Posts filed under ‘updates’

3/30/10

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

2/23/10 another corner

     It has been a slow decline this past year for me.  While mike’s physical needs have become a bit easier to handle with him eating and swallowing pretty normally, his desire for his pain to be accommodated has increased.  It is impossible for me to be sure whether to trust his own perception of the severity of his pain because he certainly experiences a symptom of brain injuries called perseveration which makes it difficult for him to focus on something beside his pain.  He does live pretty fixated on the pain of the week trading the focus sometimes back and forth.  When we get the various pains checked there don’t seem to be solutions or fixes for his complaints so far.  Among others, he suffers from a pain in his butt (besides me) that he relieves by trying to spend about 14 hours a day laying on his side.  He has also complained that his eyes hurt and has taken to living with a sleeping mask on.  His feet have bothered him since summer which I believe is a nerve pain and he takes medicine but he really likes foot massages.  He desires a lot of attention for these problems.  He wants someone to reposition his pillow, to roll him back and forth, to shift him up on the bed, to shift him down, to rub the tops of his feet, to reposition his arm, to put his eye mask on, to take his eye mask off, to push in his feet, to sit against his feet, to refold the towel and try the pillow folded in half now, to just redo it to see if it gets any better the second time, to talk about how many people will really go to heaven, to discuss how many sins, how much money you make, what bible chapters you are reading daily and what new mission he can set you upon…and of course, make sure you pray for his healing before you leave the room.

I am worn from the daily litany and that’s without even mentioning the nightmare that bowel movements become when the rhythm is off.  And I get less patient, less trusting as we find few solutions and wonder whether it’s time to accept a certain amount of inevitable pain in order to ever have a life outside of that bed.  Obviously, I am not the one in pain so it is one thing for me to say, “get used to it.”  At the same time, mike is less than motivated to make the best of what we have since he is still counting on God’s overnight healing.  So he figures, “why would I make the best of what I do not accept?”

     There is this complicated movie Memento where this guy loses his short term memory and cannot create new memory.  To sum up without doing the movie justice, the wife cannot fathom whether he is really this disabled or whether he is just unmotivated– and in her desperation to know she creates a test for him.  every day he gives her her insulin shot for her diabetes when it is time.  One day after he administers the shot, she waits a minute and then prompts him a second time, “time for my shot” to see if he would endanger her life with the second shot.  Then she sits there, passive, watching him lovingly give her this second shot which kills her, too broken by this emotionally devastating life to stop him.  I identify with the psychological weight that comes with not understanding the myriad of variables that create mike’s choice, ability, potential, independence.  Can he choose differently?  Not necessarily.  But it haunts me as I see the waves of his needs crushing me into smithereens.  This movie husband’s disability eventually killed this wife.

            So in the interest to not be crushed and therefore to prevent our entire family’s wreckage as well, we are trying to make some life changes.  We have had our caregiver, don, working 7 hours daily, 7 days a week for the last few years.  We are in the process of trying to find another caregiver to work the evening shifts like 3-10 pm maybe 6 days a week.  It will be a big adjustment I am sure, both financially and just in finding, training and getting used to another regular housemate.  Mike is on board with this chage as he experiences the lost temper, impatience and distance from me that result from my own sense of being overwhelmed.

            I listened to Small Town Poets’ No Kinder Savior this morning that reminded me of this truth– “for the one who’s ready to give up, no kinder savior will be found”.  We are in a broken place and have been overwhelmingly blessed by friends who have stepped up to hold our pieces together as we try to apply some glue with a second caregiver.  God has still been good, all the time.  And though I feel a bit numb from the years, he still answers the prayers I can’t even articulate, mobilizing a community of saints that still bring meals, visit, feed, pray, give, rub feet, babysit, listen, counsel, and uplift.

            So this is where we are at and I am sure even this barely scratched the surface.  Sharing it takes opportunity and intention and attention that can’t respond to a conversational, “how are you guys doing?”  and updates probably won’t get any more frequent as our daily life seems to be about all I can tend to.  We are close to the 4 year anniversary of when our lives turned a corner on march 21, 2006 as well as mike’s 38th birthday on march 23.  I only acknowledge that since it’s quite possible I won’t be up to updating again before that.  though I don’t write often there is not one moment we don’t still count on prayer to sustain us as mike and i survive, discover, wonder, make decisions, and try to connect with the world and each other respectively.  And if you are local and we haven’t seen you in a while, consider stopping by.  I haven’t been much company for mike in a while and it’s always nice to catch up.  If you are at all interested in sharing a meal as a means for a visit check out the website lotsahelpinghands.com for our schedule or just surprise us!  Thanks so very very much.

In his hands, michelle

February 23, 2010 at 5:02 pm 9 comments

december 18, 2009

our friend ben thomas sang and played at our wedding.  i still love to look back at pictures of him and his big red guitar at the service and remember how much mike and I enjoy his talent.  ben put out this cd called the bewildering light  a couple years ago with songs from the perspectives of some of the familiar faces around the nativity scene (along with many other great cd’s over the years).  My all-time favorite ben song is called Zechariah and the Least Expected Places on this Christmastime cd.

I am just going to print the lyrics to bless you…

 Jerusalem and the holy temple filled with smoke

Zechariah shuns the news from the angel of hope

Stuck behind an incense cloud of religion and disappointment

God keeps slipping out from underneath rocks in alleys off the beaten path

Open both your eyes

 Prophets and kings and poets can contribute their work

Just like eggs in a nest are alive with the promise of birds

but THE LORD OF CREATION WILL NOT BE SUBJECTED TO EXPECTATION

God keeps slipping out from underneath rocks in alleys off the beaten path

Open both your eyes

 Elizabeth barren her knees black and dirty like coal

Her consistent prayers float to the sky And revive her soul

GOD WE WILL WAIT THOUGH WE DON’T UNDERSTAND YOUR REDEMPTIVE STORY

God keeps slipping out from underneath rocks in alleys off the beaten path

Open both our eyes

      this song is full of lyrics I love but I find I can simply not get over the two lines I bolded for you.  Christmas is a weird time for me.  Part of it is that my love language is not gifts.  And I find gift-giving and gift-receiving not as gratifying as the rest of the world seems to.  Part of it is that the Christmas story is not new to me and so I struggle to experience it as if it were fresh again.  And trying to conjure up feelings of seasonal enthusiasm confounds me.  And the more you try the harder it gets.  But when I listen to this song I relate to Elizabeth and it becomes a prayer that revives my soul.  It reminds me that I don’t have to pretend I enjoy gift-giving traditions that honestly drain a bit.  It reminds me that I am not alone in sometimes mistakenly shunning the angel’s call to joy.  It reminds me that God is ever-new, ever-surprising, ever-redeeming.  His story is not old.  It is stunning.  it reminds me that as I contemplate how to maneuver happy holidays with 2 little kids and a husband that can’t help, 2 kids focused on getting to the presents and a husband focused on staying in bed at all costs, a family that requires an immense amount of physical labor to transport to any family party let alone a church service…

God keeps slipping out from underneath rocks and alleys off the beaten path.

He will show.  He does show.  He has shown.

I guess I get a little bit afraid of being overwhelmed with the effort of celebrating.  I wish it was a more natural and easy process.  I am jealous of other families’ ease of maneuvering even if they can’t recognize that blessing themselves.  I wonder if this is God’s best for us.

…but the Lord of creation will not be subjected to expectation.

…God, we will wait though we don’t understand your redemptive story.

Open both our eyes.

It becomes my prayer that revives my soul.  It renews my trust.  It refreshes the story so I may celebrate.

            And on that note, mike had his feeding tube removed yesterday!  He has gotten all food by mouth since spring/summer.  And he has mastered taking medicine by mouth this fall.  He still needs help getting fed but so many people filling in the schedule of covering so many dinners has made it possible to live without the tube.  It is the last weird external invasive thing we hoped to get removed.  And so far there are no complications.  It should take a few days to heal completely closed.  It is exciting to see that mike continues to reach new milestones over time and lends hope to the years to come… though mike would not say that years is an appropriate timeline of expectation.  He is “sure of what we hope for and certain of what we do not see” (Hebrews 11:1) that he will be healed in an overnight, immediate way.  Thank you for your own faithfulness that upholds ours.  Please continue to pray for God’s glory in our lives as he shows up, slipping out from underneath rocks in alleys off the beaten paths.  Merry, merry Christmas!

December 18, 2009 at 11:55 am 10 comments

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

9/29/09

mike had a great time skyping in to the annual Mike Zegarski Golf Tournament fundraiser this past Saturday in ohio.  i had missed out on our earlier skype experience with Dayton alumni in june.  it was a great way to connect with family and friends from such a distance.  mike loved seeing everyone and joking and catching up.  we had borrowed the equipment from a friend who went out of his way to set us up and gift us with the opportunity and i am thinking it might be a great thing to buy ourselves and try for holidays and keeping connected to far flung family.  although part of me simply wants to pray that mike gets willing to get out of the comfort zone of his bed and venture to ohio in person.  i believe it would be physically difficult for him but possible and so we are hoping that it will be a flesh and blood appearance by next year!  mike is getting evaluated for a new session of physical and occupational therapy at marianjoy.  it always takes a few weeks to get him his set of appointments together (too long in my opinion).  we will see what they are able to work with in this new season.  always praying for miracles great and small.  thanks for your enduring care for us.  God is good, all the time, michelle z

September 29, 2009 at 5:18 pm 5 comments

8/31/09

hey, i was just encouraged this morning and figured-well, if i have even something small to share, then that’s something.  mike was intent on getting his hour in his stander before our dr appt today and was negotiating with don about the right time to fit that in.  i piped in, you know, maybe think about stretching that hour to see how long you could stay in (as i always do say, over and over, month after month…) and they said mike did 2 hours friday and saturday.  i am so glad not because i am too sure that 2 hours has any significantly greater impact than 1 hour but i was so excited that mike aimed for something here on earth.  so i felt encouraged.  they also began to brag about how he is getting better at lifting his legs up off the bed a few inches–he can succeed well at 10 attempts which is a wonderful goal.  with God all things are possible.  thanks for your prayer and care, michelle

August 31, 2009 at 9:19 am 4 comments

long awaited semi-update august 13, 2009

It is so hard to feel like writing something new when it feels like everything I have to say is old.  We are in one of our plateau times when we are simply settling into the latest significant development.  Mike began eating without restrictions Easter weekend and has been getting smoother at it ever since.  On occasion he will still cough with liquids and I threaten that I will ban him from liquids again if he doesn’t keep his spit in his mouth since controlling saliva is supposed to be a prerequisite for passing the swallow test in the first place.  Life often feels like we have passed a certain point of accomplishment only to go backwards again.  It is hard for me to remember that conquering something one day doesn’t necessarily have any bearing on the next.  Like celebrating your infant sleeping through the night and then feeling so crushed when you are woken up at 2 am the next night.  I have finally come to the realization that mike will also have ups and downs with sleeping through the night.  He might go 6 months of good sleep and then start calling for muscle stretching at 2 am for a week straight until I simply stop responding and let him hash it out on his own.  There is certainly a hardship within our relationship of wanting to love him well but not so indulgently that it either burns me out or doesn’t put him in a position of stretching his own abilities.  And I have come to a realization that my dreams of mike making the most of his disability and participating in a full life to the best of his ability is a new place of surrender for me.  Honestly, mike is only interested in a complete and immediate healing.  He is sure that is what God has promised him.  I hear God’s promise less audibly and sense it more in the evidence of his slow and amazing miracles bit by bit along the way.  So I assume God could do amazing things within mike’s disabilities and mike does not feel like that would fulfill what God has promised to him.  it would not be enough for mike.  Within those different assumptions about God’s interaction in our lives mike and I are motivated in different directions.  He prefers to invest most in prayer.  I desire him to invest more in the abilities that have been returned to him.  we both think we are choosing what is best but each best uses up the reserves of motivation he has.  Like God said– you can’t choose God and money—you can’t divide yourself up between passions that compete.  This pushing from me exhausts me and antagonizes him.  so for now I am surrendering the fight.  I cannot make mike want to sit in his wheelchair longer in order to gain more interaction with people he cares about.  I can remind him of the fruits of building up a longer tolerance for his wheelchair that can lead to a trip to Cincinnati.  But I cannot make him see the cause and effect if he simply believes he will be healed by the time he wants to go.  If he will be healed by then he has no reason to get used to the chair.  For the sake of our relationship I am working on not trying to force him to see reality as I see it.  That is beyond my control and my fighting has never yet helped.  There are opportunities for mike that he simply does not want to commit to.  It is hard to even choose the right words to describe this without editorializing.  I could say mike is not yet ready for these opportunities or that he chooses to refuse opportunities or that he cannot recognize them as opportunities.  For whatever reason, I believe mike could do more than he is.  So, yes, months go by with little change and still so much potential and writing about it makes me ponder my own frustration with that stagnation.  I have yet to be angry with God over our circumstances but when it feels like mike is choosing to stay less able than he could I do get angry with him.  but it is a daily reality and my current coping mechanism is just trying to let go of my ideal and accept mike as is, wherever he wants to remain.  This already seems redundant and too long which is why I avoid writing.

Besides that dilemma between mike’s and my dreams for approaching our future, we are all 4 healthy.  Our kids are growing and playing and monstrous and delightful just as it should be.  Summer has been so much fun and we are approaching a crazy schedule adjustment as mckaela starts full day 1st grade this year…yikes!  And the times mike is convinced to venture outside he has enjoyed emceeing the kids’ baseball game on our front lawn with his little microphone amplifier, being fed drippy, melting popsicles, and watching sprinkler mayhem.  Life is so good, right?

Thanks as always, for praying persistently that mike would prove correct and would get the shape of miracle he desires.  Praise God for all he has done, michelle z

August 13, 2009 at 12:49 am 9 comments

may 25, 2009

sorry if i freaked some people out from the last post.  in my eyes i was just letting you know the newer challenges within the last few months but i felt like it made it seem like an immediate emergency from some feedback i got.  which is a little bit funny because i feel like what seems an immediate emergency from the outside has become our daily norm.  honestly, thinking about it that way is a little scary!  but my break from home was wonderful and freeing.  we are getting used to if not good at or patient with the scenario of getting everyone fed every day.  my kids are running amok in the neighborhood on the days while i feed mike hoping i will glimpse them through the window every 10 minutes or so instead of wondering about their safety.  and the days where gracious friends feed mike allows me the freedom to at least supervise our 3 and 5 year old as they give in to the call of warm days playing outside.  it is a good thing i am not prone to overworrying or this really might not be working out.  and as mcKaela described to me about my skill of getting everyone fed or cared for in a day, “it’s a good thing God helps you”.  all i could say was Amen.  mike, meanwhile, is great at getting his own cup to his mouth so he can down some liquids at his own pace on his own.  he finished his april round of speech therapy which mostly ended around when he passed his swallow test at easter.  and he is starting up a month or more of occupational therapy where they will hopefully work on more of the daily skills like getting fork and spoon working to his benefit.  mike takes all this in stride for the most part not getting too excited about therapy stuff.  he is proud of his progress getting the straw and cup to his lips but mostly numbers, evangelism, and money still encompass his passions.  he makes me laugh with his very singular focus at times.  he is also still quite confident that his real progress will come specifically through a quick miraculous healing.

so we pray, michelle z

May 25, 2009 at 11:42 am 13 comments

may 8, 2009

i have been telling people i am on a run-away-from-home vacation.  these last few months have become more than crippling to me.  mike’s needs have grown as he was growing in his ability to eat.  mcKaela and eli’s needs have not shrunk in conjunction and i think these long years of being the only one who makes sure every task gets tended have used me up.  i think all the help we have received from others in different areas like food and babysitting and financial planning certainly pushed off my breaking point a long time.  but it has come.  i have been spent.  so, upon many recommendations, mike asked his parents to come stay with him and the kids, learn how to care for not just some, but all their needs, and allow me to run away.  i have stayed at a friend’s house.  i have worked some (because i do still have those 2 part-time jobs i squish into the mix of responsibilities) but i have sat lots.  i have sorted out long-boarded-up thoughts.  i have read and wondered and listened and slept.  God has kept me company.  i have more than anything just not been required for 4,000 different daily tasks and coordinations.  this past month i have thought, how can i update when i have nothing left to give, when my words escape with no sense?  i still fear this place of brokenness.  this life that requires so much more than i am.  i know our family is supported and encouraged and loved but there is no denying that these days belong to me.  changing and medicine and meals and bathing as well as quality of life things like playgrounds and visitors and playdates and learning to ride a bike– these tasks people will help with but the gaps will fill my days.  i am not bitter.  in fact i am stunned to thanksgiving and speechlessness at once that so many people still continue to answer my calls for help.  but the end of me so recently, this numbing to life has been frightening.  these few days of rest, alone with God, have blessed.  but i admit i know what my days as i return look like and there is fear there.

but in reading an old prayer journal entry from last year i wanted to reclaim the truth for today and these days to come.  “i feel often overwhelmed.  and i don’t wish to deny it.  when we hear it we glue our own expectation of feeling to it–usually negative.  i wish to define it anew.  overwhelmed–tired, busy, loved, entertained, visited, blessed, blessed, blessed, blessed, invested, impassioned, befriended, gifted (given lots of gifts), worn and well-spent.  this might be life to the full if i can wrap my head around it.”

so that is where we are at.  i am there.  the kids are great.  mike is doing well and really enjoying food and company.  thanks for your faithfulness, for continuing to offer us up to the Sustainer, michelle

May 8, 2009 at 3:45 pm 12 comments

april 9, 2009!

So I commend the enjoyment of life, because nothing is better for a man under the sun than to eat and drink and be glad. Then joy will accompany him in his work all the days of the life God has given him under the sun.  Ecclesiastes 8:15

I couldn’t find a truer sentiment for mike today because today mike passed his swallow test to eat and drink ANYTHING!  no more blending things to mush.  no more nectar sticky coating drinks.  he does need to be careful, intentional as he eats, sitting very upright and going slowly.  and the truth is he lacks someone at his beck and call to feed him whatever he orders at will.  so there are some hurdles to all that.  i am eager to get him to take advantage of working his occupational therapy kind of skills and trying to feed himself when he has chances.  he thinks it just as convenient to get someone else to do it for him.  but that debate will take awhile to resolve.  so tonight as we remember Jesus’ last supper, mike will be treasuring the memory of his own delightful meal today.  thanks as always, michelle and co.

April 9, 2009 at 1:00 pm 19 comments

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