Tuesday, May 7, 2019

When the Tears Come



They are the ones who come in alone. Quiet. They slip into their seats trying not to be noticed. 

They wait. Unsure. 

It's a session for the weary. The searching. The overwhelmed. 

They are all of that and more. 

The tears start as soon as I start speaking. 

Adoption in the trenches. 

The place of loneliness.

Yes.

The place of guilt and conflict.

Yes.

The place where they are faceplanted before the Lord asking Him daily for strength, wisdom, LOVE and patience.

Yes.

Yes.

Yes.

They nod as tears course down their faces.



Adoption is lonely.

Homeschooling their kids is lonely.

These moms know that simple truth in the deepest part of their beings. 

They are deep down in the trenches.

Way too alone most days.

Struggling to survive. Struggling to love. Struggling to teach. Struggling to meet needs. Struggling to hold their families together. 

Struggling on a day to day, hour to hour basis.

They prayed.

They watched God move a mountain.

They brought the child/ren home.

And their lives have tumbled around them.

I see them.

These moms.

I know them.

I understand.

They come to me after I speak.

Sometimes waiting at the door in the back.

Most of the time coming later to my booth. Hoping I'm alone.

Rarely wanting to talk about homeschooling.

Always wanting to share their grief. Their struggle. Their battles.

I don't have much to offer except that I understand. None of my education prepared me. Degrees are meaningless. My notes from all the counseling and psychology classes I've taken over the years are just words on paper.

I can only speak from our experience. 

I can only share what we have tried.

I can only tell where we have failed. What has worked. The lessons we have learned.

I've been blessed to speak.

Three times in three different cities this year.

Whether to only a few or to a packed room.

Every single time watching the tears trickling down.

Every single time seeing heads nodding.

Every single time having moms and dads reaching out afterwards. 

Grateful that someone tried in a simple one-hour session to reach out and give them some encouragement. 

The opportunity has been precious and priceless.

Don't be fooled by what you see.

Don't be fooled if they appear at the park and everyone tumbles out of their van looking peaceful and happy.

Don't be fooled if they make it to church with fresh cleaned  children sitting quietly in their seats.

Don't be fooled when they smile and say all is well.

Listen. Listen carefully.

Take the time.

Too many are struggling and alone.



Too many feel guilty.

Too many are afraid to share that their lives are hard.

They feel they have failed at their calling.

They are worried that if they do share they will not be heard.

How can they explain to you that their child is wrecking havoc on their lives when what you see is a sweet smiling child.

Their marriages are coming apart.

They have quietly stopped going to church.

Love has become a daily, teeth gritting choice instead of a feeling.

Don't be fooled.

They need you.

They need you to come alongside and listen and encourage. They need you to believe them.  Oh how much they need you to believe them. 

They don't need you to try to fix their children. They don't need you to think that you would do a better job. They don't need you to give advice. They don't need you to tell them that their child is just like your child. They don't need you to say that kids will be kids.

They will run at those words. They will shut down.

Adoption is lonely.

The little person they have brought into their home has been hurt. Damaged. They have lost much. They have come from trauma and too often they bring that trauma with them. Into the house. And trauma breeds trauma. And healing takes time. And it's messy. And too often that hurting, damaged little person rejects terribly the person who is doing everything in their power to help them.

And the trenches are deep and confusing and hard to navigate and words are too often just Band-Aids on a broken heart.

Take the time, church.

Take the time to stop and listen.

Adoptive families are everywhere. Find one. Or two. 

Be a friend. Go sit at their table. Call them up. Not just once. Again. And Again. And Again. Love them as they love their little person. Invest in them as they are investing.

Don't expect that your call or visit will fix the chaos in their lives.

Be patient. Be willing sit with them for days and months and years.

Be willing to listen as they tell you today that it is hard. And they tell you months from now that it is still hard. And they tell you years from now that it is still just as hard.

They need arms of love. Words of encouragement. Friends who are willing to stay the course.

They need someone willing to sit beside them in a session for the weary.

So that when the tears start to course down their cheeks, they are not alone.

Please don't let them do it alone.





Sunday, April 14, 2019

Just Because



Just because they are adorable...




And a riot...



And we had a mixed bag of a crazy week...




And the UVA Cavaliers won the National Championship...


And we had a beautiful Sunday afternoon...


And spring is in the air...


Just because...






Wednesday, March 27, 2019

Little Bursts of Spring in the Longest Winter

We expected her to tank in South Carolina. We had a bagful of rescue meds and  back up rescue meds and were prepared for the worst.

Lack of sleep, change of routine, traveling are all triggers.

We braced ourselves for a torrent of seizures in the early mornings.

We waited.

We held our breath.

Little girl made it through the entire trip without one status episode.


Not until Sunday night when she dropped exhausted in the bed did her little body go into revolt and she slipped into status.

It was the longest stretch we have had in many many months.

5 mornings in a row without status.

FIVE MORNINGS!!

She still had seizures. Many many seizures. 

But...

We are seeing some signs.

Little bursts of spring popping up in the midst of a very long winter.

Her seizures are still many, but some are not as severe.

She's not dropping as hard or as often.

She's more alert.

She's more talkative.

Tiny steps. Miniscule.

Bringing hope.

Yet winter still hovers. The winds blow in often reminding us that we have still have a ways to go. 

We are wary but hopeful.

What's changed? What is causing the sun to start shining?

A multitude of possibilities and no one good reason.

Last year at this time we started the Ketogenic diet. She did amazingly well to the point where she went helmetless for 6 weeks. Then her Ketone levels started rising beyond what was good for her. Her seizures came back and she started the non-stop status episodes. It took a long time for us to point to the high ketones as the possible culprit. When we did we started lowering her ratio. Not typical protocol but for Mary nothing we do is typical. In the last month her ketone levels are back down to where they were when she was at her best. Lower ketones could be the reason she is doing better.

In December she had the VNS implant installed. Over the course of the last few months it has slowly been increased. Her VNS could be the reason she is doing better.

In December, when she was at her worst and we were in despair mode, our doctor requested for Mary to be given Epidiolex: a legal, doctor prescribed, medical marijuana that is only given to those with severe epilepsy in specific categories. She doesn't fit the categories but her case is so severe that after a desperate appeal by our doctor, she was approved. So in January we started Mary on Epidiolex.

Over the last few months we have been slowly, slowly upping her dose. The last increase was about 10 days ago. 

Keto Diet. VNS. Epidiolex.

All three excellent reasons why little bursts of spring have appeared.

It would be nice to know which one is making a difference but honestly - it doesn't matter. We are just grateful for the tiny steps forward we are seeing.

Tiny steps.

We aren't holding our breath.

We have experienced spring before and been smacked down hard by winter so we are not throwing a party or counting our chickens and eggs. 

But we are praying and we are hopeful and we are grateful for every single tiny bit of green that we can see in the midst of this longest winter!

Tomorrow I head out again for another convention (Teach Them Diligently, Nashville, TN). Rob is staying home with the three littles. I will be praying hard that he will have a peaceful, status-free 3 1/2 days while I am gone. I know he is praying too!







Wednesday, March 20, 2019

Wheelbarrows and Whatnot



When you are 90 years old... the rule of thumb should be... don't wrestle with a wheelbarrow because the wheelbarrow is probably going to win!


Rob and I have been so blessed over the years to have both his mom and my dad living near us.

Dad lives next door and Mom lives about 5 miles away. We see Dad just about every day and Mom about 2-3 times a week. 



Every Wednesday night I cook dinner, we load it into the car and then drive over to Mom's house to share it with her. Our three youngest love going because Gran has a bunch of cool riding toys in the garage and they love racing around on them. She also has a massive yard and satellite TV on a gigantic screen. For our satellite/cable deprived kids... going to Gran's definitely has its perks. 

Last week we headed over with a pot of soup and loaf of homemade banana bread. 

Much to our shock and dismay, an ambulance was parked in her driveway when we arrived.

The wheelbarrow won.

When you are 90, PLEASE... wait for your son to come and help you haul away the sticks you picked up in the yard. Better yet... wait and let your grandchildren pick up the sticks.

Because wheelbarrows are heavy and when you normally use a walker to walk... hauling away a load of sticks with an unwieldy wheelbarrow is not a good idea.

It's just not.

Poor Mom tried so hard to wrestle that wheelbarrow into obedience. Instead it tipped over, pulling her down with it. She came away with a broken arm. It could have been worse. 


She's in rehab for now, longing for home and kicking herself for trying to win against a two wheeled beast.

On Thursday Rob and I are heading for the Great Homeschool Convention in South Carolina. We aren't going alone. Nope. That would have been utter bliss but we can't leave little girl. Instead we will have a noisy van filled with three littles who love traveling and consider going to conventions the highlight of their days. Thankfully one of our amazing caretakers will be traveling with us as extra hands for Mary! 



We already have all of Mary's food weighed and measured (thanks to a sweet friend) which is a huge load off our shoulders. We just have to pull out the meals and serve! How awesome is that!

We are hoping and praying that little girl's seizures are manageable (the roller coaster ride continues) and that the change in schedule doesn't send her into a tailspin. 

Her favorite part of the convention will be discovering that our hotel has a pool. She is going to be in heaven!


The little boys are convention pros. They love helping us set up our booth and enjoy handing out flyers to people. John gets the best responses... people see him with his canes and will cross the aisle to take the flyer from his hands. He's always quite proud of how many flyers he gives out. It's a huge boost for him because he tends to be shy around people.


Aaron has a natural way with people. He makes friends all over the vending hall. He walks around talking to other vendors, flashing his dimples and warming hearts wherever he  goes. I will often have vendors stop by our booth to tell us how much meeting Aaron meant to them. 



Poor Rob's going to be stretched outside of his comfort zone.  I am speaking four times over the three days which means he's going to be minding our booth alone every time I am gone. For a man who is a natural on stage acting and singing, talking to people about our curriculum just about does him in! 

It's going to be a wild, fast, work-focused trip! 

If you homeschool and are going to be in South Carolina this weekend - come stop by our booth - BiblioPlan. It's going to look something like this....




If you homeschool and are NOT going to be in South Carolina... then check our out website!! 















Thursday, March 7, 2019

Birthdays and Bruised Hearts


It's 5:40 am and I am sitting in the Richmond Airport heading for the Great Homeschool Convention in Fort Worth, TX.

Convention season has arrived.

I'm not ready.

I left little girl sleeping in my bed this morning.

Every morning for the last week she has slipped into non-stop seizures in the early mornings.

This morning was no different. Rob was there to rescue her.

I was driving to Richmond.

Trying not to think.

This last week we celebrated her 8th birthday.


She got to be princess for a day.

It was magical and precious.



But don't be fooled.

The princess had to have an escort (her big brother) hold her arm during picture time.


This is her current reality.

A new helmet that I personally hate. 



It covers her entire face. 

She needs it.

Last night she slammed to the ground face first. The new face guard did what it was designed to do. No bloody nose, bit lip, bruised chin.

I hate it but it's necessary.


She is no better.

And our hearts feel beaten and bruised as we watch her crumble over and over again every day.

But for last weekend we enjoyed our little princess.





And we celebrated in style!!



And a good time was had by all...



Happy 8th Birthday little princess!




You light up our lives!


Oops.... How in the world did that crazy hair day/crazy hat day picture land in this post???



Man, I am going to miss my three treasures this weekend!







Tuesday, February 5, 2019

Last Man Standing


Oh my gracious this last week has been nuts!

A little over a week ago this one started the whole mess!

Sunday afternoon he spiked a fever that knocked him off his feet. He missed an entire week of school and is still battling a cough.


On Tuesday he shared it with his brother who left school halfway through the day with a fever. He spent the rest of the week battling a fever which finally broke on Saturday.


On Wednesday my poor dad, who lives next door, started with the fever and it hit him so hard that by Saturday he had pneumonia. He's only now starting to feel better.

On Wednesday night Rob cried uncle and crawled into bed with the fever and cough.

That left little girl and me.

Who would be the last man standing??

On Thursday I drove her into town to get her fitted for a new helmet. One that will have a face guard that covers her entire face. It can't come soon enough. Her seizures are causing her to slam to the floor face first and the number of bloody noses is getting ridiculous. We are helpless. 

While we were at the hospital she started cluster seizing. Usually that means that status is coming. Ten minutes from home it came. I looked the mirror and little girl was in Mary-style non-stop seizure mode. When I pulled over and got to her, I realized that the fever had caught up with her too. 

I can't honestly say I handled the situation with the greatest of ease. Having your little one burning up with fever and seizing in her car seat with no extra set of hands to help and the temperature outside hovering around 25 degrees meant I was shaking from cold and nerves.  We no longer give her the rescue meds right away in case she goes into a tonic/clonic (grand mal) seizure. So I waited the designated 8 minutes and when she hadn't stopped I drew up her rescue med. Unfortunately, my shaking, freezing hands failed to tighten the atomizer on correctly and when I inserted the syringe into her nose and pushed in the medicine, it squirted all over her face. At that point she slipped into a tonic/clonic seizure.

Usually they last about 2-3 minutes and then she goes into a deep sleep.

Of course not this time.

This time she went from the tonic/clonic back to her Mary-style seizure mode. There was nothing I could do except call Rob and tell him to get some more rescue med ready, as we were coming home.

Five minutes from home, she finally stopped seizing.

We carried her in the house, gave her Tylenol and tucked her on the couch. An hour later she was seizing again. Once we got her through that round, her fever broke and she was a happy, silly little girl the rest of the day. 


As for me, the last man standing... I've somehow, by the Grace of God, been able to withstand this round of illness. My nerves are raw, I feel like I've been through the wringer, but I've been spared being knocked off my feet. 


Three sick children, a sick husband and a sick dad has been enough!

For all of you who have been praying and wondering about Mary...  I will share more in a different post. Thank you for caring!! We are being held up by your prayers, love and concern!





Saturday, January 26, 2019

Breathe Mary Breathe


It caught us off guard.


What used to be scary had become commonplace. Status epilepticus. Non-stop seizures. Mary's style. 

Unique. Different.

We had a routine.

One of us would hold her, speak softly to her. The other would draw up the meds.



She had been sleeping peacefully next to me in bed.  The next minute she was in status. No pre-seizures. No warning.

It had been happening like that more and more so that in itself didn't scare us.

Concern us, yes. But we knew what to do. I called Rob on the intercom. 

I carried her downstairs and laid her on the couch and held her while he mixed her meds and gave them to her. And we waited. 10 minutes. That's how long it would take.

We were pros at the hard. We were used to waiting. 

Except this time we weren't.

Instead of the regular rhythm of status it changed.

Suddenly Mary slipped from her wacky style of seizing into a full tonic-clonic seizure.

From one to the other as fast as we could blink.

Her breathing stopped and so did we.

Her body rigid and convulsing.

We weren't prepared.

Fear enfolded us as we began to rub her chest. Breathe, Mary, Breathe. Her lips turned blue. Then her face. Breathe. 

Please, Dear Lord. Breathe.

Time stood still as we waited. And begged. Foam coming out of her mouth.

Then a gasp. A gasp again. A gurgle. teeth grinding. And breathing started. Shallow. Quiet. Long pauses between each breath. The rescue med suppressing her shallow breathing even more.

We weren't prepared.

Nothing can prepare.

It happened again a few days later.

And then again. And again.

We are no longer blindsided. We are a bit more ready but less comfortable. Her seizures are changing and we can't keep up.

Yesterday her VNS was turned on. It sends electrical impulses to the brain through the vagus nerve. It goes off every 5 minutes. We have a magnet that we can also use to set it off ourselves.

It was turned on but is currently at the lowest strength. Over the course of the next 6 months it will be increased bit by bit.

Yesterday morning she went from breathing quietly beside me to status. Seven minutes later she slipped into the tonic clonic seizure we have now, sadly, come to expect. We set off the VNS but didn't expect any results. It will takes weeks or months for it to work effectively.

It's a bad movie that just seems to keep getting worse.

Lately her drops have had her falling head first. Twice yesterday she slammed her face into the ground. Her helmet is no longer protecting her from the angle of the falls.

Both times blood poured. Her face is now bruised and puffy.



In between seizing and falling she is desperate to be just a typical little girl who thought making mud pies with the ash in the ash bucket a total blast.


So for a while her bruises and cuts and scrapes were mixed with dirt and ash.
And we could laugh at our messy-faced little girl.

With the cut lip. And the bruises.


And cry inside.

Breathe.






Friday, January 18, 2019

Found

Found

Preston has a family!!!



After I wrote my blogpost they contacted me and said they were in pursuit!! 

Well wasn't that just like having Christmas all over again!!!!

The coolest part.... They don't live that far from us and chances are we will share the same hospital... which means I will get to see Preston!!

Woo Hoo!!

Watching RR children thrive in families is one of my favorite pastimes!

So shout Hurrah with me!!!

Preston has a family!



Wednesday, January 16, 2019

One Little Boy



I remember the day. Urgent prayer requests came over the internet.

A little boy was near death. Screaming. Gasping for breath. His body convulsing. 


He was dying and the caretakers at the institute where he lived were refusing to get him care. The hospital where he had been just days before had discharged him because he was deemed hopeless. 

He was dying and no one who mattered cared.

All looked hopeless.

His little body shriveled and tiny and barely hanging on to life.

The ministry team surrounding him pleading and praying.

I remember the pleas and my heart cried out to the throne that he be spared. Breathe life, Lord. Give him more time.

Just one tiny little boy in an institute filled with boys. 


I remember the efforts that were made to get him the care that he needed. The night vigil around his bed. The phone calls to anyone who would listen. The government officials who were stirred from their apathy.

I remember finding out the next day that mountains were moved and this one little dying boy was rushed back to the hospital.


I remember.

Two years later that little dying boy lives.

His life spared.


For two years he's lived a protected life. Strings were pulled and that tiny little boy was placed in a foster home instead of at the institute.

For two years he has been allowed to grow and thrive in a house full of love. He's been given good food to eat and a warm bed. He's been surrounded by hands that love him and it has made all the difference.

He's a different little boy.





For two years he's lived with a single mom and her daughter who love him deeply.

But his protected life is soon coming to an end.

He's an orphan.

Orphans can't be adopted by single moms in his country.

Orphans belong in the institute in his country.

Orphans have no rights and no voice in his country.

Soon he will be headed back to the institute of indifference.

Soon he will be leaving a home filled with love and kindness and placed back in a building that reeks of urine and feces and is filled with boys and men who have been relegated to a life that is truly not living.

He has only one way out.

Adoption.

A family needs to boldly step out of their comfort zone and race across the ocean for one little boy.

He has some serious special needs, yes. 

But he is much more than a list of needs on a paper.

He's a lively, smiley, aware, social little guy who loves people and loves life. 


He's not an unknown child with just a diagnosis on a piece of paper. 

I have friends in his country who KNOW him. Just this last week they took him to the mountains with their family. 

They were the ones who stood by his bed in vigil as he lay convulsing and dying.

They were the ones who made phone calls and fought tooth and nail for him to be spared.

For the last two years they have been watching him, praying for him, loving him.

They have supported his foster mom and encouraged her as she has raised him.

They are grieving the reality that his time with her is soon over.

They are crying out for a family.

They are pleading to the Lord that he not be sent back.

They minister in the place where he will go.

They have adopted one out of there and are guardians to three others. They know the damage, the heartache, the horror that awaits him if he is sent back.

They know the smells and depravity of that place.

They have sold everything in their life here to minister in that place over there.

With all their hearts they do not want him sent back.


Are you feeling bold?

He needs bold.

He needs strong.

He needs a family of faith willing to step out and race to get him.

Please.

Someone rescue Preston!

Click HERE and HERE to find out more about Preston.

Pray. Adopt. Advocate.

Preston has $8,464.50 in his grant account on Reece's Rainbow towards the cost of his adoption.