Dreams

Only about six weeks after Michael’s last hospitalization (on Christmas), the next episode of Cyclic Vomiting Syndrome, began.  For four weeks, he was up and down, with us knowing we’d inevitably end up here, in the hospital once again.  It’s been over thirteen years of these cycles, and I’m mostly used to the routine and can tell doctors and nurses what the orders are or should be, who to consult, and can recite the medical history in my sleep. 

sunrise view, St. Johns River, Baptist Hospital

But I still hate it. 

I still have the little dreams of things that would make everything more bearable.  I’ve always hesitated to ask God for specifics, because I believe that praying for His will and praying that I can accept that and have the strength needed is what changes my heart, instead of just my situation.  But I’m now praying specifically and selfishly- there is only one possible area of root cause of the CVS that we’ve never explored, and that requires a geneticist.  And getting in to see a geneticist isn’t simple.  So we also need the support of our primary care doctor, and then still only might get in.  After years of having no hope for new things to try and test for, this small glimmer of hope that there could be more than we know, and that could lead to potential new treatments, is big.

That’s my new hope today.

But while I was thinking about that one big hope, I started thinking of other things that I might ask for too.  And while my main prayer continues to be for His will and for strength, I sure would also love:

– chances to go away as a family within a few weeks of the end of a cycle, since that is our highest chance of Michael having enough good days pieced together that we could really enjoy it and my kids worry less about their sick Dad than just about having fun.  (Not really realistic since finances and work schedules don’t play nice with last minute excursions, but maybe one day)

–  more flexibility in work schedules and less commuting hours so I could better balance/juggle the needs at home while still providing.  (I’m fortunate and grateful to work with people who are so understanding of the occasional need to make a hospital room my office, but doesn’t help the daily battle)

–  less fight with disability people to ease the financial burden. (thankful there is some, and thankful for God always providing, but this isn’t a cheap illness to manage)

– hospital rooms with sleeper couches and micro fridges (for a spouse who really can’t leave much, who has had such a room once, it’s the dream!)

Okay, okay, I can deal without the last one.  But God, as I sit beside my husband’s hospital bed once again, I do pray for healing, for strength, for a doctor willing to pursue our last avenue, and for help with finding ways to balance all these things.  You know it’s overwhelming and you know our needs, so I ask that you fill them in ways that we can honor you through.  No matter what you give us, we’ll do our best, but I do pray for these things.  For my husband, my boys, and myself.  Amen. 

Choosing Joy

A few days ago I wrote half a blog post that I couldn’t get finished for some reason.   I was reminded of it this morning, how I’d written about choosing to be happy even in times where that’s tough.  Here’s an excerpt from what I wrote:

“When I was a teenager, the words that could irritate me like no other were “decide to be happy”- usually coming from my dad when something in my teen world wasn’t going quite right- and in the life of a teenage girl, things usually aren’t.  I knew he was right but that didn’t make me like it any more.”

Well, things aren’t going quite right for us this week.  It’s Christmas, the most magical time, a time I truly love.  And today and tomorrow are my favorite days of the year.  Tonight’s plan was our KidStuf show at church, with Michael and I on stage and our boys in the audience, with our amazing and talented team helping prepare hearts of kids of all ages for Christmas.  Then, we were to have dinner with a group of friends we call family, and would end the night with a beautiful candlelight service.  Tomorrow morning we’d wake up to the awe and wonder of our boys’ faces as they discovered the tree transformed with gifts from Santa and gifts from us.  We’d have a relaxing day and one of our favorite meals (a big pot of shrimp boil) before packing the car and making the drive to see Michael’s family for a few days.  As with every day, especially days like this, we would miss Austin and wish he was there.  But it would be a magical time regardless.

view from the room this morning

Instead, I’m writing from Michael’s hospital room yet again, and making sure that all bases are covered for Santa to still visit, and the rest of Christmas Day to be postponed until we’re home.  We won’t be able to reschedule Christmas Eve with our family of friends, or reschedule the trip to West Virginia anytime soon (much too long a drive for a weekend visit, much too expensive to fly and tough to schedule with Drew in school).

Today’s a day I truly have to choose to be happy, but I have to dig deeper than just happy.  Happy is a feeling that is influenced by circumstances, but Joy is part of who you are.  Joy is knowing that no matter the circumstances, no matter the feelings of the moment, your soul has peace.  I could get away with giving into the disappointment today, it’s understandable.  But I won’t.  I choose joy.

I’m joyful for the reason for Christmas, for a savior who was born to change the world.  I’m joyful for the promises made that no matter our circumstances, there is reason for joy.

All around us there are people needing to choose joy because of things happening that make it so difficult.  I see it here- from staff who will be working, to families wishing they were anywhere else.  I see it in those I love who are missing someone or are struggling to provide.  But I’ve seen people choosing joy already today- nurses and food services staff who are cheerful and give no clue they’d rather be home, and family members wishing Merry Christmas to those they see.  And we have many around us choosing to help us find joy by loving us in their own ways, as they have so many times.   What I’ve realized, is that when we choose joy for ourselves, we can’t help but spread it to others as well.

Merry Christmas my friends, what a joyous day it is.

The Deep End

This morning I did a search on a few key words, hoping to find that our press release last week garnered at least one tiny mention in local news.  So far, nothing.  But it did lead me to read back over a few articles from the early days of our search, and reading those were a bit surreal.

In one, my Dad was quoted as saying “My fingers and ears are sore from communicating non-stop,” and the article said “indeed it appears that he, family and friends have left no avenue unturned in their fervent hunt for their loved one, a hunt they believe will be successful.”  In another article, I was quoted as saying “”We’re never going to stop looking for him,” she said. “We’ll keep searching til the day he’s found, whether that means they find him alive or find his remains.”  My mom had similar quotes, with the added impact of being a mom searching for her son.

During that time, though we had to beg for coverage and help, we found it.  We were fortunate.  But now it’s been almost five years, and the quotes would be much different.  Very few people ask questions about Austin, and it’s very seldom we talk about him.  It seems as if all there is to say has been said.  We no longer have large scale searches every weekend and spend our weekdays hanging flyers and knocking on doors.  The areas that family and experts alike think to search have been searched and cleared, it’s no longer likely someone will see his face on a flyer and remember seeing him. 

Today’s quotes might be different, but have no doubt that the same belief that we will be successful in our search is still there.  Our timelines have shifted- we now know it may be years more, instead of the days we initially expected.  For some of us the belief of what we’ll find has been shifted.

The world moves on so quickly and we so often expect people to move on- but hearts don’t heal as fast as the news changes, and not all stories can get wrapped up in a bow.  I read a post from the mother of a missing woman who has been gone 8 years next week, Elsha Rivera.  She’s raising money to put flyers out to the Fort Worth, Texas area where she was last seen, and hoping to get media coverage.  She was asked yesterday why she’s bothers.  She bothers because her daughter is missing.  She bothers because her grandchildren miss their mom.  She bothers because someone likely did something to Elsha, and that person is still out there to hurt others.

The more I think about it, the more I’m glad that people don’t just move on.  I’m not sure what our world would be like if love was so shallow.  Love is deep.  Thank you God for that.

Check out Elsha’s story today.

Friends In the Woods

Growing up, we lived on a few acres at the end of a dirt road, bordered on two sides with woods.  Austin and I made fast and forever friends with the kids who shared another side and had even more property..  We spent countless hours exploring those woods, always in a pack and always finding something to get into.  They really weren’t that dense or deep, but we had such a sense of independence in being able to roam.

Years later, Michael and I bought our first house in a small neighborhood not too far from where I grew up.  Just about a week before Austin disappeared, he found himself depressed and unable to settle down in the house for the night, needing some space and time to wander.  He cut through a neighbor’s yard and out into the woods, wandering much of the night, even though the pain in his knees grew with each step.  I had been alerted to his mental state by a friend, and I worried but had no idea what was coming.  When asked about what was going on after finally coming in, he insisted he was okay and had just needed some time.  A few days later, he again insisted the same to my mom when she came to visit, and after hours of conversation with him, she also didn’t know how serious it was or what was to come.

The morning after we realized Austin was missing and the report had been filed, those woods were walked and searched by several people who had no formal training, but were driven to find him.  I’ll never forget my Dad searching ceaselessly, and worrying that he couldn’t withstand much more of the heat and terrain with his breathing difficulties.  But he wouldn’t stop until he felt he had covered it all.  I was so worried about him holding up for what might take days or weeks.  I had no idea it would be years.

There were more woods in that area than I ever could have imagined.  We had no idea what needed to be covered, so we traversed it all the best we could.  We called in volunteers and friends, had family drive hours to help (time after time) and kept at it.  But we couldn’t believe how many square miles of woods were around us, the aerial maps astounded us.  What was also hard to believe were the numbers of people living in them.  There were whole families, young kids to elderly people, all making their home right there.  They were off the beaten path, and out of the public eye, so easily overlooked or forgotten.  They were mostly kind, mostly offering hope that he would be found.

The sheer amount of woods and the people living there made such an impression on everyone involved.  How could we live right there all along and not really see what was there?  

But what I’ll never forget about those early days, more than anything else, were the friends in the woods.  Each of us had friends involved, and I’ll forever be grateful to them all.  But the ones that stand out to me the most are the friends who never knew Austin, yet quietly and without being asked went into the woods.  I am rarely caught without words.  However, I’ll always remember when I heard about a group of five ladies who ventured into the woods together to help.  They weren’t asked.  They didn’t want to be thanked.  They faced fears of spiders and snakes, got dirty and scratched.  They gave me hope.  Several months later, another friend casually mentioned that he felt sure Austin wasn’t in a specific area because he had been searching there.  I looked down as he spoke and realized that his arms were covered in scratches that were quite bad.  He had not been asked, and didn’t want to be thanked.  He gave me hope.  I had no words to thank any of them then, and barely do today.

As a kid, the woods were magical but as an adult they’ve become a place of learning.  Learning about Austin’s last days, learning about seeing what’s around us, and most importantly about how real friends will go anywhere, even in the woods.