Saturday, May 15, 2021

To Lyla With Love


Ten years ago they tried to cross the ocean to adopt her, but they were turned away.



She was too sick. Too fragile. She was expected to die.

So they adopted another. And then another.

But in a crazy, God-story turn of events, they discovered that she had survived.

So when the way opened they ran.

To get a little one who had everything going against her except she had a determined desire to live.

And she lived.

Though her heart was fragile.

Though she suffered and struggled to breath so many times.

She lived.

Though doctors shook their heads and said no way.

Though sickness took her down over and over.

Though breathing hurt.

She lived.

She tore through life in her sassy, bossy way.

She was one of a kind. 

So loved by every single person who met her.

One of a kind was Lyla.

Thrown away at birth. Deemed unadoptable. Of little value.

She had Down Syndrome. Physical deformities. Heart defects.

Tossed aside to lay out her days in a crib.

But she fought. She refused to die when death knocked.

And when they brought her home - to this country - to a family who loved her beyond words - she ruled the roost.

They beat to her drum.

They followed in her wake.

They bowed to her whims.

Queen Lyla.


Her heart was defective but it is now their hearts that are broken.

Her body could fight no more.


She is now in the presence of the Lord. Her pain gone and for that they rejoice. But their pain has begun. 

To Summer and Dave and all the kids - I grieve with you.

I have spent the last 9 years loving your fighter. I cheered and championed for you as you broke down mountains to get her home.  I have laughed at all her antics. I have prayed over every hospitalization. I have cherished every post. She lit up my life in my little house on a hill.

I am so sorry she is no longer dancing in your kitchen. 


May the God of Peace fill your hearts as you navigate a world with her no longer in it!


Monday, April 26, 2021

Over the Mountain

Two weeks ago we packed our van and headed over the mountain and crossed a one lane bridge with no rails.

It was a two and a half hour ride full of anticipation and longing.

A reunion.

Not family.

Not school mates.

A reunion of three boys who share one story.


They were once Lost Boys.

They had lived in the worst of places.

A place where boys die.

A place shut off from the rest of the world.

A place of nothing.

Three former Lost Boys.

They suffered abuse, neglect, abandonment.

But God.

He called us to the first little boy. 

 


Eleven years ago we were the first to go past those ugly green gates to the forbidden world behind.

We saw. We heard. We wept.

110 boys in that lonely world of hurt and pain and only three were eligible to be adopted. Only a few had a fighting chance of escaping a lifetime of nothing.

We screamed. We yelled. We cried.

The first family to step forward lived across the country from us. We watched with joy and tears and agony as they went for Aaron's tiny roommate. 

Their boy was hurt. Abused. Starved. Neglected. Hated by the nannies. He suffered there for two long years.

But he was a fighter and a survivor.

It took much to tame him. He had to learn to trust. He had to learn to know that hands could be kind and food would be given and abuse would not be tolerated.

And slowly slowly he calmed. He still bears the scars. But from the tiny little boy who shared a room and a table with Aaron, from a starved little guy who ran at the drop of a hat, from the battered creature who spent his days in survival mode - he's come a long long way.

While they were there bringing home their Little Lost Boy they met another boy. A sweet boy who shared a poem with them. A sweet boy with a smile and a tender heart.

They came out yelling for that one boy. Would not one family step up to get him?

So worthy. So precious.

No one heard.

Two years later I went back. I walked through the green gates, down the lonely paths and visited with boys who were just as battered and weary in a world of nothing as before.

My heart broken, I too met that same boy. I listened to his poem. I saw his sweet smile, his tender heart. (2nd boy in the picture)

I yelled too. Please someone get him out.

No one heard.

Dear Jesus, please!

So they went back.

The family who brought one home went back for the other.

They helped him escape a lifetime of nothing.

They rescued him.

And two weeks ago we packed our van and went over the mountain and across a bridge with no rails so we could spend an afternoon letting three Lost Boys meet on this side of the ocean. 


And so two families who shared one story about a forbidden world behind a green, ugly gate could meet and hug and cry a little.

We watched our boys and accepted their loss, noted their scars, recognized how far they have come.

And that sweet boy who shared a poem across the ocean. He shared another here. In English. 

 I cried.

Because there is nothing more precious in the world than seeing a child who had no hope and future sharing a poem with you here on this side of the earth. 



A bit of history:

 Aaron and Judd (Hurley shirt) were in the same group, sat all day inside the same shed (pictured below), slept in the same room and suffered the same abuse and neglect. 

Both boys struggled to feed themselves so both were completely dependent upon the nannies for food. To survive, Aaron had developed the ability to choke his food down quickly without barely swallowing it, so he could quickly eat the food haphazardly stuffed into his mouth. Sadly, Judd was not a favorite and was often starved by the nannies. He struggled to swallow and feeding him took time they didn't want to give him. We witnessed how they fed both boys and it was heartbreaking.

Aaron and Rob 2010 with eating shed in the background

Bey arrived after we left so we did not see him when we were there. I met Bey on my second trip.

These three boys are part of a tiny group of six boys who have escaped that institute. 

It's a drop in the bucket. 

Sadly, two other boys died before their families made it to them. And because no one has adopted out of there in so long, we have no real idea who is still available. There were moments in the last 11 years where we hoped it would open to the outside but sadly, that institute is just as closed today as it was when we first brought Aaron out.

There are 110 Lost Boys still living in that place. Those who don't die while they are there (and many many do) are transferred to an adult institute where they wait to die.





Thursday, March 4, 2021

Somewhere

Somewhere out there is a Mama in pain

Somewhere out there she is remembering, pondering, wondering

Memories are flooding and she can't hold them back

Somewhere out there she is filled with regret and sorrow

Her loss is hardest on this day

The day when her baby girl was born

The day when she held her in her arms and kissed her a million times and whispered promises meant only for her ears

Somewhere out there a Mama longs to take back time

Undo the past

Bring back what she lost, her baby, her treasure

To hold her and kiss her and whisper promises meant only for her ears

Somewhere out there a Mama wonders where and how

The three years she had her so fleeting 

Her arms so empty, her heart so lonely

Somewhere out there a Mama is praying for the little girl she lost

And here - in our somewhere - we pray too

We pray. We wonder. We grieve with her knowing that our gain comes at great loss.

Little girl turns 10 today.

Presents and birthday songs and Happy Mary


We celebrate. We rejoice. We don't forget. 

So we whisper prayers

Prayers that cover a little girl who lost so much

Prayers that a Mama out there somewhere will be comforted on this, her daughter's 10th birthday.






Monday, March 1, 2021

Sweet Spot

Sometimes more is better... and sometimes less is best!

When it comes to Mary's meds - it's a total shot in the dark. 

We literally have no idea what is working and what is not working.  

She is currently on one seizure med, the Keto diet, a million vitamins to fill in what she lacks in the Keto diet, a VNS implant that goes off every five minutes and medical marijuana.

She's not seizure free by any stretch but is doing a lot better than a year ago. Nights continue to be worse than days. Which is better for her and harder on us.


The medical marijuana is a specialty drug and costs a fortune. Thank the Lord for insurance that covers it completely!! We have to do a monthly call-in to request the drug and go through a long phone conversation in order to get it delivered. It has to be overnighted to our house and we have to sign for it when it arrives.

A week before we needed it I called and went through the phone gauntlet and arranged for it to be delivered.

The day of delivery came and went.

No drug.

The next day I get a call from the specialty pharmacy letting me know they didn't deliver the med. Um... Yeah... that was quite obvious.

So put it on a truck and get it to our house tomorrow... right???

Wrong.

It was a Thursday morning and they could not overnight it that night and since the next day was FRIDAY they could only overnight on business days. And the next business day was Monday.

So the next time we could get the drug was next Tuesday.

ARE YOU SERIOUS?

You can't overnight the drug on Thursday night? It's Thursday morning?

Nope. In their world of nonsense - they could not overnight that night and so we had to wait until Tuesday at the earliest.

 She did not have enough meds to last until Tuesday.

If we gave her full dose she would run out Sunday night. Meaning she would miss three doses.

Okay. If this was Tylenol - missing three doses is not a big deal.

This is a MEDICALLY FRAGILE child who tanks at the drop of a hat. 

How in the world can a drug company drop the ball like that? I called a week in advance to get her meds. They picked the delivery date. They didn't deliver. They should do everything in their power to make it right.

Sadly, we are not the first one it has happened to and we will be far from the last. 

It was like Russian Roulette. Which was better? Stretching what we had to cover all the doses or have her miss three doses.

We did the math and decided to stretch out her doses.

And we braced ourselves.

The first morning was ROUGH.  She stormed like crazy and we despaired - fearing that it was only going to get worse.

But our crazy girl never ever does what we think she will do.


Instead of tanking she got better.

I mean - her seizures were BETTER with the lower dose.

It's been well over a week and instead of going back to her normal dose - we have stayed put. Why not?? Her daytime seizures are better and her nighttime seizures are better and you just don't mess with what is working even if it makes no sense.

Because less is better and who knew??

Who really knew?

We never ever would have cut the med back. We were considering adding another drug or increasing her Keto or trying this or that because we live in the dark with Little Girl.

Instead we accidently hit a sweet spot with a medicine snafu.

We are enjoying this sweet spot.

Hoping it lasts. If it doesn't - do we go up or down? Now that is the question!!







Thursday, January 28, 2021

Don't Let the Bedbugs Bite!

 

Before surgery... 


After surgery.....


Before surgery...

After surgery...



Oh Yeah!! This is ONE HAPPY AARON!


Not only does he get to wear a long sleeve shirt for the first time this winter (brrrr), for the first time in many many years... he can feed himself Doritos!


That was one excited boy!

Did the last three months of hardship accomplish anything???

Was it a waste of time and effort???

LET'S PUT IT IN PERSPECTIVE.... Before the FIRST surgery Aaron had a 10 to 15 degree range of motion. After this surgery: A 70 degree range of motion. That's amazing!! 

Is their room for more?

Based on what they accomplished in the first surgery - YES. Based on his skin - we have no idea.

In surgery they had his flexion to 130 degrees. Right now his flexion is 115 degrees.  

We could be sad about the 15 degrees lost BUT... let's remember... when he came out of that first surgery and they told us about the skin disaster ... he was at 95 degrees and the MOST they anticipated was 105 degrees.

But Aaron has worked HARD in the last three months. He has pushed through the pain - he has worked his elbow day after day and he gained 10 degrees MORE than they thought!

So is he done?? No way.

He wants more. We want more. 

Prayers People!! 

All those prayers for our boy!

Hard work. Determination.

It's a great combo!

Keep it up. Our boy is a fighter.

God is so good.

----------------------------

As for me...

Well...

I experienced a first on this trip.

There were visitors in my bed that didn't belong.

Nasty little critters with a nasty bite!



Just my bed.

Aaron got a pass on this particular agony.

They spent the night chewing on my arms, and hands and ear and back and on and on...

 



I've been to a lot of hotels in my life. Some five star and some at the definite lower end of the scale.

This was a 3-4 star rating hotel. The Shriners paid for our room.

I have to say quite emphatically that I will never ever go back there as long as I live.

Every one of my bites is swollen and painful and I just never ever ....

Why my ear??? Really? They nibbled on my poor ear!




I now know what it means to not let the bed bugs bite!

And yes, we made sure those critters didn't come into our house.



Tuesday, January 19, 2021

What a Difference...

 

What a difference a week makes. Prayer makes. Healing makes. Eating makes.

Mary's jaw is healing nicely. We get to stay the course. No surgery. Just continue with the soft diet and no falling!

No falling... hmmm.... that's a very tall order!

Even without seizures!

She's a Warrior girl.

Yesterday I looked out and she was on top of a chair which she had placed on top of a chair and was holding onto a branch to pull herself up into the tree.

She's a heart attack waiting to happen.

Last week she donned the fire gloves, opened the wood stove and attempted to add wood and paper to the fire.

She's going to give me a stroke.

She's fearless and has no sense of danger.

Parking lots scare me silly when she's around.

She doesn't realize that her drop seizures make every set of stairs, ledge, stool, jungle gym or any other high place a danger-zone. 

She's carefree.

Just don't be fooled by her cuteness.



I'm going gray by the day!

In the meantime... 

We've been waiting for Aaron's arm to become infected.

How often do you hear those words?

When your arm becomes infected - call us.

Not if. But when.

Well... it is officially infected.

Pus oozing and a lot of pain for him.

Poor Aaron.

So next week we are heading back to Philly to remove the fixator.

He will be so happy to get that thing off!!



We will be so happy to get that thing off!!

Then we will finally see what Aaron's arm can do.

He's been diligently bending it every day.

The skin is healing. It's not completely closed at the elbow, but close enough that we are no longer worried about it ripping.

He has good range considering everything that happened, and while he is under anesthesia they will work for more.

He's come a long way and we are beyond grateful.

What a difference a few months make. Prayer makes. Healing makes. Therapy makes.

God has been so kind to two of the toughest kids I know.

Thank you for praying.

Please don't stop.


Monday, January 11, 2021

Hard Pressed

 

Brutal.

The last five days.


Don't be fooled by the cute smile behind her faceplate helmet.

Fractured jaws HURT - especially when eating.

And with Mary's Keto diet - adjusting her diet to a soft diet with foods she WANTS to eat and doesn't have to chew has been a huge, horrible, exhausting battle.

Her Keto diet isn't an on again off again diet. We can't just stop or cheat. We have never ever cheated in almost three years on this diet. The last five days have demonstrated how fragile she is when her ratio is off or when she stops eating. The seizure storms invade. Seizure storms make it hard for her to swallow. Which send her even deeper into the storms. We have had to rescue her over and over.

Eating has been miserable.

For everyone.

We have resorted to begging and bribing and shedding quite a few tears (me). 

We have adjusted her diet, worked with the dietician, tried this, tried that and beat our heads against the wall quite a few times.

Last night and this morning the battle was a bit less. She still stormed and struggled to swallow but it wasn't the one to two hour battle it has been in the last five days.


We are praying that it's going to be easier as the days go by.

Friday we go back in and get x-rayed again. IF she is healing well and the jaw is lined up correctly, then we just stay the course. IF the jaw is not healing or not in proper alignment... then... 

Okay...

I don't want to think about it.

They chose this conservative route in hopes that the jaw would heal correctly.

They chose it because Mary's seizures make it difficult to consider immobilizing her jaw. 

I'm grateful for that choice.

We are desperate for it to be the right choice.

Please pray that the fractures in her jaw heal correctly.


Pray Little Girl can heal and get this behind her.

I've struggled for the last five days emotionally. Why? She was doing so well. She barely falls anymore. Why when she does fall it is so brutal that she fractures both sides of her jaw??  

I realize there are no answers and so I cling.

Psalm 118:5 "When hard pressed, I cried to the Lord; He brought me into a spacious place.

What hope.

Though pressed in. Overwhelmed. He gives space. 

Thank you for lifting her and us to the throne.

Don't stop.









Thursday, January 7, 2021

The Best Laid Plans...

On Monday I took John and Aaron to Shriners in Philly. We met with three doctors and when I got home I sighed with relief. 

Aaron's next surgery will happen when his fixator starts to break down the skin. A month. Two. Until then we get a break.

No hospitals.

No distractions.

I can get some desperately needed work done.

Well the best laid plans of mice and men....

Yesterday Little Girl did a face plant into the floor and cut open her chin.

She cried hard.

Mary doesn't cry hard unless she is seriously hurt.

She refused food. For a child on Keto that's dangerous. She started tanking. Seizures piling on top of each other.

We began wondering, wondering if her jaw was fractured.

So off to the ER we went.

Okay. Valet parking at the ER has always been one of the nicest features of our hospital. I can pull up with a child who is in distress and they will go park my car for me.

UVA no longer has valet parking. COVID. Really? A medically falling apart child and I have to go park in the parking garage and walk back over. Carrying bags and holding on to a seizing child. 

Breathe. Bite tongue. One step at  time. Thankfully an orderly came with a wheelchair. Thankfully.


X-Rays. X-Rays again. Stitches. Rescue meds. Finally eating although with great care.

They sent us home with a pat on the back and thumbs up for clean X-Rays. No fracture.

This morning she had status. We chalked it up to the trauma of the last 24 hours. After she recovered, she ate but carefully. Guarding her jaw. 


We started breathing. Feeling a bit like we were over the worst.

Then the phone rang.

A resident error. The X-Rays showed fractures on both sides.

And so back we came. 


CT Scan and then waited.

All day.

UVA is a teaching hospital so one by one each resident from every department that is even remotely connected has to come in. Examine. Ask questions. Evaluate. Then leave.

Mary has been a rock star.

She did not complain, fight or even barely whimper last night when they put in the stitches. She didn't even throttle the doctor when the Novocain wore off and she was able to feel the needle stitching her skin together. She just grimaced and whimpered to let them know she could FEEL the stitches going through. 

She has not complained that her jaw hurts. 

She has not fussed about being stuck on a stretcher all day.

She has cooperated with all the X-Rays and CT scans.


She has been sweet to everyone coming in and prodding, poking and bothering her. All three thousand residents who have poured through the door.

And finally they are letting us go. No surgery for now. Praise the Lord.

Watch and see. Soft diet. Give it a week and see how she is doing.

Praise the Lord.

A long long day in the ER...


A tired little girl. Sore. Fragile. But homeward bound!