weekends

This is going to be hard to explain.  Weekends when you have children with disabilities.

Remember when your children were young and they took up every minute of your time?  Can you remember sitting back at the end of the day wondering how it passed so quickly?  Nothing is really done.  You fed, changed, cleaned up and started it all again over and over all day long.  Some of you are probably still there.  You wonder if there is anything else going on outside in the world.  When you had to go somewhere you packed and planned for every possible scenario and dreamed of the day when you could just leave the house quickly and feel pretty sure that what you planned would be successful?  Now, imagine nearly 12 years of that.

Life feels limited to me.  Anything isn't possible.  We always have to have a plan.  Then we have plans b, c, and d floating around just in case plan A falls through.  We spend weekends doing what we can to keep the girls safe and happy.  It takes every minute.  Jeff says it feels like we sit around just waiting for them to cry or need something.  It's never a very long wait.  We try to do normal things, but if the girls aren't cooperative, normal doesn't happen.  Even breakfast this morning was a struggle.  Abby didn't want us to make pancakes (she didn't want anything else either), Emily was hungry.  Abby cried, then Emily cried because Abby did.  We separated them, calmed them down, made pancakes to Abby's dismay, fed them and what should have been a 30 minute breakfast took 90.  Our schedule is off now.  On to plan B.

Where is God in all of that?  Where is he when we feel overwhelmed and tired?   Does He see me struggling--wanting to do what he has asked me to do, but not understanding why he's taken so long to answer?  Over the years I have literally cried out for relief.  Let me take care of them, but please, please, please, please, please make them stop crying while I do.  Let us enjoy each other.  Give us peace in this circumstance.  In my mind I wasn't even asking God to change that circumstance anymore, just make it easier. 

I wanted to trust that God was taking care of us, but sometimes that was very difficult.  In those times, I try very hard to remember the Israelites.  They had escaped slavery.  God had changed their difficult circumstance.  He had provided for all of their needs and yet they still whined and complained.  They couldn't recognize the blessing of provision in the midst of their fear of the unknown.  They couldn't trust that He was taking care of them. 

I didn't want to wander the desert for 40 years while I learned to trust God.  Please, please, please, please let me get what you want to show me.  Let me recognize my blessings above hardship.  More and more trust has become my response over fear;  even on days where I can't imagine living like this forever.

Then, a miracle.  Like a spring in the desert.  Help came.  After spending nearly every weekend of our lives with the girls, they were approved for 6 hours / 7days a week of personal care from insurance.  A person on the weekends to lighten the load.  She started today (after breakfast).  The girls were different kids, just having someone else in the house.  They were bathed, the house was cleaned, Jeff cleaned out the gutters, dinner is in the oven and no one cried (except me).  These may not sound like big things, but they are when they can't get done.

I'm not sure why God chose now to answer this prayer I have prayed for 12 years, but he did.  My heart is filled with gratitude and relief.  I'm not sure what he is preparing us for, but I know that if I could trust him all of those years without understanding.  I will trust whatever he has for me now.

John 1:3-5
Through him all things were made; without him nothing was made that has been made.  In him was life, and that life was the light of men.  The light shines in the darkness, but the darkness has not understood it.