Never again do we have to ask permission to take a family vacation, schedule a haircut, plan educational or medical services, or hire a caregiver. It feels like freedom. Do you know what else it feels like? Terrifying, overwhelming, and hard. I am not going to sugarcoat it because I committed myself to honesty and transparency when I started this blog. Parenting this beautiful child is HARD.
Toby and I now are solely responsible to care for this beautiful girl for whom the future is still uncertain. Her journey through Sturge-Weber Syndrome and its complications will never be complete. Despite her lifesaving surgery and its success, she is permanently disabled and the challenges will change and develop as she does. We are not young parents and it can be terrifying if I let myself spend too much time thinking about it.
After major brain surgery, few children escape the behavioral challenges that result from disrupting the structures of the brain. It is almost inevitable. My reality right now is that Miss Angela Hope expresses her hate for me almost every morning as we plod through our morning routine. Sometimes she throws in some name-calling that could make a sailor blush. She does not hate me permanently, in fact she usually loves me again before the bus comes to take her to school. Before that, though, I can easily become defeated. Trying to get her dressed, medicated, and prepared for her day can feel like too much to manage some days. Sometimes the behavior is repeated at bedtime. It is overwhelming and it is HARD.
Sometimes I wonder what I think I am doing, pretending to know how to parent such a complicated child with complex needs. What makes me qualified? Am I qualified? I still don't know. But do any of us? I think it just comes down to putting one foot in front of the other and taking on the obstacles as they come. We are all the same in that regard. Kids surprise us on a daily basis and we do our best to pretend we are prepared all along. Parenting 2.0.
I am thankful for this life. God chose me to be a mother to Angela Hope Harris and I am grateful for the honor. Toby and I are fully committed to her. We will walk into the future with her knowing that there will be hard days but they will not overshadow the blessings. She was and is, most definitely, worth the wait.
