January thru July

& so six months went by. We said goodbye to cold winter days, spring rain and most summer nights. Life changed and we struggled alone yet together, closer than ever. Distance separated our touch but our love grew so much. The look of daze left my face as I began to grow. & I grew stronger. We gained strength on our weakest days. At our lowest point when we dug down deep to find the strength to face the day we were reminded to pray. And our souls grew stronger; separate and alone yet somehow together. In our darkest storms we defeated the weather. When I lost my shine, you shined. When you lose your light, I'll shine mine. Now it's time to shine together.

 

Deployment 01.12-07.12

 

Irony

While driving to run an errand today I was meditating and praying/ just hanging out with my thoughts. There is an amazing radio station here called K-Love. Some of my thoughts were provoked by worship songs. Some by passing thoughts. It was just an overall amazing car ride. Learning new ways to be peaceful, being thankful for what I've got in the form of family and trials, among other things.

So I decided to go a different way than I usually do. I even wondered why i haven't thought about going this way other times. (Hello Holy Ghost guiding my ways.)

As I drove, I saw something in the road ahead of me in my lane. I got closer and realized it was an old man headed into on coming traffic towards me. I changed lanes to avoid hitting him. While in disbelief I actually questioned if I should go get this man out of the middle of the road!? I mean...he could be a flesh eating zombie. Perhaps it is heading up the Florida coast since it happened in Miami a few weeks back. I went against my post apocalyptic judgement and did a u-turn to save the day.

So I rush up behind this, what I assumed to be, homeless old man in a wheel chair. I push him out of oncoming traffic and start giving his old behind the 3rd degree. "Uhhhh, what are you doing in the middle of the road!? WHY are you in the middle of the road?" at this time I'm feeling the adrenaline rush. I just possibly saved a life, I could be in the presence of a human cannibalist, crap...now what am i going to do with this guy...all thoughts running through my head.

So he thanks me. I ask him where he's headed and he tells me he is headed to an AA meeting. Surprising?

I get some details...he's running 2 hours behind and I apologize as I bore the bad news of his tardiness. Asked him where he lived and he told me a road. So I'd heard of the road but it didn't click in my head. I told him he should probably start heading home since he missed his meeting and head back to my car.

I sit there feeling like I can't just leave this guy here. So I watch him struggling to do anything. I decided to ask him some more questions: is there someone I cAn call to come get you? Who do you I've with? When he answered that question it clicked in my head. He lives on the exact road I am heading to. so I battle with myself some more.

"No!! Shelley...he could be a murderer or on drugs or try to steal my car or my money." I just didn't have those feelings about him though. So I ask, "if I drive you home, you're not going to murder me, are you?" he snickered and said, "why would I do that!?" I said well, "you WERE in the middle of the road in oncoming traffic, I at least had to ask."

In the car, I ask him why he's in a wheel chair. He tells me about his pelvis being broken among other bones. Then he says, sounding somewhat angry, "yea! This lady hit me with her car?!" hahaha! Me, "umm that doesn't surprise me." he laughed and said, "I like you!" and then we made out and lived happily ever after. JUST KIDDING.

I dropped him off at this very unsupervised "retirement home" where he lived and the other residents out front thanked me and told me he just "takes off sometimes."

So then I had this amazing story to tell and FIVE, count them, ONE, TWO, THREE, FOUR, FIVE people wouldnt answer their phone. Those are the moments I realize I'm supposed to think about the situation instead of immediately talking about it.

Anyway...my car now wreaks of urine but I possibly saved a life.

Also: I ALWAYS travel with a stroller but didn't have it today and I was able to fit his wheelchair in the back, too. So many little things had to happen for this to all fall together.

I laughed out loud the majority of my car ride home...seriously, God!? I am super thankful for that experience in its entirety.

The end.

525 days a memoir

 

525 days, a memoir of the beginning Carli's life.

 

525 days ago was the day Carli graced the world with her presence.

She was beautiful, tiny, whole.

She slept a lot. And she ate.

Mother's Day came 19 days later.

I sat in a cold dark room at 3am as my sweet baby got her first MRI

Why is she blue? Why does she stop breathing?

The answers, nobody knew.

Guesses were our answers: she's so young and she has a cold..

"New babies are lazy and just stop breathing when they have a snotty nose."

3 days later we had her home again.

Who knew then that it was all just about to begin?

A watchful eye I certainly did keep.

I'd stare at that baby while she'd sleep.

Her pretty pink tone then turned to blue.

I called my husband who was on duty.

He came right home, to the hospital we rushed.

More spinal taps, scans and needle pokes.

She stopped breathing while they gave her an iv.

Still no answers...just wait and see.

Pulmonologists, neurologists, general peds we would meet.

No answers, just educated guesses.

I watched my sweet baby turn blue one last time...

The monitor showed her blood oxygen level dropped to 29.

I couldn't wake her, she wouldn't respond.

Fear became a feeling that was suddenly quite fond.

A few days went by...

We left the hospital trained in CPR with Carli's new apnea monitor on.

4 weeks went by and she got a fever.

Oh no.. Not again, not another spinal tap needle.

Against recommendations I refused to take her in again.

Lets wait and see...maybe she'll be fine.

A whole day went by and then it spiked high.

To the ER we went...in hopes it wasn't much.

Refusal of spinal tap, all others had been clear.

I couldn't let them poke her again, I'd developed spinal tap fears.

All other tests were clear...they highly recommended it.

Craig and I agreed, then we watched her scream

As they held her down again and poked her back with that long needle.

Curled up in a ball with the needle standing tall..her fluid dripped into a vial.

This time around she had meningitis.

3 more days in the hospital...this place now seems like a 2nd home.

Oh but there are things to be thankful for...just look around.

Here comes a clown..

Who just left the room of a kid who has cancer.

Those thoughts, at one point, got me by.

Then I started reading the Bible and found a spiritual high.

Thank you Jesus for this sweet baby girl.

Who just came into our lives and mixed up our world.

I know it could be worse. And how much You must think of me.

You gave us this baby to take care of with special needs.

6 months came up and she couldn't sit up.

Her head still wobbled and she didn't grasp for much.

She couldn't pull to standing...I had that Mommy hunch.

She wasn't where she needed to be.

At 7 months we had her apnea monitor discharged.

No "true apneas"...she's good to go...but wait...

When you pull her arms, her head lags behind.

The things Mommy noticed then became the pulmonologists concern.

A trip to the pediatrician is where we went next...

She got her first set of shots & a diagnosis of low muscle tone.

2 weeks later she wasn't acting quite right.

She stared strangely and her head began to drop.

Her stomach started twitching, her head turned all the way to one side.

Her eyes deviated, her hand began twitching.

She cried out in moans and she'd seem to come to.

Then she'd turn her head again and she just wasn't there.

"Mommy is here, Carli, I'll never leave your side."

I said it over and over and over again in that ambulance ride.

No more CT scans, she's already had 2

We got no real answers...what could we do?

Follow up with neurology...again "wait and see."

If she has another one catch it on camera...

We'll start her on medicine if it happens again.

A couple weeks later I saw it in her eyes...

And then she started that terrible no good cry.

She moaned out as if she was in fear.

Nothing could catch the attention of my sweet 8 month old.

I called 911 while I captured her seizure on video.

No answers. Nothing. I slowly became more filled with fear.

Could it be this or that?

What kind of future are we looking at?

Wait and see...

Wait and see...

Take her to physical therapy...

She's still behind.

Occupational therapy was also recommended..

It started at 10 months old.

She couldn't grasp things, she didn't reach..

I could slap her arm and she wouldn't turn to look at me.

Through out this all, while I had moments of fear...

I dropped down in prayer and kept my Bible near.

Remained thankful for what I do have...knowing things could be worse.

One visit with her occupational therapist opened her eyes.

She started looking beyond herself...she noticed the walls.

She grabbed things. She made messes!!!!!

Thank you, Jesus!!

We started out at a 2-4 month level and progressed rather quickly.

3 months later she was at a 9-10 month old level.

Who knew a baby holding a cup could be such a beautiful sight?

Never in my life have I cried so many happy tears.

Watching her learn and grow started to diminish my fears.

She still had seizures...

Low muscle tone.

Slow sensory processing.

525 days later, I still have to put her arms in her sleeves.

She has just started to get food to her mouth for a snack.

I purée her food because she doesn't know how to chew.

Still no answers..just waiting to see.

17 months old now, 525 days old.

I'm starting to feel selfish...this stuff gets old.

No answers. No walking. No crawling. Little talking.

But she LAUGHS. She constantly smiles.

She even pitches fits...so I know she's "in there."

I wonder what the future has in store...

I look forward to the day she can walk through a door.

I can't wait to not dress her in new born baby mode.

The therapies, the work...it's a heavy load.

The only definite answer we have...

"It's a long road ahead."

Sometimes I lie when people ask me her age.

I don't like the looks I get when I answer that question.

Although I feel sad and sometimes get angry inside.

I wouldn't trade her for the world.

Just sitting here...waiting and seeing.

Seeing her do things that mean not much to others...

Don't take your baby holding their cup, putting their own arms in their sleeves,

Sitting up, crawling, feeding themselves, talking or pooping on their own for granted.

This by far is the most difficult task I've been handed.

Some Mom's never see their children do these things on their own.

I can't help but wonder what she'll be like when she's grown.

Will she be able to live on her own?

I believe so.

Until I know for sure...I'll be here...waiting to see.

And even though somedays I decide that this sucks...

I can't help but believe it is me that she needs.

& She is what I need to better learn and grow.

525 days later...I still love her and hold her and squeeze her tight.

Her smiles and her laughs...her learning her grasps...it's worth the fight.

 

 

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