Defining Beauty

While traveling today I read an article in the U.S. Airways Magazine by Brion O’Connor about a topic I barely remember.  It included the story of an artist, Fritz Drury, who studies and understands beauty better than most.  He spent some time with the author’s brother, and they were discussing what makes something beautiful, which is a concept very hard to define. 

They came to agree upon the one theme for defining beauty:  contrast. 

 

From mountains to oceans, to paintings to performing art, contrast is what awes us and creates the feeling of beauty in so many cases.  Sometimes it’s as simple as the contrast from our daily view, something so different than what we’ve grown accustomed to, that we can’t help but see it as beautiful.  But we might not have seen it’s beauty otherwise. 

Contrast is where we find beauty in life too, where God shows us His wonders. 

Watching an adult walk down the street is no miracle and is hard to see beauty in when you see thousands of the same every day.  But learn that the young man walking down the street in front of you is recovering from a stroke that partially paralyzed him, and that loved ones feared he may never walk again, and you see beauty in those steps. 

 

Hearing a story on the news of a person found deceased is sad and far from beautiful, when you know that someone has lost their loved one.  But learn that the family has been searching for 11 years and celebrates the selfless volunteers who gave their time and talent, and never gave up, and you see beauty in the pain. 

Reading a message from a woman who is getting ready for work seems mundane and ordinary.  But learn that she had been out of work for over a year and desperate, and you see beauty in that every day task.

 

Seeing a mom watch her son play at the park, just like a thousand other moms is forgotten in an instant.  But learn that she has tears in her eyes because her son is playing with other kids, and feels typical for a few minutes despite his disability, and you’ll see beauty. 

 

God’s work is best displayed in the contrasts.

 

Every few months I get upgraded to first class on a flight.  I try to hide my excitement and act like I have that special treatment all the time.  I look around at people who really do fly first class regularly, and realize that they aren’t enjoying it nearly as much as me.  They’re used to it.  It’s only so cool when you’re used to the back of the plane begging for water. 

 

Despite that, I still want first class all the time.  Despite the beauty of the contrast from struggles to overcoming, I still want no struggles.  But God’s work is best seen in the contrasts, I remind myself time and time again. 

 

Our two big valleys for God to use are Michael’s health and everything that comes with that (financial challenges, emotional challenges, logistical challenges), and our ongoing search for Austin. 

 

Right now, the only real contrasts in our life is the difficulty of circumstances vs. the attitude to persevere and find Hope no matter what.   But I keep believing that one day, the contrast God shows in our life will be that much greater and show His work that much more. 

 

I will keep believing.   

 

  

Abaco Islands, Bahamas

Abaco Islands, Bahamas

Moments

Every bad day has some good in it if you look.  One day while we were still in the hospital this week, the boys came so we could have lunch together.  I love this open space to enjoy some time together, and they love this open space to run and play.   

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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. 

It’s No Marathon

I. am. tired. It’s been a long few days. But I’m boarding a plane, that will take me to another plane, that will take me to another plane, that will take me home. And then I’ll rest. So I can get through the next 11 hours, thinking about that.

I wish I could see the place and time of rest ahead in other aspects of my life. I see no end to Michael’s battle with CVS, though there is hope of a breakthrough one day or a medication that helps. I see no end to our search for Austin, though there is hope of a search with results or maybe even a call with his voice one day.

I sometimes wish Michael had an illness with more risk but more possibility of cure. I sometimes wish we could have a funeral for Austin, with not the answers we wanted but answers regardless.

I think it’s one of the hardest parts of having a missing loved one, that there’s no rest in sight. This isn’t a sprint, isn’t even a marathon- you know how long a marathon is- it’s long, but it does end. For some of us, our search will never end and we’ll never find that time of rest here on earth.

But there’s always hope. It may not be forever, it may end tomorrow. Or we may be on the first leg of a long trip, one that takes us to another point, that gets us closer to yet another point, that eventually gets us there.

But you can’t get there unless you start moving…. time to move.

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Labor Day Blues

Yesterday was a holiday, the end to a much anticipated long weekend. A planned beach day, a fun day. But yet again we found ourselves in a familiar spot, the emergency room.

Michael’s chronic health issues have an impact on almost everything we do as a family. He avoids triggers during rough times and starts treating early. I know the cues and know how to manage his care the best possible. I should have a honorary nursing degree. After twelve years, it’s not something that’s okay but it’s something we manage.

I sometimes get concerned that our boys have to manage more than they should, that Drew must know too much about bad days and how to help when needed. But he also knows that dad always gets better and always comes home. He’s learning that though some days are bad, life can still be good.

He has to learn that lesson with a missing uncle and with an often sick dad. But we face both the same way, with honesty on a level he understands and lots of communication. Just like we need to let him know it’s okay to be sad and miss someone, it’s also okay to get tired and pray for change to the situation.

But it’s not okay to let it be an excuse. It’s not okay to believe every day will be bad. It won’t. His dad is a great example of not letting something bad stop him, just working around it. He shows them daily how to persevere and I believe that our boys will grow stronger and be more caring as a result of all they’ve faced. But I also hope they’ll be happy and believe in good days ahead always.



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If There Were No Valleys

I’d like to write a post about how much better today was than yesterday, some lesson about how a new day brought a new perspective.  In a way that was true, as Michael actually went 12 hours in a deep sleep with no shower or vomiting (shower= even better than meds when he’s sick).  We thought he was turning the corner on this episode.  I even got a few hours sleep, even if it was in a chair.  But that’s a lot better than the night before.

Instead, a new day brought news of my grandmother suffering two strokes in the night.  And my mom, who has been watching the boys while I focus on Michael, needed to go be with her.  But to add to the struggle, her car needed work that she can’t really afford, leaving means taking yet another unpaid day (or more) off work, and of course there was the matter of figuring out how to get my boys taken care of.  I reached out to friends to help solve the matter of the boys, and as I knew they would, faithful friends took that burden away.  There was still the puzzle to figure out of who would take them when, and what they needed, and where they needed to be, but there’s no question of them being taken care of and loved on.  My mom’s car/financial situation didn’t magically resolve itself, and as I write the work still isn’t done and she hasn’t been able to leave yet.  But God will provide, I do believe that.  

Reaching out and asking for help isn’t in my comfort zone.  It’s a phobia to tell the truth.  But I know that I can’t do it alone, and I miss out on so much when I don’t get pushed out of what’s easy.  With our search for Austin and our battle with Michael’s illness, I spend more time asking for help than I’d ever choose to.

But I can tell you this… if I didn’t face these valleys I’d never know the full gratitude of love and friendship.  I would miss the chance to be encouraged by a text, phone call or email that just checks in.  I’d miss a cup of coffee being delivered that wasn’t even asked for but much needed, that warmed more than just my hands.  My kids would miss the chance to know that they can count on others too, that this life is meant to be lived together.  They might grow up thinking church is a place we go, instead of the people who live it.

I’m not crazy, if given the chance I’d skip the valleys.  But since we’re here, might as well look around and enjoy the view.  I couldn’t ask for more.

Room 533

It’s a rough week in our house, with Michael in the hospital as a result of a CVS episode that is kicking his butt.  We’ve battled this for a very long time, with the first episodes just before we met.  At the time we knew so little, and had no idea how many years, hospitalizations and tests he would endure.  Like just about anything else, I think our whole family battles it.

the good stuff

I’ve become as much of an expert on his treatment and illness as possible, his voice and his reminder when he’s pushing himself too hard. Our kids know that Dad gets sick a lot and his hot baths and our frequent quick escapes from dinners out are part of their routine.  My mom picks up the slack when he needs to rest, and especially when he’s in the hospital.  As tough as it is for us, it’s unimaginable for him.  And when we’re in the midst of it, I can’t even believe the world keeps moving outside our hospital window, keeps going without us.

It’s so much like our search for Austin, where we spent the early days not seeing how the world could keep moving, how we would keep moving.  But we each did our part.  In both, some days feel like giving up is the way to go.

But we have to keep battling, have to keep finding real hope in each day.  I sometimes wonder what God has planned for us, when we have so many situations where hope can be hard to find, with so many days of exhaustion and heartache from it all.  Some days are overwhelming.  Today is one of them.

But I still know where my hope lies, not in the outcome but in God being there no matter.  Knowing that God can use even us, even this.  That is hope. 

Tonight I just needed the reminder.