I am honored and privileged to be kicking off the Raising Warrior series, here on Bare Feet and Curls. I can’t wait for you to hear from our guest writers over the next few weeks. They are amazing moms who are raising extraordinary kids!! I know you will be inspired by their testimonies.
I’ve shared parts of my family’s story before, but the short version is this: I’m Sara. My husband and I have been married for 10 years, and we have a 9 year old son. When he was born, he was discovered to have a birth defect that required emergency surgery. While his health is a lot better than they warned us it could be, he does struggle with some ongoing medical issues.
What kind of struggles does your child face because of their condition?
Xander was born with a congenital diaphragmatic hernia, which means that his diaphragm did not fully form in utero. While most babies are diagnosed during the 20 week anatomy scan, Xander’s CDH was not detected until he started struggling to breath, a few hours after birth. He was rushed to the nearest children’s hospital and had surgery on the 2nd day of his life. There was damage to one of his lungs and post surgical complications with his digestive system. Over the years, he has been treated by specialists from 7 different departments. He has had several procedures and countless tests. We have bounced around from doctor to doctor, putting together the best team and the best possible care for him. He has spent birthdays at urgent care and holidays at the hospital. He deals with chronic pain, but you would never know it. He is a red belt in TaeKwondo, he loves to swim, and he wants to be a farmer when he grows up. He’s the strongest kid I know.
What are the challenges you face as a parent of a child with complications?
I’m a people-pleaser and I avoid conflict as much as possible. I had to overcome those tendencies and learn how to advocate for my son. I had to stomach standing up to his doctors and the insurance company. I had to be ok with being labeled difficult. I have embraced my role as a squeaky wheel. And even though I’m better at it than I used to be, it’s still hard.
I also feel the weight of making daily decisions for him. A lot of his current treatment plan is centered around dietary restrictions and adjustments. While we have doctors and nutritionists to guide me, it’s ultimately up to me to choose what he eats and what medications we use. It can feel like an overwhelming responsibility and I tend to take his tough days as personal failures.
How can we, as a body of Christ, support you?
Give us permission to be ‘not ok.’ Be a safe place for us to vent and cry and yell. And don’t take it personally, when we don’t return phone calls or show up at events. Those are the times we need you most. Please keep reaching out.
What words of advice or encouragement do you have for mothers who are in the same stage of life as you?
Find community. I know it’s hard, when you’re consumed and exhausted by the needs of your child. But keep trying. It makes all the difference. Find people you can be real with. Find other warrior moms, who know what you’re going through. Reach out to people in your church or community group – and be honest about what you need. Ask them to pray.
Mama, it’s all grace. His grace is enough, even for this.
God is our rock, when we run out of strength. God is our peace, when our hearts are chaotic. God is our hope, when we don’t know how we can possibly keep going.
He loves us enough to call us His own. He loves our kiddos even more than we do. He can handle our anger, our frustration, and our tears. We don’t need to hide any of it from him. His grace is sufficient and His power is made perfect in our weakness. He meets us where we are and carries us through.
He is so, so good.