Jen Joe Joey & Isaiah

another day, another new blog

2008-08-27T20:01:00.006-05:00

I'm posting these days to mybeamishboy.blogspot.com

Some places are still painful to visit,

even when we're smiling.

I imagine this site will hang out for a bit

for those that want to reflect, for us.

Peace,

Jen

TEAM THOMAS

2008-04-14T06:53:00.003-05:00

Second attempt. Following are the long-awaited details of Hospice of Michigan's annual Walk & Remember. The money raised at the walk supports Hospice of Michigan's open access policy, which allows children and adults to die with dignity, family and the best possible care regardless of ability to pay.

Date: Saturday, May 17

Time: Arrive @ 8:00 a.m.

Walk begins @ 8:35 a.m.

Location: East Grand Rapids Middle School

2425 Lake Dr. SE

Grand Rapids, MI

Parking: Available at East Grand Rapids Middle School & designated streets

Distance: 5K (about 3.1 miles)

Team Name: Team Thomas (in memory of Isaiah Thomas Armstrong Voss, a great lover of Thomas the Tank Engine)

Donations: I have donation forms and tax-deductible receipts. If you'll be attending the walk and fundraising, e-mail me your name/s & address at oneredpoppy@hotmail.com and we will register and send them out immediately. If you believe you will raise $100 or more, you are eligible for a T-shirt; if you would like the shirt, please include size in the e-mail as well (s, m, l, xl).

If you will not be attending the walk but would still like to contribute, you can do so in three ways:

online at www.hom.org

send it directly to us at the address listed below

call Roxanne Kiesling of Hospice at 1.616.356.5266

BONUS: If you decide to walk with Team Thomas, you will have the chance to walk (and even possibly carry) a real live Hospice of Michigan board member, our very own Joe Voss, esquire. Don't miss this once in a lifetime (or annual) chance to see Joe walk three miles (in one day)!!

2008-02-24T08:25:00.002-05:00

WALK AND REMEMBER

Saturday, May 17th falls two days before the eighth anniversary of Joe and I living in marriage and ten days before the first anniversary of Isaiah's dying. On that day, Hospice of Michigan will be hosting its annual Walk and Remember fundraiser. Funds from this event go toward H.O.M.'s Open Access Policy, which provides compassionate care to all who need and seek it, regardless of age, diagnosis or ability to pay. This is a unique and important program and our family will be there: to remember Isaiah, to support the mission of Hospice and because we believe every person should be able to die with the same level of care Isaiah and our family received.

If you are interested in joining us, please do. If you are interested in supporting us as we walk, we will be accepting donations made out to Hospice Of Michigan. Donations can be mailed to:

Jen Armstrong

118 E. 16th St.

Holland, MI

49423

I'll be revisiting this as it gets closer to the date. For those interested, there is more information available on the Hospice of Michigan website. Hospice of Michigan is a non-profit organization and all contributions are

tax-deductible.

As always, thanks for walking the path.

Peace,

Jen

Under the Weather Report

2008-02-13T09:40:00.002-05:00

We're not sick, just literally under the weather. It's been snowy and sunless for over a month so we've been getting creative in our hibernation in order to stay sane and mostly chipper.

Joey and I recently attended an Unschooler's Winter Waterpark gathering in Ohio. We had a chance to meet some of the 900 wonderful unschoolers that made the trek from around the country.

At home, Joey's been listening to a lot of books on CD. One of them has him interested in selling real estate, so he's posted a flyer to the front door listing our house for sale. It's haunted and has bats, but it's only $200 and he's giving tours; call if interested.

We've also spent a lot of time outside and playing with our friends in the West Michigan homeschoolers group we're a part of. This weekend we sign Joey up for Little League and check out the kids' day at the local karate joint- I agreed to a family karate class! Joey has decided he's ready to explore a bit beyond his own karate creations, which most of you have experienced (in the kidneys or the forearms or the stomach).

I've been writing and playing and thinking, not a lot of change there. I've been leading art days for a group of 10-12 kids each month. This spring we'll be exploring printmaking, papier-mache and holding our second annual Jackson Pollock Day. It's a lot of fun.

Joe is expanding his entertainment law practice- and raising his "cool" level in Joey's eyes. Just yesterday, he talked with a rock star and a detective and Joey was all ears and eyes and esteem.

I wanted to check in with the joy we've been living because I know at times only the difficult spots come through in the blog.

Peace,

Jen (and Joe and Joey)

January 18, 2008

2008-01-18T16:00:00.001-05:00

In the spaces outside

the house, a father and Saint Francis

wear unmatched mantles of white;

weighted paperwork and lightest snow.

Within, a brother plans the next mission

to Mars, commander in control

of the living and the dying, adored

by scores of brothers in arms.

A mother stumbles on

words, repeatedly writing: funeral,

seizure, failure. Later and incomplete,

they will eat pizza, for the days he lived

and the day he died. No cake

will be made, in honor of the boy

with the blinding smile.

We can't begin to explain, and you can't begin to understand, except by trying. Thank you for trying, and in the trying, loving us and and honoring Isaiah.

Peace.

i offer up:

2007-12-18T19:54:00.000-05:00

is my joy so small?
a question, not mine, but one i keep on the chalkboard by the phone. sometimes i forget to ask myself, and i find anger everywhere. other times, my cup overflows and i find the question quaint.

in christmas, in memories, in the new year
and in the now, i hope to find my joy is
not so small.

and for all of you, we wish no less than a
joy large enough to carry you.

happy holidays.

jen, joe, joey
and in peace,
isaiah

questions

2007-12-04T19:38:00.000-05:00

life has been a series of questions and answers, and our family life since isaiah died has just been a continuation of the series. today i wondered whether or not we should change the name of this blog like we changed the message on our voicemail. this hasn't really been a place we've used for much of anything since may, when it fed our need to communicate with lots of interested people at once, and it provided a good outlet in the midst of stressful times.

so i don't know the answer- to the blog question or otherwise. but we've been walking together the whole time--in the redwoods over thanksgiving as shown above--and through ordinary life and all of its challenges. memories of isaiah are with us always- and i think they always will be. i hope so at least.

wishing peace over the winter holidays.

joe

about a boy

2007-08-27T21:19:00.000-05:00

Joey today turned seven. I told him the 52nd rule of being seven was giving directions to the bookstore. He promptly obliged and I promptly dropped the 52nd rule in order to get to the bookstore.

Some moments of the boy that have rattled about in my head of late:

After watching Garfield the movie, he wondered aloud why Odie (the dog) didn't speak, while all the other dogs did. I suggested perhaps it was because Odie was meant to seem as the not very smart counterpart. "Oh no, mom, he's very smart. Every time music came on - WHAM - he started dancing right away." I tip my hat to the child who sees what I could not, who recognizes intelligence in all it's forms.

Recently, we acquired an old player piano, and Joey likes to sit on the futon while my fingers practice talking to each other. Yesterday he said, "Mom, can you play another song? You sound like a professional, but you're making me sad." I asked why, assuming it was an Isaiah moment, but he surprised me by saying that he was thinking of the brother & sister in the book we're reading, whose parents died in the first chapter. That he could empathize and name his sadness gives me hope that he will be able to chart the waters of life and of losing Isaiah when the time comes.

Lest I paint him en rose, he is also trying out slumped shoulders and whines, anger and boredom. Much as his father, they don't fit him all too well. He is also, like me, beginning to recognize his need for space, as he traverses the world of friends who enjoy his company. He practices magic tricks and has developed a love of the library and graphic novels. He chooses to continue on the unschooling path and perhaps to take up a martial art and he continues to bring us joy, as he has all the years of his life.

even when

2007-07-30T19:56:00.000-05:00

joey and i have intermittent talks, flow of consciousness, about isaiah. during one i said it would be nice to have isaiah here to hug, that it was hard to never see him, and he said, "yeah, i wished he wasn't dying even when he was dying." he paused and followed with, "but that doesn't make any sense." oh my child, it makes the most sense.
i have been running of late, and taking joey with me, part of joe and i valuing our separate grieving. we have been camping and fishing. catching fish and learning to fillet and cook them, eating them and feeling normal: this is life. visiting my grandmother, who has lost her husband and her youngest son, and who had the gift to say, as i teared up, "you can't talk about him now, and that's normal," absolving me of feeling like i had to talk. driving to the border of quebec to spend a week in a cottage on a clear lake with my sister and her family. coming home to reacquaint ourselves with joe. joey playing and joe working and i fumble in this house that held four, and three seems so small. and mostly i am still me, poor at phone calls, ravenous at reading, finding beauty and being changed. i am glad isaiah is no longer in pain, but i can not say that it eases my missing.

Joel's Homily

2007-07-02T07:29:00.000-05:00

Here's the text of the homily that our friend Joel delivered at Isaiah's funeral last month:

Joel Matthew Anderle
St. Francis De Sales Parish Church, Holland, MI
Memorial Mass for Isaiah Thomas Armstrong Voss
1 June 2007

In his poem titled simply “10”, written one Sunday in 1998, the agronomist theologian Wendell Berry writes words about covenant. He considers what it means to love and lose, in a poem written for his bride of five decades. He considers what it means for all of us to have actually chosen this—since we all did and we all will. And he muses that even in death, he imagines with all he knows, that he would wish he could return, to do it all again, to relive all the joys with his beloved and to re-summit the mountaintops. But not just that, he writes, “I will see that it is imperfect. (To whom would love appear but to those in most desperate need?) Yes, we would err again. Yes we would suffer again. Yes, provided you would have it, I would do it all again.” Wendell Berry points the way to Christian love, covenant, and redemption. A way familiar to Jen and Joe and Joey and Isaiah who lived it for five and a half years.

In fact, Berry reminds us that while our mountaintops make us tingle, our valleys are the most remarkable substance of our life. Or maybe it’s the journey in between. Or maybe it’s the journey. Daily life, lived through the lens of love, proves transcendent. The practice of love, then, proves to be the doorway to abundant life. Real life. Not easy life, nor painless life, but Life with a capital “L.” A life of love.

Someone once asked Jesus what it was all about, this life of ours. And he said “two things. First love the Lord your God with all you’ve got (you know, the Shema), and second, love your neighbor as yourself.” Learn to love, and love the learning. That’s our call.

To grow not just accustomed, but to become friends with the complexities of medical fragility, to fall into abiding and wondrous love with a boy whose lifespan was to be unquestionably brief, to love with a laughter that names and owns the darkness and then denies it its power by kicking it back: this is the pathway that Jen and Joe and Joey Michael have worn into a graceful, loved grove.

To love we must choose to love, we must choose a heavy load, we must embrace the sorrow that comes for us and for all creation, and we must not buckle. Not because we are strong. No, because we are weak and because we know where to find hope and strength in our place: we fall back into the Love Divine and there, in our place, for us, on our account, love is strong.

We gather in this mass to recollect these thoughts. To remember not just the amazing human being that was love incarnate in Isaiah Thomas Armstrong Voss, but to remember the God of all life who came in love in Jesus Christ. We recollect the story, we recall our place in it, and we remember the end: not death, but love; not loss, but union; not pain, but joy. We recollect the story to own it, to be enfolded by it, to share it with one another as love calls us to serve and calls us to one another. For this is our path now.

In addition to her role in the creation of two beautiful boys, Jen creates beautiful clothes. Carefully imagining, designing and crafting them—from pieces into wholes, united in theme and design and purpose: love’s work flows from her heart and hands in delicate and responsible stewardship. This is the vocational call of all of us gathered, to be weavers of a fabric of our faithfulness, as Steve Garber has put it, to weave together our belief and our behavior into a unified, integrative whole in the service of God’s love that fills us and sends us.

In the name of the Father and of the Son and of the Holy Spirit, Amen.

in this way

2007-06-08T16:47:00.000-05:00

behind the museum glass, i see the clay jar
the shards that encased the treasure
the small bronze plaque declaring the dates
of loss and discovery
does not claim to know the location

i see the jewels in my mind's eye, red and blue they glowed
i felt their heaviness in my hand, know their weight
in my heart

i can not stop my face turning to the morning sun,
and my lips still stain red with wine and laughter
even as my eyes pool to the depths
in search of lost treasure

jda

Hotels

2007-05-29T14:02:00.000-05:00

Just to let you know a little bit about hotels in the area... please refer to the Holland website for a good list of hotels.

We recommend the Haworth Inn which is very close by and they have rooms available for $95 a night Thursday, then $125 Friday, though with AAA or AARP, you can get that Friday rate down to $95. There's also some availability at the Hampton Inn, which has been recommended. The Fairfield Inn was also recommended, but they did not have availability the last I checked.

We weren't able to get any special rates with anyone, so go ahead and book on your own.

Thanks, Jon

Services for Isaiah

2007-05-28T16:00:00.000-05:00

Services for Isaiah will be held at 11am on Friday June 1, 2007 at St. Francis de Sales Church in Holland, Michigan. There will be no visitation or burial services.

Here's a google map of the location.

We're looking forward to seeing folks as we celebrate the gift of Isaiah's life.

Also,please let me know if you are needing overnight accommodations, I'm working on getting some group rates at nearby hotels, etc. but won't have anything firmed up until tomorrow. You can call me on my cel at 415-846-7218.

Thanks, Jon

ITAV

2007-05-27T17:50:00.000-05:00

Isaiah Thomas Armstrong Voss.

January 18, 2002- May 27, 2007.

It was peaceful.

Thank you all- more details to follow.

Love,

Jen, Joe and Joey

No flowers- we're directing folks to Hospice of Michigan and the Ronald McDonald House Charities if you want to help other people like us in Isaiah's name.

sunny sunday

2007-05-27T10:14:00.000-05:00

after a couple of phone calls this morning, i think the first thing people want to know is that isaiah is still alive. he mounted a rally of sorts last night, after a couple of moments that we we were certain that he was about to die. but the rally isn't necessarily a good thing anymore, now that the focus of our care has shifted from prolonging his life to securing him a safe and comfortable passage.

he is not comfortable when he is awake anymore, so we are mostly helping him stay asleep.

joey's film festival is moving into its second day, and he is under doctor's orders to lay low until he is fever-free for a long stretch.

turning stuff off, etc.

2007-05-26T17:48:00.000-05:00

we made the decision to turn off isaiah's pacemaker this evening, and we're not really sure what result that will bring about. we have been keeping him quite comfortable for most of the day with morphine, and he probably got as comfortable as he has been in the last few days in the half hour before the hospice folks arrived to turn it off. which- of course- makes it all the more difficult.

joey has had fevers off and on for the last couple of days- the doctor says he should get better on his own in a couple more- something is going around. he hosted a film festival this afternoon in his room, and was pretty in to making us knock before we entered. the four of us have had some quality time lounging in isaiah's bed, and have been thriving on the continued quiet.

for now- we're waiting, although we feel like we won't be waiting for much longer.

thanks for keeping us on the radar this weekend.

i would breathe life

2007-05-26T05:27:00.000-05:00

if i thought i should. instead i watch, play movies, give sips of water, draw up morphine every two hours, and wait for the first missed breath, and the last. because i love him more than life, more than the body his spirit has been tethered to these five years. he finally fell into a restless sleep after 3am, crying out, "no, i don't want to go until the day after tomorrow." this promise i make to him, we will not go anywhere until the day after tomorrow, and he continues to sleep.
joe is sleeping after his shift. i know joey will wake up soon. i hope that he will not be feverish, as he has been these past two days. i hear the rain outside the window, know that behind the garage my young vegetable sprouts will be pushing up even more, that isaiah's sunflowers will be reaching for the coming sun.

as always, we will continue to update

steroids and opiates....

2007-05-25T14:08:00.000-05:00

last night was a rough night- isaiah was not able to get any good rest, and he has had difficulty breathing for the past several days. we have a strong sense that we are quite close to the end- but again, it is extremely hard to tell.

we called the hospice folks to talk about the best way to approach the developments this morning, and a nurse ended up coming out. we coordinated getting some steroids that can relieve swelling in his airway, and some morphine, which can trick a body into thinking it has enough oxygen. isaiah is sleeping comfortably for the first time in what seems like a long time, and it is uncertain what will happen next.

as we've said before- in life, it is always uncertain what will happen next. we just happen to have a condensed microcosm of the human condition laying in his upstairs bedroom. a gift to us in so many ways- as you all are. we'll update as often as possible- and for now, we are strengthened by the quiet.

victory lap

2007-05-18T17:59:00.000-05:00

we went to chicago to visit children's memorial one last time yesterday- it was only a social visit, and no one even so much as raised a stethoscope to isaiah's chest, which was nice. it was good to see so many of the people that have had such profound effect on all of our lives over the past 5 and a half years, and although there were some sad moments, i think it was a successful outing. we were able to give isaiah control over his person for the first time in that place, and i think that he certainly appreciated it. in fact, i think knowing that he doesn't have to undergo any more procedures or tests is probably the primary level at which he is tapping into the whole hospice experience. he doesn't know that he's going to die- but he knows that he's not going to have any more blood draws. and he's happy about that.

we're still getting used to the uncertainty of this process, but wonder if things would be easier if we knew what day the journey will end. laying with isaiah in the early morning today and watching him breathe with considerable labor in his sleep, i wondered if today would be the day. but now, in the mid morning sun, he's playing at the table and looking rather well.

Touchstones

2007-05-15T08:03:00.000-05:00

I know that many of you are wondering how it is that you can help us at this stage of the journey. I ask that you continue to be our touchstones. Those points in our life that we visit to remember joy, to center ourselves. Rest assured that I (we) will ask for help, that what pride I have left is usually reserved for misinterpreting my husband's well-intentioned words (sorry, my love). Our primary foci in the coming days are keeping isaiah pain free and relatively happy and creating memories that joey will be able to reference as he grows without his physical brother. You have many gifts among you and we ask that you help us in these goals. Perhaps you are able to come read stories or play an instrument or do an art project with both boys. Perhaps you are able to have a play date with Joey while Isaiah gets one-on-one time or spend an hour with Isaiah so one of us can play catch with Joey. Maybe you work somewhere with big trucks or construction vehicles that the boys can check out. They're still kids and they love trains and dirt and playgrounds as much as ever.
As time goes on, and Isaiah weakens, we may ask for more adult help, such as with meals or lawn care, or to go for a beer.
We are talking with Joey as he can handle it, but please, if he brings it up, don't shy away. He will have great grief and anger and fear, and we do not ask him to be strong or brave any more than we are. It will be a great service to him simply to know that you are a part of his life before, during and after this time.
If you are uncomfortable with where our life is heading, we do not ask that you join us on the road. If you are along for the ride, trust that we will ask for help, but if you have an idea you believe will be helpful, just ask. If we don't need it today,we may tomorrow. And thank you, for yesterday, for today, for tomorrow.

Happy Mother's Day

2007-05-13T13:00:00.000-05:00

I know I am once again abusing my posting priveleges on this blog, but I think I speak for a lot of people in saying this...

While we are celebrating our own wives, moms, mother-in-laws, grandmas and great-grandmas today, I for one have certainly been thinking of you Jen, and hoping that today is a quiet day at home with your three little boys taking care of you, one bear hug after another.

Rock on. Love, Jon, and a hundred other people

going home

2007-05-12T06:02:00.000-05:00

after one of the more peaceful nights in an ICU that isaiah has ever had, we're going home this morning. we're not really sure what's going to happen next, other than that we can safely tell isaiah that we're not coming back to the hospital again, and that he won't ever need lab draws or ivs or surgeries again. our meeting with the medical staff at devos yesterday didn't answer all of our questions, but it reaffirmed what we have really always known- there is no way to fix his body so that it will last much longer. we really don't have a timeframe for when his heart or his kidneys may finally fail- i suppose it's a two week to six month window- but even that is just a guess. a hospice nurse will come in this morning to assess him before he is discharged, and they will start visiting us at home to keep an eye on him-and us. we're not bringing him home to die, we're bringing him home to live the rest of his life in as much comfort as we can provide. our focus is shifting from keeping his body running to finding peace for joey, ourselves and isaiah. we're just not sure how we will approach the coming days, and i suppose it will be a lot like the days past- one at a time.

we will be in touch.

driving into the sunrise

2007-05-11T08:30:00.000-05:00

the early morning drive from holland to grand rapids is pretty nice- if it's timed just right, you can catch the sun popping up and over the horizon, and it stays a mild red just long enough to make the trip before it gets too bright to look at.

we met with the folks from hospice of michigan yesterday, and we have a meeting with all of the docs that have been following isaiah since we've been in here. we've generally been happy with the care, but we are ready to be done with the ICU scene. whether it's here or in chicago.

we're in the early stages of planning for what's to come, and will continue to update this site. we have internet access in isaiah's room now- so that helps.

thank you-again- for lifting us up as we try to tune into the natural ebb and flow of life with our family.

As the year turns, so approaches

2007-05-09T20:18:00.000-05:00

the seventh anniversary of Joe and I sharing life and love together. On the day we married, you, our community, sat witness. You read the words of Kenneth Rexroth on our program, words we chose because they made deep sense to us: "I have always known that at last I would take this road, but yesterday I did not know that it would be today." Between then and now, you have continued to bear witness, to our love, our grief, our hope, our family. Today, we come to you again, to say that at last we are taking a road that has always run along the horizon of our world.

On Tuesday, we took Isaiah in for a routine cardiology appointment. It was after two rounds of lab tests and an admission and complete work-up at DeVos Children's Hospital in Grand Rapids, that we learned Isaiah's kidneys are failing. The heart surgery last June was the fix for Isaiah's heart. We had hoped it would give us more time, but it appears so complicated a heart is not meant for fixing. His heart is failing, which leads to kidney failure as the kidneys have tried to make up for the heart's decline, and can no longer keep up.

The nurses and physicians at DeVos have been compassionate and straightforward. Isaiah is not a candidate for, nor would we chooose the path of, dialysis or transplantation. We are working to get Isaiah's body to it's best possible state in the next few days before we bring him home. We will then work with the doctors and the pediatric palliative/hospice care team to give him the most comfortable and wonderful life we can, while we can, be that two days or two months.

We do not take these steps lightly. Our words are slow, and weighed down with love and grief, our steps measured by Isaiah's suffering these past five years. Isaiah and Joey have no idea that this hospital visit is any different from the others. Isaiah plays with his trucks and Joey battles his superheroes. The knowledge of what is going to come slips away, eludes, in the face of what is now. And this is what we ask you to bear witness to: a husband and wife, two brothers, a family trying, some times failing, other times succeeding, to embrace this day, this sacred journey, in all it's mystery and pain and beauty.

Isaiah at DeVos

2007-05-09T17:40:00.000-05:00

Hey folks,
Joe asked me to put up a quick note to let you know that Isaiah was admitted to DeVos hospital in Grand Rapids last night. In Joe's words, "we're in here to deal with some kidney failure popping up most likely as a complication related to his heart."

They don't have internet access there and are scrambling a bit on logistics, but will post in fuller detail when they can.

Please stay tuned, and keep Isaiah in your thoughts and prayers.

Jon