The prompt at Sunday Scribbling is follow and as I sit writing I have a song in my head – Follow That Sound by Sharon Little

I can hear a telephone ringin’
I can hear a gypsy singer singin’

I’m gonna follow,follow that sound
till i know, till i know i cant be found.

there a woman on her knees prayin’
theres a child in the breeze playin’

I’m gonna follow,follow that sound
till i know, till i know i cant be found.

We were strong and thought we could handle anything.  We had a few potholes along the way and thought of them as trials. We had lost people, but we had each other.

Life just kept moving along and crouching in the wings was a lion, ready to pounce and gobble us up.  We knew he was there but as people will, we chose to ignore him hoping he would go away.

Finally one day, his presence was too closely felt and we knew we had to face him or be consumed.

It was a Friday night and D had become sicker and weaker until I could hear his breathing at night – a sound that both reassured me and terrified me.  It didn’t sound right.  We sat down and looked at each other and he admitted that he needed to go to the hospital.  He wanted to wait til Monday because we knew that he would just sit there all weekend and nothing would be done.

Monday we showed up at the emergency room and because of the ongoing construction, I had to remain in the waiting room.  We were so sure it was his heart, and we were right, partially.  His kidneys were failing and it was causing fluid buildup around the heart.  They thought we were crazy because we were encouraged that it was his kidneys.  We knew he could live without kidneys but a heart was a whole other matter.

We followed the doctors instructions.  He began dialysis and I began researching how to feed him.  We were given dietary information which mostly consisted of what he could NOT eat and it was a very long list.  If it had any flavor, dialysis wouldn’t filter the chemicals that create the delicate balance your body needs to survive.  Too much of this, too little of that and the whole pile of cards comes tumbling down.  I was determined that I would find every way possible to give him enough choices to keep eating from being a punishment.  It didn’t always work and he didn’t always accept the choices with grace, but I don’t think I would have been able to accept it as well as he did.

Initially things seemed better,believe it or not.  The dialysis made him feel so much better than he had felt in a long time, that even 4 hours a night, three nights a week seemed to be a small price to pay.  He was soon feeling better but he couldn’t return to work on dialysis so we followed what we told at the dialysis center and learned how to do peritoneal dialysis at home.  After going through the training and making sure our home was set up for it, we followed instructions and diet to the letter!  We were the local poster kids for living with end stage renal disease.  D returned to work and we gradually settled in to a routine.

We had several good years before the lion returned.  D came home from work one night saying he was hurting and didn’t feel right. He did his first exchange and the fluid was cloudy which means peritonitis.  Such an innocuous word for a decent in to hell.  We went to the emergency room again and they gave him antibiotics and called his PD nurse and she called in instructions for more antibiotics to be used in his exchanges.  Nothing worked and things got worse so fast.  He was in so much pain and nothing helped.  We went to the hospital and followed their instructions and for a week met each morning with hope of improvement.  Every day his white count was higher and now he was so medicated for pain that he was hallucinating but still in pain.

I finally made the decision to move him to another hospital and immediately the treatment changed and he slowly started to improve.  He was so close to death when we got there that it took months.  We lived at that hospital for several months total and our children finished the school year on their own. Even after several trips home and then back the process was slow and some of the damage that had been done to his body was permanent.

He was back at the dialysis center three days a week and so discouraged.  We knew at this point he would never return to work.  We were trying to wade through the muddy waters of insurance and disability and in the meantime life went on, kids grew, bills came, and we were taking it one day at a time.  We had beat the lion back one more time.  We knew he just wasn’t feeling as well as he should this time on dialysis and because of hard lessoned learned we monitored everything closely.  Checked his temperature and blood pressure regularly using own thermometer and cuff.  We watched his diet and read his blood work reports carefully.  We talked to his sisters because he was finally ready to try transplant.

His youngest sister was a close match and the process was started.  We are thankful every single day for her gift.  There were other gifts too.  People who supported us financially, with prayer, with cards – gifts so great that thank you just hangs up in my throat.

The family followed us to the hospital.  Friends and pastors too.  We got up and checked the board over and over again.  The board was where they posted progress and approximate time left .  That board seemed to change so slowly.  Finally after what seemed like years, the doc came out and told us that every went well.  We had several hiccups – adjustments in medication were made and finally we were allowed to move from the hospital to an apartment nearby where we could come every day to the transplant clinic at first.  The transplant was Thanksgiving and we finally got to go home at Christmas.  The process is not easy and the anti-rejection drugs are rough at first but we have graduated to checkups every eight weeks.

Following all that, we are remaking ourselves.  Our lives are not what we planned but we are here and the lion, while not gone completely, follows from a distance for now.  Sometimes the paths we follow are not ones we would have chosen for ourselves, but we walk them anyway.  Sometimes they are dark and full of shadows and then sometimes we step out of the shade into the sunlight and the light and the warmth surround us for awhile.