so on saturday night the kids and i came home late from a graduation party and as the caregiver was leaving he said–mike said to bring a swimsuit tomorrow because we are going swimming. i said–what? i was a bit astounded, confused and a tad hopeful. i have been asking mike for 2 years to consider going to a local beach in naperville that has a special chair that we could transfer him into from his wheelchair, then it swings out over the water and lowers you in. turns out, mike was thinking he would try it the next day. then after i told the kids, mike decided to put it off until tomorrow. but the kids begged and he went and we tried this crazy new idea out! it was great and not too difficult and while tony and i took turns holding mike under the arms to keep him stable he spashed and grabbed at and chased mcKaela and eli around our spot in the water. they loved it. i believe it was the best time they have ever had with their dad. and i was so glad mike took the risk. just wanted to share that summer delight!
sometimes it just takes too long to find a quiet moment where there isn’t something more pressing due to be done. so today my thoughts are actually crowded…
first, mike has had another seizure–last week–after i thought we were stabilized on our replacement seizure med. so it is slightly discouraging whenever you feel like you rounded a corner and discover you really didn’t. but it is not too big a deal–just need to keep monitoring and praying we have the right medicine balance to his need now. i always seem to summarize that it has been the best year for mike in strength and skill stretching. he has been working on taking steps all year, first at therapy last summer and at home daily with caregivers, just a couple, then a few and today he got himself up to 8 steps forward while holding hands with the caregiver. he doesn’t have the balance to stand alone but wow! another ministry called His Wheels brought over a demo bike to check out and list needed adjustments for mike to utilize. it got dropped off on an off day for mike where he felt short of breath enough to run to the ER so he didn’t try it out. (he was fine and came right home). then it just sat in the garage all week until a friend came over and had mike test it out. it is a large tricycle with hand-operated pedals to propel and mike rode down the sidewalk (with tom hovering to keep him safe and sound). he was worn after a few minutes but again, wow!
there are still daily ups and downs while mike and i navigate boundaries and expectations and goals with each other and others within relationships. but i love every chance to be wowed. and i love how God continues to surround us with others who show up and give the next push when we are too loathe to push ourselves. isn’t God good?
even sitting here i can’t stop smiling at all the ways he sprinkles sweetness into our lives as an old young life committee friend saunters out after a surprise visit to watch a Bulls game tonight with mike. and i reread the comments from beloved strangers who have loved us before meeting us and count on God’s repayment for such debts of love which we could never adequately convey enough thanks for. and the wisdom he scatters through old friends!
and i love reading comments out of nowhere from old young life kids whom we “were delighted to share with you not only the Gospel of God but our lives as well because you had become so dear to us”. what a validation that mike and i were spending our lives just where God wanted us! i hope and pray that we are still spending our lives just where God wants us, different though it looks today than back in the 90’s!
thanks for being letting God sprinkle you around our lives!
oh, it goes by too fast, right? i think that as i realize that i have not stopped to update you all on a seizure mike did have about 2 weeks ago. mike did have a seizure lasting less than 2 minutes when i got home on a friday a couple weeks ago. i was so glad to have been home and able to take him to the ER myself and try to be on point for talking to the hospital staff. we followed up with neurology and will be switching to a new seizure med and weaning off of the old one–again–since the hospital loaded him up with it the night of the seizure. but then i have mixed feelings about the speed of life when i remember we are coming up on the 5 year anniversary of mike’s brain bleed. 5 years of trying to make impossible decisions, raise babies, stretch mike, cope with pain, learn nursing, learn advocating, reach for Jesus, hang in there, remind him that sometimes love looks like this instead of that, face needs, thank, cry, enjoy, frame, and live in the moment we are in. 5 years of adjusting to a new normal that never settles long enough to become normal.
it seems like forever, and then like nothing when i remember what life used to be.
so, five years in…
we are more aware of God’s goodness, providence.
more aware of what endurance looks like, what prayer looks like, what helplessness looks like.
there is much less of us, and much more obviously Him.
my moment to think is going much too fast–school bells ring and kids will be waiting.
wonder what the next 5 years hold. thanks for watching the seasons with us, michelle
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
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
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.
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!