Archive for March, 2010


there is a lot going on–both great and frustrating and monotonous and overwhelming all at once.  first let me say, thank you so much for the feedback which truly does feed us.  second, i am too often still surprised by the impact of my words.  i forget that these hard feelings and experiences that have kept me company over long time are suddenly new when i post them and seem grave and emergent when they are actually what i have gotten used to.  so i apologize a bit for not reassuring you while simultaneously sharing with you our burdens.  not to downplay them but to also keep them in perspective.

now, an update…

i am actually more hopeful about mike than i have been in a long time.  a group of close friends stepped in to support mike and i as we created a new daily schedule of goals and activities that we would be working on and working toward.  mike has really held on to being in bed as much as possible and only doing the exercises (in bed) that he had learned at marianjoy under don’s direction (like stretches and leg lifts and such).  he would do these routines with willingness along with being in the stander 1 hour a day but would rarely show any interest in any stretching goal beyond this status quo.  his focused passion has been on prayer.  so i dreaded a rebellious reaction toward new uncomfortable goals.  as our group of friends met with mike with the challenges he became distracted by butt pain, being rolled over and dread of lost sleep, making it pretty hard to gauge how cooperative he would ultimately be.  he said he would agree to the goals but by his actions he was avoiding real conversation.  the next week we had him eat lunch while sitting in the lowered stander (as opposed to every meal in bed).  it was beneficial for him to be out of bed a bit longer, to be better upright for digestion, to be holding his head up on his wobbly neck muscles and to try to control saliva when he wasn’t simply leaning back in a bed.  the next week we had him begin eating breakfast in his wheelchair at the kitchen table.  this brings him back into the sphere of our family.  whenever we are home at this hour we can now eat breakfast with him and keep each other company.  being in the wheelchair daily like this also allows mike to use this arm pulley system that has sat unused since the fall for some new exercise.  he also takes a daily walk which gives him some fresh air which he usually only gets on sundays for church or going to a dr appointment.  the greatest joy in this so far has been seeing eli eagerly join mike for his walks whenever we are home at that hour.  it was the first time i have seen mike engage in a regular activity that could draw his son into relationship to be quite honest.  eli authentically wanted to spend time with mike in this way and looks forward to it every chance he gets.  the first day spending this time in the wheelchair for these 2 morning hours as a discipline instead of a means to a dr appointment he complained of the butt ache.   i simply asked if his time with eli did not sufficently distract him from that pain.  he has not really complained in the week and a half since.  our next goal will be to enact a new night schedule where he spends an additional 2 hours in his wheelchair watching the kids play in the playroom or outside and then eating dinner at the table too.

i have been so excited to see how smoothly these new requirements have gone with mike.  he is still faithfully doing the same exercises he has been doing in bed twice daily.  but we have added a whole new dimension to expand his life and draw him out of that room.  i pray it begins to empower his relationships with me, his kids, our families, our neighbors, our friends.  i pray that it infects his conversations that have become so limited by the scope of his world.  i pray that he recognizes life in this place instead of waiting for the restored life he craves.  and i even pray that the mere practice of being out of bed can really strengthen him in new ways simply by using those muscles.  by being upright i pray that he would become able to shift his weight eventually and alleviate that butt pain through ability instead of accomodation (like laying on his side perpetually).  i imagine and pray that being upright more will strengthen his lungs and his already much improved speech would become even louder and easier for him no matter the setting.  i pray that he would find new abilities and ways to channel his gifts in being out of that bed.

and so i hope.

and i also sit here, in this luxurious prison still, because the process of finding caregivers to share these night hours (and day hours) to provide the extra labor that goes into moving mike into the chair and back, into the stander and back, keeping up with these goals we are practicing–this process is tedious.  our faithful caregiver, don, is on vacation this week and has requested a weekly day off (God forbid).  we have one new guy in place, tony, who will work 3 days a week and he is starting to get the hang of it with mike.  and i was going to train another guy while don was gone but he has not shown up or answered messages in 2 days so i am here again just making sure i guard my reserve of energy and patience so that it lasts the few days till don’s return.  and then i still need to find the right person to fill the hours to help us start reaching for those nighttime goals.  our ultimate aim is to have an A.M. caregiver 8-3:15 and a P.M. caregiver 3:15-10:30.  without a 3rd guy we are just covering days and one night.  the filled in schedule would accomplish 2 things we have decided are necessary… to physically keep up with mike’s new schedule of goals which are in his best interest for recovery and quality of life AND to remove me from the encompassing role of mike’s caregiver which has taken a toll on our marriage relationship.  we have decided that these 2 aims are worth the investment required of paying a second shift caregiver out of pocket.  so we are committing to keeping up with this as long as financially possible.

so i have hope.

and i am sure that God will provide the determination, patience and right person to fill the role we have mapped out by his grace.  pray for mike’s ultimate healing, whatever that looks like.  thanks for your company, food, gifts, words, listening, compassion, offering, support and faithfulness.  to God be the glory.  happy Easter!

March 30, 2010 at 11:24 am 5 comments


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