The List

Sometimes you just have to breathe.

Close your eyes and take a deep breath.

Sit down and make a list.  A list?  What?

My parents are visiting and after sharing some strides that Danny is making, my mom said we should make a list of everything we used to have to do for Danny that we don’t anymore.

Talk about an altar of remembrance.

We used to…..

…move Danny’s limbs for him to help him keep his range of motion.  He still required an Achilles tendon release surgery for both ankles.

…feed him through a feeding tube.  We had to have it replaced four times for various reasons; some just got clogged, some exploded.  He would be hooked up to it during the night and every four seconds it would pump it.  Danny’s lowest weight was 158lbs. He doesn’t look sick anymore.

…clean Danny’s ears, nose and clean the thrush out of his mouth.  And, watch out for his bite reflex as he got my finger one time.  When Danny was fed through the tube, it was because he couldn’t control anything in his mouth and he’d choke, resulting in aspiration and pneumonia.  It was serious.  We couldn’t even give him water or let him suck on a sponge; nothing.  So, his mouth was nasty; coated in thick, stringy yuck.  I couldn’t stand it for him and I would use two toothbrushes to try to clean it all out as best as I could.

…change his diapers and all that goes with it.  I think we’re past that time long enough now that I can also tell you that we used to have to do a bowel program.  It brings a whole new meaning to intimacy in marriage.

…hook Danny up to an oxygen mask and take all his vitals nightly.

…restrain his right hand (the left one didn’t move) to keep him from pulling out his feeding tube, his catheter or pinching the fire out of your arm.

…transfer him in/out of bed/wheelchair many times a day using a hoyer lift.

…wake up with Danny at most every three hours to turn him in bed.  We used many pillows to position him because he couldn’t hold himself in any way.

… feed him.  Then, once he could feed himself, we had to regulate his bites, the size and frequency.

…shave Danny’s face, shower him and get him dressed.  To get him dressed, we had to put him back in bed (hoyer lift) and turn him back and forth to pull things up and down depending.  This is also what we had to do if we needed to change his diaper; back into bed and the rolling back and forth, all the while being careful not to let him grab you with his right hand or perhaps he might bite, like he did his poor mom.  This always took two people.

…load him in and tie his chair down in the big conversion van.  The van that he couldn’t see anything but the ground because he sat so high.  Thank God, we can ride in a car now.

…put him in the standing frame.  He wasn’t always very cooperative about it either.

I could go on with the list, but it’s late.  I just tucked my baby boy in bed and I hear the dominoes being stirred next door for the regular tournament; they are Cubans, remember?  Danny will be home soon, hopefully victorious and hopefully having used his left hand to play his turn.  Like Dr. Kaelin says in the new video, if you don’t use it, you lose it and one day, I’d like to add to this list that we used to “tie Danny’s right arm down so he had to use his left,” but we don’t have to anymore.