When the darkness closes in.....

Well, Friday night was the best night we had in a long while.  While we were up every few hours for medication or she would wake up and ask me to rub her leg or arm, it was so much better than what we have been experiencing!  Night two (Saturday night) was not as smooth, so we will try to tweak things a little tonight to see if we can help her sleep better and be more comfortable. 

We meet with our hospice nurse tomorrow and we are scheduled to meet with Dr. Harrod on Wednesday.  We find that she is sleeping more during the day and she is pretty much confined to the bed at this point.  She is still very aware of what's going on and hasn't lost her personality at all, but she struggles with being comfortable for most of the day.

We got Amanda's hair cut today.  A sweet friend came to our house to cut Amanda's hair and even gave me a trim while she was at it. (So thankful for precious friends!!)  The cut is darling and will be much more comfortable for Amanda by getting her long hair off of her neck.

We also had the opportunity to spend time with family today.  It feels like each visit is more precious and I want time almost stop...

We are trying to get her out a little each day.  It gets more challenging each time, but since she loves to float (and we have started to take Ginger) it is worth the effort.

I have been overwhelmed (as I have been this entire time) with the love and support from friends and family.  Thank you for showing your love through gifts, messages of encouragement and most recently, the care calendar.  We are incredibly grateful.

This picture makes me laugh! Ginger does not look very thrilled at the moment.

Combing her hair was always a chore, and for some reason, the bald guy seemed to do a better job at it than mom.  Go figure!!

Amanda was such a trooper getting her hair cut.  Simply sitting up has become extremely challenging for her, but she was a champ.

A little floating to finish off the day.

The conversations are getting harder and harder, but praise God we are having them with her!  Getting Amanda to talk is extremely important but also extremely difficult.  I am incredibly thankful for Thomas and how he handles those moments with such patience, calmness and confidence. That seems to really help Amanda open up and be willing to share. These are moments and conversations I never imagined that we would experience, but know I will always treasure.

Thankful for each day- trials, tears and all.  

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Sometimes the weight of our trials are so severe that we feel as if we can’t keep our heads above the water. The pain is so vicious, the malaise so thick, that we can’t imagine our situation ever changing. We can’t see healing. We can’t articulate hope. And when we try, it just hurts more. We’d rather not pray. We’d rather not open the eyes of our mind — not with all this destruction, not when it’s so dark.

 But Psalm 88 shows us how. 

Cloudy as this psalm seems, (and let me just say -this is a bleak, depressing and dreary Psalm, but this author's point hits the nail on the head for me, so hang with me.) we shouldn’t miss the most obvious point. Yes, the psalmist says his soul is full of troubles, that his life draws near to the grave, that he feels like a dead man, like one forgotten, that it seems as if God has isolated him in regions dark and deep, that he’s drowning, that he can’t escape, that his life is a horror, that he is cast down, unheard, afflicted, shunned — but he’s telling this all to God. (emphasis mine)



He is still speaking — from the pain, in the pain, through the pain. Even if by the faintest whispers, even if by the incoherent groans of a troubled soul, he looks to heaven and says, This is where I’m at, God. This is how dark it feels.
 
We can come to God like this. Hurting and broken, no matter what, we can still come. We can still come because — and we must remember — God isn’t afraid of the dark.
  
He walks that road with us. He prays those prayers with us. He fills us with his Spirit, and lifts our burdened souls by his grace. By his cross and victory, because he looked death in the eyes and came back to life three days later, Jesus holds us when it hurts.  

He leads us to worship in the dark.

~John Parnell, Desiring God