I have the Timehop app on my phone, and each morning, it just beckons for me to click. It’s a really neat app that shows you things you posted on Facebook, Twitter, or Instagram on this date in years past. It often reminds me of the funny things my children said, which I’ve usually forgotten. It shows me pictures of what I was doing on this date however many years ago. Those are always enjoyable. Today’s reminder, though, was filled with lots of emotions, both good and bad. 5 years ago today was a bad day, but padded with the journey I’ve been on the past 5 years, a lot has also been overcome. I’ve seen miracles. I’ve battled demons, and won. My faith was pushed to the very brink of whether or not I’m going to continue believing in the One True God.
5 years ago today, my world turned upside down. My daughter Cora had the MRI that has forever changed our lives. It completely altered the path we were on as a family and put us into a world we didn’t realize was so large, filled with such devastation and sadness, and yet always the hope that tomorrow will be better, and I’ve seen and experienced many victories. This was the day we were thrown into the vast deep end of the world of special needs. I even just said to Donnie last night that before 5 years ago, I never realized the special needs world was as large as it is. When you’re not a member, this world is easy to overlook. But when you’re in it, you get to meet some amazing people, people whose strength is inspiring. I wonder if people find my own strength inspiring.
About 5 years and 5 weeks ago, Donnie and I adopted a beautiful baby girl we named Cora. We were told Cora was perfectly healthy, but shortly after getting her home, I knew something was wrong. I couldn’t quite put my finger on it, but she just felt “off” to me. Our pediatrician ordered an MRI of her spine because he suspected she had a tethered spinal cord.
The day before the MRI, he called me and said he couldn’t shake this nagging feeling he had about Cora’s MRI and really wanted to have her brain scanned too. He said, “I don’t know why, I really do think her problem is her spine, but while we’ve got her under, I feel like we need to spend the extra half hour and scan her brain too.” That was perfectly okay with me!
5 years ago today was that MRI. We were told that we wouldn’t know any results till early the following week because it takes time for a radiologist to read the results and put them into Cora’s file. No problem, I told them, I am a very patient person.
After Cora’s MRI, Donnie went out of town. Our church was going on a men’s retreat, and a handful of men were waiting around for Donnie to be finished at Children’s and they were all going to ride together. I took Cora home, picking Clay up on the way. He’d been playing at a friend’s house all day while we were with Cora at the hospital. My parents came over after dinner to play with their grandkids.
Cora was fine after the anesthesia. She’d been playing and reading books, and she was so excited when her grandparents came over. My phone rang, and it was our pediatrician calling me from his house. He did this once before after Clay had had a procedure done, checking on how he was feeling. I wasn’t alarmed by his greeting, “This is Dr. Stowers. How’s Cora?” I told him she was doing fine, she was playing with her grandparents.
During this part of our conversation, I walked upstairs to my room by myself just so I could hear him better and could speak without bothering the kids. Then he said, “Angie, are you sitting down? I have Cora’s MRI results.” I’m pretty sure my heart stopped beating. I remember all the blood rushing to my face and I felt hot and terrified. It was too soon. He would only call me like this if it was bad.
I immediately sat down on my bed, and I said, “I’m sitting.”
He proceeded, “There is something wrong with her brain. She has something called Periventricular Leukomalacia, and Cora’s is pretty significant.” Now my breathing stopped. He said, “It’s called PVL, and soon you’ll be so familiar with it you’ll be able to spell it without much thought. Cora’s is moderate to severe, and what that means is half of her brain is dead. I’ve only seen one other child this severe before, and that little girl is in a wheelchair. She can’t walk or talk, she has a feeding tube, she has significant learning problems. Do you have any questions before I continue?”
I had tears dripping off of my chin. My nose was running just as bad. (Sorry for the gross visual… I was a mess.) I was crying so hard. I said, “I’m sure I have a million, but I can’t process this quickly. I need you to tell me what this means for Cora. Please don’t hold back.”
He said, “Your life just changed forever. Cora will probably never walk or run or dance like a normal little girl. She’s going to have significant delays. She’s going to struggle in school and probably won’t learn like her peers. She will most likely be in a wheelchair, but even if she’s not in a wheelchair, she’ll never be coordinated or graceful. She’ll never be able to run fast, or maybe not even run at all.” Then I remember him instructing me to get a pen and paper because he wanted me to write down her diagnosis and google it. He said that he was going to be making us an appointment at Children’s with a neurologist, and that it would take a few months, but he wanted me to be familiar with PVL and have my questions ready.
He wasn’t wrong. Our lives did change forever that day. And he wasn’t wrong about her brain. She shouldn’t be doing any of those things. But, ooooh, this is where those miracles come in that I’ve seen! Looking back on this awful day in my life, do you know what I see now? God held me that whole day. God wasn’t surprised by her brain damage, and He knew that it was going to be terrible news to receive, and He was holding me the whole day. He was drying my tears, and showing me just how strong I could be with Him inside my heart and my life.
God showed me how much love our parents have for their grandchildren, including their newest grandchild. Every single one of them, in their own way, began fighting for her health and growth through their love for her. My parents were there when I got the news. After I called Donnie (and he shared the news with the men he was in the car with, and they turned that car around and brought him home!), I told my dad what the doctor said. Through his own tears, he said, “Angie, that doesn’t change how much we love Cora and we will do whatever we can for her the rest of her life.” Then I told my mom, and through her tears, she did all she knew to do, and that was to grab my hands and lay our burdens at the feet of Jesus. Then when we told Donnie’s parents what the doctor said, they too insisted that none of that changed how much they love her, and they were quick to show up at our house and love on her and Clay both.
It normally does take months to get an appointment with a neurologist at Children’s. God moved things for us and we met with a neurologist just 36 hours after receiving the word from our pediatrician, and he was exactly who we needed to see. He was exactly what I needed. He came in with a plan, proactive things I needed to be doing, and words of encouragement that quite honestly could have only been inspired by God himself. He said, “Kids are miracles all the time. It takes hard work and lots of therapy. We never catch PVL this early in a child’s life. You have this gift of knowing about it now, so that there’s still time to do something about it. Fill this girl’s world with physical therapy, occupational therapy, speech therapy, developmental intervention, and anything else you can. Work with her, stimulate her muscles through exercise. Love her. And don’t allow language in your house anymore of ‘can’t’ or ‘never’ or ‘won’t’. It won’t be easy. In fact, this will be the hardest thing you ever have to do as a mother. But push her and work with her and fill her life with all the help you can. The sky is the limit with Cora, and if anyone tries to put limits on her, find someone else. Don’t take no for an answer.”
And look at her now. She’s been in 2 dance recitals. She takes karate. She’s in kindergarten. She walks, runs, dances, skips, twirls, and flips. She’s got delays, sure, but she’s learning and growing and thriving. She’s got a big brother that literally knocks bullies out of her way. He is her great earthly protector, and I couldn’t be more proud of him for how he cares for her. She talks, she BACKtalks, she sasses, she makes jokes. She loves all things princesses, but she also loves all things cars and trucks. She loves watching football and basketball with her daddy, but also loves a good musical with her mommy. She loves books and puzzles and coloring. In so many ways, she’s a very normal 6-year-old girl. She’s tough and strong. She works hard. We’ve had a handful of people try to put limits on her, but believe me, those people don’t last long with her momma around. We don’t allow that language or that mindset in our lives.
5 years ago today, our lives changed forever, but at this point, knowing who I am now versus who I was then, I wouldn’t have it any other way. I have strength I didn’t know I had. My faith is ginormous because I have seen God move mountains for us. I’ve seen firsthand his miracles. I live with them every day.