This Season of Suffering

In this post I want to give you an update about our current life situation.  (updated 1/30)

This summer we got to spend time in Santa Fe.  In these previous posts, (post 1, post 2) I updated you about my dad’s declining health status; he has recently died from ALS.

Here we are together at my parents home in Santa Fe, NM

Though my dad had been struggling since the fall of 2010, it was difficult to imagine or comprehend exactly how the disease was destroying him until we visited and saw him in person.  Although his speech had been degrading throughout the year, we’d been corresponding on the telephone and without seeing him, we could not fully understand all the ways his body was being affected.   Seeing him at home when we visited this summer was thoroughly shocking.  We were consumed with grief for days, even as we tried to hang out and interact with him and enjoy our time together as a family.

My dad required full-time around the clock caretaking.  As the weeks wore on his body became more and more paralyzed.   In December, he lost his ability to  support any weight at all on his own two legs.   He got an amazing wheelchair, but his decline was so rapid he barely got to use it at all.   It was motorized and  using his head, he could adjust the foot rest and the reclining features of the chair.  He only went outside one time in that chair; just to the porch.   ALS took away his ability to speak; which was by far the most terrible affect.  He also was unable to eat and had to receive nutrients thru a tube.    His arms ceased to work and his body atrophied and collapsed around him.  Physically he was completely debilitated.   We had to help him do everything and he was totally bed-ridden for almost two months.

With ALS, one’s mind is generally un-affected though current reasearch is showing that approximately 50 percent of the time, ALS is accompanied by some degree of frontotemporal lobar degeneration.    Mentally my dad is still basically there, although we've observed what we believe are some cognitive affects which are altering the way he currently interacts, communicates and relates with us.    

My mom, dad, sister (Leslie) and me in Pecos, NM this summer

My mom was functioning as his primary caregiver, but we could see this summer that she needed a lot of help.   Relatives and friends have graciously pitched in to help her and my sister Rachel put her classes at UNM on hold to be at home.  But during our visit this in the summer of 2011 it became clear to Stephanie and I, that somehow we also needed to be there.  We need to be in Santa Fe with my dad, serving him and helping my mom during this season of suffering. 

We borrowed a wheelchair and went downtown this summer.

We returned to Cornell in August to get ready for our fall kick-off.  We did not know exactly what the future held, but we did want to proceed on campus with our students and get the school year rolling.   Together with our staff team and regional supervisors, we decided that we would get things going on campus and then leave after our Fall Retreat.  We were  granted a medical leave of absence in order to help my father in Santa Fe. 

The first 6 weeks on campus were some of the absolute best!   While living here we have maintained close contact with our staff team and have been coaching from a distance.   Right now the rest of our staff team and our CRU student leaders are trusting Jesus and doing an amazing job of shouldering the leadership burden.

We are currently living in New Mexico.  My father passed away just over a week ago.  (1/19/12) 

Along with the physical caretaking, it was critical during our time together to come around my dad and remind him of the hope of the Gospel.  Spiritually he is o.k.  He loves Jesus, and knows the comfort of God in the midst of this affliction, and yet, it is so easy to be overtaken with fear, attacked by anxiety.  As total paralysis and death draw nearer and nearer it is easy to get discouraged and depressed.     While with him this summer, we spent time reading from the Bible, reading Christian books and praying together.  We continued to do that together when we returned this fall.  Reading God's word and praying together were some of the best times that we had.  

You can read more about ALS disease here:   http://www.alsa.org/about-als/