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

8/19/08 yay!

so…a lovely few days.  mike is sometimes reticent to enjoy outings.  he doesn’t always articulate a reason and i wonder whether sometimes he just feels too much risk in leaving the house for an unknown, even compelling experience.  but we went to a friend’s barbeque friday night and mike stayed at least 45 minutes longer than i expected.  our whole outing stretched to 3 hours with no complaints.  he just said he had a great time, no sore butt.  then we were privileged to attend the wedding of a Young Life family and delight in memories and company and a beautiful celebration and service.  and again, mike lasted much longer than i had anticipated.  AND we got the stander delivered monday.  so hip hip hooray!  this will address any turning of his feet as he puts weight back on those tendons for up to 45 minutes a day in this gorgeous monstrosity.  he is feisty and very much himself.  and it is so good to see him enjoying a great party lately.  thanks for your faithfulness in this long haul, michelle

monday august 11 2008

my wyldlife camp was great and our kids enjoyed my family while mike enjoyed his.  they did have to get some antibiotics for him for a toe infection while i was gone and i am not sure we have seen the last of our toe issues but everything went well.  we are still eagerly awaiting a contraption called a stander which would allow mike to stand upright when in the machine to put that weight back on his feet which is so critical for so much of his body.  insurance and hospitals and everyone in between give a thousand reasons why things take so unreasonably long.  all i care about is what we can do to get the stander here.  pray for its delivery.  mike goes back and forth with his perspective.  one day he enjoys with people and family and the next he wishes to die, honestly.  i wouldn’t say he is depressed, just haphazardly discouraged by the slowness of his progress.  he always has lacked an appreciation for less than perfect.  and he finds the blessings i am amazed by–like his speech improvement and his 2 hour chair endurance–to be inadequate.  simultaneously he will tell you he feels closer to God than ever.  so always perspective is a slippery grip.

we have enjoyed a few home worship nights with friends this summer and our last one last friday was a great finale in my eyes.  mckaela and eli often play with toys sometimes interrupting us as we worship most nights.  but friday eli became enamoured (sp?) with the guitar and waited out worship in the room for a chance for a lesson afterward. so i sat next to mike on the bed and eli found a spot on my lap as we sang.  and finally mckaela climbed on to snuggle in with us.  the best part was our not significantly musically gifted family of four singing all together.  mike was putting his 2 cents in, mckaela would join in on phrases and eli would throw a moaning, erratic “Jeeesuus” in every once in a while.  it was the most hideous, hilarious joyful noise unto the Lord i have ever heard.  so goes life–hideous, hilarious, joyful–offered to the Lord who loves to hear.  amen, michelle

late sunday july 20

sometimes there is no monumental news to check in with.  i have felt life as a whirlwind the last few weeks with a backyard bible club at our house one week and a vacation bible school at church the next.  i try to imagine how it is for mike when i am so distracted and consumed and i figure he must judt get bored with the monotony he endures every day.  but he has been very patient with my whirlwind.

the last worship night we had was the first time he has ever been in the mood to do a worship night in his wheelchair so we could all sit in our family room together instead of squishing around his bed.  it was a great time to visit and enjoy people.  and we are looking forward to worship with friends (come one come all) THIS FRIDAY JULY 25 at 7 pm at our house as well.  we also got to squeeze in a quick, delightful visit with one of mike’s brother’s family this past weekend.  and in about 2 weeks i head to wyld life camp while mike’s parents and another brother keep him busy during my absence.  please pray for consistent healing and progress overall for mike.  this plateau period can seem long but can really do him a lot of good if he keeps his motivation up to practice anything every day.  he will only get quicker and sharper as he practices.  thanks and love, michelle z

and sorry i don’t comment on comments.  i often read and cry and praise God for his goodness through you.

6/24/08

First and foremost before i ramble on…

wOrsHip at 7 pm at zegarski’s THIS FRIDAY, june 27th

then every other friday at 7 pm–  July 11, July 25, and August 8

it is laidback, sometimes empty, sometimes squished, and always lovely!

ok, i know the updates are few and far between.  and frustratingly so.  sorry.  i have an unusual break for myself which i will share with you.  don’t we all kind of compartmentalize and deal with just the one thing that needs attention at the moment?  i struggle to know what to share here because sitting and thinking opens the floodgates of all that goes on and vies for attention and prayer and concern.  it is probably a great thing to only be capable of worrying/handling one thing at a time.  and sometimes i do believe i shelter a bit, not knowing for sure which information would be awkward to have everyone know about, and not able to have personal conversations to clarify details that don’t come through this telling.  but for the sake of simply assuming any subject could be blessed with prayer and for the sake of my own tiredness in deciding which warrants sharing and which doesn’t–here is a month or more of random thoughts and issues…

mike is still doing his best by far.  he is easier to engage in conversation than ever before.  he enjoys company.  he is funny.  and he is grateful for people’s care and time.  our caregiver, don, keeps up with the exercises they learned at marianjoy and mike seems reasonably motivated to do some arm lifting , for example, even by himself without prompting.

yesterday we hung a wiffle ball on a string above his bed so he can use a stick to bat it when he is sitting up.  mcKaela and eli  were immediately drawn in and the three of them were camped out on his bed taking turns and cheering each other on with “give it a BIG whack!”  it was a ton of fun to watch even from the grandstands.  the game helps mike use muscles in his arms but also strengthens hopefully his neck if he lifts it to see and aim better as well as his eyes to focus and aim.  it also improves his reflexes in hitting a moving target.  so, good times!

i get frustrated because sometimes mike seems dissatisfied with the only entertainment options i can think of offering.  he doesn’t always like going to a park or parties or whatever.  he passes on most tv shows we used to enjoy together and often asks me to stop movies after 10 minutes.  he will just say he doesn’t like it.  which leaves us with a limited menu of reruns on tv and quiet time in his room.  he makes good use of the quiet by praying a lot but it is an isolating habit.

i ignorantly canceled the medicare mike becomes eligible for in september because i believed our insurance coverage with CHIP would last.  it does not and i had to go through some hoops to get the medicare reinstated for september.  this was probably miraculous.  and wearying.  i do get unreasonably emotionally exhausted when i deal with insurance stuff.  God has been so gracious in caring for our every need.  even when i am told no, God seems to make them come back eventually with a yes.  but i do get sick to my stomach heading into what feels like a battle to me.  going to the social security office today wondering if i have just lost ourselves coverage until 2009 made me feel like poor Gideon? heading to war with no security.  your stomachache makes you feel mismatched and then later i realize i certainly was mismatched.  i had the almighty GOD on MY side.  no doubt he would prevail.

and the other weight that periodically demands attention is a malpractice lawsuit that we have filed.  it is complicated and intimidating and uncomfortable for me.  honestly, i don’t like focusing on an injustice and counting out the details.  it is not how i desire to approach life.  mike did feel compelled to file based on the facts of his medical experience and treatment history.  sometimes i enjoy the luxury of forgetting about that and sometimes i don’t.

things go well and not well and everday i do not head to a hospital feels pretty blessed.  the funny thing is looking back at entries for so many days i headed to the hospital and reading that we felt pretty blessed through those days too.  i guess all is still grace.

thanks for hanging in there with us even in the dark at times,  michelle

6/3/08

so mike has finished his round of outpatient therapy and we are mostly scheduleless?? again.  not a good or bad thing–just a new stage.  our normal caregiver don is back doing the stretches and ideas he has learned at marianjoy alongside mike.  we will also post a few easy exercises any visitors can run through with mike to add on extra opportunities.  mike is feeling fine and mostly in a good mood.  he does very much enjoy visitors so do consider stopping by if you have put it off before.  he CAN speak so well and even better with a little bossy encouragement to be louder.  we will try to schedule another worship night this month so stay posted for news.  thanks and praise, michelle

5/15/08

i know it has been frustratingly long since an update–some internet issues delayed me every time.  and i was finishing an update on tuesday which i will still paste on here when mike interrupted me with a short seizure.  it was short but i took him into the ER for checking on it and they said basically that small “breakthough” ( as in breaking through all his antiseizure drugs he is on) are “acceptable” as long as they are not happening often.  that ER doc thought even every 6 months would not be unusual to expect.  so it was fine but always time and energy consuming.  so here is tuesday’s update…

i still don’t quite get used to the rapid pace and fast turns this life leads us through.  It is always hard for me to say exactly what progress mike is making in therapy.  They work on small gains in strength and range of motion that build up to something bigger.  So recently they have worked on mike grabbing at a ball in the air in various places to strengthen his neck movement and eye-hand coordination.  He works on speech exercises to strengthen the various muscles involved in swallowing.  He also works on strengthening short-term memory during speech.  And in physical therapy he sometimes spends half an hour up on his feet strapped into a tilt table, or sitting upright learning strength and balance or exercising leg muscles while lying down.  These are all building incrementally. 

Other significant gains include new glasses with a thick prism on one side meant to help his double vision.  It does not completely fix his sight but corrects it enough to encourage his brain to complete the job over time.  I have learned an incredibly useful way of transferring mike from bed to chair with a squat pivot method instead of always depending on the mechanized lift.  It is about 15 minutes faster and could theoretically work anywhere. It might broaden our world someday in some way.  Another major (though currently unreliable) change is mike’s ability to sit in his wheelchair for up to 4, even 5 hours.  He has a new chair cushion that he mostly likes (somedays he still hates it—arghhh).  This definitely could broaden our world. 

Mike’s therapists have shared with me that they may be reaching the extent of what they are able to do with mike at this time.  They are seeing less and less success in mike’s ability to participate in the therapy exercises they ask of him.  He initially seemed very committed and they are seeing less consistency in that attitude.  It is difficult to separate out the variables that could impact his performance.  Simple difficulty in processing cognitively and quickly, or motivation or physical difficulty all impact mike.  Mike claims he is working hard and so any suspicion otherwise I have to abandon.  But whatever the culprit, if mike is less able to make progress in therapy he will soon be discharged and encouraged to keep practicing all he has learned at home.  This at first seems a hard reality but it is the way of therapy and the way therapy always ends.  Mike, in our experience, does benefit from more time so even after discharge from therapy I feel certain he will make gains and head back for another round before too long.

Please pray for his perseverance and for our family’s endeavor to carve out a new normal on a month to month or day to day basis.

Living on grace, michelle