Rest

I’m a skilled sleeper.  I have been known to fall asleep in movies, concerts, once in a comedy show, and regularly in my son’s bed when laying down with him “for just a minute.”  In college I’d rather go to bed early than go out most of the time, and it’s even more true now.

But rest… rest is an entirely different thing.  And I’m not good at it.

Rest is about refreshing, recharging, healing.  It’s about quieting and just being.

And I don’t know how to do that.  I must check my email, social media, text messages, etc.  I must be doing something productive to feel the time is worthwhile, or at the very least be doing something.

But rest and laziness are not the same, as rest has true value in itself.

This week, Michael is back in the hospital after about a month of being ill, with the past week quite bad.  I told him many times that not being able to participate in things they way he wants to and should be able to doesn’t make him any less valuable or loved.  Because his body needs the rest, and when pushed only punishes him.  Though he hates it, he’s now to the point where we have to force rest, because the only other option is terrible nausea and constant vomiting.  There are a lot of meds forcing it, giving it time to get past this episode.

I’ve made the decision in the past few days to let this be a season of more rest for me too.  I’m not sure all that entails, but I’m praying about it, because my natural inclination is to try to do it all.  Some projects need to fall by the wayside, for now at least, to free my mind for rest, which can lead to wonderful things.  And closer relationships with those who matter most- God, our family and our friends.

Do you push so hard that you never rest?  Have you asked yourself why, or planned when it will slow enough that you get that much needed rest?

God can reach us through the unrest, but it’s sometimes so much easier to hear Him when we rest.

rest

Life Is Good

We always have something going on in this family that acts as a speed bump.  So much so that over the years I’m almost more uncomfortable when there are none.  {Almost}  We dump a lot of plans because of Michael’s unexpected hospitalization or the build up of illness before it, and we always seem to have one child or the other sick as well.

But last week’s still threw me for a loop.  Though it shouldn’t, since a variation of this story seems to happen every two years.

I’ve had a very small and very slowly growing ‘something’ on my neck for several months, not of much concern.  But early last week I realized it was hurting, growing rapidly and very red.  Consensus was that I should see the doctor.  But I was traveling a few days and couldn’t get in ahead of that and really figured it would be okay to just wait and see if it went away.

So I spent the next few days convincing myself it wasn’t really that bad, and thinking it might just go away.  It didn’t.

Friday morning, I went in to the doctor and was promptly sent to the hospital.  I genuinely didn’t feel sick, though going in I’d known it was pretty bad.  The hope was that it was an infection of some sort, but could possibly be something even worse.  If infection, it’s location made it more dangerous than it might have been otherwise.  So, off I went.

Actually, first I was on a conference call for an hour or so getting some work done, then I sent out some emails, all while waiting for a call that I had a bed. I finally went and the same concerns were repeated, and potential plans were discussed.  I had some tests that night, and learned the next day that it was infection thank goodness, and started strong IV meds. Then some painful stuff happened {let’s just block that from memory} and we waited for meds to begin working and to figure out exactly what was growing.  The assumption was a really tough infection that would mean me going home on 10 days of meds through a PICC line.

Oddly enough, throughout the ordeal I felt pretty good.  Well, other than when my skin tried to crawl off as a reaction to the meds, but we switched meds and all was well.  So, feeling pretty good, Michael and I hung out and actually enjoyed some time together.  We watched about 10 episodes of Arrested Development, we watched football, we joked about our idea of a good date.  A few friends visited and my mom brought the kids to visit.  I even got to Facetime in to my birthday party.

Yeah, that part stunk.  I had joked with a friend about how something always comes up around my birthday, and hers was just last week, so we got together with another friend whose birthday is between ours, and planned a fun night.  I missed it.  Of course.

Eventually, the unexpected happened.  It was determined that I can take oral antibiotics, which meant going home and without a PICC line, which would have been a major speed bump to some plans over the next few weeks.  I felt like we’d broken out of jail!

Truthfully, there were some scary moments, and I’m grateful for the prayer and love from so many.

We hate the speed bumps, but without them we might forget how much we have to be thankful for.

So, back at home, back to work and back to hanging out with the kids I love.

Life is good.

some of the meds

some of the meds

 

 

Not in the Happy Ending

I read something somewhere this week about the story of someone’s life not being in the happy ending, and it resonated with me strongly.  I try not to focus on the happy ending.  I really do.  But I always feel the need to have something I’m working towards, something to gauge my progress, or a milestone or event that should bring me ever closer to things being ‘easier’- whatever that means.

I once continued to date a guy way past when it was clear that he was not the one for me, simply because I thought I’d invested way too much into the relationship to not believe there would be a happy ending.  I’ve spent a few years at a job (several times) really enjoying it, but always thinking of how it would help me toward long term goals.  I’ve maintained a positive attitude about the search for Austin, because I knew there will come and end one day.

Newsflash Anita!  There may not be a happy ending for every situation.  Or the happy ending may not be what I hoped for or expected.  And even when there is, that isn’t where the story is.  They story is in the daily details, the ups and down, the good and bad, the joy and the pain.  And when we focus our own lives on the happy ending we expect, we miss out on our real story happening. Or at least I do.

Chill as he waits for surgery

This week, like most, we’re going through the not so fun trials of normal life for us.  Last weekend, Michael was sick and home in bed for much of it.  Tuesday, Drew had minor surgery and spent most of the week recuperating.  Austin’s birthday was Wednesday.  Today, Drew is doing another not so fun medically necessary activity.  I could have so easily been stressed out this week, because between all of that and working and hosting a party this weekend and preparing for travel next week, it’s just a lot.  But I kept taking deep breaths and remembering these things.

Michael was able to enjoy some of the weekend and is doing well now.  Drew’s surgery means that he should have relief from the constant sinus problems, asthma and headaches.  Austin’s birthday is a day we can celebrate his life.  Drew’s day today will go a long way towards solving some other issues he has going on.  A party to plan means we have friends to love.  My busy work schedule means I have a good job to provide for us.  These are good things!  Sometimes it takes looking at the flip side, to see the good through the junk.

There is one thing going on that I just can’t see the good side of this week.  32 years ago Wednesday, God gave me a brother.  28 years ago, God gave me more brothers, though not by blood or marriage.  One of them is in the hospital after a stroke, at just 37 years old.  It’s not his first stroke.  His kidneys are also not doing their job well enough, and different specialists are all involved to help him.  There’s nothing good about this happening.  But I do know there is this to be thankful for in his story:  He has been blessed with a wife that takes care of him with such strength, and is such a good partner.  He has four kids that love him and need him.  He has family who feel the same.  He has good doctors who will figure this out.  He has good therapists helping him work towards recovery.  For all that I am thankful.  For not knowing how to help more, for that I am lost….

I still hope for happy endings for us all.   But they may not come as we want them, or as quickly as we want them.  So for now I’ll keep looking into our stories, seeing all the good there is.  And praying for strength for the times it’s too hard to even see that.

Because our story is not in the happy ending.  It’s in the life in between.

~Anita

 

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. 

Small Thanks, Big Change Project

An idea started peculating in my brain on Christmas morning.  Michael was in the hospital but doing well, and I had taken the boys to visit.  We stopped in the cafeteria first, everyone hungry after an early morning of finding what Santa left under the tree.  I was very thankful for the hot food and warm smiles of the staff.  I didn’t hear one bit of grumbling about being there on Christmas morning.

I was also trying not to grumble- my boys were happy, and my husband was on the mend, but it wasn’t where I wanted to be.  It probably wasn’t where they wanted to be either- but thinking on it more, I’d bet that at least a few of them volunteered so those with young kids could be home.

As I let the boys pick their food, including a request from Drew to see if they could put chocolate chips in the pancakes (and yes, they found some), I wanted to tell them thank you for being there and being open, for serving hot food, and for doing it with smiles.  (I know it was a management decision to be open with full menu for staff and patient families, but you never would have known it wasn’t their choice.)  I wanted to tell them that on a morning like that, it meant the world to have my boys smile over the buffet of choices, and the time saved from cooking to instead be with Michael.

But I don’t do that.  I save words for things I think, not things I feel.  Sometimes I put them here- but that’s pushing it.  To be vulnerable enough to tell someone how much their simple actions meant?  Hmmm…. well, it was Christmas morning, a morning for miracles.  So as we paid, I looked the cashier in the eye and told her that though I knew she’d rather be somewhere else, it meant a lot to people like us, and thanked her for the cheery attitudes.  She did seem a bit uncomfortable, but sometimes that’s a good thing.

If we think about it, there are lots of small things that are done for us by people with no expectation in return.  The more I thought about the small things that Christmas morning, the more I started remembering other small things over the past few weeks.  And the more I thought about the small things, the more gratitude I had for it all.  I could end it here, and encourage us all to keep doing those small things, and keep recognizing the small things done for us.  But I read this morning:

Living with gratitude is nothing is not expressed directly, personally and immediately- Pete Wright

So I’m starting the ‘Small Thanks, Big Change’ project.  I’m challenging myself, and challenging you, to let people know that what they do matters.  I’ve made small note cards that tell people thank you, and let them know about this project.  I’m including a small gift card in each one, with the goal of giving out at least one each week.

I’ll be sharing some of the stories here as we go, but also made a Facebook page to encourage people to find their own way to say thanks in a small way that can have big change.  Hang out with me there, and share your stories of small things people do- and hey, I’ll definitely count you liking that page as one of them!    Facebook:  Small Thanks, Big Change

If I’m the only one changed (even a little bit) by this, by being pushed to see the small things all around me to be grateful for, it will have been a great investment.

And I’ll start with this- thanks for reading my random thoughts and learning about my nutty self over the past year or so.  It’s been good therapy to say the least.  Can’t wait to see where we go from here.

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.

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.