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

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

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

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 1^st 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

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 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

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.

3/12/09

you are invited…

WorShIp at Zegarski’s SaTuRday, MARCH 21 @ 4pm!  (kids welcome but don’t count on any real oversight!)

it will be 3 years since God pulled mike through his bleeding brain injury.  come praise God for his faithfulness with us!  (and you can even sing an early happy birthday to mike for turning 37 years old on March 23!)

 

i was dawdling on updating until we got through today’s appointment.  we had gotten a prescription written for an evaluation at the technology center at Rehab Institute of Chicago (RIC).  they don’t have this same resource at marianjoy where we usually get therapy.  i had no idea what to expect and didn’t want to count on anthing but it was in fact pretty exciting in my eyes.  mike was way calmer.  this occupational therapist had mike show the extent he could move arms and fingers and neck and then walked us through various devices he though might be a blessing to mike.  he showed us something called a scan switch which can allow mike to control tv, dvd, lamp or alert chime, or fan or whatever from his bed (the chime is to alert someone in another part of the house if he can’t shout loudly enough for help).  it is like a remote that scans through the objects he might want to control.  he clicks the switch when it gets to his choice–like tv.  then it scans options for tv and he clicks the switch when it gets to his choice like volume up.  he may need one that audibly scans instead of visually with a light simply because the print face might be too small.  but so exciting to see what they COULD be like.  then we checked out computer features that might interest mike–like keyboard stickers that help him see the letters, a narrator feature that speaks the key you press so if he makes a mistake he notices and can backspace and correct.  and the browser-mozilla?  can enlarge font size on internet articles to a degree mike could surf the web and read what he wants.  and he practiced on a tracer ball mouse?  (i am already forgetting the names of things).  everything was very slow as we tried to see what worked for him.  but when we were trying these computer things he didn’t just type his name (albeit very slowly) but he typed out “mike is cool”–technically our appointment ended before we were finished so i typed the “L” to finish mike’s thought.  but wow.  what a day.  so exciting to see possibilities!

mike still struggles with eye sight, focus and double vision and with limited movement in arms.  arms don’t get much higher than chest height.  his legs are able to move very little.  his right hand can slowly open and close but that arm is weaker.  and his left hand gets very stiff and closes against his will.  but he did move one left finger out enough to hit keyboard keys.  happily he is mostly pain free other than occasional stomach cramps related to BMs.

mike is still in speech therapy 3 times weekly at marianjoy and i am not sure when we will have run out of that opportunity.  he almost backed out of one of the days weekly and surrendered after a bit of a long battle with me about motivation and taking advantage of every opportunity as it comes.

mike is still very much counting on prayer and God’s quick deliverance of an absolute miracle.  i am setting my sights on God’s long-term, unending faithfulness to carry us through each day as long as it takes and to surprise us with new possibilities along the way.  at least we both agree that God is the SOURCE of all we desire.  we head back to RIC to play and explore and make decisions in a few weeks.  praise God with us for all he has done, is doing, will do, michelle and mike!

2/10/09

OOOOOOOOOK i have been told some people are craving some updates.  just know–the longer i am quiet that means everything is relatively quiet on our front as well…which is never unwelcome.  (nothing like a double negative to make a positive–isn’t that an ironic life philosophy?)  anyhow, some news!  i had asked for another chance at speech therapy the first week of january and the doctor said not yet.  but we did start trying to give mike his cans of food just 3 times a day through his feeding tube instead of all day long on a slow feed with a feeding pump.  this was to help him/ his belly adjust to the idea of meals again.  also it was to try to get him to eat more at a meal time instead of tiny amounts in a random snacking way.  we have ditched the feeding pump but he still gets tired/coughing after eating small amounts.  so we have not made much headway in the strength of his swallowing though his stomach has been fine with meal sized amounts being poured straight into his belly at once..

but, for some reason not readily obvious to me the doctor wrote an order for speech/swallow therapy starting now despite saying no last month.  so we are set up for a month of speech/swallow therapy monday/wednesday/fridays for the next month.  upon being evaluated today she said that mike had kept his tongue strength but regressed in his breathing strength.  he simply needs to breathe deeper and talk louder which will also help his swallowing which will then pave the way for passing the next level on a swallow test.  honestly, i found it a frustrating reality to have the pro say what i feel like i nag about constantly…  for example, “mike, you HAVE to talk louder.  take a deep breath.  no, i don’t care that it is hard to do.  do it anyway.  don’t waste effort telling me how hard it is.  do it right.”  obviously i am not great company.  i don’t even like to listen to me.  in fact i hate being the person nagging about it every day.  but i did feel irritable watching the therapist listen to his weak voice.  i felt like he was not even showing her his capabilities.  so i nagged him in front of her and he did get louder.

so…  i am excited about his therapy because i do hope it will be a shot in the arm for him in terms of motivation and confirmation again that there is no substitute for him doing the work.  i struggle because i would even say that prayer is no substitute for mike doing the work and i worry that mike relies on prayer almost at the expense of setting a goal and aiming for it himself.  i guess i would ask for prayer that God would certainly be at work still in repairing and transforming mike for His glory and that mike would be working just as hard toward that goal himself.  i pray specifically for a stronger voice that would coax him further in engaging in social settings where he feels handicapped.  i pray for an easier and smoother road in swallowing practice and food.  and mike would undoubtedly specifically ask for prayer for an immediate total recovery from God.  so thank you for your patience and faithfulness in looking for updates with us and pray away!  love, michelle and co.

12/27/08

i have been thinking i relate a little to the wise men lately.  they know something amazing is happening but the details get a bit blurry.  they know to just keep moving and they are full of certainty that God is doing incredible things worthy of the waiting and walking.  so as they focus on the star, they push forward to find the king of kings.

christmas has been wonderful but easier to absorb after everyone’s been tucked in and the night is calm and and quiet and so am i.  mike has been stretching his travel ability and since he can handle about 4 hours maximum in the wheelchair we can head down for my family stuff in the south suburbs.  2 hours travel time and 2 hours for socializing on christmas eve.  and church on christmas morn.  presents and chaos and singing and some interesting christmas story retellings from a 3 year old’s perspective.  i loved being able to celebrate with family but making christmas happen does seem to take a lot of effort.  so i get worn and it does throw me to go from emotional extremes so quickly… i am so glad to be able to be together, mike healthy and travel able.  yet getting the three of them out the door on an icy morning for church brought out the devil in me.  (not to mention only a brief reprieve from kids being sick with fevers of 104 and highly interrupted sleep.)

so, yeah, late at night, brushing teeth, that’s when i imagine the wise men and the way they just kept going, not knowing what each day would bring, not knowing what the end looks like but the quiet of each night would replenish their hope by the light of the star.  so our days have been full of towering highs and ugly lows and the silent night reminds me of the grace of a savior come close  and the light he spreads to all our days.

merry late christmas and happy early new year!