Hanging

I didn't realize how much time had passed since my last post. 

Listening to Emily continue to cough in the next room made me think of writing.  She's better, depending on the day, but continues to have a lot of congestion.  She runs a fever on and off, but generally has a little more energy than she did.  She went to school two days this week. 

Abby is a puzzle.  She seems to be overall a little better, but every time I go down on IV fluids she runs a fever.  It is frustrating.  Some days I get more liquids in her, but the last few days she has been so nauseous I've barely not gotten all of her feedings in.  I've decided not to mess with the fluids anymore until after her next doctors visit.  I need help with it.  I don't know what to do.  I want that line out before she gets sick again, and knowing it's not a matter of it happening, just when, is frustrating. 

I'm looking forward to the new year.  I don't know if it will be any different, but I will not miss 2011.  It has been tough. 

I'm kind-of sick of living in the world of disabilities.  I love living in a world with my girls, just not all the problems they come with.  I keep wondering what normal families do with their time.  If I didn't have to get up with kids several times a night and actually felt rested, what would I do?  If Saturday morning, I rolled over lazily in bed and realized it was after 8am, and I didn't immediately panic and wonder if something was wrong--how would that feel?   What would it be like to meet my husband for lunch because our kids were nearly 14 and we weren't so tied down?  How awesome is it to think of a vacation without first researching about accessibility, wheelchairs, side-rails, access to hospitals, and a million other details?

I know from experience that it doesn't help to ask those questions.  There are no answers and it only makes me sad for my kids and myself.  No one of us should live in the land of what-ifs.  The land of what is has to be my focus.  It's the only thing that helps my girls. 

This is very hard and Jeff and I are both tired.  We have no helpers here because we lost medicaid when we left Florida.  There is a five year wait here for it.  The girls will be adults then, if they make it to that point.  In trusting that God knew what He was doing when we came here, I have to trust that He will either supply the help we need or continue to equip us to care for them ourselves. 

I still love being so close to family and have been thoroughly fascinated with the amazing colors of fall. .  It's great to see them so often.  We are having a house full for Thanksgiving and I can't wait.  I'm just praying the girls are healthy and not in the hospital.  It would be wonderful to leave all of this behind for a few days.  n

Still hanging on is the best I can do :)