By Chandler Langford
Mommy to Tucker
Recessive Dystrophic Epidermolysis Bullosa
born December 2021
When we found out we were expecting Tucker, our first child, we were all excited. We had a bunch of clothes already bought. We had dreams of the different sporting events we would be going to and different types of birthday parties.
I had a healthy pregnancy all the way up until my 36-week appointment. At that appointment, I was diagnosed with preeclampsia. I was admitted to the hospital and induced, and Tucker was born on Christmas Eve.
Those first few days were filled with so many emotions — fear, confusion, sadness and just wanting answers. When Tucker was born, we knew something wasn’t quite right with his skin, but we had no idea at the time that it was Epidermolysis Bullosa.
Since I had delivered at a completely different hospital, Tucker had to be taken by ambulance to another hospital with a NICU. When they told us he needed to be transferred, it was scary and overwhelming because we didn’t really understand what was happening or what was wrong.
Since he didn’t have an EB diagnosis yet, the doctors were trying to figure things out as they went. They were concerned about his skin and wanted to keep a close eye on him and make sure he was okay. We were given information as they learned more, but at the time, we really didn’t know what his diagnosis would be or what the future was going to look like.
Seeing your newborn baby in the NICU, with his little body covered in wounds and his skin so fragile, was heartbreaking. You want nothing more than to pick your baby up, hold him and make everything better, but we had to be extremely careful with Tucker because even the smallest amount of friction could hurt his skin.
We were able to visit and spend time with him, but we couldn’t stay overnight in his room. We also lived too close to be considered for the Ronald McDonald House. Tucker spent a month and a half in the NICU, and that time was rough on our family.
We got the news of Tucker’s diagnosis on January 10, 2022: Recessive Dystrophic Epidermolysis Bullosa. I remember when all the doctors came in and told us that Tucker had a rare skin condition and that, at the time, he was one of only three children in our state who had it. This flipped our entire world around. We had to learn how to protect our newborn baby from getting his skin torn by his clothing. Our fears at that time were, how are we going to do this? This wasn’t our plan at all. The doctors told us to expect a lot of doctor’s appointments.
EB has impacted our family by requiring us to adjust our everyday lifestyle. During the summertime, we can’t just go outside and play because his skin is so sensitive to sun exposure. Tucker struggles to understand that some kids are able to run and play outside for a long period of time, but he cannot.
I first heard about On Angels’ Wings from another family who had lost their son to EB. She told me this would be something amazing to have done so we could cherish our moments with Tucker.
Our first family photos were done when we found out Tucker was going to be a big brother. We did maternity pictures and newborn photos after Waylon arrived. We didn’t know what to expect with our first photo shoot, but the photographer was amazing. She didn’t pressure Tucker to do anything he didn’t want to do.
I wish someone had told me that wound care can be emotionally difficult, especially in the beginning. You can feel like you’re hurting your child even though you’re doing everything you can to help them. That guilt and fear can be really heavy. But, over time, you learn the routine, you learn your child’s cues and it becomes more manageable.
One of the biggest things I’ve learned is to give myself grace. We’ve learned how to care for a child with a condition that most people have never even heard of. There have been days when I felt like I handled everything perfectly and days when I’ve felt completely overwhelmed. That doesn’t make me a bad parent. I’m just learning alongside my child.
Tucker has been in the hospital a couple of times since he was born and is still fighting EB. We call him “Tucker Tough.” But behind everything he has been through, Tucker is just a sweet, fun-loving little boy. He absolutely loves trucks and could spend hours playing outside when the weather is manageable for his condition. He’s now in a wheelchair and loves driving it around. When he’s at school, he tells his classmates that it’s his truck.
One of his favorite things is playing with his little brother, Waylon. And if you ever get talking with Tucker, you better believe he’s going to tell you a whole story about his stuffed animal, “Donk.” Donk is very special to him, and Tucker has the best imagination when it comes to telling stories about him.
Tucker brings so much joy and laughter into our lives. He has such a big personality and a sweet little heart. We want people to know that behind everything he has been through, he is just a little boy who loves to play, tell stories, be outside and make people smile.
Our hope for Tucker is that he can enjoy his life to the fullest. Over the next couple of years, I would like to see Tucker find some sports that he can play. I want to spread awareness of EB so he doesn’t have to go through people staring at him because more of society is informed.
On Angels’ Wings has impacted our family by capturing our life with Tucker. On Angels’ Wings is important to families like ours because we live in the moment with our kids, so we can’t capture all the pictures ourselves. OAW helps capture our family without the stress of having to plan everything out. The photographers are all amazing, and they help create the perfect family photos. It’s also nice knowing there are other families within OAW who are going through the same thing we are.
