Before I give a medical report that means very little to most people, I think I should share a bit about what's going on in my muddled head and my sometimes dark heart. This situation just sucks. I dropped off Marcus' band music with a smile, but cried later because it just stinks that he can't do what he loves. Music is so important to him, and to me. Many people might think that living with a trumpet player and a drummer would be pure hell, but I love it. I've always wanted a house filled with music, and I love the practicing, even though I have to move to the garage to have a phone conversation sometimes. I have a profound new respect for anyone who is a caregiver for someone they love. It is impossibly difficult and overwhelming to watch someone you love slowly fall apart physically. At the moment, I really believe that the prognosis is good, that Marcus will eventually be able to do most if not all of the things he can't at the moment, but the reality of today just hurts. No matter how much I love God and no matter how much I want to reflect his love and grace in my life, sometimes I just can't live up to that. I've been angry, ugly, and not very nice at times to the people I love most. I'm not a spiritual super-power just because I'm a believer. I'm not. I need grace every minute of every day.
The other day I asked God, "What are you trying to teach me?" There's a whole PhD program in compassion and understanding I never knew was offered in the school of life until now. I really don't understand how human beings can endure so much and keep doing this for years on end. It's only been a couple of weeks and I've felt utterly undone at times. I'm exhausted. I have a cold. For some reason, these things seem so much bigger, and a few cups of coffee and cold meds don't even touch it. Yet I'm finding a lot of compassion from folks who've had to do this kind of thing, and that's really special. There's really no one like someone who has experienced what you've experienced. Understanding is everything.
There are so many small things that have become very precious to me. My daughter played a song the other day, called Lucky, by Jason Mraz. The lyrics really touched me: "Lucky I'm in love with my best friend, lucky to have been where I have been..." Great song.
In December, I did a crazy thing and went to the pound on a whim and came home with a little 9 pound bundle of loyal adorableness. We joke around about how our little Lucy can attack with such vicious cuteness. The floppy ears and slightly sad eyes just kill me! And she's BRAVE. She will face down my German Shepherds and they back off in fear, though they are 10 times her size. She's a little powerhouse of love. She knows when we're down. She thinks every walk is a race and gets excited beyond belief to go for a run or a ride. She follows me around everywhere I go and is sad when I leave. She knows that the perfect way to comfort is to be fully present with me. Most of us encounter suffering with advice and strategy, but really, that doesn't help. This comes from one who is an insufferable know-it-all who has probably turned off everyone at one time or another by offering a thousand ways to fix things. She can't fix anything, and yet she's a powerful agent of healing.
Aren't they an adorable pair?
I had a great conversation with my son last night. It was honest. It was real. We didn't pull any punches with each other. He said something really profound -- beyond his 15 years. He said that what would be worse than losing his dad would be disappointing him. Marcus isn't perfect, but he is the cornerstone of our family. He connects us all, makes us all laugh, mediates all our disagreements and holds us all accountable. His standards for honor are high. Fortunately, he's also patient and forgiving beyond belief.
There are so many small things valued in scripture. The pearl of great price. The ant. The coin lost and found. The little widow with her two small coins. The children Jesus called and blessed.
Isaiah 40:29 says, "He gives strength to the weary, and to him who lacks might, He increases power." Who doesn't need some of that?
If anything, I can say right now that I need a God who is powerful. I'm not interested in a watered-down, safe and acceptable Hollywood Jesus with good hair and perfect teeth. I need a God who puts real flesh on actual dry bones and breathes real life into the dead and makes all things new. I need a God who is absolutely immovable and convicts 100% of the guilty because causing suffering to others is a violation of the holy. I need grace because I have not even begun to master love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and most especially, self-control and I'm just as guilty of causing pain as anyone. We will all die sooner or later, but what we do here on earth has eternal significance. If God gives you the opportunity, be small but love big. Just hold a hand and pass the kleenex. It might mean more than you can possibly imagine.
Blessings abound,
Bonnie :)
P.S. Marcus' appointment with the neurologist on Monday was mostly good news. Most of his symptoms seem to be tied to the lesion in the left parietal lobe, which is what Dr. Bonnie (haha) said before the MRI. (I win!) This is good news because the one in the brainstem is most likely inoperable. Another thing is that the lesions might be cavernous angiomas and not AVMs. That would be great, because they are low-pressure venous lesions as opposed to high-pressure arterial ones prone to bleeding and risk of stroke. The lesion seems operable, but there's no guarantee that removing it will fix his symptoms. That was hard to hear. For now, we continue to wait for the real next steps which we will hear on Monday when we meet with the neurosurgeon.
