Over the past 3 years I’ve been asked a lot of questions, but recently I was asked a question that I can honestly say I’ve not been asked before. I’m sure people have thought it…correction, I KNOW people have thought it. I was asked, very sincerely, how we can worship a God that has done this to Ella? How can we continue to worship a God that gave an innocent child EB? (That is my summary, not exactly what was asked). What a powerful question.
First, I want to be very clear that just because Joe and I continue to be faithful and worship Christ, that doesn’t mean we don’t get angry. Oh have I gotten angry! It’s hard to look around and see thousands of 15-16 year olds having perfectly healthy babies, yet Joe and I did everything the “right” way and we got the sick baby. It’s hard to hear of parents who abuse their children or choose drugs/alcohol over their kids. Sometimes it’s even hard to hear friends complain about their kids doing things that in the scheme of life are really insignificant. There are times when Ella has woken up every hour for 5 nights in a row and I’m exhausted, and I just cry out to God, “Throw us a bone! Just let my kid sleep for one night!” (yes, that’s exactly what I say). Yes, I question what in the heck God is doing. Yes, I get mad. Yes, yes, yes.
However, my comfort is in one thing…Ella is not a mistake. She was created for a purpose, and that purpose is far greater than anything I will ever understand. None of us are mistakes, and God has a specific purpose for each of us. I fully believe that in order for Ella to accomplish the purpose in which God set out for her, she has to have EB. Yeah, that’s a hard pill to swallow, and I wish that wasn’t the case, but early in Ella’s life God gave me the peace and comfort to know that in order to accomplish His will, Ella needed EB. I still pray for a cure everyday…I pray that we’ll wake up one morning and she’ll be miraculously healed…but for now, He needs her to have EB. Why? I don’t know. It’s not my job to know. My job is to be faithful and raise Ella in a Christ-centered faith so that one day SHE will know why.
My other thought on this is, how can I not continue to worship? I was shown at an early age (through the love and faithfulness of my parents and other adults in my life) to fully depend on Christ. While my life was relatively uneventful growing up, I did go through difficult times. Ella’s disease is not the first difficulty I’ve faced (nor is it for Joe). Sure, it’s on a whole different level than many other struggles I’ve gone through, but I praised God through those other difficulties, and I will praise him through this one. I can’t imagine going through something this difficult and not having Christ to lean on. He is my rock, my strength, and my comfort.
Christ came into my life long before Ella was in the picture. My faith in Him is not contingent on things being good…if that were the case I’d have left Him long ago. Joella means “Jehovah is God.” God is God! He’s the same God that I committed my life to as a child, He’s the same God that helped me through difficult times in adolescence and young adulthood, He’s the same God that kept Ella on this earth when all the doctors told us she wouldn’t make it, and He’s the same God that will continue to carry us through this terrible disease called EB. He’s the same. He hasn’t changed. So why would I turn my back on someone who hasn’t changed. As I said, I made a commitment to Him long ago, and even though I’ve grown and changed and face challenges more difficult than the ones I faced as a child, in the end God is still God and I need him now more than ever.
Just a couple of days after I was asked the question I mentioned above, I was driving home from work listening to the Christian radio station. I hate to admit it, but I rarely listen to Christian radio. It’s just not my thing. I prefer to listen to country music (I’m a good Wyoming girl), so the fact that I was listening to the Christian station is a bit weird. However, Christian radio was on, and soon a song started playing that perfectly fits this situation. It’s called ‘Bring the Rain’ by Mercy Me.