Corrie and I have always enjoyed candid conversations. It’s one of the things that attracted me to her, and it’s always been a component of our marriage that can be difficult and incredibly rewarding. I love that our marriage is a safe place for us to share our struggles, joys, dreams, and fears. I’m confident that these conversations need to happen. We can’t bottle them up and hold them in. An incredible amount of freedom and connection occur in our relationship when these honest conversations happen.
Corrie and I were having one of these conversations sometime in the first couple years of marriage. The topic: What is your greatest fear? For some reason, I had carried around but never vocalized my greatest fear to anyone until that day.
You may not believe this, but a unique fear became a permanent resident in my subconscious around the age of 10. I’m not sure where or how it began haunting me but the possibility of personalizing the fear scared the crap out of me. When I try to think about its origins, I always think about the kids with special needs in my elementary school. I would pass them in the hall or see them in the cafeteria, and their daily struggles scared me. I couldn’t imagine being in their shoes.
As I got older and my desire to have my own kids grew, the fear was still there. But now, the fear had a unique component and became personal. I couldn’t imagine having, nor did I want, one of my kids to have special needs. So I told Corrie…
My greatest fear: Having a child with special needs.
Based on many metrics I’ve lived a comfortable life, so the thought of not getting to enjoy my child through “normal” interactions and development was very uncomfortable and disruptive to my ecosystem. I would find myself thinking about this possibility and the myriad of ways that these special needs would impact my life. I was confident I couldn’t handle the perceived stress of providing acute-care for my child…every day. The fear was real, but I still believed it would never happen.
Enter Brooklyn. My sweet, beautiful, miracle daughter. It became very clear in her first couple days that she had special needs. She ate through a feeding tube, was continually on oxygen, had seizures, didn’t look like “normal” babies, and her body was continually fighting against itself because of her extra copy of the 18th chromosome. She had many special needs.
My greatest fear was realized. This reality didn’t settle in until several months after Brooklyn passed away. While she was with us, I never looked at Brooklyn as a child with special needs. Of course she needed acute-care, but I loved taking care of her. In fact, I ‘quarterbacked’ her medical care. I learned everything about her diagnosis, needs, meds, medical equipment, etc.
Although taking care of Brooklyn was disruptive and uncomfortable, I would gladly take it all on again in a second. This would mean Brooklyn was in my arms. Through Brooklyn’s short life, I learned that special needs don’t define a person. God used Brooklyn to show me the unique beauty that is underneath the “normal” or uncommon exterior. Her medical needs, diagnosis, etc. don’t define her nor do they define anyone.
I feared special needs would prevent me from connecting with my child. God shattered that fear. I was able to connect with Brooklyn in ways I could never have imagined and in ways that wouldn’t have been possible apart from her unique needs. God proved he is bigger than any fear, and Brooklyn changed me forever.