It's the small things

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.   

Dear Friends and Family...

Posted first on facebook...


I just want to take a moment to give an update on the latest development in our lives.   For the last several months, my husband, Marcus, has been experiencing some odd symptoms.  First it was numbness in his hands.  Then it was numbness (but not muscle weakness) in his right foot, eventually spreading up to his leg, chest, arm and most recently, his face.   Since the beginning, he has seen both his regular doctor and chiropractor.   Neither of them believed this was serious in the beginning.  His doctor ordered x-rays (clear), an ultrasound, and other tests, some of which are still on the calendar.  He started dropping his drumsticks (he's on our church worship team).  He's had trouble playing his trumpet due to the numbness in his face.   This weekend, though, things worsened.  He couldn't feel where his foot was on the bass pedal.  He made the call to ask Robert to drum instead, and on Sunday morning, he had trouble putting the lid on his coffee cup.   We got him into the doctor on Monday afternoon, had an MRI Tuesday morning, and by Tuesday afternoon, we had some answers.  

Marcus has several lesions in his brain called arteriovenous malformations (AVMs).   This was not an unknown term to us, because when our daughter had brain surgery 9 years ago, this was one of the initial possibilities.  It is a congenital condition with no known cause.  One of them is large and on the left side (hence the right-side symptoms) with some evidence of bleeding.  Another one is in the pons, the brainstem, which is typically an inoperable location.  There are several more in other locations.  As he says, his brain looks like Swiss cheese!   He's been referred to a neurosurgeon, but this is not an immediately life-threatening thing, so his appointment won't be for a couple of weeks.   There's a number of treatment options, probably surgery, but we really won't know much until after that appointment.  

My mind has been all over the place with this, but here's where I am at the moment:  we are BLESSED.  It isn't cancer.  It isn't a degenerative disorder.   We have a GREAT internal medicine doctor (she's my doctor, too) who Marcus just switched to recently from his previous doctor who was closer to JPL.  I'm so very glad he did!  Marcus has been approved to work at home for the next month, so he is sitting in his favorite chair with his feet up and his laptop in his lap, cell phone in hand as I type this.  I'm glad he won't be driving an hour each way every day with that numb foot.   We went to his appointments together, cracking jokes and making doctors, nurses and lab techs laugh with us.  We had lunch together on a week day!   That NEVER happens.   This may be difficult, but I am enjoying his company, and that is sweet.  We have a lot of folks at JPL who care and are doing everything to make things smooth for him.   We have an amazing church family at NewNaz surrounding us with prayer.  Marcus is the kind of person who has sown seeds of kindness and humor everywhere, and it is obvious that a lot of people love and appreciate him.   We have great kids who are supportive in everything.   We have a great relationship.   As I've said before, we are writing our own love story, and it's a good one.  Apparently, now it will have a new chapter with some new challenges.  Whatever they are, we will get through it together.  We've been down the brain surgery path before, so how many people can look that monster in the face and say, "been there, done that!"   And there are so many more.  

Last week I took the kids to Chinatown for the day.   There is a waterfall/fountain there with various little curiously shaped bowls perched here and there with labels like "Love," "Romance," "Wealth," etc.  Obviously, I don't believe in the validity of that kind of thing, but I thanked God as I recognized how many of those blessings I already have.   There was one, however, that caught my eye: "Vacation."   Honestly, I've felt so tired and weary lately that a vacation seemed like the height of paradise.   I thought, "you know, Lord, a few days off would be so great!"  I had five pennies and I had given the kids two each, so I took my one and tossed it over the water and rocks to the vacation bowl, and to my surprise, heard a sweet "clink" as it went in!   A camping trip in May is a long way off, but I'll hang on to that, I thought.

Surprisingly, I feel renewed and refreshed right NOW.   It always feels like a vacation when Marcus is home.  A whole month of that?  Woohoo! And this situation makes it much easier to say "no" to the less important things and "yes" to a few more fun things.  I feel motivated to begin to take care of the things that Marcus usually does and I have a lot of energy and enthusiasm for the road ahead.   Marcus is optimistic and relieved that there's actually a reason for all these symptoms he's struggling with.  There is understanding and grace now, where there was frustration and impatience before.  I'm grateful for the opportunity to help him because he has been such a rock for me over the years.  It's a good lesson in how we should be treating each other all the time - all of us.  Resist the temptation to be impatient or make snarky comments when someone you know seems incompetent or unresponsive.  You never know what they might be struggling with, and chances are, they are doing the best they can. Trust me, I can be the queen of snark!    

Yes, there are some losses.   He is grieving a bit over the loss of music -- he's had to put the drums and trumpet on hold for now.  He will miss this Saturday's concert and the rehearsals which he has attended every Monday night, and the company of the band members.    He is limiting his driving because his foot refuses to tell him which pedal it's on and he's had a few of what he calls "sporty experiences!"  Our son will have his permit soon, and I'm sure he'll be a very willing chauffeur for dad.  He needs to avoid intense exercise, so his favorite P90X3 workouts are on hold, too.  The unknown path ahead might be scary, but for right now, I still just feel BLESSED.  

To say that God is in control sounds trite and preachy.  Blah, blah, blah, whatever, whatever, is what we think when we hear that sometimes.  But more importantly, God is GOOD.   I can't explain why I felt discouraged and frustrated with just about everything three weeks ago, but today I am empowered and happy, unless there is a God and He hears my prayers and He is GOOD.   The journey may be dark at times, but I can enjoy His presence and I will wring every last drop of joy out this crazy life because God is GOOD and Marcus has always been His biggest gift to me.   Everyday there are blessings and reasons to rejoice.

This is the day the Lord has made; I will rejoice and be glad in it!  

-Bonnie :)

P.S.  What are you grateful for today?  Share them!