I recently watched this TED talk by one of the leading Dr.’s in GA-1. Sometimes I forget how serious Reagan’s GA-1 is. I forget because I am truly, truly trying to not live in fear. I am doing everything I can all the time to trust God. When a fearful thought comes into my head, I have to squash it. I tell myself: “Live this moment. Enjoy Reagan now, today. You don’t know what tomorrow holds. You’ve been given now…not tomorrow.”
What I know for certain is that this is a serious genetic disorder AND God is miraculously healing and working through Reagan. And God doesn’t have to. Why Reagan?
There were certainly many times we asked after her crisis, “Why Reagan?” in anger. And now we ask in amazement. “Why God, did you choose Reagan to heal in miraculous ways and allow her to have progress but not some of the other GA-1 kids?”
I am beyond thankful and blessed to have Reagan as my daughter. Sometimes, I have days that are so hard and I cry and sulk and get angry and have the complete opposite thoughts. I feel so terribly guilty for having those negative thoughts. Because…I have a lot to be thankful for and to praise God for.
I have a daughter who laughs.
I have a daughter who is trying to walk by herself.
I have a daughter who has figured out how to climb into things and up onto things, who does take food and water by mouth and who is trying to talk with all her might.
No, it is not how I imagined things to be. I imagined a typical child, one who didn’t have to overcome so much. But I read a quote in a blog the other day, that punched me in the gut…the writer said, “Our job as parents isn’t to make photocopy versions of ourselves.” And that is so true.
But if I’m being honest, there were times after we received her newborn screening results and the GA-1 diagnosis that I wanted to pull away, and even more so post crisis. I didn’t want my heart to get crushed again. Each time my heart and soul felt beyond repair. And what I’ve come to realize as the year anniversary of her crisis is on the horizon, is that God is teaching me what it means to love with all your heart. It can really hurt and it is very scary. It can also beat with a love that could burst any fearful thought that comes into my mind. And as I have tears streaming down my face, looking at Reagan sleeping on the monitor and thinking about the days I’ve had lately, I can’t help but feel so loved by God for giving Reagan to us.
I have realized, you have to be broken in order to be fixed properly (and…sshhhh…we’re all broken). God is taking my brokenness and using it to help me be the type of mom and wife I need to be, and in order for that to come through, I need to be refined. God gave us Reagan to draw us, and others, closer to him. Because of Reagan, I feel more alive. I feel like I understand God more…I feel like I understand how the world really works (how God’s economy works). And I feel like our whole family is under God’s wing. The thing that matters most in this life, are the decisions you make for your eternity.
Rob and I know that Reagan will be made fully whole in Heaven, and we pray for her eternal salvation every day. In the meantime we are so grateful to God for working through her to overcome so many things in this life. God is bigger than GA-1. WAY bigger.