Pressure Point

We are hard pressed on every side, but not crushed; perplexed, but not in despair;  persecuted, but not abandoned; struck down, but not destroyed.    2 Corinthians 4:8-9

There's a song lyric that asks "how many times can I break til' I shatter?" 
It's an interesting question that I find myself singing more often than I'd like.   

The simple answer is that I can't shatter, even if I want to; but sometimes I break and sometimes my kids break. 

Today, it's Abigail. 

My sweet Abby.  She's really the sweetest girl you'll ever meet.  She's also the most demanding child ever created.  She can make me absolutely nuts, or smile just thinking about her. 

Abby has this sweet way of wrapping her little hand around me to give hugs that melts my heart.  She also needs lots of attention and "lovey's".

The last few days this Sweetie of mine has been having some trouble with her foot.  The way she holds it makes the arch point outward and her big toe goes way in, like a bad bunion--but not.  Her foot has been like that forever, it's always red and something we keep an eye on, but somehow over the few days it went from red to white, to open.  A pressure sore. 

For immobile people, pressure sores are a constant source of concern.  For their Mamma's, it's a source of concern.  My baby broke.  I pulled the band-aid off her foot this evening and there it was; red, open, and just plain mean. 

I cleaned it, put medication on it, wrapped and gently placed it on a pillow, but it hurt her.  Her hands clenched and shook; I could see the hurt in her face.  She's so brave though.  It would be so much easier if she would cry or kick or something.  It's her bravery that breaks me.  It's my pressure point. 

Watching her stoically endure painful, difficult procedures breaks my heart--I think I overuse that phrase, or that phrase overuses me, I'm not sure which it is.  I have this underlying feeling that my girls go through so much, there should be a place where enough is enough.  I want to throw my hands up in the air and ask 'WHY?'  Isn't it enough that she can't get up and walk around?  That she can't move her foot when it's being rubbed open?  Isn't it enough that she can't say "momma, my foot hurts"?  Isn't it ever enough? 

It seems like a big fit over a boo-boo on her foot, huh?  It's really not.  She is only twelve years old and these things are very difficult problems once they begin.  It's frustrating and sad.  Seeing her hurt when life is already so hard makes me feel like we're running a race that we're losing.  I feel like no matter how hard I try to keep her healthy and safe, there are things I miss and things I can't control.  This, I missed.  I could have done something differently for sure.  I will now, but we have to heal a "break" too.

Pressure sores heal slowly because the skin breaks down on the inside before it opens on the outside.  Once that happens, it has to heal from the inside out. 

I need to heal that way too.  I'm like Abby's foot.  There are so many things always going on inside, causing pressure and concern.  Things that can't really move just because I feel the pain.  Life that goes on even when it hurts.  Wounds that can't or shouldn't stay open. 

Pressure points. 

I honestly can't imagine how anyone could handle all of it without a belief in God.  I pray to Him, cry, beg, sometimes get angry with him, but at the end of every pressure filled day, I trust him.  I believe that as my brave daughter shakes with hurt,  he comforts her.  He waits for me and understands what it feels like to watch as His child suffers.  I know that as I struggle to shoulder so much responsibility, I don't have to alone.  I can bring this broken life of mine, and lay it down where there are no pressure points. 

What are your pressure points?  Do you know that there is a place where you can find rest?  There is a place that is calm and still in a pressure filled world.  Oh, how I pray today for healing, from the inside out.

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.