The Gort Family

Court Date Rescheduled

2014-04-29T18:38:00.001-04:00

It's official we will be in court on August 4, 2014. This was very hard news for us to hear especially since our original court date came and went without us even making into the courtroom. In fact the news hit pretty hard.

We are now another 97 days from a date that at one time we thought was immovable. Though our hearts are heavy for Eliza who needs daily care, needs new equipment and more therapy, somehow we are able to keep going. We've made it this far. And smiles sure help us get through the days.

Happy Spring!

2014-04-25T10:32:00.000-04:00

Despite the delay of our trial date we still had to travel to Grand Rapids for a court-ordered mediation. It was a quick trip and we didn't get to see all of our good friends and family.

While the discussions of the meeting are confidential, we can tell you that we did not reach an agreement and are awaiting a new trial date. We can also say we were able to gain some closure with the doctor involved in Eliza's case. And we are staying steadfast to make sure Eliza receives all that she deserves.

What we can tell you is that we did enjoy the sunshine, flowers and the lack of snow.

Court date delayed, Eliza's fight rolls on

2014-04-06T11:13:00.000-04:00

When the only thing you count on fails you, you find ways to reason it into a reality you can accept.

Such is the life of the Gort Family as we were prepared to adventure our entire family into a courtroom in April.

Eliza’s case against the responsible party for her injury to be held in Kent County Circuit Court will be delayed from its original date (April 21, 2014).

The date was the only thing that mattered to us, providing some end in sight to this unnecessarily drawn-out fight for justice.

It seems that circumstances beyond the control have caused the court start date to be delayed until sometime in May (and we don’t have a new date yet)!

It’s another devastating blow in what has become more than a four-year journey, never having the ability to put behind something that we deal with on a daily basis (all of the decision-makers involved have little clue of our lives).

But the most important news is that Eliza, continues to remain healthy and happy. She continues to express her wishes, her likes and dislikes and love for her family. She works as hard as she can but deserves so, so much more!

We can’t wait for her to have the daily help and therapies she needs, something she’s been without for more than two years, thanks to the unhealthy decisions people make because of costs.

More importantly, Eliza’s future needs directly impact the needs of her siblings. Violet and Gwen continue to get short-handed with their needs but thankfully both girls are and continue to be healthy and happy.

While Regina and I, tire easily continually going beyond the basic needs of all girls, we are fighting the best we can. We hope that our lessons in patience and focus on the big picture help us close this long-but-eye-opening chapter in our lives.

A new court date will be crucial in giving a little girl who was harmed for a life-time the justice she deserves. We’ll update you when a new date has been issued.

Our fight, Eliza’s fight, rolls on.

Happy Birthday, Eliza Madeline Gort!

2014-02-26T15:36:00.001-05:00

Today we celebrate Eliza's 4th birthday.

If there was ever one word to describe our little Liza Bean it would be joy. In honor of her ever present joy we post a poem.

Infant Joy

By William Blake

I have no name

I am but two days old.—

What shall I call thee?

I happy am

Joy is my name,—

Sweet joy befall thee!

Pretty joy!

Sweet joy but two days old,

Sweet joy I call thee;

Thou dost smile.

I sing the while

Sweet joy befall thee.

60 days

2014-02-20T09:54:00.001-05:00

We're just six days away from Eliza, our youngest daughter, turning four years old.

We're so amazed by the progress she's made since her brain injury just hours after she was born.

She's expressed her will to talk, and makes not only distinct consonant and vowel sounds but also clear "mom" and "dad" expressions. Pretty cool stuff!

While all of our daughters are pretty happy kids (with exception to Gwen for the first three years of her life), Eliza has been the easiest-going child thus far.

Her ear-to-ear grins start when she wakes up and don't stop until she goes to bed. Even her snarl faces are hidden behind half-grins. She helps us find the joy each day as we labor through getting kids off to school and/or therapies.

It's been a while since our last post but many of our friends and family have asked us how to support us as we prepare for and go to court, which is 60 days away from today. Below are the details, which is public information from the court.

Kent County Circuit Court

April 21 to May 2

9 a.m. to 1 p.m M-F

The reality of this has yet to set in but we're steadfast with our legal team with our thoughts about what Eliza needs and deserves for her life-long care.

We put it all into perspective by break our lives down into days since or by days to go.

For example, it's unfathomable to me what we've endured for the past 1,460 days since Eliza was born/injured (without a resolution with the hospital).

We've gone 639 days without nursing care, without the help that at first the hospital provided (only after Eliza was six-months old).

With only 60 days until we go to our trial, these other numbers seem quite arbitrary. It helps me think we can do this for Eliza, the little-big light of our lives.

Each day of hard work gets a bit closer to hoping that the legal system will help us secure her future for care, therapies, equipment, school, etc. Many days our bodies feel older than we are, perhaps the entire drawn-out legal process is adding years (probably in the wrong direction) to our lives.

But that shiny little light who we call Eliza has no shortage of love (or food or water), and we're very thankful for all of her and those who are supporting us in our fight.

A milestone at the House of Gort

2014-01-26T10:48:00.002-05:00

Typically when we think about milestones at the House of Gort they are related to those either achieved or not achieved by our children.

I recall the anxiety Regina and I used to get looking at the Baby Book by the Sears, watching Gwen fail milestone-after-milestone until we simply tucked the book away, only referring to if we were desperate for sleep. I think Dr. Sears has wised up over the years, writing more customized versions for children with different needs, although I've not read any of them.

It doesn't matter. We've had to face a few of those milestone questionnaires with Eliza all over again. We've answered quite a few questions for a second time in our lives, questions we never thought we'd have to face again. I can laugh at them now but they used to make me so angry. We've learned to find peace in marking milestones because there's always a second (or third) perspective.

The milestone I'm referring to in the headline of this blog marks an official timeline in our lives. We've passed the 100-day mark for Eliza's malpractice case to be in court in Kent County Circuit Court (Grand Rapids). In fact, we're quite a few days beyond that mark - and it's tough to reflect on how we never wanted to sue a children's hospital. We never wanted to take on a gigantic health care system - after all, we're just a family, we're just the victims of poor healthcare implemented by rapacious administrators.

But I couldn't be more proud of what we have endured in the nearly four years of physical, mental and emotional ups and downs. Our hopes of resolution fell short in December as the hospital attorneys communicated their unwillingness to fully and wholly care for Eliza for her lifetime. She will be turning four on February 26th. That's right, four years old. This milestone creates a Molotov cocktail of emotions where blissful love for Eliza rubs me raw to my core that she's the one being short-changed over and over and over.

On the one hand, she's a happy little toddler who loves every person in her life. She's a very hard worker who deserves one-on-one care so that she can flourish, which she doesn't get from Regina and I, as we care for her and the other children and ourselves simultaneously. Eliza also is the cutest and naughtiest little sister, just in the way you expect little sisters to be (you know, in that special loving way).

But on the other hand, as far as we have come as a family unit, leaving the torturous memories of life-changing events behind, there is still a fight ahead. There is still care to secure. There is still equipment that's needed. There are still much-needed resources that Eliza has yet to receive, resources that will help her endure and make all of our lives less stressful.

There will be six people sitting in a box when we go to court who will make a life-long decision for Eliza. It is my belief that they give her the justice she deserves. Perhaps more importantly, the public will see Eliza's fight from her eyes. She has many needs but at the same time, I think many people will have no trouble relating to her.

Welcome to the New Year

2014-01-01T20:42:00.000-05:00

Tim said goodbye to writing for The Grand Rapids Press with a touching article about finding forgiveness that I would argue is some of his best work. I encourage you to read it here if you haven't already.

At the House of Gort at the end of the year we sit down together and go over our goal list. This year we crossed of the most goals ever. And even the ones we didn't cross off we were able to achieve something toward those goals.

Then we have to create the next list. What is so exciting about this year's list is there are some goals we already in the planning stage for.

One of the goals is a family vacation. And with the help of the Make-A-Wish Michigan our family will be going to stay at Give Kids The World in Florida as a part of Gwendolyn's wish.

Although the logistics of getting there by plane(this will be a first for the whole family) with Gwen and Eliza and their wheelchairs and medical equipment feels daunting, we know that we will be in good hands willing to help make this trip unforgettable for all the right reasons. Violet already has a countdown calendar up in her room.

From our house to yours, Happy New Year!

It's Simple

2013-12-22T12:22:00.001-05:00

The true meaning of Christmas can be found on Gwendolyn's face.
It is joy. It is hope. It is a child's belief in the true magic of life.

Family Photos: The House of Gort Fall 2013

2013-11-04T09:13:00.003-05:00

It takes a very special photographer to capture The House of Gort. Getting everyone to participate and smile is a big task. It takes a good eye and a very fast finger!
Thank you to Jessica Wolf at Dharma Threads Photo!

Here we go again

2013-10-18T09:20:00.000-04:00

It's hard for us to believe we are entering our second winter season in the Upper Pennisula of Michigan. When we first moved here in May of 2012, it was supposed to be temporary. Last fall we wondered if we'd even make it through the winter. Now as the forecast is calling for snow tomorrow we know we are in for another long winter. But if there is anything we learned from last year it is summed up in this quote:

“Winter is the time for comfort, for good food and warmth, for the touch of a friendly hand and for a talk beside the fire: it is the time for home.”
― Edith Sitwell

Happy Birthday, Gwendolyn Willow!

2013-09-29T02:00:00.000-04:00

11 years ago today Gwendolyn was born and her identical twin sister, Gabrielle, passed away.

Gwendolyn was a fighter from day one. She came into the world small but full of fight.

Gwen taught Tim and I to be parents for the first time.

She has taught us by always testing our patience, persistence and courage.

. She likes things her way. But by the same token looks out for her little sisters, even if she does find it funny when they cry. She has a wicked sense of humor.

Gwen is my heart.

And she has grown in a beautiful young lady.

Happy Birthday to our Gwennie Penny!

Surviving Birthday Parties

2013-09-25T01:30:00.000-04:00

The key is to keep them short and sweet. Even though Gwen's birthday isn't until this Sunday we lumped her and Violet together in one party for the family. Gwen had an opinion about that. She decided she'd rather stay in her room and make each party guest come to her with gifts in true diva style. Here are the highlights from Birthday Bash 2013.

The Birthday Sisters

Eliza is waiting for Vi to hand over the balloon

Katie, Krysta, Vi and Margaret

It's great being 5

Grandma got Gwen a Love Rhino

Lots of love from Great Auntie Jan

Happy Birthday, Violet Ruth!

2013-09-19T04:00:00.000-04:00

5 years ago today, Violet Ruth came into the world.

She brought light and love into our family. She's loved her big sister Gwen from day one.

She's always been confident and independent.

A free spirit who loves her family, nature and is open to whatever comes her way.

She has taught us patience and to stop what we are doing to notice the beauty the world has to offer.

Happy Birthday to our Violet!

Many happy returns!

It's about time for an update

2013-09-16T09:33:00.001-04:00

We aren't sure where the summer went. It was busy, fun and full of family. Now we are getting back into a routine.

Violet started kindergarten and Gwen is in 4th grade.


Violet's First Day of Kindergarten

This means little Eliza who is not so little anymore is at home with mom and dad. And the House of Gort birthday maddess is just about here with Violet's 5th birthday this week and Gwen's 11th birthday just around the corner. Add to that 2 grandpa's birthdays, an aunt's birthday, very good friend's birthdays and then Tim's and we have our work cut out for us.

Gwen enjoying the sunshine while it lasts

But the biggest news in the House of Gort is that the judge gave us a trial date. That's right we'll be heading to court on April 21, 2014.

Eliza is all smiles

Raising children with disabilities and the art of marriage: July Article for Grand Rapids Press

2013-07-31T10:08:00.002-04:00

In case you missed this past Sunday's Grand Rapids Press, here's a link to my July article.

I'm sure that Regina and I could write a guide to parenting but I believe that nothing can really prepare you for the journey of raising children with disabilities.

Really, you have to fail, learn and fail some more until you begin treating it like an art form.

Enjoy!

http://www.mlive.com/living/grand-rapids/index.ssf/2013/07/raising_children_with_disabili.html

Summer Fun

2013-07-22T01:30:00.000-04:00

We have been enjoying the spoils of summer. This past week we have had several friends visit from Grand Rapids and this week our favorite family from Nebraska will be here. Summer is short in the U.P. and we are trying to soak it all up.

Gwen and Eliza, Blueberry Picking Supervisors

Eliza, Professional Beach Bum

When love arrives

2013-07-15T08:57:00.001-04:00

As a parent the definition of love becomes any number of things that you might not have ever imagined. There are times where my chest is so full of my love for my girls that it feels physically heavy. As a caregiver sometimes it's hard to feel the love which might come easily as a parent. The day to day routines get in the way of being able to see the truly magical, lovely moments. This photo and this poem are my reminder today that love arrives in moments where I am open to receive love.

Gwen and Eliza, full of love

Touched by an Angel

By Maya Angelou

We, unaccustomed to courage
exiles from delight
live coiled in shells of loneliness
until love leaves its high holy temple
and comes into our sight
to liberate us into life.

Love arrives
and in its train come ecstasies
old memories of pleasure
ancient histories of pain.
Yet if we are bold,
love strikes away the chains of fear
from our souls.

We are weaned from our timidity
In the flush of love's light
we dare be brave
And suddenly we see
that love costs all we are
and will ever be.
Yet it is only love
which sets us free.

Eliza teaches happiness

2013-07-10T10:17:00.000-04:00

“Compassion leads to happiness." -Michael Pritchard

Last night Tim and I watched the movie, Happy. I highly recommend it. While watching it, I was so moved. I realized that every day Eliza teaches me how to be happy. Happiness is a choice. What amazes me the most is that not only have I chosen to be happy but Tim has chosen to be happy. We have chosen to be happy together, as a couple, as a family, even after circumstances have been anything but happy.

Staycation Highlights

2013-07-08T03:30:00.000-04:00

Tim and Violet are ready for adventure

While I would like to pack up the House of Gort and head out for a family vacation, I have to say that this year's staycation was awesome. We spent four very relaxing days at the cabin on the lake. The weather was stunning and the girls were so happy to be beach bums. And although it's a lot of work and compromise, it was fantastic. We also had our first boating excursion of the year with Gwen's friend, Olivia and her family.

Here are some of the highlights. A note about the pictures: A friend of mine recently asked if our girls are always as happy as they look in the pics or is it just a front? I can honestly say that they really are happy girls most of the time. For Eliza I can say that 99.8% of the time she is a very happy little girl.

Eliza making good use of the hammock

Beach Bums : Eliza and Gwen in their beach tent

Eliza loved the boat ride

Getting ready to hit the open water

Beach time


Gwen wants me to get out of her rays

4th of July twins

Sunshine and Rainbows

2013-07-01T02:30:00.000-04:00

This weekend provided some much needed respite for us all. We are looking forward to a week at the family cabin. Wishing you a Happy 4th from the House of Gort!

Violet has started her rock collection

Tim has the right idea!

Eliza and Violet having a p.j. party

A double rainbow over our house after a rainy week

I don't think so

2013-06-28T02:30:00.000-04:00

It's been a long time since I've written a post, and Regina has done a great job of keeping the updates rolling along.

More importantly, she's giving you highlights of the moments when the sunshine fills our lives, which is quite often with our three beautiful girls. I love them so much, and there's just nothing I wouldn't do for them.

I've not been inspired to write lately, and perhaps that is because our legal battle lags on, and on, and on...depositions continue with experts on both sides of the table who will determine (and eventually argue, I suspect) over Eliza's immediate and long-term care needs.

We live those needs each and every minute, but fall short on a regular basis. I want to believe that we are in the home stretch, that eventually all will be resolved, but it's tough to believe as each day, so many months and years have passed by.

I have to be honest. There isn't a moment that goes by where one of us doesn't think about how our family would benefit from an extra set of hands. Sometimes these fleeting thoughts hits us in the morning. Sometimes as we lay our tired heads down at night.

And other times, it's when Violet needs to use the restroom while we're out in public, and we're managing two wheelchairs. We can't go out in public as a family with a four-year-old and two children using wheelchairs.

One of us has to wait in the van while Violet and Regina or I have go in somewhere. We are in constant management of who will go and who will stay. We couldn't even buy flowers and vegetables for our garden as a family - of all places thinking this would be manageable, you'd think a greenhouse would be right? Wrong.

However, it doesn't matter how many times you curse a hospital's management and/or legal team for making decisions based upon money - instead of basic decent human decency - it doesn't change the facts. We were provided with nursing care and then it was taken away. We live that reminder - always.

I will never get why. Was it purely a financial decision? Heartless. Was it a decision based upon our move to the U.P.? Unfounded. Was it because we moved away from the hospital's financial "sphere of influence?" Possible.

Or, could it be, could it possibly be, the mistake made is purely too unimaginable, too BIG and too costly, that it just doesn't want to pay up for the damages made to Eliza that it will fight against my poor family until the very, very end? Plausible.

Meanwhile we keep chugging along, sleep-deprived daily, on much caffeine, on auto-pilot some days. Perhaps at best, there is an idea that this kind of endurance test will cause us to bow down and say "uncle." But with more than three years behind us, and a court date just around the corner, I don't think so. I don't think so.

Eliza making her tiger face

Weddings, Mud Puddles and New Pets

2013-06-24T02:30:00.000-04:00

First to wish our niece, Ashley and her new husband, Rob, a very heartfelt congratulations. We had plans for all us to travel downstate but without any one to help out, we decided to send Violet and Tim. Unfortunately that left Gwen, Eliza and I home without the relief we needed. So in a heart wrenching decision we all stayed home, despite Violet's plea about missing her cousins. We wish them all the best!

Ashley and Robert Hallberg

This past weekend we felt like we were in the Pacific Northwest, after days and days of rain, we finally saw the sun.

The Gort Girls getting some rays

Eliza Bean loves the outdoors

Eliza was able to get out in her power chair and practice driving.

And Violet decided the mud puddles would be great fun.

The Dirty Princess

We also have a couple new pets, Rainbow Dash, a betta fish and her friend, Snail. These two little creatures are a part of our new aqua farm. Essentially it's "a self-cleaning fish tank that grows food". It was a kickstarter campaign and we are all pretty excited about it. We've planted wheatgrass, peas, cherry tomatoes and a couple kinds of lettuce.

Our other garden is loving all the rain! And we are all having fun watching it grow.

Forgiveness

2013-06-19T03:00:00.000-04:00

Many times I have asked myself if forgiveness possible? Can I forgive the mistake that altered Eliza's life? Can I forgive the people responsible for her brain damage? And what about the institution that gave and then took away her nursing care. Eliza doesn't hold a grudge, she doesn't hold anger. So why should I?

How Divine is Forgiving?
by Marge Piercy

It’s a nice concept
but what’s under the sculptured draperies?
We forgive when we don’t really care
because what was done to us brought unexpected
harvest, as I always try to explain
to the peach trees as I prune them hard,
to the cats when I shove pills against
the Gothic vaults of their mouths

We forgive those who betrayed us
years later because memory has rotted
through like something left out in the weather
battered clean then littered dirty
in the rain, chewed by mice and beetles,
frozen and baked and stripped by the wind
til it is unrecognizable, corpse
or broken machine, something long useless.

We forgive those whom their own machinations
have sufficiently tangled, enshrouded,
the fly who bit us to draw blood and who
hangs now a gutted trophy in a spider’s
airy larder; more exactly, the friend
whose habit of lying has immobilized him
at last like a dog trapped in a cocoon
of fishing line and barbed hooks.

We forgive those we firmly love
because anger hurts, a coal that burns
and smolders still scorching the tissues
inside, blistering wherever it touches
so that we bury the hot clinkers in a mound
of caring, suffocate the sparks with promises,
drown them in tears, reconciling.

We forgive mostly not from strength
but through imperfections, for memory
wears transparent as a glass with the pattern
washed off, till we stare past what injured us,

We forgive because we too have done
the same to others easy as a mudslide;
or because anger is a fire that must be fed
and we are too tired to rise and haul a log.

Eliza teaches acceptance

2013-06-17T03:00:00.000-04:00

Eliza won't judge you unless you happen to be wearing a white doctor's coat. And although she has some stranger danger anxiety, she accepts each of us daily with our faults. She is open and loving. Her smile fills every day. We have so much to learn.

Wild Geese

By Mary Oliver

You do not have to be good.

You do not have to walk on your knees

for a hundred miles through the desert repenting.

You only have to let the soft animal of your body

love what it loves.

Tell me about despair, yours, and I will tell you mine.

Meanwhile the world goes on.

Meanwhile the sun and the clear pebbles of the rain

are moving across the landscapes,

over the prairies and the deep trees,

the mountains and the rivers.

Meanwhile the wild geese, high in the clean blue air,

are heading home again.

Whoever you are, no matter how lonely,

the world offers itself to your imagination,

calls to you like the wild geese, harsh and exciting

over and over announcing your place

in the family of things.

from Dream Work

published by Atlantic Monthly Press

Happy Father's Day, Tim

2013-06-14T05:00:00.000-04:00

Dad and Gwen on a boat tour

Tim and Violet with a dinner catch

Like Father Like Daughter, Tim and Eliza


Tim and my dad on the way to the World Series last fall

Tim is an amazing father, husband, son-in-law, advocate, caregiver, writer, poet, surfer, hiker, berry picker, mushroom hunter, wood chopper and gardener to name a few. I wanted to share a piece I wrote during one of our therapy sessions in tribute to Tim.

To Tim:

The first time I spotted a trout lily, Gwen was bundled
on my chest, as we hiked on Mother's Day.

What is that flower? I asked.

To which you replied without judgement or explanation of it's commonality, It's a trout lily.

And we both marveled at the day's bounty, the spring sun, our new baby and time in the woods as a family.

That first Father's Day, I gave you a flower press and the first flower we put in it was a trout lily.

From that time on there has been an undercurrent of appreciation as you moved earth to plant flowers- forget-me-nots- my favorite, even though they refused to flower by the white picket fence of our first house.

We both have awakened to nature more and more each year. And even now though the identification of bird songs, wild food, flowers and trees has become more deliberate, more intense, there still is no judgement and always plenty of mystery.

Happy Father's Day, my love