I can't help but find it strangely coincidental that Lydia has such a combination of health problems. That seems like a pretty hard hand to be dealt at such a young age. There are certain types of seizures related to food allergies, but she doesn't have those kinds of seizures, and so - backed by medical research- we've been told that her allergies and asthma are unrelated to her type of epilepsy. I can't help but wonder, though, if there's more to know and do for her. I decided to reach out online to find other families who may be in the same unique situation that we are in. We have an amazing family and friend support network who are behind us all the way, but there's something to be said for talking to someone who is completely living through what you are. So, even though I've avoided it for several months now, I joined an epilepsy advocate group online. The very first posting I read was from a friend of a high school senior who had just died the day before from one of her seizures. Died. Three weeks before graduating high school. I looked up her facebook profile that was tagged in the post. She was beautiful. Had lots of friends. Involved in her community. Planning her graduation. Now dead.
There are epilepsy patients far worse off than our daughter, which has helped me put things into a healthy perspective. But after learning about this girl, who obviously lived a normal day to day life, now suddenly snatched away by her disease, I was petrified that Bill and I would one day experience what her parents were at that very moment. I couldn't sleep that night. When I did sleep, I had nightmares of her dying. The sadness spilled over into the next couple days. I had faith in God and His care, but this is reality- that His plan may not be to heal her. God's children experience that kind of tragedy every day- we aren't always spared from the pain of this world just because we are His.
The day before seeing the post on the epilepsy page, I'd already struggled with my anger over Lydia's health. It was the last day of preschool, and I had planned to "celebrate" at the spa during my last two free hours of the school year. Then I realized that there was going to be a pizza party for the kids immediately after pick up. So for those two hours, instead of getting a pedicure, I made spaghetti and homemade bread, and baked a cake so that Lydia could eat some of her favorite foods at the party. My anger kept building all morning long. I wasn't mad at anyone in particular, and I certainly didn't resent having to cook for her- I was furious that my baby couldn't even eat a freaking piece of pizza like the other kids. That once again, she had to be different. How do you explain that to a two year old?
By the time I arrived to the school, I was a few minutes late. I gave Isaac his pizza and chips, and put out Lydia's food. She pointed to the other kids eating, and looked at me. I redirected her attention to her yummy food and braced myself for her tears. But instead of crying, she just put her head down and sighed, defeated. It was like she gave up. I choked back the tears and felt the anger welling up inside. I was furious. I prayed silently to God, "Why?? Why?? Why does she have to deal with all of this?? I know You have a plan. But right now I don't understand, and honestly, right now this plan sucks." It pains me to even type that out because of my shame in it, but I was flat out honest with Him about my anger and confusion- maybe for the very first time. I was admitting it to myself and to Him. But instead of repenting of my attitude, I held on to the anger for a few days longer, allowing it to turn to bitterness. Anger itself is not a sin, but what we do with it can be.
By the end of the week, I was sick of living with myself. I was depressed. I wasn't praying or reading my Bible as I should, and it was spilling out into everywhere else in my life. In a way it was good to get out my feelings, but I wasn't doing it in a healthy way. I had enough, and prayed for Him to change my heart. I asked Him to help me fully trust again, and of course He did. It was perfect timing because Lydia became sick the very next morning with a virus. She was spiking fevers, which is dangerous with her epilepsy. She's more prone to seizure activity in those times. By midweek her fever was thankfully gone, but the virus had triggered her asthma. She became steadily worse until she was hospitalized on Thursday of last week. She did well soon after admission, and was able to go home Friday evening.
During this time, I started a new Bible study online with some friends called Faithful, Abundant, True (or FAT as we like to call it) based on a Deeper Still conference in Orlando a couple years ago. The first two weeks were written by Kay Arthur, and she taught on faithfulness. What I learned in the past couple days has really resonated with me. She taught that true rest is found in faith. (Hebrews 3:17-4:3) Kay said, "If I were going to give you a visual of the rest of faith, it would be your head resting on the Bible." On the flip side, unbelief is a lack of faith, and that in itself is sin. Romans 14:23 "...whatever is not from faith is sin." We have to stay in the Word of God to stay strong in our faith. Romans 10:17 "Faith comes by hearing, and hearing by the Word of God."
Kay covered Hebrews 11, and the verse that really stuck out to me was the verse about Sarah. I've read this chapter countless times, and Kay didn't even bring out this verse in particular, so I'm sure it was the Holy Spirit stirring me. It says, "By faith, Sarah herself also received strength..." It made me want to cry- because when I think of Sarah, I immediately think of her laughing in unbelief. My own son is named Isaac, which is the name her son was given, meaning laughter. She made a big mistake in not believing what God said He would do, yet she made it into the book of Hebrews because of her faith! What does that say about the redeeming grace of God? I screwed up big time, just like Sarah did when she laughed, and I was angry because I didn't like God's plan. He hasn't decided to instantly heal my daughter and restore complete health to her little body, and that can be hard to accept. But He still loves me, and His Son- my Jesus- is not ashamed of me. He can and will do great things for our family. My sins are remembered no more. I am weak, but His strength is made perfect in my weakness. 2 Corinthians 12:9. He gives power to the weak; I will mount up with wings like eagles, and I will run and not be weary. Isaiah 40:29-31. I don't have to fear, because He is with me! He will strengthen me, help me, uphold me with His righteous hand. Isaiah 41:10.
I love Psalm 73:26, because it feels like it was written just for me- "My flesh and my heart fail; but God is the strength of my heart, and my portion forever." I may not understand His plan, but that verse-that I do understand. And amen to that.