Sacrifice & Love

I spoke (wrote) too soon.

That first six days of post-surgery peace were a miracle.

But no sooner had I written about it, than G's internal switch flipped to "fight."  He literally turned to me and said, "I gonna fight you," and we were back to dancing - trying to help him maintain his peace.

At one point, he was thrashing out with everything he had.  Normally, I would sit and hold him on my lap and help him ride it out.  Instead, I was trying to keep him facedown, for the sake of his eye. 

Picture me lying on my back, hugging him to my chest, while he's rampaging.  He has no comprehension that with every "fight" he is putting himself at greater & greater risk of losing his eye.  I, of course, have full comprehension, but I can.not.stop.him. 

I can try as hard as possible to communicate the risk to him.  I can stretch in every way to create an environment that sets him up for success.  As he succumbs to meltdown, I can hold him.  I can choose to hug him through every blow so that he recovers with the least damage possible.

I can try to do everything in my power to protect him.  But I cannot stop him from hurting himself.

I try not to post the ugly on our blog.  Everyone - all of us - have ugly that we choose & experience.  This ugly is not who G is.  It's just what he's having to get through now, as any of us have personal struggles to get through.

However, G is providing me with such a profound life lesson, that I feel I have to share it.  I want you to learn with me.

As I mother G through this time, I cannot escape thinking about Jesus.

When he lived on earth, Jesus considered a path that would cause him great pain, a path that may have appeared impossible.

He weighed it against his love for us.

He chose to step into it.

Without a single complaint.

He poured out a gift of love.

Living a patient life, teaching, providing example after example.

Sacrificing, even accepting death on a cross.

Because I didn't get it.  I don't get it.  Time & time again, I make wrong choices.  I do what I should not do.  I fight to do the very things that are condemning me.

And, in spite of all that, Jesus loves me fully & completely.  He sacrificed everything so that I could have life... a life I could not attain on my own.

As I would do anything for my son, as best I can, even as he fights against himself & against me... Jesus did everything for me.  Perfectly.  He saved me. 

He offers this free gift to everyone who is not at peace, to everyone who wants it.

I'm learning about sacrifice.  About love.

I'm grateful for that.

Surviving Eye Drops

Since I've already confessed that we're doing nonstop t.v. viewing....

Perhaps you recall the eye drop battles that we used to have?


No more.


Mr. Compliance is in the house.


What has brought about this change, you ask?


Sugar.

G gets one Mike & Ike for every successful eye drop.


Over a dozen candies each day.


Breakfast time, bedtime, all the time.


Sugar.


Whatever it takes, people.

He's Doing It!

So, about this "surgery recovery" thing.

You know, the "keep your maniac 5-year-old calm & staring at the floor" thing.

I would NEVER have believed that we could be doing it.

But - miraculously - it's happening.

I'm not a huge fan of t.v.  In the almost 2 years that G has been home, we've not watched a single t.v. show or movie at home.  For us, t.v. didn't seem like the best use of our time.

So, we've been to the library, and have looked down while reading 100s of books.  100s.

We have looked down while playing play-doh

...and while playing in a bin full of rice

 

... and while playing with baby shampoo goop

... and while creating fabulously disgusting concoctions

 

... and while watching as many movies as humanly possible.

Yes, movies have taken over our lives. 

We used Joseph's laptop while he was home. 

Now we're using Aunt Kirsti's DVD player. 

And we are using it all. day. long.

Hooray for movies.

Whatever it takes. 

We are looking down.

Please continue to pray for us.



Surgery Update

Surgery lasted more than 5 hours.

G's surgeon said G had a lot of scarring in the eye, which she "cleaned up."  She tightened the scleral buckle that was put in last month.  She re-attached his retina, and she put down more lasers (to help it stay down).

Now begins the hard part... "positioning."

It will be critical for G to remain facing the floor at all times for the next 10 days (he'll do the positioning for longer than 10 days, but that is his critical window).  I'm going to try him sleeping with me tonight so that the night-time positioning checks will be easier on me.  At least, that's the theory.  We'll see if I get any sleep with that kicking monster in my bed.

I'm off to try for sleep.  We just got home, and we need to leave for our check-up appointment at 6:30am.

Thanks for all the support!

Meals?

G's surgery has been scheduled for next week.  Hooray.

If anyone wanted to help us by bringing a meal some time in the next couple of weeks, my friend is going to coordinate a schedule.  If you might be interested, please email her at mealhelpers@gmail.com.  Thank you, Heidi

Career Preparation

What would cause a child to push a plastic handle onto his head?

"Mama!  I'm a ply-ot!"

When he's a pilot.  Of course.

Flux

Still waiting for a surgery date.

Still scrambling daily - hourly - for babysitters.

As G's life continues to be in flux, he continues to ... react.

His ... reaction ... caused me to miss more work yesterday.  I'm officially in the world of unpaid time off.

But how about a spot of sunshine from the weekend?

Yes, that's G.  Eating guacamole with a fork.  Proof that flux does include good times too.

Preparing

I've had a revelation!

G will be having the surgery but I AM THE PATIENT TOO.

With his previous surgeries, I determined that everything should be fine.  He would be recovering and I would be caring for him.

Not how it works.

He recovers (relaxes) when I am fully present with him.  If I try to take a phone call, he becomes agitated.  When I make a meal, he vies for attention.  I recognize that this is not how it should be, but it is our current reality.

When we get this next surgery scheduled, I will be seeking help.
  - Meals
  - Errands
  - Helpers (people who will care for me so I can care for G)

Because I am the patient.



In other news, I am STILL striving to get post-surgery medication to help G stay calm.  I feel like I've chased down 1,000 leads.  There's been no success... yet.

Benadryl Is Not Our Friend

I spent the weekend with a child who looked like G, but clearly WAS. NOT. G.

Not fun.

Hoping the doctors come up with a feasible sedation option.

The Eye: Where We've Been

I want to share more about what’s been going on with G’s retinal detachment. I’m going to aim for a 3-part series, starting with a look back.

Last month, G’s retina detached and he went through scleral buckle surgery. After that, a patient must stay calm and still so that the eye will heal.

I’ve shared some funny tidbits about trying to keep G still… but it hasn’t been funny.

The longer he’s been reined in, the more overloaded he’s become.

Do you remember the behaviors we used to experience… the ones that led to him being “invited” to leave his day care… those behaviors are back… and worse. He’s older, stronger, and wiser. Now he REALLY knows how to rage.

The thing is, it’s not a temper tantrum. It’s not a choice he’s making. He can’t be reasoned out of it.

He gets to a place where he can no longer employ logic. I watch him click into his own kind of “fight or flight” mode, and he’s off.

Not helpful when the mandate is “calm and still.”

Three weeks post-surgery, G’s retina is still detached.

G’s doctor explained our next steps. More surgery. Remove the gel from his eye (victrectomy) and insert a gas bubble (pneumatic retinopexy) under general anesthesia. The gas bubble stays in the eye and pushes the retina back into position so that it can heal (reattach to the back of the eye).

It can be a highly successful surgery…

     If the patient stays calm and still…

          For 16-21 hours per day…

               For 1-3 weeks…

                    WHILE “POSITIONED” FACING THE FLOOR

Because – you know – I was so successful at keeping him calm and still that someone thought we needed a bigger challenge.

I am not feeling at all good about our likelihood of success.

I’d say that I’m 99.5% sure we cannot possibly achieve this goal.

I explained this to G’s doctor, who simply said “I’m not willing to give up on his eye yet.”

Translation: “You try this surgery/recovery OR you accept blindness.”

Yesterday we met with G’s fabulous pediatrician to discuss options for sedation. Today we’ll begin a trial with different doses of Benadryl, hoping G is sedated & not stimulated by it. The pediatrician is going to research other possible options for us.

Finally. You are caught up on Where We’ve Been. I have the next parts of this series written out – but only in my head. Hopefully I’ll have a chance soon to type it out.

Thanks for caring!

Saturday: When G Became a Sausage

It is HARD to keep this boy still.

Let's list his favorite activities:
- Riding his bikes
- Running
- Jumping
- Climbing (Specifically, climbing over the back of the couch. Makes me crazy.)
- Playing with his cars while running, jumping, and climbing

And - which of those activities is he allowed to do now, while his retina is detached?

Exactly.

I took this photo to show you what we did on Saturday.

That is, a LOT of reading and a LOT of watching movies.

Also a LOT LOT LOT of me yelling "Slow down!  No running!  Calm & still, calm & still!"

We got to the end of the last movie.  G gave a long sigh and declared, "I'm a sausage."

"What, Honey?"

"I'm a sausage."

I think about 101 Dalmatians.  Threats of sausage?  I wonder: is he hungry?  I do not understand.

"I'm sorry, G.  I did not understand.  What did you say?"

"I so tired Mama.  I'm a sausage."

"I'm exhausted too, Baby.  Me too."