What I see

I've enjoyed a nice day with my girls--nice and quiet; making soup, baking cookies.  Just the way I like it.  Calm.

Emily had three days without having too many seizures.  She completed some school work, and stayed at school all day.  There are just no words to describe the weight a parent carries when something's wrong with their child.  I don't even recognize it until there's a break, or something changes and some perspective has an opportunity to creep in. 

Emily has been picked up from school nearly everyday for the last four weeks on the days she's even been able to make it to school.  Her seizures have been so frequent that we haven't been able to take a breath.  She constantly stares off into space, her eyes may roll back in to her head, sometimes she just doesn't respond, or she might make a kind of smacking sound with her mouth.  They'd been lasting 5-10 seconds, but going on for hours.  Last week they came less frequently, but lasted 1-1/2 minutes.  We are constantly on edge, carrying emergency seizure medications every where we go.  We put a video monitor in her room so we can see her at all times.  Any time I'm not available, someone has to be on call to pick her up if needed. 

The longer this goes on, the more I'm afraid that it isn't going to end.  Emily is tired and we can see the toll it's taking on her too.

Then we have a day.  A day when she did well at school.  Opening her notebook and not reading about another bad day was such a relief.  Finally, just when I was completely desperate, a good day.  She was wiped out when she got home; she went straight to bed and only got up for dinner.  I didn't care, I'll take it.  Then Friday, another good day at school, but even better--she came home happy and ready to play.  She stayed up the whole day!  Saturday....I didn't know if it was too much to hope for, but another good day.  She went to the park, played with her dog and had an all around good day.  Maybe a few small seizures on Saturday, but not bad at all.  

Today hasn't been a good day.  Lots of seizures, many people at church saw them too.  A few good days give me hope for more.  It's like the clouds open up for just a moment and I can see the sun again.  I remember my daughter, who I've been missing.

I know how hard it can be having kids with disabilities.  I've lived with various degrees of intensity for so many years now, but I am always surprised when were in the middle of it all.

I started this post last week, so...

This week, each day, I think is a better day than the day before.  We seemed to have settled into a routine with a few seizures on most days, but not for hours on end like before.  She has very few good days at school.  She's tired and nauseated from the meds, and the work is just never ending.  We're still not sure what we're going to do with that situation, but we have a health care meeting at school this week to try to figure it all out.

I'm not sure I ever feel more loved or seen by God than when I'm in the middle of a dark time.  It's a light that can only shine in darkness.  It is peace and comfort when those two words shouldn't quite fit.  I am tired and yet I know that a plan as been in place since before time began.  I trust it.  There is a unique beauty in the midst of sorrow or despair that those of us who believe are given eyes to see.  It is our glorious, ceiling-less God who delights in reveling the depth of His love; it really is a precious sight.

Can you see it in your life; in your circumstance?  It's there, I promise if you look, it's there.

2 Corinthians 4:17-18
For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.