The Voice from the Backseat

One voice, and the journey along the way

Weekly Photo Challenge: Scale

Crossing the George Washington Bridge one beautiful day I was focused on catching a photo of the bridge against the sky. What ended up striking me most after seeing the photo is how tiny the vehicles looked against the support structures, highlighting just how massive the bridge really is.

It was the first picture I thought of when I saw the theme for this week’s photo challenge, “Scale.”

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For more of this theme, check out https://dailypost.wordpress.com/dp_photo_challenge/scale/

 

Afternoon Coffee

I have coffee every afternoon (and morning, and sometimes evening…) but I love to have my afternoon coffee sitting outside on my porch. I especially miss that this time of the year. It’s a chance to decompress, look at my flowers, feel the fresh air on my skin, watch the birds at the feeders, and just be. This was an especially beautiful day last summer, breezy and warm-but-not-too-hot, my favorite balloon flowers blooming in the background… Small moments of quiet peace.

I have two benches out there, company is always welcome. ☕️

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More of this week’s challenge here: https://dailypost.wordpress.com/dp_photo_challenge/serenity/

Midnight Moon

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This week, the Daily Post challenges us to show you Nighttime!

 

I took this photo earlier this month the night of the Harvest Supermoon. I live on the side of a steep hill blocking the eastern sky, so wasn’t able to see it rise (though I’ve seen some really spectacular photos capturing that!)  I went outside shortly after midnight and was treated to this view. The clouds and halo effect around the moon were amazing! Photos simply could not do it justice but I tried. :)

I tried with flash and without, and found that without flash gave me the best reproduction of the red shades of the halo effect around the moon.

Blue

This week Cee’s Fun Foto Challenge tells us to show you the color Blue! Sky and water come to mind first.
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Ahhh the beach, a rare day to escape this summer with a friend, her son and one of my boys. I love how many shades of color I captured of the sky, water and sand.

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I caught this shot of the sky as the sun was setting a few weeks ago.

The timing was perfect. Looking to the east, the sky was deepening as you see here, and pivoting around in the same spot and looking to the west were clouds lit from below in shades of fire!

Amazing… and then in just a minute or two it was gone.

 

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Our new hydrangea bush… the flowers were pink when we bought them, and as the summer progressed after transplanting them, turned blue! This metamorphosis was fun to watch.

For more takes on Cee’s challenge, go here: http://ceenphotography.com/2014/09/23/cees-fun-foto-challenge-the-color-blue/

 

Sparkles and PICC lines

There’s been so much to say, but where to start? How to even make it readable, worthy to share? I’ve worried it would just turn into one big long spew of pain that would leave people clicking away from the page as fast as they arrived. And yet I need to share, because I know so many others out there travel this journey as well.

My sidekick, my Empress, her voice has grown a little dimmer these days in a way that is both hard and terrifying to describe. I’ve enjoyed punctuating my blog over the last few years with certain tidbits that bring out the spirit of who she is, this amazing child of mine.

Like this, My Empress, in all her glory, when we went our for a bit of very much deserved Girl Time before her first day of school. The agenda: a haircut and Sparkly Clothes. And, as it turned out, Sparkly Accessories at the infamous Claire’s (I remember going there in the 80s, and it hasn’t changed a bit.)

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But how do I wrap my head, my heart, around the disconnect, the reality of just how much has changed the last few years? This photo was taken within a few weeks of the first. Not so Sparkly, but just as real, inpatient after her 3rd bronchoscopy and 7th PICC line placement.

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The medical needs in themselves aren’t new. Yes, they are discouraging, yes they make me sad, but we are used to them. The real difficulty lies in that those ‘Epic’ moments come so much less often than they used to, it’s getting so much harder to find these opportunities where she looks (and more importantly, feels) healthy and strong. It’s so hard to sustain this fight sometimes, and that scares me as it is only just beginning. She spent the summer on her CF sick plan and when that didn’t work, we capped off the month of August with the admission pictured above to start 21 days of IV antibiotics.

Appointments in recent weeks with a few other specialists highlighted ongoing concerns and the plans for dealing with them in coming years. Add to the list.
She has an inpatient stay in a few weeks at one of the best epilepsy centers in the country for prolonged video EEG monitoring, PET scan, SPECT scan, and high-resolution MRI to see if we can better get to the bottom of her recent cognitive decline and other issues.
It’s just all so much to juggle… for both of us. If I feel pushed beyond my limits, how much can one child take on?

Clichés telling me to *just stay positive* don’t work anymore in the face of such overwhelming changes, when I can see the impact every day, when I can see her slipping no matter what we do. Pat words ring hollow among the stark realities faced by a child who has little comprehension of why, due to her other disabilities.

As always, I turn to my flowers for solace, for peace, for healing. They were glorious this year, and they do bring me peace.

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But it is also painful when I can share in bringing such beauty from the earth, and yet cannot preserve the beauty in my child’s life, who holds my very heart in her hands.

March of the Lilies

I love my lilies. The first one opens in mid-June and the last of the stargazers finished up yesterday. Seven gorgeous weeks, a run of 10 different colors and varieties that I wait for and look forward to with enormous anticipation every year.

This past winter seemed especially long when it came to waiting, what with that whole Polar Vortex thing that gripped so much of the country for so long. But as I watch my gardens bloom outside, I’ve also been following my gardens of past years, through a fun app called Timehop. See, I’ve been taking photos of my flowers like they were my newborn babies for years now… and Timehop is handily showing them off for me every day going back quite a few years. And I have noticed something. There have been hurricanes, blizzards, scorching hot summers, polar vortex style deep freezes… and most of my plants come up year in, year out exactly when they should, within days of each other every year. Some years we do better than others, but the constancy there and resilience to change is really very powerful to me. There is a lot of delicacy in things that grow, but the dependability and force to go on is strong and comforting.

There are bumps…
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A thunderstorm took this lily out the day it bloomed.

But so, so much more beauty…

Cooper’s Big Smile

Cee’s photo challenge this week is one I looked forward to from the moment I saw it: Floral Macro. I love my flowers and missed them desperately during this past endless winter. They are my sanity (what’s left of it!) and therapy and I love to just look at them and take care of them and silently appreciate the beauty.

This post will feature the growth of one flower, from bud to maturity. This bed of tulips was absolutely precious to me. I planted them in honor of a very special little boy who lost his battle with mitochondrial disease last fall at the young age of 6. I put in the bulbs the day he was laid to rest- I couldn’t be there for his family but wanted a way to remember him and the mark he left on this world and all those who loved him. When I looked for what I wanted to plant, the package of tulips nearly jumped into my cart: “Big Smile.” Well, that was that. I had to have them. The color of the sun… and his grin could light up the room.

Through the endless winter, they waited. With spring, and new growth finally emerging around us, they poked through and started to grow. And along with it came a beautiful surprise. Instead of just the sunshine yellow we expected, a glorious bicolor yellow and orange that looked lit from within, just like his smile. Those beautiful flowers brought a smile to my heart every day, a reminder of what’s good and precious, a little part of what we love of those taken too soon.

For you, Cooper.

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For more beauty in nature, please look here:

http://ceenphotography.com/2014/06/03/cees-fun-foto-challenge-floral-macros/

Can we have a fresh start, please?

It’s been a while, hasn’t it? I can sum up the last 6 months fairly easily…

Relentless

Treatments, treatments, and more treatments. Cystic fibrosis is relentless.

Add several thousand pills, dozens of trips to the hospital for doctor’s appointments/tests/ER visits and several admissions, and there you have it. The months kinda turned into one big disheartening blur after a while.

Warmth and spring felt like it would never come.

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And then finally, finally, finally…!!! Green, and blossoms, and all that is good and wonderful and healing and restoring about the turn in seasons finally came.

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We are more than ready to move forward with better health and to be restored with the changing of the season.

 

 

 

 

 

 

 

 

 

 

 

No More Epilepsy

November is for Epilepsy

This is why there should be no more epilepsy, by the Empress.

So I don’t have my Topamax and Gabapentin.

I don’t like them.

It scares me to fall down.

I don’t like my head to hurt.

So no one could have seizures.

A day late, but once I saw this one I couldn’t let It pass! For more of yesterday’s prompt, look here:http://dailypost.wordpress.com/2013/11/03/daily-prompt-health/

I have much to say that can follow this up, but today, the words of my Empress will stand alone. <3

Purple

The Empress discovered the new fall mums one day last week and immediately had to have a picture.

The Empress discovered the new fall mums one day last week and immediately had to have a picture.

Our photo challenge is simple and interesting this week.

The question “what’s your favorite color?” has always been impossible for me to answer. I honestly do not have one. This was not an acceptable answer to the kids when they were little, and they decided for me that my favorite color was red. I like red and I’ll humor them, but I’ll tell you right now, my favorite color is not red.

The topic this week is a bit different from that classic question, and one I can relate to much better. Find a picture featuring a color that reveals something important about you, whether it be symbolic, emotional or otherwise. In looking through pics I have taken recently this one jumped out at me.

Purple is the color of many of my favorite flowers, and gardening is so important to me, a vital part of my being.

Purple is the color of both epilepsy and cystic fibrosis awareness- causes important to me and conditions that by necessity take over so much of my time, resources and attention. It’s probably the most defining color of any for me right now.

More for our weekly photo challenge here:
http://dailypost.wordpress.com/2013/10/18/hue-photo-challenge/

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