• Emily

A Little Short-Sighted

Updated: May 1, 2021

The path you've envisioned for yourself isn’t always the one you’re meant to follow.

Photo Credit: Lennon James Photography

 

How did I get here? It feels like such a loaded question. Where do I even begin? A combination of love, hope, devastation, and beauty barely come close to scratching the surface.


Our family’s story began in 2011, where Spencer, my now husband, and I happened to cross paths in Gulf Shores, Alabama. We stayed in touch and became friends despite the miles that separated us, but did not physically see one another for over two years. In fall of 2013, Spencer came to visit me at Oklahoma State for America's Greatest Homecoming, and shortly after we officially began dating. The long distance was tough, but we knew we were in it for the long haul, so after a year or so of dating long distance, we decided it was time to close the physical gap. Spencer moved to Stillwater, Oklahoma, where I was finishing my senior year of college. We had been in the same city for about a year when I went on a study abroad trip to Europe with two of my best friends from college. Spencer showed up and surprised me with the most beautiful proposal in Paris, the City of Love. He had been planning the entire thing with my best friend, Kelsee, for months and I had NO idea! We were married in Baton Rouge, Louisiana in 2016 with dreams of a wonderful future!


Despite all of the magic in our relationship’s unfolding, I feel our story truly begins when we were blessed with the miracle of life in February 2019.


You see, the odds were against us biologically. We both had factors that contributed to infertility, so we sought fertility treatment early on. Madelynn was conceived through an Intrauterine Insemination (IUI) procedure that was miraculously successful (more on that in a future post). Her conception alone is proof that God hand-picked this little girl for us; she was destined to totally and completely rock our world.


Throughout my entire pregnancy, I planned every little thing up to the moment of her birth. The nursery was basically finished by the end of my first trimester—a room that would become my favorite place to sit and wonder who our little girl would be. With her name picked, the hospital bags overpacked and in the car four weeks before my due date, and the house clean and fully stocked with e v e r y s i n g l e t h i n g I thought a baby could possibly need, my plan had been executed perfectly. So much so I felt certain God would undoubtedly teach me a lesson by sending her to us earlier than my due date. Of course I was fully prepared for this as well because #controlissues.


Everything leading up to her birth went exactly the way that I had planned. We picked my induction date knowing she hadn't dropped, and I would likely need a c-section. My doctor promised he wouldn't let me labor for too long before moving forward with a c-section, if I wasn't progressing. Our plan was set, and everything was going to be well within my control, just as I like it to be.


In the early morning hours of Monday, October 28th, Spencer and I drove to the hospital eager, as most soon-to-be parents usually are, and blissfully unaware of how hard our world was about to be rocked. The day went as planned, I didn't progress and ended up having a c-section. Madelynn was here and healthy and as beautiful as we could've ever imagined.


My mom came in town from Oklahoma to stay and help us through the first couple of weeks of being new parents. I remember her asking the pediatrician during rounds at the hospital one morning if it was normal for Madelynn's irises to be so small. The pediatrician said there was no cause for concern at that time. The same question was asked at Madelynn's one-week appointment—by this time we had noticed Madelynn’s eyes were severely crossed—and we were given the same answer, "Nothing to worry about, yet. If she's still cross-eyed at 6 months old, you will be referred to a specialist."


Looking back now, I see all of the signs that we had missed. The severity of her crossed eyes, her sensitivity to light, the fact that she rarely opened her eyes as a newborn, and the list goes on. Now I see pictures of newborn babies that my friends post on Facebook and notice how wide-open their eyes are from early on and I get it. At the time, we were new parents, faithfully hanging on to every word the doctors said. As first-time parents, we knew their instructions were, of course, correct but we didn’t know that we could question them, even if we felt deep within that something wasn’t quite right.


When Madelynn was ten-weeks-old, I went back to work, and one of my closest friends kept her for us at her in-home daycare. She had her own daughter, Sammie, that was only four days younger than Madelynn. Madelynn has had a built-in bestie from day one and knowing a child so close in age to Madelynn also gave us the ability to compare Madelynn's development with another child’s, and gauge what is considered "normal." That's when we really started to notice the drastic differences between them when it came to their vision. We know, we know—every child develops at their own pace. But we knew that something wasn't right.


One morning after Spencer dropped Madelynn off at daycare, he told me that Sammie had watched him walk across the room to set Madelynn down. At that point, Madelynn had never given any indication that she saw anyone up close, much less from afar. He just knew something was off. We decided to go ahead and contact the specialist she was going to be seeing at 6 months old if her eyes were still crossed by then. We called his office, made the appointment, and then we waited. While we waited, we Googled (naturally), and that pretty much confirmed what we had known in our guts —all of the signs of blindness were there.


On January 14, 2020, the hardest year of our lives began. We were finally able to see the pediatric ophthalmologist, who confirmed our fears—Madelynn was blind. He told us that she would likely only be able to see shapes and shadows and would need a cane to navigate as she grew older. (I'll elaborate more on her diagnosis and our journey to optimize her vision in a later post.) Our hearts were broken at hearing this news. We cried so hard for days. We mourned everything about the life that we had planned for her. Nothing was going to be the way we had envisioned it anymore. There’s nothing that could possibly prepare you to hear that your child may never see more than shapes and shadows. That even with glasses, she may never read a book or eye chart and may need a cane to walk. Suddenly, everything was different and harder.


What followed was a very hard year of eye exams under anesthesia; tests; surgeries; trips to Houston to see a retinal specialist; doctors’ appointments with neurologists, nephrologists, ophthalmologists, and infectious disease specialists. We had calls with parents of other blind kids, we learned to navigate what therapists Madelynn would need and the resources that were available to her, and the list goes on. As if all of this wasn't already difficult, it was amplified by a global pandemic. Add in the stress of everyday life—work, being new parents, family and financial struggles, taking care of our four dogs (yes, you read that correctly), etc.— and we’ve been living in a pressure cooker that, some days, feels like it could release at any moment.


Having a child with special needs can happen to anyone, but it never felt like something that could happen to us. We did the down-syndrome test while I was pregnant, and it came back negative. I saw maternal fetal medicine (MFM) every four weeks to monitor the pregnancy due to gestational diabetes. MFM measured and meticulously inspected e v e r y s i n g l e o n e of Madelynn's body parts. So many aspects of this baby were known, seen, and tested before she made her appearance, so the thought never occurred to us that anything could be different than expected. Sure, it happens to other people, but not to us—right? Surely something like that would have been found in the extensive prenatal testing and monitoring. Then suddenly, it had happened to us.


How could this happen? Why? I'd done exactly what was expected of me my entire life—I was involved in countless activities in high school then graduated with a high GPA, went to college (Go Pokes!), joined a great sorority (AOT), worked my tail off in college to build my resume, met the love of my life, started a career with a great corporation, got a dog (or four LOL), married the love of my life, bought a house, had a baby—all of the things you are ‘supposed’ to do. How could this have happened to us when we had done everything the ‘right’ waythe expected way—and to our innocent daughter who did nothing to deserve this hardship? We planned every detail of our lives, and this wasn’t part of the plan. How could it have possibly happened?


Early in our journey, a friend of ours told us about Sister Dulce Maria, a nun in Baton Rouge that has a healing ministry. She works through God, who she refers to as ‘Papa’, to heal those that need it. We jumped at the opportunity to get an appointment with her, and we’ll never forget that first appointment. Her prayer every visit is,"Papa, I receive her blindness into my hands and give it up to you." But on that very first visit—after her prayer—she sat and listened to Papa, who told her that Madelynn wouldn't be blind, just a little short-sighted. Cue the tears. All of our hope that we have clung to throughout this entire journey was from those words.


Since the day that Madelynn was born, our world has never been the same. She flipped everything upside down and inside out in the greatest way possible. I wouldn't change anything about her, even if I could. I think Zac Brown Band said it best - Our whole world begins and ends with her.


Our journey is ongoing, but now that we're a little over a year in, we have a better grasp on life and parenthood. Although the pressure cooker still very much exists, as the everyday demands don't stop, I've found myself wanting to find a way to make a difference in the blind community and further advocate for Madelynn.


Somewhere along this crazy journey, I developed a hobby of dressing Madelynn in precious, southern styles. Smocked, timeless outfits have always been beautiful to me, but in the midst of the pandemic, I found they were just sitting in her closet, waiting for the world to reopen so that we could go to church, parties, get-togethers, and just live life again. That's when it dawned on me that there doesn't HAVE to be a special occasion to dress your child beautifully. If cared for properly, these clothes can be worn daily and be wearable for years-to-come. I couldn't let those beautiful outfits, passed down for generations, go to waste. So I started dressing her in them every day and learning more and more about what styles I loved to dress her in. Now, you’ll rarely find Madelynn in anything other than a southern-style outfit.


After receiving compliments often on all of Madelynn's outfits, I had an idea-why not open a boutique to help my friends find clothing like Madelynn’s for their little ones? Better yet, why not make it unique in the sense that it's inclusive to blind parents? Madelynn may be a blind mother one day, and I want nothing more than for her to have the opportunity to pass the precious and beautiful clothing she wore down to her children—should she have them. I want her to be able to dress and shop for her children easily, despite being visually impaired.


Kadie has been one of my closest friends in Baton Rouge since I moved from Oklahoma in 2015. I'll never forget the night that I met her. She immediately made me feel loved and welcomed into Spencer's friend group. We've remained friends ever since, and one day I mentioned to her that I was thinking of starting this venture. She immediately jumped at the opportunity to get involved and shared her thoughts, that we could utilize this boutique as a way to raise awareness about blindness and advocate for MadelynnEXACTLY what I'd been looking to do. I think that God brought us together for this exact purpose. To say that I couldn't have done this without Kadie would be an understatement. She is strong where I am weak and pours her heart and soul into everything she does. Since the day we decided to actually do this, the amount of thought, time, and effort that she's put into this boutique is beyond explanation!


We're so glad that you're on this journey with us and are allowing us to help dress your little ones beautifully—while teaching you more about blindness. We’re hoping to help you through this thing called life by sharing this blog about what we experience in our lives with you! If nothing else, we hope that our experiences bring you peace and comfort to know that you are not alone.


As you can see, the path that I had laid out for myself was a little short-sighted. I’ve never looked beyond what I thought was expected of me—until now. God had bigger and better plans for me and my little family that we never could’ve imagined or planned for ourselves. He's given us a new perspective on life and an amazing purpose that we never could have dreamed. I have no doubt that He has bigger and better plans for you and your families as well, even when all seems lost.


Click here to read Kadie's story on how we came to be A Beautiful Sight!

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