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. 

Real Life

I love inspirational quotes, blog posts that uplift and empower, special moments with my kids, family vacations, and backyard camping. I love Hallmark moments.

I like to look back at photos from happy days, with my smiling boys and fun yet educational outings. I love to plan those rare days, where I leave the hated blackberry at home and focus on what matters. On those days I dream of my future with a flexible work schedule on my terms where I have more days like this.

But sometimes I put so much pressure on myself and our family to have all days be like that. I’m on vacation this week, and despite lack of finances to go away, I wanted to plan a fun and memorable stay-cation. I made a Pinterest board, I posted on Facebook, I made notes and did research. I emailed the schedule out, and told everyone it would be like vacation except we’d sleep at home. But it didn’t really turn out that way.

My husband got sick, which happens way too often, which ended much of our plans. So I sat home and sulked while letting the boys watch all the TV they wanted. I’m sulking over vacation days wasted and plans ruined and what I think I deserve on my rare free days.

Reality check. Life doesn’t always go to plan, people get sick, things happen. And today I’m not even going to remind myself of all I know, that these days can be just as good (or better) than the planned days, that I have much to be thankful for.

Today, I’m sharing a photo of reality. Not the pretty happy photos we all usually post, but the gritty real life we share with those we love.

We too often put up a front that all is well and life is grand. Then others wish their life was like that. We all do it sometimes, either faking it or wishing for a life we don’t even realize is faked. But we all have these days, not every moment is Hallmark.

Sharing life is sharing it all.

And I’ll start saving money to plan a real vacation soon!

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