One Year Later...

Exactly one year ago The House of Gort packed up a U-Haul and headed North. We had no idea where we would be living and that Eliza's nursing care would come to an end.


We were a family making a decision with all of the information we had at the time. 

Now looking back at one year we can say that we made right decision, even though the daily work load is double of what it was when we were in Grand Rapids. My family, especially my dad, has benefited from having us so close.

Yes, we are a long way from Ann Arbor where both of the girls receive their medical care. Yes, we are a long way from good friends who continue to support us(for which we are so grateful).
Yes, we are still in engaged in a lawsuit.

But we are where we need to be right now. And we survived a monstrous winter!

We have had a full year of family, that is so priceless. Gwen has a best friend, Violet is thriving in preschool, playing violin and starting soccer and Eliza is happy. All three girls have grown like weeds.

Tim and I struggle to find the balance of caregiver and parent and married couple. But we continue on, writing, living and loving our girls. (And we are ready for some summer sun!)

A hundred more years

If you're reading this, chances are you probably know the reason I started this blog is because our third daughter, Eliza, was brain-injured due to a medical mistake shortly after birth.

It's hard to believe not only how much has changed since then but also what we've endured over the past three years - a true testement of relational and familial strength.

We went through six months of being completely shocked, thinking we could navigate through our challenges of raising three girls just as we had done with the previous two.

We went through a year of getting nursing care around the clock to help assist with Eliza while we trying to understand the magnitude of our situation of having two children with cerebral palsy.

We went through a spinal fusion surgery with Gwen that had an unexpected outcome, as she endured a tracheostomy because of an in-hospital medication overdose.

We listened to the glowing news, read headline after headline and watched the cities biggest donors at the gala for brand-new children's hospital - all while Gwendolyn lay upstairs in the pediatric intensive care unit fighting to take out a wrongly placed tube in her trachea.

We had conversations with people, ranging from lawyers, doctors and risk-managers to strangers, family, friends about topics we never thought we'd be discussing.

We moved into a very large house in the suburbs of Grand Rapids that temporarily allowed us to see through post-traumatic-stress disorder's thick smoke. We even managed a trip to the Redwoods in northern California for our 10-year anniversary - the first time we had five consecutive days together that we weren't caregiving!

We wrote through our feelings, discussed our fears and angers, and fumbled through a life that at many times was completely absurd, but really it was just so unknown, untranslatable and uncanny (all in the Freudian way).

We have now gone one year from when we had help for Eliza to doing all of the work ourselves. There was no attempt to resolve an injury claim by the hospital, so we found ourselves in a legal engagement we were hoping to avoid (it's still happening).

Each day starts with the same caregiving routines for all three girls, with Violet having to eat her breakfasts alone. We're tired, very tired of a life 100 percent dedicated to this effort, and the shortfalls each child is currently experiencing, not to mention the lack of care for our own mental health.

As Gina and I approach our 11-year anniversary this weekend, it's easy to point out our endurance through a lifetime of losses and changes, and how we are constantly tired. 

But what may not be as noticeable is that we've learned to embrace change - the constant shifting of ground under our feet - so that this profound word/idea called "love" is always doing just that.

Embracing change is the reason our love is always growing for our children, for ourselves and for each other. So, in addition to these first 11 years, may there be at least a hundred more!

University of Michigan Mott's Trip Number Two

We now have another trip to Ann Arbor under our belts.

After the seven-hour-plus drive down last Sunday, we had two days of very busy appointments with Gwen and Eliza.

While we expected to schedule surgeries for Eliza's hip during this trip - based upon the news we had received last time we went - we're glad to report that her hip is unchanged.

Both girls passed each specialists with flying colors! They are all healthy, and some specialists even dropped the necessity to see the girls anytime in the near future, which is awesome news!


I think the environment here in the U.P. has been a good move for all of us, where emotional health translates to physical health for our children. The same cannot be said of our opportunity to spend an evening in Frankemuth for dinner, a place we'd never been to (and will probably never return).

Violet posing with "The King"

It's so kitschy that it's allure is irresistible: in a-I-know-I-would-hate-it-but-I wonder-why-people-always-go-there-kind-of-way.

The benefit of this Bavarian Wonderland is that it's one of the most accessible places I've been to in a long time (think target audience). Gwen loved the bathrooms so much that she used them every place we went, a first for her when traveling.

Only in America can a village/town/city/creepy-whatever become famous for fried chicken dinners, Christmas all of the time and water-slides and tourist traps amid an inbred kind of Germania.

The decor is not only faux German, but the design is rooted in 50's, covered by updates every decade, finally stopping somewhere in the early 80s.

Violet calls all purple flowers "violets"

Violet loved it, and asked everyone she met if princesses lived in this castle. Everyone was very nice, and it's definitely not a place for vegetarians to eat, which we knew going in but it was fun nonetheless.

The trip was a success, despite the near-eight-hour drives to and from Ann Arbor. That kind of good news is worth making the trip a thousand times more.

We finds woods with chairs wherever we roam.

Building fairy houses at the Nichol's Arboretum

Accessibility times two!

Day 301: How much we have grown

Three years ago, Eliza came home from the hospital the day before Easter and we captured the three sisters on a sunny porch.

 

It's amazing to see how much they have all grown in just three years.

Happy Easter from The House of Gort

Day 295: Looking forward

This past week Eliza received a loaner power chair from her physical therapist.

The loaner chair circulates across the entire Upper Peninsula so we've been waiting since last October, just after Eliza tested one at University of Michigan. We're very glad and fortunate for Eliza to have it!

At first, at the PT's office, Eliza was so proud that she couldn't contain her joy. She'd grab the joystick, move then smile and kick like crazy. Once she realized could spin around in circles, she was hooked!

After driving outside of the PT office and into the hallways of the medical center, Eliza really powered the chair around, and became very focused on the tasks at hand. She made us follow her up and down the hallway, occasionally stopping to laugh while also ensuring that we were keeping up.

Her PT says that's usually what happens for the first few days - kids just love to go around in circles! Eliza does, too! We now have the chair home for a trial period. Eliza continues to spin around in circles, in addition to learning how to navigate around the house.

It certainly helps that she's at that age where she likes to please those around her. However, Violet continues to be the person Eliza is so drawn to, wanting to participate in ways she couldn't before. The chair is helping to change the nature (and power) of their relationship.

 It's been so much fun to watch, even though it's very exhausting for Eliza to get her muscles all coordinated at the same time to go where she wants to. Perhaps most importantly, the chair is giving Eliza a higher self-esteem and joy of independence unlike anything we've seen. 

While this is just another step in creating more work for Gina and I, we're excited about how the power chair is helping Eliza and us look forward to her future. Go Eliza!

 

Day 284 : Looking Back

“Never look back unless you are planning to go that way." -Henry David Thoreau


This time three years ago, Eliza was still in the NICU. We were so focused on getting her home that we couldn't fathom what that meant.

Now we are focused on the every day since she lost her nursing care 284 days ago. We have glimpses of the future but what we've learned from looking back on the past is that the moment right now is most important.

Photo credit : Jessica Wolf

Officially Three Today: Tribute from Mama

Dear Eliza,

You are a beacon of light for our family. You brought us through the dark into this new place we call home. You are my little love. Happy 3rd Birthday! Here is a poem from Ellen Bass that I'd like to dedicate to you. Love, Mama

For My Daughter on Her Twenty-First Birthday
Ellen Bass

When they laid you in the crook
of my arms like a bouquet and I looked
into your eyes, dark bits of evening sky,
I thought, of course this is you,
like a person who has never seen the sea
can recognize it instantly.

They pulled you from me like a cork
and all the love flowed out. I adored you
with the squandering passion of spring
that shoots green from every pore.

You dug me out like a well. You lit
the deadwood of my heart. You pinned me
to the earth with the points of stars.

I was sure that kind of love would be
enough. I thought I was your mother.
How could I have known that over and over
you would crack the sky like lightning,
illuminating all my fears, my weaknesses, my sins.

Massive the burden this flesh
must learn to bear, like mules of love.

(Source: Mules of Love, Poems by Ellen Bass)

Happy Three Years to Eliza

Today we're celebrating (unofficially), Eliza's third birthday with a few friends and family.

It's amazing she's three already. Here's my latest article in the Grand Rapids Press celebrating Eliza.

Happy Birthday Eliza Bean!

GR Press article: Raising the sibling of a child with special needs?

It can be question many people struggle with as they raise children that includes a child with special needs.  I’m the parent of three girls. Violet, 4, is the middle child.
 
Her two sisters, Gwen, 10, and Eliza, 2 both have cerebral palsy. Gwen and Eliza are non-verbal, nonambulatory and require numerous caregiving responsibilities.
 
On occasion, the latter tests Violet’s patience, and she already understands the benefits of breathing exercises.
 
On the other hand, Violet has insights into her sisters only another sister can have. She can express their needs in an intuitive way that I thought was unique to my wife and me.
 
There’s a fine balance to keep in parenting Violet while also allowing her to instruct me.
 

It’s even more delicate as she begins to understand more about the world outside of her family environment.
 
For me, when I try to answer what’s right or the best way to raise Violet, I only come up with more questions.

• How do I help Violet avoid growing up completely isolated from other children? 
• What do I do if she becomes socially awkward? Can I prevent it? How do I help her if she does?
• I wonder if she’ll become embarrassed about her at-home situation?

The simple answer is I can only be parent to what arises. The more complicated answer is there’s probably not going to be “one right way” for siblings in Violet’s circumstances.
 
I have to let her develop in her own way, much like her two sisters, and tackle each challenge as it comes (or doesn’t come)
 
Since there’s no all-encompassing manual for parents like me, I do my best to learn from other parents.
 
What I’ve learned from others parents 
A mother of a child with cerebral palsy told me that she regretted not letting her younger son (without special needs) help more with the care of his brother.
 
She was fearful of not only the long-term responsibilities that it might create but also the inseparable bond that could jeopardize the other child.
 
For example, I knew another caregiver who had to send her child away because he was so dedicated to the care of his brother that he didn’t have a life outside of it.
 
As a result, I’ve promised myself that I would not mortgage Violet’s future on caring for her sisters.
 
But that doesn’t mean I don’t let her help.
 
Like most children (and people) Violet likes to be useful to her family and others.
 
Caregiving is very rewarding. I’ve seen children like Violet demonstrate this better than many adults do.
 
So what will I do if Violet is old enough to make the decision that she wants to help take care of her sisters – and help more frequently?  What is too much?
 
As her father, I mustn’t let her devote her life to caregiving but, at the same time, I must prepare myself for whatever she may choose with her life.

Isn’t that the responsibility of a parent anyway? I think it is.

Finally, another woman I talked with about this issue had a sister with cerebral palsy.
 
The woman became a nurse. She used what she learned about caregiving as a child and applied it to a setting away from her family.

She told me growing up was not much different than most of her other friends. Everyone knew her sister, accepted her and made her feel welcomed.

Maybe that’s why I feel fortunate that Violet is so young. 

She may not fully understand why her sisters are wheelchair users, why they don’t express themselves like she does, or that her life is all that different from her friends at school.

Violet, does, however, know that her sisters love her, and she loves them just as much.
 
Perhaps best of all, Violet is learning compassion, empathy and difference in a way that most kids don’t.

Maybe that’s the answer right there. Maybe, just maybe, she’ll teach others along the way.

Siblings of children with special needs: 2012 SportsKids of the Year

It's interesting how the timing of the world happens, or at the least how the timing of my learning happens.

I'm not sure if it's because I've been open to a particular subject or if the world just seems to be buzzing, and then my Facebook feed helps me find more stuff that I'm interested in...

Yesterday, I completed an article for A Dad's View about raising siblings of children special needs.

While in the article I alluded to some of the lessons in this video below, I'm humbled.  I'm humbled by Connor, who along with his brother, Cayden, were named SI 2012 SportsKids of the Year.

When I wrote my article, I had very little answers on the best way to raise Violet in her situation (having two sisters with cerebral palsy). In fact, the point of the article was that I really didn't have to have the answers right now and that Violet was parenting me along the way.

Last night, I watched this wonderful, touching video (which is very short, by the way). The answers are right there. I'm always continuously learning more about just how amazing children are.

Some of the powerful words and thoughts Connor conveys about his brother with cerebral palsy remind me once again that children are our best teachers.  Perhaps the folks in Washington D.C. should let them run our country for a few days!

Please watch this. It's beautiful.