Wednesday, August 21, 2019

Mary Mary....


Mary Mary, Quite Contrary....



How does your garden grow?



With silver bells, and cockleshells and pretty maids all in a row.

Well...

True for contrary....

but the silver bells and pretty maids.... hmmm.....

More like tsunami waiting to happen!!



She may look perfectly adorable but in reality - Little Girl is a hot mess every single minute of every single day!

I would love to give a positive, feel-good Mary update filled with adorable pictures and smiling faces.



But the reality is our little girl battles the epilepsy BEAST every single minute of her life and many days it wins.

Sunday was a 'win' day for the beast.


We had to rush her to the ER for rescue meds because ours just were not cutting it. 

We left 12 hours later with a wild child on our hands as the rescue meds bring out the raging, screaming, biting, scratching beast in her.

3 days later I'm writing this with a weary and sorrowful heart.

Standing by and watching what her seizures do to her is hard to take. Dealing with her drug-induced raging is exhausting and draining.



Her little body is battered and bruised from the constant falls that are never ending.


And the meds she takes means she's not always the sweet, adorable little girl in the pictures.

She's quite contrary most of the time.

And she suffers with her seizures.

We have done the best of everything out there. But each time we think we are making progress and the seizures are easing, her little brain reroutes around our best laid plans.

Her contrary brain thinks it is programmed to seize. And we are helpless to stop it.

It's hard.

She has rare great days. She has occasional good days. She has normal bad days. And she has scary days where she completely tanks.

It affects her ability to learn.

It affects her relationships.

It affects her behavior.

It affects her speech.

It affects her sleeping and eating.

It affects her ability to ever be left alone ever.

She's too dangerous.

She doesn't realize how dangerous she is.

Which makes her even more dangerous.

I want so badly to write positive words but our reality is a step-by-step, one-day at a time, trying this and trying that, bumping around in the dark.

We are on edge most of the time with her. We have learned that there is no normal when it comes to Mary's seizures. We never know when she will go into status. When we think we have figured out a pattern to her status she changes the pattern. When we think we have figured out her seizure types she changes the seizures. When we think we have seen the worst... well... this past weekend she let us know we haven't seen the worst.

Yet through it all, despite it all, she gets back up again.

She is resilient.

She is tough as nails.

She smiles in the midst.



Her contrary spirit may drain us to bits by the end of the day but it is how she survives and comes out each day with a smile on her face. She isn't going to let epilepsy rule her life.

She has a garden to grow.



With dreams of bells and shells and pretty things!

And by golly, that Little Girl is going to make it happen!!

Tsunami or not!!







Tuesday, July 9, 2019

Happy Birthday, John

FIFTEEN!!



NO WAY!!



Sweet boy.



A precious part of our family!!

He's our gadget boy. The one who loves to organize. The helper around the house. Electronics and engines fascinate him. He loves to take things apart. 


He has big dreams and tons of ideas. He wants to be a house designer and a hotel manager. He wants to drive a big rig and work on a construction site. He wants to be a mechanic and run a restaurant. 

Dream Big, John!!!


We can't wait to see what the future holds for you!!

We love you more every day!






Saturday, July 6, 2019

Just Like Me


Wherever we go people stare at us.

We are a motley crew with our braces and canes and helmets.

People are forever wanting to pat John on the head, gasp at Mary's 'slam to the floor' seizures and jaw drop at Aaron's arms.

Sometimes comments will be made and questions asked. Why are your arms like that? Why does she wear a helmet? What happened to his legs?

We usually respond with grace, but it's not easy feeling like a constant circus act when we are out and about.

I feel for my sons who are at an age where they are much more self-conscious about their looks and people's reactions.

It's hard on them and there just isn't that much we can do to shield them from the constant stares and comments. 

It's never-ending and something they have to deal with day in and day out.

Except for the last few days.

For three days they got to be around other people just like them.

The annual Arthrogryposis convention.

It was our first time going and we were blessed beyond words.

Aaron could look around and find hundreds of other children and adults who were just like him. John was able to connect with others who were also, just like him.

And for a few days, we got to be out in public and know that the stares our way were stares of joy and excitement as we blended into a world where being different was okay. 


They made new friends and connected with old ones (a pictureful of Reece's Rainbow treasures). 

We found older men they could talk to about all the tricks and adaptation they make so they can live independently. 

We went to different sessions to learn and share and be encouraged. 

John was even able to connect with two friends from his old orphanage. How amazing was that?? 


We saw our doctors and enjoyed talking to them.


We even met a family from the same country as our children. When their son was born with arthrogryposis... THEY KEPT HIM. They refused to give him up. They ignored the doctors and nurses who told them he would be better off in an institution. THEY KEPT THEIR SON!!  HOW RARE IN THAT COUNTRY!! How rare and precious. I hugged her. I thanked them. I know where he would have ended up and it was pure joy to see him with his family. Surrounded by love. They have fought hard to provide for him and he is doing amazing! (Be Real shirt).


Like I said... we made new friends.... hmmmm…..


… although I'm not sure a friendship was formed for little girl... 


She had a rough three days. But we aren't going to think about that right now!


For Aaron and John - they made great memories and already are asking about next year. 

Because hanging with others "Just Like Me" is a rare and precious gift.




Thursday, May 23, 2019

Defeated


I feel a bit defeated this morning.

In the last few days I have realized that I am a lousy communicator.

I realize this blog is about adoption and we are very very passionate about it, but Rob and I are also very passionate about history. And I have FAILED to communicate that passion.

When I was a child I hated history. I hated it. I thought it was the most boring subject in the world despite a mom and dad who loved history and who took us to every museum up and down the east coast. We lived in the D.C. area and were surrounded by museums and battlefields and historical sites and they drowned us in history. 

But school history was nothing like museum history and battlefields and historical sites. 

It was all about reading the textbook and answering questions and taking tests.

School history was U.S. history. Year after year. Again and again and again. 

Don't get me wrong. U.S. history is wonderful and fascinating but how many years in a row do you need to learn about the pilgrims and the Mayflower and the Revolutionary War? We rarely ever even got to the Civil War and I don't ever remember doing the World Wars. 

World history was scattershot until we got to that one year of World History in High school. I checked out after the first week. Hearing the teacher drone on and on just put me to sleep.

I hated history but I LOVED to read. I read anything you handed me. I devoured all the books in our family library, our school library, our church library, my friend's libraries, the town library. I loved when my mom went to thrift shops so I could buy books for cheap. 

I read everything and anything. My favorite - biographies and memoirs, books about the Holocaust and World War II, historical fiction, classics and books on psychology. 

MOST of the books I read were history-related. It was in those books where I developed a deep love of history as a story. But my reading was completely separate from the history I did in school.

School history was boring and something to be endured. The history in my books was real and alive and something to be devoured.

So how did a history-hating, book-loving mom of five end up co-writing seven history books???

How in the world did Rob and I end up owning a history and literature curriculum?

How in the world did I get where I am and how in the world have I neglected to explain fully explain our story and our passion??

I share my story at conventions whenever I can.



I'm not a big speaker. I don't draw the big crowds. We are lovers of history and passionate about our curriculum but LOUSY at advertisement and selling our books. We are pitiful about selling ourselves. We don't do book signings. We don't have our faces plastered on banners. We don't name drop.

We self-publish. We work out of our home. We juggle writing with being mom and dad to our five children. I field test all of our material at a local homeschooling co-op. Most of my homeschool families don't even realize the work we pour into the material their children are using.

Our time is limited. We are currently writing our eighth book. I am currently in Florida at a homeschool convention and Rob is writing and sole caretaker for all three kids. Mary's still on a seizure roller coaster which makes me a mess to think about being this far from her. 

But we are passionate about our work. I hated history for so long because the history I knew was separated from the stories I loved. 

When I was much younger and single and trying to decide the course of my life, I attended seminary. I was considering going on the mission field. I had a degree in nursing and teaching and was pursuing a masters in Christian Education. 

It was in seminary when my entire "I hate history" worldview changed. It was a professor of Old Testament who opened up an entirely different way of viewing history. An Old Testament class. How in the world? We studied Bible history and Ancient history in concert. It was mind-boggling, amazing, earth shattering for me. All of a sudden I began to see the Bible in an entirely different light. The stories I learned as a child became real against the backdrop of the ancient world. The ancient world was messy and gritty and filled with intrigue and horror and stories that made this book-lover happily satisfied.

I watched history unfold as we worked our way through the Old Testament. It didn't stop there. The New Testament class, church history, theology - all of it began to make sense as I studied it in context with the greater world. 

I began to realize that history was more than just memorizing names and dates and battles and taking tests. It was a woven story where, in the midst of the story, God was weaving HIS story. How priceless. Children, adults, everyone needed to see this. 

I left seminary and wanted to DO SOMETHING about what I had learned. 

But I had no outlet. 

Until I started homeschooling.

And we started using a little-known book plan called BiblioPlan.

It had a simple philosophy.

Line up history books with literature books.

Learn history in ORDER. From Ancients to Modern. Then cycle back again.

Study U.S. History along with World History.

Learn history through STORIES. 

Merge secular, Bible and church history together. 

Knock me off my feet.

Send me into book-loving orbit. 

I used it with my sons and then started teaching it at the co-op. I became passionate about it. I took that simple little book plan and started writing supplements, then simple history books. Rob got involved. We partnered with the owners. We wrote more. We began to realize the potential of what we had been given. Our simple history books became full blown textbooks. We eventually bought the company. 

Seven books later, 60+ products in our product line, sons who are actively involved in helping us, one part-time employee (WE ARE SO SMALL-TIME), three special needs children, another book on the way, more products coming out in the next year or so, revising, editing, writing, READING, researching, learning and growing.

All of that and people in my own world barely even know we exist.

I had a mom at our co-op this week tell me all about another curriculum (that happens to be one of our 'rivals') and I was jaw-dropped. She had no idea our material shared the same philosophy as that curriculum. And I teach her child in my history class!!

As I said.

I really feel defeated.

Both Rob and I write all the time when we are not juggling our kids and their special needs. 

We are all in when it comes to writing and caring for our kids and teaching and keeping our house from falling apart around us but we are LOUSY at promotion.

So here is my promotion....

ROB AND I OWN A COMPANY CALLED BIBLIOPLAN....

It's a Classical History and Literature Curriculum for grades K-12 with a fun Charlotte Mason flair.





It is mom-friendly, EASY TO USE, history rich, story rich, hands on fun, great for a family to do together (everyone studies the same time period but does age appropriate questions, maps and literature). 

Giants of the Faith Notebooking Series

We have written two levels of textbooks - one series for the older students (7-12) and one series (almost finished) for the younger students (K-7). 

We have maps and coloring books and timelines and a family guide that is loaded with ideas on how to link history with literature. 


We tell you what movies to watch to line up with the history. 

We line up some of the favorite spines from other curriculums (Story of the World, History of Us, Mystery of History etc.) so you can read those books along with our material. 

We give you great props for having family discussions. 

We give you all kinds of poems, verses, speeches etc, your child/ren can memorize. 

We line up all kinds of other material (audios, lapbooks, notebooking) to enhance what you are doing in history.


We provide writing ideas. 

High school students can get history and literature credit. They can also get Bible and Church history elective credits.

We weave God's story into history.

We have so many literature books lined up that we have an optional literature reading section because there are so many!

We do this all day every day.



So please - if you are homeschooling - at least go check us out.


GO NOW!

THANK YOU!!

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!