A Sweet Moment

The days have been strange since we returned home.  Mostly rainy which I think is unusual for this time of year. In an attempt to help Jordan's hair remember its strawberry blonde color we want to get out in the sun when possible.  It is interesting to me how very important this sense of looking "like himself" has become to him.   We just know the fresh air and sun is so good for him.  So when the clouds parted this afternoon we moved out to the backyard, lazed in the swing back chairs, donned our shades and I resumed my read to Jordan.  I have loved to read aloud to my sons ever since they were young.  And even as they grew into teens, when we are on road trips I would be elected to read aloud from a favourite novel.   So I do love this.  At the moment, we are nearing the last quarter of the book "Hood" by Stephen Lawhead. It is the first in a trilogy followed by "Scarlett" and "Tuck".  You can guess the historical figures they envelope.
The sweetest moment for me though was when I returned with a fresh glass of water from inside and came from behind Jordan's chair only to hear him singing quietly "it is well with my soul".
Considering the morning had been so achingly frustrating for him with random pain strikes that would not go, the sweetness was extraordinary for this parent's heart.

And after I wrote this yesterday afternoon, the next 30 hours have been brutal.   Usually Jordan can sleep without pain, with us waking him for meds. But even through the night, the pain persisted.  With Doctor's consult we have once again almost doubled his morphine.  And still his leg spikes at times. We came close to admitting him to the hospital.  He sooo doesn’t want that – needles and all that goes with it. In the last few hours the nausea has returned with a vengeance. So he has headed to bed early hoping that sleep will cover for him.

Through all this Jordan battles - oh my heart.  I try not to cry since my eyes swell shut and my head aches so that I am not much good to him or anyone but this morning was over the top.  I looked back and realized Jordan has gone a full 9 days in the last 6 months without pain or nausea.  How does he keep his mind?