Archive for November, 2009

november 1, 2009

there are a thousand reasons not to write.  so I mostly don’t.  but I hate feeling like I have left you disconnected.  maybe because these connections have been possibly the most significant blessing God has drawn out of this whole experience.  So the next question becomes how to connect you.

an update on mike…

I broke a little piece off of mike’s feeding tube in his belly last week.  It wasn’t actually that big if a deal but it did remind me that I had been waiting until mike handled liquids with NO coughing to try letting him take pills by mouth.  Mike has been getting all food/drink by mouth since summer but I had still put his medicine through his feeding tube in his belly just to be sure he didn’t choke and cough any out.  He has been taking all medication orally for a week and after a month we can try to schedule to get his feeding tube removed!

mike has been in physical and occupational therapy for less than a month.  He wanted me to buy him a walker and get him on his feet.  I told him there were probably some steps that needed to come before that but he could certainly request a new physical therapy evaluation and see what the next steps are.  So he qualified with improved strength and flexibility to work with since they last saw him in spring 2008.  he has been mostly working on standing practice with them holding him upright with the goal of getting him to maybe do so on his own.  We are not there yet but to be trying it at all seems significant.  You only work on things that have potential, after all.  Occupational therapy is focusing a lot on getting mike’s hands and arms coordinated enough to do some personal care activities himself such as using some modified silverware and trying to wash his own face.  He has definitely gotten some greater flexibility in this area too.

Some gains might be easier to reach if mike would be more interested in spending less of his day in bed.  The wheelchair is not his preferred location despite the isolating quality of being in bed all the time.  He likes a lot of silence and tells me he spends a lot of the day praying.  He currently avoids tv except for some fall football.  (he requests a blindfold if I watch tv while getting his medicine together in his room).  He likes listening to the bible on disc and encourages anyone who ever enters his room to read the gospels daily as he does.  He goes to church weekly and likes to have his wheelchair reclined back with feet in air during the entire service.  He seems to be tolerating therapy sessions 3 times a week without much complaint though he doesn’t feel like the slow pace of progress makes it all that worth it.  His new budding passion is getting all his diverse ideas set on paper.  Throughout the summer he was dictating sentences or ideas sporadically to our caregiver, don, myself or anyone else who ever came to visit.  As I collected the myriad of Young Life club talks and characters and fundraising strategies I began to find the sheer volume of mike’s dictation requests a struggle.  So now he calls his parents multiple times a day and dictates book ideas on his life story to them.  The new stumbling block in this is our phone is tied up for hours a day.  Oh, and he threatens to fire don if don doesn’t call mike’s mom as soon as he asks. 

Sometimes I focus on creating solutions to fit our house with its various occupants and potentially competing needs.  Sometimes I laugh/cry at the absurdities like hearing mike shouting through the house at me, “Fire Don!”   sometimes I consider which of all this pile of life is good fodder for me to write a book. 

 more than a week ago I actually sat down and tried to capture some thoughts I have had floating in my head lately.  They are significant to me but are also very confusing when I try reading them out loud.  But here they are as yet another attempt to connect…

I feel as if I might be hovering dangerously in this life between calmly accepting the hardships allowed me by God and embracing these same hardships as if they are a gift, a grace, an opportunity, as if I am chosen purposefully for this in the greatness of his plans for me.  I can vacillate wishing I was nicer, kinder, more patient, more compassionate to respond to these hardships with a display of those qualities.  Or I can conquer each day with just the perfect amount of brashness, boldness, fondness for truth that God planted in me before time to wield as spiritual armor against the devil’s schemes for me.

I believe both perspectives allow me to function and cope with a harsh reality of life that others may find impressive.  But one view proclaims God’s perfection in every moment and one simply acknowledges his lordship, not his goodness.

So which will I choose?  Every day?  Will I even notice God waiting to listen to my selection from such a menu?  Will one choice become so commonplace as to become my “regular”?

 Never mind if it doesn’t make sense.  More than anything it is probably just a good thing for me to try to articulate something because I give myself little time for such a seeming luxury as thought.  Overall our family is wonderful.  We still receive a measure of gifts from so many that causes me to weep at God’s grace.  mcKaela and eli are growing and healthy and interesting and good times.  Mike is determinedly pursuing the passions I mentioned before.  And I am sometimes joyfully, often barely keeping up with all of my identities/responsibilities as a wyldlife leader, caregiver, mother, and the less respectable titles of vomit catcher, disciplinarian, feeder, backpack coordinator, maid, beginning reader’s audience, shopper, calendar planner, Dr. visit chaperone and whatever else I am too tired to imagine.

I am tired for now and grateful and worn and satisfied all at once. 

Good night and thanks, michelle z

November 1, 2009 at 5:45 pm 7 comments


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