november 1, 2009

November 1, 2009 at 5:45 pm 7 comments

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

Entry filed under: updates.

9/29/09 december 18, 2009

7 Comments Add your own

  • 1. The Naffzigers  |  November 2, 2009 at 11:04 pm

    We are always thinking of yall & praying for your specific needs. We look forward to visiting over Christmas. Love, The Naffzigers

    Reply
  • 2. Steve Fisher  |  November 4, 2009 at 4:28 pm

    Hello Michelle:

    I don’t know why we are connected but we must be. I am terrible at keeping up with people – I go weeks at a time without visiting your site. So today, I am moved to look at the site, hoping there is a posting, hoping I have not missed too many postings, only to find it is only 3 days old.

    I can honestly say I have never looked at hardships as a gift, a grace or even an opportunity – at least not at first. (Though my definition of hardship would not register more than a zero on the Michelle Z chart) I have seen, though, where the Lord has allowed hardships for me, that those I finally was able to embrace that he did bring joy and peace that continues this day. But my hardships lasted weeks or a few months, not years. So I am disqualified from even thinking about how to encourage you…but I do want to encourage you…so I want you to imagine the biggest hug you’ve ever received…do you feel it? (I am told by my wife and children that I am a really good hugger!) One that lifts you off the ground, one that all you have to do is receive. Can you feel it? Now realize those are Jesus’ arms enveloping you – He who endured way more anquish and sorry that I have ever dreamed or imagined. He is faithful. He is true.

    You are an amazing woman, wife,mother, friend, leader, vomit catcher, etc. For you I have some words from Moses: Psalm 90 : 14-17 It begins, “Satisfy us in the morning with your unfailing love…..”

    Love, Steve

    Reply
  • 3. Amy Antonio  |  November 9, 2009 at 9:15 am

    “I can see the people who have learned to walk in faith with mercy in their hearts and glory on their faces.” Reading your blog makes me think of this line from a Rich Mullins song. God bless your day with faith, mercy and glory.

    Reply
  • 4. Rachel E  |  November 9, 2009 at 9:22 pm

    Hey Michelle,
    I’ve been forgetting to check here since you were quiet for so long, but glad that I thought tonight to check. I am so glad to hear an update. Your words made my heart both laugh and ache. It is hard to imagine the life of someone else. We are all facing some type of struggle. You are in a strange place where so many people actually want to hear about your daily journey. Goodness, your blog entries alone would make a glorious book, you do know that right? I believe someone mentioned that before, and I agree! I can’t wait to read your book or Mike’s or your’s and Mike’s together. And poor Don! Certainly not the most glamourous of jobs and now getting verbally fired all the time, too, oh my. I sure hope Mike remembers to thank him, too! I do have to laugh b/c even though things are sooooo different now than they were four years ago, in some respects, you and Mike are the same. I’m glad to hear the Mike has found fierce determination in some endeavors, such as his dictations, although these may not be the same endeavors that you would prefer him to channel that determination towards. It is quite a story that you and Mike are journeying through together, and I’m glad to hear that you are remembering to find ways to enjoy the story as it unfolds and not just focus on the story’s ending, whatever that may be. Michelle, I hope you feel surrounded by and uplifted by and filled with love, grace, and peace. And this wish extends, of course, to Mike, too, and your whole family. Thank you again for sharing your words with us so that we may be uplifted by them and hopefully so we can share a word or two in return that might lift you up, too. That is the joy of being connected – that we may love one another and lift one another up in love. Love you friend, Rachel

    Reply
  • 5. Dave Etling  |  November 21, 2009 at 6:53 am

    Mike & Michelle,

    It is time for the Etling’s to make a visit. Please pray that God provides a way (plane tickets) for us to come and visit you guys in Chicago the second weekend in March.

    There are two local kids who have been involved in Young Life in Salisbury Ryan Malone and Michael Martinez. Both are kids who would be involved in Young Life Capernaum. These kids God has put in my life to prepare me for the day of a visit.

    We pray for you regularly and wish finances and distance wouldn’t have kept us from visiting sooner.

    Take care,
    Dave & Kate Etling

    PS Please send your email and home number to us.
    Etling14@hotmail.com

    Reply
  • 6. j zegarski  |  November 21, 2009 at 11:28 am

    Yes, I’ve been taking dictation from Mike for about a month now, and it’s funny, intense, biblical, informative and very rewarding. He does call almost every day and talks for about 1/2 hour. If I’m available, great;, if not, he calls back later. He speaks in the same manner as if he were speaking to his young life kids. A few days ago, he spoke about prayer and its importance along with good works. Following is his dictation for 11/17/09.

    “Do you pray a lot? Do you ever ask others to pray for you? I”ve been asking people to pray for me. I wonder if they still pray for me. I know many people still do. God says “with 2 or 3 gathered together in my name I am with them”. God answers prayers, so keep praying to God. There are other verses that talk about the power of prayer. So don”t stop praying. Amen”.

    So there you have it. I answered Mike’s question by assuring him that you all are still keeping him in your prayers for a complete and speedy recovery.
    We talked a little bit about Christmas. I asked him if there was anything in particular he would like. He said, “I want to walk.”
    By the way, he is working hard, so let us pray.
    We love you all, thank you so much. Smiles….
    Mom Z for all the Zegarski’s

    Reply
  • 7. Heather Z.  |  November 22, 2009 at 10:00 am

    Mike, Michelle, McKaela and Eli,
    We all miss you so much!!! Michelle, let’s talk this week. I’ll try to call Wednesday. Will was just talking about McKaela and Eli this morning. How thankful I am that our children love each other and enjoy being together so much! We are thankful for every opportunity we have for the four of us to be with the four of you! Love you!

    Heather

    Reply

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