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!

12/2/08

my kids are kind of annoying lately with whiny responses, lying, disobedience.  you know, kid stuff.  i consider what i have to talk about, what is occupying our days and this is all that is in my head.  this is why i don’t update often.  if you publish how annoying your kids are it makes it seem like a big deal when really it is just normal life’s ebb and flow.  we had 2 weeks of stomach bug descending on mckaela, me and eli.  mike welcomed an enduring cold instead.  i keep telling him he lucked out but he isn’t totally buying it.  mike is pretty patient with my moodiness.  he bears the cost of the kid’s wearing me out.  some months he seems needier than others.  but the last few weeks he has not joined in the whining in our house.  it has been a welcome reprieve for us relationally to not feel like there are three kids here for me to raise.  i feel like he is on my team again.  maybe he feels like i am on his too.  i am not sure. 

thanksgiving was wonderful.  a family actually cooked and brought over a fabulous dinner for us and mike was wheeled up to the table to eat and enjoy.  he preferred most the mashed potatoes and pumpkin pie.  and decided he had eaten too much as he laid in bed later.  it was just like normal again!…kind of!  mike’s parents joined us for a long weekend and spruced up our house with various needed projects.  that kind of felt like normal again too–mike was always conniving them into slave labor and i have been too soft on them in recent years.  we were all sad to see them head back to ohio.

i haven’t felt really inspirational lately.  i have been switching to the outside of this experience and keeping up with the websites of some families in our lives experiencing tragedies of their own.  it is strange to sit on the outside looking in on their lives, identifying with much of the mix of emotions, frustrations and surreal feel of life they describe.  it is odd to pray and prod my family into daily prayer for these families.  to hope that i am doing all possible to love them from the distance i am–relationally, physically or ability-wise.  it feels like i ought to have so much more to offer from the places we have been.

mostly i just feel like this life is a miracle.  it is annoying and smelly and tiring and ill-tempered and miraculous.  it makes no sense how it fits together.  how i can want to squish my kids in anger and in love.  how i can find this husband too much and also just what i need.  how there are too many websites listing too much sorrow and there can still be a God that holds the pieces of our hearts together and “binds up our wounds” (Ps 147:3).  i guess i feel like it might be nice if i felt like i had more inspiration to offer but miraculously i also feel ok with simply living in awe day to day that God can work with me– a short-tempered, worn, child myself.  and this miracle of today doesn’t need to make sense and it is no less a miracle when my car smells like vomit or there is another family to pray for or life doesn’t go our way.  i will simply live in awe at how God offers hope in darkest nights during this season of celebrating the hope of the world born into the smelliest place, a barn on earth.

11/1/08 — Mike is eating again!

Great news!  Mike passed a swallowing test last Thursday sufficiently to permit him to now eat foods with the consistency of apple sauce!  So, yesterday we picked up a variety of different flavors of apple sauce and some yogurts.  Mike is enjoying tasting food again, and the swallowing will continue to train and strengthen his throat muscles and coordination.  And, of course, it’s nice to see him get a bit of his normal life back.

We had an exciting Halloween.  Mike’s brother Dan and his family came up, so we all went out trick-or-treating.  Cousins Will and Michael joined McKaela and Eli, and the kids brought in quite a haul of treats. 

Mike’s voice is stronger and his speech faster than ever, too.  So, visit if you can.  Mike would love to see you.

10/21/08

i think i am adjusting my sense of guilt to only accelerate at the month mark of skipping out on updates.  the truth is it is hard to know what to discuss.  lots of days slide by ok and the ones that don’t aren’t as monumental in their aggravation.  they are now simply normal aggravation that doesn’t put you in the mood to discuss.  mike often wakes up with a new ailment that i have a hard time fully buying into.  it is so hard for me to trust his judgement because he seems like he is not always weighing the big picture.  one day he will feel bloated or full in his belly so he asks me to stop feeding him.  i overreact because it seems like a rdiculous demand since food is one of those necessities in life.  so we aggravate each other to no bound.  he is frustrated by his powerlessness, i am overwhelmed by his very singular focus.  the remedies of doctors don’t often leave mike satisfied either by their limited response or their slowness.  so while mike has been steady and stable he is far from satisfied.  we would love prayer for clearer eyesight (eye muscles seem stronger but still blurry–checkup scheduled), digestion issues/stomach discomfort (still on a feeding tube), left hand cramping (cannot open fist), temperature fluctuations (cold, hot, cold…) and asundry other aches and pains that bother him for a day and get eclipsed by a new complaint the next.  pray for my sympathy to kick in because i am a hard caregiver the more worn i get from too may needs.  pray for our wisdom with how to handle finances while still remaining qualified for aid for our caregiver, don.  praise God, please, for the quality of our friendships which he has been so generous with.  thanks to many, far and wide, who support us with gifts, food, listening, patience, sitting, invitations and flexibilty– manna in so many ways.  i pray i have no prayer need so great it requires me writing in less than a month!  thanks for your patience i lack!  oh, and mike’s general prayer, always, is less for details and always for a whole healing.  he waits expectantly.

9/24/08

i know my lack of postings is shameful.  it really has been mostly ho-hum lately.  when our life is usually marked by large experiences the normal seems not noteworthy.  these last few months of summer after getting out of therapy have been just mostly normal.  but i am so glad to enjoy normal.  and mike does seem to do well with some time for normal.  i actually think his speech has gotten better since stopping hs outpatient marianjoy therapy.  his responses are faster and usually clearer and even a bit louder than the spring.  public settings are still not his best for showing off because of the extra noise but those able to stop by and speak in person are always surprised and excited.  he is in his stander for about an hour every day with no problem.  we re trying to get mike to set his head on some reasonable goals to work on with a degree of focus.  mckaela is enjoying kindergarten by simply taking it in stride–no big deal to her.  eli sometimes fights her to hold her backpack but he isn’t feeling too jealous.  he is almost 3 and in mike’s words, they are both “ridiculously cute”.  so thanks for the ho-hum, the busy goodness that keeps us occupied.  pray for goals and such consistent improvement as we have been enjoying.  in Christ, michelle