Seven years post-diagnosis . . . seven years of learning, accepting, accommodating, adjusting, finding our new normal . . . and now I guess it’s time to raise the bar.
There you go changing my plans again
There you go shifting my sands again
For reasons I don’t understand again
Lately I don’t have a clueJust when I start liking what I see
There you go changing my scenery
I never know where you’re taking me
But I’m trying just to follow youIt’s out of my hands, it’s out of my reach
It’s over my head and it’s out of my league
There’s too many things that I don’t understand
So it’s into your will and it’s out of my hands – Matthew West/Out of My Hands
I wouldn’t go so far as to say I “was liking” our life, but things were stable and we had (mostly) figured out ways to manage.
Almost a year ago Caleb’s health started to decline. I didn’t think much of it – there are always ups and downs – but as time passed I became aware that he was gradually losing ground. His forgetfulness increased – his dependence on “rituals” increased.
He refused to leave the house without his e-reader and a glass of tea, even if he was just going to drop off one of the girls and return directly home (Yes, he’s been called Uncle Si). 
Because they were often “misplaced”, he would rather be late than go without one of these items. No amount of reasoning could convince him that punctuality was more important than the very remote possibility that he might have to sit without something to read or drink for any amount of time.
Shuttling the kids to and from their various activities was one of the most helpful things Caleb contributed to our family – but we eventually could not depend on him.
I continued to hope this was a temporary situation, that he’d find his footing again and regain the ground he’d lost. But then the gradual decline became a nosedive. The simple tasks that used to take him months to complete he can no longer do at all. He has trouble even holding things without dropping them. He is always exhausted. He started using a cane to keep his balance. Showers have become unacceptably infrequent. He even forgets to eat.
His symptoms are consistent with the earlier diagnosis of traumatic brain injury, combined with post-traumatic-stress disorder; although this sudden drop in functioning is troubling and has sent him on another round of doctor visits and tests. There could be an added aggravating factor. We are looking at various neurodegenerative disorders. Hopefully we’ll find out soon.
As a result, we are back on the medical merry-go-round, and I am back to micro-managing Caleb’s life . . . not something husbands are particularly fond of! The caregiver support organization I recently joined informed me that husband hostility is very common in this situation. (So that’s a relief!)
So, here we go again…it feels way too early on a Saturday morning to be dragged out of bed. But I’ve done the annoyed groaning and finished the grumbling. I’m on my feet, sighing with resignation as I guzzle my coffee and shed a tear or two. Let’s see what God has in mind for us now.
Proverbs 3:5-6 Trust in the Lord with all your heart.
Do not depend on your own understanding.
In all your ways obey him.
Then he will make your paths smooth and straight.
