September 22, 2010

I hope I have not missed too many people already checking in to sign up for the 2010 Golf Scramble! Great friends from Mike’s time in Ohio have been putting together an incredible golf scramble fundraiser to our family’s benefit the last few years and we have had to satisfy ourselves by celebrating their graciousness from a distance. Last year we were able to Skype our way into some conversations and we are upping the ante this year. McKaela, Eli and I, (Michelle), are definitely driving up to be at the event on Saturday, October 9th! We are so excited at the prospect of enjoying the day with everyone! Mike is actually debating what it would take for him to foray back home again as well and we are weighing our ability to accommodate his various needs to make the trip possible. We are trying to line up everything for it to work just in case and are waiting for him to make a final decision of whether he could physically handle the risky prospect of travel. It would be incredibly stretching for him physically. I gave him a week longer to commit so I will keep you posted on which Illinois Zegarskis to expect. But the kids and I will definitely count on seeing as many of you as can join us that day! Thanks so much for accompanying us along these years, challenges, and now, too, hopeful reunions! TO REGISTER PLEASE CHECK THE MENU BAR AT THE TOP FOR THE 2010 GOLF SCRAMBLE!

September 22, 2010 at 9:06 pm 4 comments

tuesday, august 31, 2010

hellllooo!
i know more time than i wish always goes by before i get myself to try to formulate an update. first things first, our local newspaper did an article about community support for our family which has been miraculous these past 4 plus years. i think this is a link as of the moment (but i could be wrong!)
http://www.suburbanchicagonews.com/napervillesun/lifestyles/2633512,6_5_NA25_ZEGARSKI_S1-100825.article
second, things are quiet while the kids are snug in their beds and one of our three rotating caregivers is getting mike ready for bed too. eli starts preschool tomorrow and mcKaela is well into her second week of second grade. we are shifting to the school schedule and running into mike around the house a bit more than we were in the summer. we are almost even eating meals in similar time zones (mike eats at 5:30 and we were experiencing more of an 8:00 dinner). and as the weather starts to cool we may even be able to join mike for regular walks outside together again (we were on hiatus during the humid 85-90 degree months).
overall we are doing ok. mike has definitely gotten stronger than i have ever seen him even pushing his hands down on a restaurant table at a family celebration to try to see if he could stand up out of his wheelchair. he did successfully lean his torso forward and put his weight onto his palms. i said no when he asked us to pull his wheelchair from the table to allow him standing room. i don’t know whether he could actually lift his butt from the seat but i was positive he couldn’t maintain balance yet if he did get that far. it is exciting to see him still improving. i am still skeptical about his social/emotional/relational skills. it is difficult to evaluate but i still see a lot of the same behavior that we have been working on with increased intentionality since may. some of these behaviors keep mike’s relationships limited. so that is area is still of major concern to me. i am truly so stunned at how wondrous God has been in covering our needs. i absolutely rest in his continued desire and ability to keep piecing together our family as each day rolls by. thank you for the myriad offers of helpfulness, generosity, and sacrifice. this spot in our lives is by far the place where we have had to cling to God in desperation and found him more than sufficient. thanks for your part in God’s sufficiency for us.
in Christ,
michelle

August 31, 2010 at 10:17 pm 4 comments

thursday, july 1st 2010

mike came home this past sunday with the help of a rained out baseball team and great friends. it has been a great experience having him stay with friends for a number of varied reasons. it was a significant break for me and for the kids to experience a lot more freedom from being in the house with an afternoon curfew to be with mike. they experienced a lot more availability with me. i experienced a lot more breathing time. and mike experienced a group of voices demanding more of him than he sometimes gets in the habit of settling for. justin and megan were amazing in working on new motivations and goals with mike from social etiquette and accepting when someone says no to creating a more physically challenging daily schedule where he gets in his wheelchair and out of his bedroom twice a day. mike has risen to some challenges, backslid on some progress and mostly showed a good attitude. the toughest part with mike both seemingly at our friends and even this week at home seems to be a good attitude toward goals or boundaries in theory but a difficulty accepting or implementing them in practice.
it surprises me that we can just slide mike right back in at home with little fanfare. i asked mcKaela the other night how she felt about getting her daddy back home and she said it feels like home again with everyone in place. so it is good. we have not resolved every stress. nor would it be reasonable to expect to. i still wonder what the right responses and motivators are for moving mike forward in relationships and interaction with life.
he has been participating in outpatient physical therapy a few times weekly at marianjoy for the past almost 2 months. he had gotten requalified twice during this stint which reflects well on his progress. he has been working a ton on standing and straightening his torso up, lifting his head upright, & balancing while sitting at these therapy sessions and came home today reporting that he had tried a walker and had put some weight into his legs and maybe lifted a leg to take a step. i couldn’t get a clear trustworthy picture of it between mike and don but if not a step then it was a movement in the right direction. so that is worth celebrating.
oh, and he is getting his hole from where they removed his feeding tube surgically closed july 6th. apparently anything that heals on its own for normal people requires a surgery for mike. they will do the least invasive surgery to close it and have one more invasive option if this ends up being unsuccessful. mike wished for the more invasive first off but i guess they like to do things in a certain order. so, though mike and i have become used to needing the maximum, please pray that this week’s surgery is sufficient to close his wound completely.
i am more tired than i deserve to be with these 3 caregivers carrying a lot of the load, but we are each where we are supposed to be. thank God. happy 4th and freedom, michelle

July 1, 2010 at 11:14 pm 8 comments

may 6, 2010

hurray! we do have 3 caregivers in place covering different shifts throughout the week and even being able to have days off themselves so it feels like a healthy system for awhile. justin and megan desired to keep mike at their house a little longer to work on some social habits as mike transfers his physical needs into the caregivers hands successfully. that is a complicated way to say that mike and i have gotten used to some bad habits of interacting in the last year that justin and megan have high hopes of adjusting so that it is not the same debilitating communication that we have had for so long. the kids and i keep visiting and we keep trying at having a conversation that does not immediately digress into a demand for physical care (that ultimately the caregivers are there for) or some errand running or my stonewalling instead of a social opportunity. we all have high hopes. it is not always the most rewarding interactions yet between mike and i or even between mike and justin and megan. please pray for insight for him, for wisdom & patience for justin and megan, for i am not quite sure for me! overall mike is still doing great and i am eager for when he is really ready and able to be home. thanks for being on the long road with us and for the encouraging comments and prayers, michelle

May 6, 2010 at 10:12 pm 9 comments

4/11/10

just a quick update to say thanks for supportive prayers.  mike is actually really enjoying his time at justin and megan’s and specifically commented on their niceness, availability and attention.  he is reveling.  so the frustration evaporated quickly.  we are trying to get another new caregiver into place this week and we are praying for minimal glitches since we have had bad luck with some others.  i am letting justin and megan troubleshoot obstacles until all caregivers are up and running smoothly and then we will transfer mike and the successful support system back home.  maybe it will all go well and that will be in a week or we will see if our best laid plans need more work.  meanwhile the kids and i visit a bit, brought mike to a movie last week and are trying for balance.  it has been a busy and overwhelming week even without mike’s care.  maybe this week will feel more like a break.  the kids have been fine overall but mckaela specifically misses mike when falling asleep at night and senses his absence from the house.  God has been shielding us from anything but keep praying for our whole family’s protection please.  thanks, michelle

April 11, 2010 at 10:38 pm 8 comments

still barely april 3, 2010

to shorten up a big thing, mike sometimes annoys me a little with a lot of question about numbers i can’t answer or future events i can’t predict or adapting something for him that can’t fix the misfired brain messages i think might be the real problem.  the more days that go by without some significant buffers to absorb this interaction the more impatient i get.  mike and i spent a lot of time together this week and i didn’t realize the impact until i was picking up my kids who had been overnighting at my sisters in the southwest suburbs.  i missed my exit.  then i missed my next exit.  and finally i missed my next exit.  no radio on.  no cell phone conversation.  just a brain incapable of accomplishing a habitual, simple task.  so i called our friends who have been goal setting, solution seeking with us and said i cannot keep up with mike right now.  so today we moved him to our friends’, justin and megan’s house for a while.  i was kind of removed from the last 40 hours of prepping him to move and just helped this afternoon in the physical process.  i could not believe something as large as moving mike could happen so quickly and well.  the room they had ready was perfect and lovely and quickly equipped. 

yet as stunned as i was by how smoothly getting his hospital bed rigged back together and supplies stocked had gone, nothing could wholly distract from the ugliness of this point.  i feel ok, not crazy.  i am just burnt out with mike.  i could describe the litany that is behind all that but the details don’t matter.  my breaking point is past and we will work on getting some other systems in place without me as the lynchpin.  but it is embarassing and sad to need to create this break on easter weekend, to be grateful that someone else’s lovely family will be caring for mike’s needs and celebrating with him rather than his own.  i am still processing my own feelings and trying to not downplay the necessity of this move.  and mike is mad and frustrated and stubborn in the midst.  we had discussed this as an option more than a month ago if we could not keep the peace at our home in regard to him.  but neither of us really braced for this reality.  and it is a sudden sentence despite the warning signs.  our kids have taken it in stride.  they seem anxietyless and we are counting on visits to stay connected.

please pray…

for mike as he feels angry, as he processes a world not within his control, for megan and justin as they fill in the gap in such a monumental and demanding way, for support for all 3 in terms of food and social needs, for a quick resolution to finding caregivers to cover all shifts of mike’s care (megan and justin work full time so this making do without full care cannot work indefinitely), for mcKaela, eli and me as we tiptoe into some very different days in our house unsure of how to feel.  i remembered tonight that i have not been alone in our house like this since mike’s hospital stays and i can’t even dredge up memories of life before that.  it is a weird place.  thank God with us for the friends who have surrounded us to act quickly with full support, leaving no detail unmet.  and simply pray for the strange horror and hope in this saturday before easter where good friday has broken us but we haven’t woken up to sunday’s resurrection.  have a happy easter and may your joy spread, michelle

April 4, 2010 at 12:08 am 6 comments

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

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