Friday morning (4/11) I had Anne-Marie post an update on Facebook…we were transparent with everyone on how were feeling after meeting with our geneticist and getting the preliminary report of Reagan’s MRI, however, I did not post my thoughts that evening after we had met with the neurologist and he reviewed the MRI with us. This is what I had typed up, but didn’t have strength to finish it or post it.
Friday evening note:
“After speaking with Reagan’s neurologist this morning, the diagnosis is actually much worse than first thought. Instead of the brain damage being isolated in one section or part of her Basal Ganglia, the entire Basal Ganglia has been damaged. (From wiki: The Basal ganglia is associated with a variety of functions including: control of voluntary motor movements, procedural learning, routine behaviors or habits such as eye movements, cognition, and emotion).
Our fears have been confirmed, our little sweet RayRay is lost and she isn’t coming back. Only the shell remains for us to “manage & make comfortable” – as the doctors put it. Our hearts and spirits are literally broken and laying in pieces on the floor. We don’t understand. Reagan’s last moment with us was to turn and grab Anne-Marie’s hand, take a couple quick steps towards her and fall into her mother’s arms to give her a hug and kiss…something she just started doing a week before getting sick and being in the hospital for a week. After that, she turned to crawl back to her toys and play, but collapsed. Just like that, she went from being full of life to not.
The doctors told us that she has no chance of recovering from this. She won’t be able to crawl again let alone walk, won’t be able to talk or even be able to smile at us.”
I’ve cried a lot these past few weeks. Easily more than I have my entire life.
It has been an absolute roller coaster physically, emotionally, and spiritually. Utter exhaustion, uncontrollable crying, hopelessness, outright anger…all replaced with rest, joy, renewed hope, and a tapered down anger. But I’m still angry.
While my feet are planted firmly on the Rock, I still have been battered and beaten from this ordeal; however, I know there is hope. That hope comes from my faith in the one and only true God, our Creator. It is not a kind thought or some other silver lining, because life cannot be lived there. If you live your life there, there is no depth. There is no dynamic relationship between you and your Creator, something he longs for with us. I’m pretty sure God doesn’t mind us questioning Him or his plan, as long as we remember the lesson he taught Job. (see Job 38-42)
I’ve also found comfort in knowing that there are multiple examples in the Bible of people not wanting to face the trials God has set in front of them: Moses, Jonah, even Jesus. Even though Jesus never doubted God’s plan, he still questioned God and asked if there was another way – any other way than the cross. “My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.” (Matthew 26:39 NIV) Then Jesus goes on to question God two more times, versus 42 and 44.
I find a lot of comfort in those verses, especially now going through these dark times. Even though Jesus was 100% part of the Holy Trinity, he was also 100% human. He understood both the plan and the pain of the cross, and wished there was another way. To me, this is one of the best examples Jesus shows us his humanity. Jesus just doesn’t blindly accept that this is the path chosen for him, but questions it. He doesn’t question it because he doubts the plan or thinks he has a better way, but it is simply a cry from his heart…his human heart.
I don’t believe God wants me to blindly accept this path He has set forth for me in this life. Life is difficult, and it’s meant to be. [Thanks Adam and Eve for screwing that up.] Fear, despair, sadness, hopelessness, depression—all of these are a part of normal life, but some want to mistake them for a weakness, a lack of faith or punishment for some sort of sin. Some try to replace these with some sort of naïve optimism, blind faith, or bright, fluffy Internet memes to brighten any gloomy day. Sooner or later, the coldness and harshness of life will catch up to you—and no meme is going to fix that.
God wants us to question the path He has set in front of us. He wants to hear the cries of our heart and be the glimmer of light in the darkness of life. He wants us to confront our shortcomings, fears, and everything that hurts us head on. He wants us to wrestle with Him like Jacob did. (Genesis 32:22-32)
God never said that life would be easy, it’s actually more difficult following after Him and the path He wants us to take. I try to remember that we live in a fallen world; sickness and pain do not come from God but the enemy—and I hate that guy. But my cries are directed to my Father, and He has one heck of a shoulder to cry on.