Posts filed under ‘updates’

2/10/11 tend

so i was trying to come up with a reasonably interesting devotional type of thing for WYLdLife leadership tonight and landed on the word tend and how it goes 2 separate ways… it means to care for or pay attention to something AND it means what you make into a habit or regular occurence. i had looked up the real definitions but they were along those lines. and i am not entirely sure why the word is grabbing me right now. but i found these 2 verses to go with the idea…
isaiah 40:11 He tends his flock like a shepherd:
He gathers the lambs in his arms and carries them close to his heart;
he gently leads those that have young.
jeremiah 23:4 I will place shepherds over them who will tend them,
and they will no longer be afraid or terrified, nor will any be missing,” declares the LORD.
ezekiel 34:15 I myself will tend my sheep and have them lie down, declares the Sovereign LORD.

i know there is a lot there for me–a realization of how my Savior Creator, Provider, mighty God tends to me, carrying me close to his heart, appointing others (like so many of you) to act in his stead, caring for our family, and even preparing us for moments of rest (–that is how i interpret having me lie down since as my kids will attest, i fall asleep if i lay down). and then i wonder what i might tend to… God tends to tend to me, and i tend to get overwhelmed, frustrated, weary. i want my tendencies to be transformed in light of his faithful tending. so here we are, in february 2011, trying not to fall down, but getting not too much further with a whole lot of effort poured into maintaining status quo. i am not sure how all this works but we are staying in the race.
we are doing ok. mike is actually slowly weaning off seizure meds he has been on for the last few years. he is almost done with one that takes 6 weeks to wean off of and we are halfway done with one that takes 3 months to wean off. that is the biggest thing we are up to. please pray he is able to successfully be through with those meds and has no need of them. and please pray that their absense makes an impact on mike in regards to maybe increased energy and focus—common casualties from mike’s prescriptions’ side effects.
thanks so much for how you tend to us, though i tend to update so sparsely.
grateful for the perfect shepherd in our sheepish days, michelle

February 11, 2011 at 12:31 am 6 comments

12/26/10 not my best

just realized i have not updated since october. running into people during this season sets me toward trying to summarize how mike is doing, how our family is doing… this season also makes me want to hope, want to risk, want to be positive. but the truth is not always purely hopeful. contemplating today, i felt the phrase best describing how life sometimes starts to feel is as if the whole thing is a salvage effort. this year has indeed been the best year so far for mike. he is stronger and healthier than ever. he has made some great strides in gaining more head control, torso control and even working on taking steps (with a lot of help). but all of that happened through forcing him into a new schedule. this october he took his first trip since his injury to ohio for his 20th high school reunion and golf outing. but i couldn’t even ride in the car with him out of fear for my own sanity in that trapped setting with him. i am more hopeful than ever for what he may still be able to work on and master physically but i have virtually stopped having any conversations with him out of danger of my own emotional collapse. we have made wise and healthy changes in adding caregivers and fuller caregiver coverage but it doesn’t seem to alleviate the strain of perpetually unlimited neediness from mike. i know God has set immense blessings around us to sustain us on harder days and through more painful years but some days still feel like a salvage effort. i am sure that a week from now the christmas story and its own beautiful summary as a salvage effort will penetrate the emotional numbness that sets in when i have been overwhelmed by frustrating interactions with mike. i am sure that my comprehension of God’s love will be complimented by my enveloping experience of his love if i am but patient. so today i rest in truth more than pleasantries. God loved me yesterday when i cried, today when i recovered and tomorrow when i return to worship. he loved mike yesteryear in seeming wholeness, today in brokenness, and tomorrow in fulfillment of his goodness in mike’s life. i am worn though i have had much sleep. and we wait for God’s love to penetrate the clouds. i pray your christmas brought you family, connection and an awe of your Creator come down. thanks for walking a wearying road with us, michelle

December 27, 2010 at 12:01 am 4 comments

what a weekend! 10/12/10

2 corinthians 6:11-13 from the message translation
“dear, dear corinthians, i can’t tell you how much i long for you to enter this WiDE-oPeN, sPacIouS LIFE. we didn’t fence you in. the smallness you feel comes from within you. your lives aren’t small, but you’re living them in a small way. i’m speaking as plainly as i can and with great affection. open up your lives. live openly and expansively.”
while i packed luggage snug around mike to send him off for his first trip further than an hour from home in almost 5 years i was trying to remember this translation of this verse. i was trying to pray it for mike to hear and fathom. i wanted him to see this trip to ohio for the annual golf outing in his name and his 20th high school reunion as an opportunity of life, more life than he has been settling for. i was afraid his anxiety and his consistent preoccupation with pain and discomfort might ruin it all at any moment.
but this weekend was life to the full. full of conversations with old friends, celebration with family, stories and laughter and very little comment on any discomfort. it was better than i thought possible. i pray that it is just a first step in the wide-opening of mike’s life. thank you for the coverage of prayer that most certainly helped mike resist the idolatry of discomfort. thank you to those faithful friends who have kept this golf outing (an incredible opportunity for encouragement and support for our family) going through the years until we could finally show up for it in person! thank you for accomodations and patient conversations and golf lessons for the kids! thank God for his innumerable graces. it was glorious.

October 12, 2010 at 1:17 pm 6 comments

wednesday, october 6, 2010

mike IS going to ohio this weekend (and so are mcKaela, eli and i, and our caregiver , tony)! please pray for all the difficulties that may arise with that. check the previous entry for more on why and concerns and registering for the golf outing! pray that no panic attack at the last second keeps him from going!

October 6, 2010 at 2:15 pm 3 comments

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

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