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

Vacation- Moments in Photos

Our vacation planning was tough this year, like most years.  I had a week off planned; we wanted something fun yet relaxing, and it needed to be not too far away, have a kitchen, be reasonably super low priced, and have activities on site.  Michael has had a rough summer, so being close by, very relaxing and have a kitchen was key (the biggest triggers for his CVS are travel, being overtired, and eating out).

But as my week off approached, we had no plans.  So I postponed 3 weeks, hoped Michael would be feeling better by then, and asked him to help plan this time.  He came up aces.  He found a lake house to rent about an hour away, a used jet-ski to buy to entertain us while we were there, and agreed to a day at Disney World to make it even better- all within our very small budget.  (One day we’re going to have help with all those darn medical bills and get to take a bigger budget vacation!)

But, in keeping with our traditions, he stayed sick much most of the week, Ben got a terrible infection and had to avoid the lake most of the week, baseball drama kept us fuming over that as much as relaxing one day, and our sweet dog died while we were gone.

I may have pouted about it all.  But I also found moments to lay in the hammock and read, or just listen for God.  He was there, just like He always is.  And without as many distractions it was easier to hear His voice.

And among the junk, were other moments that were priceless, and like everything in life, we had to choose to be thankful for the good between the bad. We found that Disney World will do their best to help kids with a sick dad have a great day anyway, we found a very kid friendly urgent care doctor to treat Ben quickly, we had a few friends share one day with us on the water, and we had quite a lot of together time.

Vacation- Moments in Photos

 

Happy Birthday Week

It’s Birthday Week in our house.  My other half is turning the big 3-4 on Thursday.  And yes, in case you care to point it out, I’m older.  The word Cougar didn’t have quite the same meaning when he was 20 and I was 22 when we met, but it now gets jokingly tossed around.  Thankfully, I have less gray hair than him, but that’s not saying much these days.

I personally believe in birthday week month.  I should get to celebrate all month long, and everyone else should at least celebrate all week long.  It should involve family dinners, fancy dinners, spa days, girlfriend getaways and family football weekends.  It never does, but a gal can dream.  (And it’s September for those of you who believe in making dreams come true!)

Ideal Birthday Meal/Gifts

Michael on the other hand just wants some cake and a gift- and a gift of junk food, kool-aid, and chocolate is acceptable.  He

Goofy and Annoyed- typical!

will certainly not appreciate a blog post!  But since I’m jetting out the morning of his birthday for work, I thought I’d make sure that more people know about his big day and can help me say Happy Birthday.

This guy of mine is pretty cool, and here are some examples of why:

Best Baseball Dad

** He’s funny.  And mean.  But the mean is usually joking, and people know it.  I share the same sense of humor, though I seem nicer at first.  But he makes me laugh.  A lot.

Fun Rollercoaster Dad

** He’s ridiculously smart.  As in, can master anything he puts his mind to.  He can give you detailed stats on a baseball game at the end of it, without ever taking a note.  Drives me nuts.

** He loves our kids as much as any Dad ever could.  And they feel the same.

Ready to Go Home after Hospital Stay #30ish

** He loves God.

** He loves people and will do anything for his friends.

** He has a lot tougher battle than he lets on to most people, battling Cyclic Vomiting Syndrome about as many days as not it seems.  He downplays it and how it impacts him.  But our kids are seeing a good example of how to fight through challenges.

Surf Lovin Guy

** He’s good lookin’.  Just a bonus.

** He loves sports, is competitive and knows a lot about baseball.  For me, those are musts.  Gotta keep it interesting!

I’ll do a future post on all the things he needs to work on.  Kidding.  He knows he’s not perfect, though he’ll tell you otherwise.  He knows there are some areas that he falters, like we all do.  But we’ll keep him

Happy Birthday  <3

Easter 2013

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. 

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.