A House Divided

Yesterday's post churned up some thoughts in my mind that I like to keep buried.  It is always better to bury the stinging parts of this special journey, because if I didn't, they could overtake the beauty of it.

In my post about our train excursion, I mentioned the dialogue that each of us had during the ride which was, "There is NO WAY we could have done this with a wheelchair!", or "Bridger would have hated this!"

Absolutely true.  It was with some sting that I thought about that as I looked out the window of our train car.  There is so much of the world that is inaccessible or not possible for us to enjoy as a complete family.  I am learning how to give the rest of my children those opportunities and experiences without the accompanying guilt that Bridger is not a part of our "family time".

I have had mothers who are decades further along in this journey coach me on such things.  They counsel me to take some time and enjoy experiences as a family without the extra weight that comes with caring for and managing the challenges of a child with special needs.  They try to reassure me that it is the only way to survive and maintain health for all in the land of Special.

While this wisdom can vary greatly depending on the specific demands and needs of the disability of the child, it is absolutely valid and wise counsel for us.  But while it may be healthy for us, it never feels right.

Many don't see that we live most of our life as a House Divided.

Yesterday afternoon was our neighborhood block party.  For a variety of reasons, including the accompanying heat and seizures Bridger could experience, or the fact that he wants to be a part of the pack of children running around and can't be and gets frustrated and screams, we have to "divide and conquer".  Alan took the rest of the children to enjoy the neighborhood party while I entertained Bridger at home.  As I played with him I could see the party happenings outside the window.  I was glad my children and Alan were enjoying the festivities, the food and company of neighbors, but it was accompanied by the sting of division.

Yesterday morning was Sadie's field hockey tournament.  I was out there cheering her on.  She played great, her team won the championship!  I took her out for ice cream to celebrate.  She was beaming.  It was accompanied by the sting that her dad couldn't share in her proud moment as well.  He was home taking care of Bridger who can't attend the games because, again, of the seizure inducing heat and he also hates clapping and will go into screaming and inconsolable tantrums with the clapping and loud cheering and yelling at games.  Alan and I have never attended a game together.

The week prior was a church potluck.  Again, for many reasons, a no-can-do for Bridger.  I stayed at home with him while the rest of the family enjoyed the church activity.

I take the kids to see the fireworks, while Alan stays home with Bridger.  Alan attends the school event, while I stay home with Bridger.  I attend the piano recital, while Alan stays home with Bridger, Alan takes the kids trick-or-treating while I stay home with Bridger, I take the kids to a movie, while Alan stays home with Bridger. . .

And so the pattern goes day after day.  Drawing straws to see who attends the activities with the other children and who stays home and cares for Bridger.

We have had to focus less on "family time" and simply put our emphasis and energy on "quality time".  We make it work but that doesn't take away the sting that comes with this subsequent side effect in Life with a Side of Special.

We are a House Divided.

Riding the Rails

Last weekend we took a break - a break from sports, chores, and other usual Saturday happenings to enjoy some family time.

That is, some family time minus Bridger.  Which always hurts a bit.  I would love for every fun thing we do to be enjoyed by all of us together, but that is just not possible.  Luckily, Bridger was signed up for his wonderful weekend of respite at Jill's House lodge (where he would much rather be) and Alan was excited that the timing of that respite weekend perfectly aligned itself with a very non-accessible activity he had been dreaming of.

Alan is a train buff.  We have a chunk of our basement real estate taken up by his model train layout that the kids love to run with him, he reads Model Railroader, he can spew off any fact related to locomotives.  Total. Train. Nut.

So, of course, he knew about the restoration of the Norfolk and Western 611 "Spirit of Norfolk" steam engine and the subsequent excursions the locomotive was offering along certain stops of the eastern seaboard. He couldn't resist buying tickets for a fun family train ride.  Our excursion was the 611 engine's inaugural run.

We headed out to the Manassas train yard and Alan educated the kids about all of the components and history of that specific engine and rail company and they were soon just as excited as he was.

We had the kids pose in front of the engine for no less than 3 dozen shots before we boarded, but the picture below is my favorite shot of the day.  The kids were standing with their backs to the engine which was only a few feet behind them, when the pressure had built up in the boiler and the valve had to release the steam.  The subsequent sound was extremely loud and unexpected.  "Letting Off Steam" is an expression that is much more mild than its fierce roots.  Every muscle fiber in Eliza's little body nearly hit the sky and she bolted off of those train tracks with the others tripping over themselves to do the same.  When Lance finally caught his breath to speak (and when Alan and I finally could contain our hysterical laughter to listen) Lance said he thought the train was going to take off with him standing only a few feet in front of its path.

Aboard the train we enjoyed quiet conversation, card games, beautiful views of the Virginia countryside and, the kids favorite part, the Snack Car!

The other "crack me up" moments of the day were when we ventured from car to car on the train and the girls had to cross over the wiggly train joints connecting the cars.  They had mild heart attacks as they would take a deep breath and execute their brave leap over each joint of the connected train car.

The world of train nuts is bigger than I knew.  Along the entire 50+ miles of the ride through the Virginia countryside were hundreds and hundreds of people lined up along the roads, sitting in chairs in pastures in the middle of no where, tailgating in the parking lots of country churches and clustered around every road and rail intersection taking pictures and videos of the historic event.  A helicopter followed us from above filming the entire trek.

I love the friendly attitude with trains.  There is an unspoken rule that when a train passes that you always wave at the strangers aboard.  I imagine the origins of that practice and the energy and excitement that surrounded train stations.  Trains meant journeys and adventures for embarking passengers and the bystanders couldn't help but share in that excitement and wish the travelers well with a friendly wave. That shared excitement continues today.   Sadie said she felt like a celebrity with all of those people waving at her along the excursion.

The entire time each one of us kept saying, "There is NO WAY we could have done this with a wheelchair!", or "Bridger would have hated this!"  Not forcing the impossible  for Bridger consequently makes relaxation possible for the rest of us.

The children savored having an "inaccessible" experience, Alan savored being part of railway nostalgia, and I savored a quiet nap on a gently rocking train car on its way to nowhere.

Survival of the Fittest

Opened the fridge and laughed to see this tonight . . . 

It is her prized Cafe Rio left overs.

Apparently, the 10 year old has learned at a young age that when you live in a large family you have to mark you territory, guard what is yours and hide what you can't otherwise protect.

It is the survival of the fittest around here.

Love - Love

Love.

Not the emotion.

The scoring kind.

I love it.

I have received many a stress lecture from my doctors and others that are aware of my daily responsibilities caring for a child with special needs.

"Take time for yourself!"

"Find a hobby!"

"Do some yoga!"

blah blah blah.

I have heard lots of recommendations to de-stress.  One particular doctor, knowing the specifics of what my life involves, knew better than to suggest any alternative -- knowing that every possible suggestion would be impractical, if not impossible.  She just sympathetically told me to "hang in there".

When you are faced with this weight for decades to come - if not for the rest of your life, just enduring, pushing through and "hanging in there" are not going to cut it if one hopes to survive.

You have to find an outlet.

Tennis is mine.

Today I managed to push all my doctor's appointments and other to-do's off my afternoon and step out from behind the wheelchair and onto the court to play for 4 hours straight today.

It felt absolutely luxurious.

I can't move my legs right now.

But I love it.

A Peripheral View

Missed the kindergarten bus, again.  

Racing to get Eliza to the front doors of the school to throw her out on the sidewalk and catch the tail end of her little class walking in before the door closes behind the last child and I will have to then walk her into the school in my barefeet and sign her in as tardy, again.

That is my story every day at 11:34 for the past 2 months, and will be my story for the next 10 days.

I share that story with a dozen other kindergarten moms that I see driving that mad dash to catch the fading kindergarten lineup every afternoon.

As I was making the drive the other day, one eye staring at the clock in an effort to stop it from advancing one more minute, the other eye on the road and my third eye in my rear view mirror barking instructions at Eliza to empty her papers out of her folder so it looks like I am actually checking her backpack every day, I notice a lady knelt down in her lawn petting her large dog laying in the grass.

A dog and its owner, outside, beautiful sunny day.  That is how it might look to the dozens of minivans passing by that might have caught a glimpse of the house on the corner.

It caught my eye, but not just my periphery.  It caught my full attention.

I successfully tossed Eliza with a kiss into the pile of little people with oversized backpacks just in the nick of time.

I drove back to the house on the corner and pulled up to the curb.

I hollered out a "Hello," and the homeowner walked over closer my car.

"I just saw you and thought I could stop and help in some way," I said.

She came up to my window and started crying.

"Well, I don't know, I just was taking my dog out to go to the bathroom and then she laid down and won't get up," she said in between tears, "maybe you can pull around?"

I pulled around to her driveway.

I introduced myself and told her that I am used to lifting heavy things (I knew that Bridger-built skill could come in handy some day:) and suggested that I could help her lift her dog back into the house.

She introduced herself and told me about her dog, Maggie -- that she was very old and that when she brought her outside she just lay down in the grass and just wouldn't respond any more.  She thought that this might be her time to go so she knelt there in the grass and rubbed her body waiting for her to take her last breath.  She had me joining in her tears by this point.

We walk over to Maggie laying motionless in the grass with the plan to together lift her into her home so that she may die there inside where her owner could tend to her.

As I approached Maggie, the sight and sound of a stranger made her lift her old but curious head. Her tail starting thumping a bit and Maggie became totally responsive, her breathing picked up and she even tried to move her body to greet me. The owner started laughing through her tears.  All Maggie needed was a stranger.  The owner hugged me and I helped her get Maggie to her feet and she limbered along with the owner holding the handles of her support strap and get Maggie back into the comfort of her home.

I don't know what happened to Maggie after that, if she laid down into her dog bed that night and took her last breath, or if she is still being lovingly cared for by her owner.

What I do know is how grateful I am that I had eyes to see that as I drove by.

I didn't know how to help or what to do.  But, as I have come to appreciate, just being present in someone else's challenging time is often all that is needed.

How many times do I pass by someone in need and don't see?  I think the blinders of "busyness" that we wear are quite effective in blocking our periphery and keeping us focused.  But can focus be misguided tunnel vision?

With Bridger's visual impairment I have grown to understand and appreciate vision more.  For the first few years he couldn't even see me if I was more than a couple feet away.  He learned to use his other senses in tandem with his vision, and when he did he could then make out what was right before him. Because of the underdeveloped muscles in his eyes, his most acute visual field was not what was right in front of him either.  He saw best in his periphery.

Periphery and vision made more clear by other senses.  

I hope I can learn to see like that more often.

Open Wide

You know what really makes me nauseous?

This. . .

Ty loves to lick Bridger on the face and Bridger loves to open his mouth when Ty does.

ew.

Makes me throw up in my mouth a little every time it happens.

If I tell Bridger to close his mouth it only makes him laugh and open it wider.

I just have to turn the other way and try to convince myself to believe the myth that a dog's mouth is cleaner than a human's.

I suppose there are far greater threats to Bridger's health than that.

But,

just ew.