It's not really a secret that my faith has been tried by the monumental losses that Moise has faced over the last year and a half. His suffering has been great and my heart and brain simply cannot wrap around why one child must endure so much.
I've taken this matter up with the Lord over and over.
"Why Lord? Why must he suffer so much? Wasn't it enough to be deaf and to have to use a walker? Was it really necessary for him to be blind and in a wheelchair too?"
Every morning, as Jim wheels him from his bed to the bathroom for me to help him start the day, I feel the familiar twist in my gut. It's a twist of love and affection and unfairness and anger and wanting to punch something, all gnarled into one place in the depths of who I am. Hunched over in his wheelchair, unable to hear because he's not wearing his implant yet, unable to see a blessed thing, legs stiff and contracted and trembling from the clonus that grows worse by the day, he tries to chase sleep from his head. I wonder how it is that he faces each new day, knowing that there is so little to look forward to. His is a world of hazy darkness and distorted sound, all observed from wheelchair level. If I were him I would be tempted to pull the covers over my head and never get up. Yet he has little choice. We pull him from bed to wheelchair to toilet to shower, back to wheelchair and onto the bus and he hasn't a word to say about it, because he can't. I thank my God every morning for a new day, for life and health. But if I were him? Would I be grateful for another day like his?
It seems Moise's Cortisone hip injection has run it's course. His pain has returned with a vengeance, proof that the steroid drug is something like magic. I'm grateful God makes brilliant minds - doctors or scientists or researchers or whoever it is that makes wonderful things like Cortisone shots. However, when I called for an appointment with his orthopedic doctor, the nurse said "Doctor wants you to bring him in to discuss our options." Translated "It's probably too soon for another injection." I have a hunch that I know what the other "options" might be and and if my hunch is right, we won't like them. But I'm not panicking yet. We'll just wait to see what doc has to say. That appointment isn't until January 2. Three weeks. Not too far off, right? No, not for me. But I suspect Moise feels like he's got a knife protruding from his hip and, in that case, three weeks may as well be forever.
The pain overwhelms me. I can't feel it. But I see it. I see it in his flinching when he moves, in the way he holds his leg with his hand, in the pain lines etched in his face, in the alligator tears that roll from his eyes. There's not a blasted thing I can do about it. I'm totally and utterly helpless against the pain. We pump him up with pain meds that take the edge off but they don't take it completely away. And then he's tired and groggy and can't function well. A vicious cycle. And that feeling of helplessness, the total lack of control, the I-want-to fix-this-but-can't feeling is where the greatest trying of my faith comes into play.
This morning as I helped him dress, he grimaced at every movement. We struggled, he and I together, to get him into the shower and then back out and dressed. Throughout the morning ritual I chanted, in my mind, what I know that we know, "God is good, all the time. All the time, God is good." I whispered the words to the song, the one that we sang at my daughter's funeral.
God is good, all the time
He put a song of praise in this heart of mine
God is good
God is good
All the time.
I was sweating by the time he was dressed, medicated and back in his wheelchair. He had silent tears as he slumped, in silent resignation, in his chair. I pulled him close, forehead to forehead, held his hands and prayed with him, for him. "Father God, I know that you are good and you do good. Always. No matter what. But I need you to help me out because right now I can't see the good. I see a little boy, who has never been anything but sweet and pure and innocent, hurting so badly." I prayed for the pain to ease and for the Holy Spirit to fill him with the peace and comfort that I cannot give him.
Later, after the internal battle was quieted, I remembered an experience from last week. A woman who has only recently entered into Moise's life, in an educational capacity, asked if she could come to our home. Moise can't tell her about his home life so she wanted to come see where he lives and learn about our family and how things roll at our house. While she was here she shared a tiny part of her own great heartache and how Moise, with all of his challenges, is playing an important healing role in her life. She knows beyond a doubt that all of it is God ordained. God went to great lengths, not the least of which was moving her half way across the country, to bring her and Moise together.
When I step back and look at the bigger picture, I can see the lives that Moise has impacted as a direct result of the last year's challenges and my faith is renewed. God has a plan for Moise's life and it's an important one. Somehow God will use all of the pain for good. I don't have to understand it. I just have to trust, even during the hardest days, in the one who does understand it.
Trust in the Lord with all thine heart and lean not unto thine own understanding. Proverbs 3:5
God is good, all the time.