Rare Disease Day

 So February 28 is World Rare Disease Day. Kellyanne has Subcortical Band Heterotopia which means her neurons did not migrate properly during gestation. Her band is very thick which means she has severe developmental delays and seizures. She also has Lennox Gestaut Syndrome which is a rare type of epilepsy characterized by multiple seizure types that do not always respond to medication. I think back through the years and realize how truly blessed we are to have Kellyanne as our daughter. Lately, we’ve been going through a rough patch but I’m hopeful that will pass. What she has taught us about life is that you can’t control it. As much as you try to or as much as you want to, you just can’t. We don’t know from day to day what is in store for us. Frustration, weariness and fear are what we live with every day. Michael would question the fear, but as a mom, it’s definitely something I live with. We also live with hope, gratitude, and peace. While our house is far from peaceful, I think deep in our hearts, knowing that we are not in control brings about a peace that you can’t describe. I live with anxiety. Quite incongruent, I know. But my peace is deeper than my anxiety. It’s knowing that God is in control. I’m thankful for my faith and the deep peace it brings. For Kellyanne, on this day, I wish her health and happiness. I feel on some level she struggles as much with her disease as we do, if not more, as she’s the one living with it. As a mom, you just want to make things better…and I can’t . That’s the pain in my heart. Please pray for Kellyanne and for us. We need the prayers. Thank you xoxo