Welcome home!

Thursday, April 28, 2016

"Wake up, Noel, she's having a hard time breathing!" said Ate Nora as she repeatedly knocked on the door to the cat's room.  

Opening my eyes, I force myself up and head over to the master bedroom.  Kristy was gasping for air and all I could do was hold her hand and talk to her, telling her that I'm there and that I love her lots.  Her hand felt colder than normal and she didn't respond much to anything I said.  All I could think of doing was to pray silently for her as it was only me, Chris, Ate Nora and the hospice nurse.  

"God please help Kristy!!!"

Calls and text messages went out, is this time for her to go home?  A couple of hours later, her family started to trickle in.  We took turns holding her hands, talking to her, and massaging her feet.  We even Skyped with her brother in China, so that he could be "there" with all of us.  

Around 9:30am, the Lord took her home to be with Him.  She did not struggle or suffer, she was very relaxed and seemed like she was resting in bed.  Thank you God for not letting her suffer any more!  

God, you have blessed me with an awesome wife and many great memories with her!  I thank You for bringing us together, for the love we shared and for her great example of faithfulness.  I know that You have placed us where You wanted each of us: Kristy to fight the good fight and me to support and love her all the way through the fight. Thank you God!

Thank you everyone for supporting us throughout the years, for visiting and reading her blog!  She was blown away by how many views she got and the number of people she moved with her writing.  

Here is one of her favorite pictures of us we took while on vacation on Kauai, enjoy!

Unending Despair

Saturday, April 16, 2016

Watery fecal matter pours from my body.  Ate Nora spends all night cleaning me. Right after I'm clean, my body pours acidic fecal matter like water!  When will this stop?  One day? Two? Cycle after cycle with no reprieve.  I don't even need to eat or drink and my body dumps liquid acid!  Where's all this gunk come from?

Over and over, everyone, especially Ate Nora coxes me to eat and drink.  I bite myself firmly, groan, and scream in frustration... but I dare not harm myself.  I don't think anyone really understands.  I need the external stimuli to stay sane.  Strategically hitting myself, using cold packs, and squirming keep me grounded in the here and now let's me know I'm here even without control of this body.  

Friday , April 21, 2016

I haven't slept in over 24-hours... Well, dozing off for half an hour doesn't really count does it?  I scream to God for help with the repetitive and unending pain.  I attempt to watch Netflix to distract myself.  The blow dryer keeps me warm or creates a different sensation.  Continuously, acidic fecal matter seeps and I squirm in pain.  Getting cleaned, I feel myself flinch and cry, beg and moan.  I dislike myself.  So much for high pain tolerance... I'm all worn out and have none left.  

Father God, I'm so very tired!  There's talk of placing a fecal tube up my butt.  Even though warned of the is comfort, I find that I want it... even if with my crazy water fecal incontinence, the tube May last only a day... there would be some relief from the acidic sensation that rolls through.  In the end, the idea got nixed and I find myself very disappointed.  However, Father, I know that whatever is happening, I may not know why... But nothing is out of your control. 

Sunday, April 24, 2016

I'm now on intensive hospice care and got a nice lecture regarding the fact that I'm going to die anyways.  The lady tells me, "Don't struggle so much, you do know that you're on hospice and will die soon.  Accept it and just take pain meds."

I nod my head... She ddb't care about what I had t say... she just wanted me out of my blatant misery. 

Lord God, I will trust in your provision.  I may not understand why things are happening the way they are, but into your care I g e my life.

In Jesus' name I pray, amen. 

Eating well... My Dad and I with large living sea urchin we're getting ready to eat:

Ate Ńora and î playing around at night:

Caregiver

Thursday, March 31 , 2016

"Sorry.  We cannot accommodate your needs.  You require intensive care which will cost more."

"How about just one more night.  Please!

"That will be $40 an hour at night."

"We can't afford that on our budget!"

"Our company will pro-rate our services and return the unused portion.  Thank you for your time."

Ahhhhh.... God what do we do?  My body is acting up with super wet fecal incontinence less than every 5 minutes! You touch me and my body pours out gross wetness.  Pain.  Acid stinging.  My anus is raw from being wiped.  My body spasms with constant discomfort. Why Lord!  Help!  I need you!  I need someone to turn me when I can't move!  I got labeled too high maintenance... What am I supposed to do?  This is not the body I choose, but you gave it to me.... now please provide in how to live in it!  My family is amazing catering to me literally day and night on a rotation of two ppl at all times, but they are all burnt out and tired.  Each has their own life as well and Noel starts work next week!  In Jesus' name I beg for help, amen!

Half hour later while wallowing in despair, a phone call comes through for Noel.  "Noel, I kept an eye out for someone who I believe may meet your needs for a caregigiver at night. She is really good."

"When can we meet her?"

"I can bring her in half-an-hour.  That okay?"

Instant click.  Ate Nora is tall, capable, hard-working, compassionate.  Thank you, God!  "Can she start tonight?"

"She is willing to start tomorrow night."

Can't force anything.  "Okay. See you tomorrow.  Thank you!"

That night, my body poured fecal matter every 3-5 minutes the entire night!  My brother, Chris, and family friend, Josh, spent the entire night stuffing paper towels to catch the copious fecal material literally pouring out my body.  So gross!  Where I'd all this come from?  I don't even eat or drink this much!  I cry and groan to no avail.  My incontinence does't stop until the next midday.  I'm so happy Ate Nora didn't start last night!  This body is enough to scare anyone off!  Me included!

For a couple days, Ate Nora, my nighttime caregiver cleans me.  She carried me to the toilet.  Pets my hair when I groan in pain. Reassures me everything is okay.  Stays up with me the entire night cleaning.  Hugging me.  Comforting me.  She constantly massages my numb legs without me begging.  She makes me laugh my putting a smiley cold compress on my forehead. She stretches and encourages exercise.  She kisses me gently when I want to cry.  Most important, she prays for me!  Th joy she exudes is special.  I stink.  I poop all the time.  And yet, she still speaks to me patiently with a beautiful smile all night without sleep.

As soon as I eat or move, I poop.  Ate Nora keeps saying, "don't worry, I'll clean you up."  No guilt. No pressure.  Lots of acceptance.  Frequently, I require cleaning again and again and again within seconds of already being cleaned!  So embarrassing!

Thank you, Lord Jesus, for providing a beautiful person willing to be by my side.  She shows me a piece of your unconditional love.  Now that Noel is going to start work, you've provide an angel to take care of me on a live-in basis so that my family and friends don't burn out anymore. Thank you, Jesus, for your amazing timing and constant provision whether I cry in distress or whimper in pain, stink, or squirm with itchiness.  I can't move.  I don't know why you woke me up so boney, helpless, weak... but you did.  I still live to serve you, Jesus.  Heal me!  I may be only 80 pounds of skin and bones, but you created me.  Give me purpose!

In Jesus' name I beg, amen.

Ate Nora making me smile: