most part. In those first few months after she was born and we found out she was blind, Michael and I talked a lot about how we need to be really good at explaining everything to her and talking to her all the time. I was thinking okay God, I can think of a lot of people who would be better parents of a blind child than us! I've never been known as a talker. Of course, talking to your child is a little different than being the most outgoing person, but you get the point. I got asked to speak at a Rare Disease Conference this summer and just the thought of public speaking is enough to make me start sweating. I’ve always been better at expressing my thoughts in writing. I won’t say that I won’t ever do that because I don’t know what doors God is going to continue to open for me regarding nonprofit work and raising awareness in the future, but for now, I am just going to stick to my Apple products. #notsponsored
From early on, I started making it a habit of describing everything to her no matter where we were or how simple the task was. Just because she can't see doesn't mean that she is going to miss out on those details that a sighted child picks up on from simply turning their head and looking or watching. When Michael goes to shower before work in the morning, he takes her with him and she helps him turn on the shower. It can be simple things, but it’s important to us that we include her in everything we do and let her explore with her hands whenever applicable. We want her to experience everything like her sighted peers. She just may experience it in a different way. She lives in a sighted world. We want her to understand the world around her.
She is already proving how smart she is and that she has been listening to us all along. She’s a little sponge. There can be a room full of people talking and someone goes to get ice and Presley will say, "ice, ice." We've even had to stop a few times and be like why is she saying that? Oh, because Lauren just got up to get ice, etc. etc. She hears the garage opening in the evenings and screams, "daddy's home, daddy's home!!" (He's literally her favorite person ever—not bitter about it). She knows the entire ABCs. She knows all the farm animal sounds. She identifies her body parts. She can count to 20-she is only 20 months old by the way. She recognizes people's voices already. She identifies things she touches. She is learning the layout of our house. Her spatial awareness is incredible. Sometimes she could fool you because she will put her hand out to touch the wall at just the right time like she saw it. Today we got in the elevator at the mall and she immediately said, “ding, ding” like the sound it makes when you get to your floor. She recognizes songs within a second. You can often find her requesting “Jackson.” Yes, a Michael Jackson fan she is-specifically Thriller and Beat It. If you ask her what she wants for lunch, she will most definitely say “quesadilla.” She even woke up one morning last week yelling, “quesadilla, quesadilla” in her crib.😂 She may be a daddy’s girl but she got my love for Tex-Mex. She is high maintenance and stubborn at times, but oh so freaking adorable, and we are enjoying every second with her.
We went for a follow-up appointment at Texas Retina here in Dallas in March and will go back again at the beginning of September. At this point, we are just monitoring and making sure her eyes remain stable post surgeries. The only true way to know what her retinas look like is to do an Evaluation Under Anesthesia and we are all in agreement that isn’t necessary at this point. Michael and I do not want to have to put her under anesthesia again unless there is a medical reason to do so. After our last surgery on May 3 last year, Dr. Capone told us he had done everything he could from a surgical standpoint and it was up to her eyes to do the work from here. From what Dr. Abbey can see from looking in her eyes, her retinas are still settling back slowly (which is what we want) but we feel she is developing so well otherwise, we're not as concerned with what she might or might not be able to see. No matter what, she is considered blind. She will read braille and walk with a cane. We have hope that she will see within her lifetime, but our focus now is on giving her all the tools she needs to be successful and just treating her like any other kid.
Thank you all for caring, loving her, and supporting us like you have. We are truly grateful. We love our little mountain mover!
“Never let anyone tell you what you can’t do...prove ‘em wrong.”
