When my baby was born with a rare disease, I was thrown into a scary new world of unknowns and fear. I was wounded—and consequently—I retreated from the world. When I finally reached out to my friends, what happened was amazing. I wasn’t used to asking for help, as I’d always been self-reliant. I grew up as an Army brat, and after a lot of moving around, my family settled down in San Antonio. After high school, I joined the Air Force, then worked for the Veterans Administration. I moved back home and married James, whom I’ve known since we were teenagers. And here we are 5 years later, with 2 kids and another one on the way.
First came Emmie, a very unexpected surprise, and everything went smoothly. When I got pregnant with Camila, we were very prepared and thought we knew what to expect. But as soon as she was born, it was obvious something wasn’t right. She had a big birthmark on her face, her right eye was gray and swollen, and the right side of her face was puffy. Within 5 days, we saw an ophthalmologist who confirmed our worst fears—he diagnosed Camila with Sturge-Weber syndrome. It’s a rare disease caused by a random gene mutation, and Camila was born with 2 of the 3 symptoms: a port wine stain birthmark and glaucoma. Then she eventually developed the third symptom—seizures.*
“…we saw an ophthalmologist who confirmed our worst fears—he diagnosed Camila with Sturge-Weber syndrome.”
We started treating the glaucoma and the port wine stain right away. At 10 days old, Camila underwent eye surgery to have an adult-sized Ahmed valve shunt implanted in her right eye to save it. The shunt relieves the pressure in her eye, and to this day we pray that we acted quickly enough to save what was left of her vision. At 21 days old, Camila underwent her first dermatology procedure. We travel to Houston once a month for her treatments. There’s no sugar coating this—it’s awful.
“At 21 days old, Camila underwent her first dermatology procedure....There’s no sugar coating this—it’s awful.”
The first couple of treatments, I was useless. I sat in a corner and cried as my husband and the medical team held my baby still while the dermatologist zapped my baby’s face. These laser treatments would result in instant swelling, bruising, and a smell of burnt flesh that James and I will never forget. Don’t misunderstand, we are thankful for these treatments and for a dermatologist who was as proactive as we were. When it comes to the port wine stain, the literature indicates that the sooner you can start treatment, the better the results will be. While we didn’t know what to expect, James and I knew we were going to be proactive and not reactive. I never thought that, while I was still trying to heal physically after giving birth, I’d be experiencing the emotional, spiritual, and mental brokenness that went hand-in-hand with Sturge-Weber syndrome.
I prayed fiercely that Camila wouldn’t suffer from seizures, but 9 months later they started—myoclonic-atonic seizures that would make her head suddenly drop. Eventually, she was suffering from 20 to 30 cluster seizures in a day. Before long she was on 6 or 7 medicines, with some very serious side effects. She slept all day, had no personality, and essentially was like a little baby zombie. I’ve been deployed overseas, and I’ve known some tough times. But this was the hardest thing I’ve ever gone through. This tested me. This broke me. I was angry at everyone and mad at the world. Yet simultaneously, without even realizing it, I was growing. My faith, my hurt, my hope, and my joy were coming full circle.
“Yet simultaneously, without even realizing it, I was growing. My faith, my hurt, my hope, and my joy were coming full circle.”
I was hesitant to ask for support, because I’ve always been a very independent person. I’d rather have people think everything is fine than let them see my vulnerability. Friends were reaching out, asking to come and see the baby, and I would say, “No, she’s fine, she’s sleeping,” and make excuses to isolate myself. I wasn’t prepared to face the stares, the questions that I didn’t know the answers to, or the pauses as people would try to encourage me as they filled the awkward silence and saw my miserable mood that hung over me.
“I was hesitant to ask for support, because I’ve always been a very independent person.”
It wasn’t until I was okay with NOT being okay that I was…okay. What finally motivated me to reach out for help was a Facebook post by Jen Hatmaker, a blogger I follow. It’s about how female elephants will surround an elephant who is giving birth to protect her and her calf when they are most vulnerable. The elephants form a tight circle, create noise, and kick up dirt to create a distraction and drive away predators. They’ve got her covered, literally. I cried when I read that article to James. And I knew what I needed to do. I needed to reach out. I needed my “tribe.”
“It wasn’t until I was okay with NOT being okay that I was…okay.”
When I did reach out, it just made a world of difference. I created a messenger group among my girlfriends, and the response was amazing. They let me be vulnerable, and they protected me. They prayed for me. They checked in on me and made sure I was eating. They brought meals for James and the kids. And when I got stronger, they celebrated with me.
They set up a dinner wagon where they would trade off bringing meals to the house. One day a good friend of mine, Gina, was coming over, and I just didn’t want to deal with it. I was in a funk, and I was too tired to pretend that I was having a good day. I called it off, and then 30 minutes later I heard a knock at the door. Sure enough, here comes Gina with pizzas for the family. As she handed them to me, she said, “Yeah, I know, I heard what you said, but here I am. You need to eat, and let me hold this precious baby.” Her timing was perfect. It was exactly what I needed right then. I would never have experienced that had I not allowed myself to open up and reach out for help.
Some days I’m great, some days I still struggle. Sometimes listening to moms talk about their babies’ milestones bothers me, because Camila is not there yet. Although she is catching up developmentally, she is behind. I still worry about what the future will hold for her. This world can be cruel and mean to people who are different. But my friends remind me that every child is different. Together, we focus on how far she’s come, and we celebrate milestones as they come.
“I would never have experienced that had I not allowed myself to open up and reach out for help.”
Now that we’ve found a treatment that is working for Camila, she’s off all the other medications but one and is thriving. I look to find joy in the daily victories. She’s crawling. She’s walking. She’s running. She’s smiling. She’s laughing. She’s fussing. She won’t stop crying. They may seem like little things, but these are huge. James and I are so exhausted half the time because of late nights, but we are so happy that Camila is finally having those late nights that we took for granted with our first child.
“Just as the elephants sound their trumpets to celebrate the birth of the newborn calf, these women sounded their trumpets to celebrate me and my healing.”
Just as the elephants sound their trumpets to celebrate the birth of the newborn calf, these women sounded their trumpets to celebrate me and my healing. And when the next mom is going through tough times, she steps into the “circle,” and we do the same thing for her. We protect her and celebrate together. We believe in faith over fear. We don’t isolate ourselves or let ourselves be alone. Jen’s post about the elephants is what put all that into perspective for me. I encourage anyone who is going through a difficult time to reach out to their tribe. What you need is out there—you just have to ask.
You can read the story about female elephants here: https://www.facebook.com/jenhatmaker/posts/a-few-months-ago-my-girl-nichole-nordeman-sent-me-a-picture-and-a-story-its-abou/1336383579793967/