Seven Years Home

This blog is a bit dusty and definitely very lonely. For a long time, it was a place for me to share my heart and soul but for multitudes of reasons I laid it by the wayside. 

 Seven years ago, Little Girl came crashing into our lives. 

To say that she has been a big part of why my voice went quiet would be putting it mildly. 

 When she first came home, she was a seizure nightmare. Every five to ten minutes she crashed to the floor with major drop seizures and between all those she had hundreds of small eye-blinking seizures. 

On a very rare good day she had less than 30 drops. On a horrific day 150 or more. The eye-blinking we didn't even bother counting. 

 But we did not despair because in our naivety we thought that the doctors could easily fix her up. 

 So we tried different drugs only to find out that inside Little Girl is a monster that comes unleashed when certain types of drugs are in her system. I do not want to remember the despair of those days when those drugs made her try to scratch my eyes out. 

 When drugs failed we switched to the Keto Diet. We jumped for joy when her drops disappeared - only to cry in despair as they came back bit by bit. We adjusted the diet, added medical marijuana, had an implant placed to sent electrical impulses into her brain every few minutes. We added another seizure med. And again, we jumped for joy as the drops decreased. 

It took years but bit by bit she no longer fell to ground. 

 But all the while those disappeared she threw at us new seizures - the kind that stem from those quiet eye-blinkings that we ignored because drops were so much worse. We thought. Those eye-blinkings grew and grew and became the new monster. They cluster and send her into non-stop seizing. Non-stop means non-stop. She won't stop seizing until we give her rescue meds. 

At first the non-stops were just cluster after cluster but then that too morphed and became a new monster. They morphed into tonic-clonic seizures - full body writhing. Lately those have morphed. Their intensity ever increasing. Scaring us. 

We are trying new drugs but no change. Daily we are forced to rescue her one, two, three or more times. 

 But the seizures are only part of Mary's story. The other part is the part that I rarely ever talk about. 

The autistic part of Mary. Yes, I said it. Little Girl has autism. We've known it for years but the official diagnosis came this summer. 

 Mary's type of autism stinks. There I said that too.

 Mary also has developmental delay. Break my heart I said that too. 

 Mary has two extremely rare genetic anomalies. Both of those come with a wide range of symptoms. Seizures, autism, developmental delay, ADHD stand at the top. There are loads more symptoms but those are the ones that derail us. They derail her. 

 Mary's behavior has been a big part of what has silenced my voice. She wears me out. Between her seizures and her behavior I feel like we are on a treadmill of exhaustion every single day.

 Early mornings are given to getting her seizures under control as she switches from sleep to awake. 

When she is finally awake, fed, dressed - we then get to see what Mary we will deal with on that particular day. Bad seizure days subdue her - she's content to build puzzles (which is one of her strengths) or color or look at books. She's quiet and sweet and easy and if not for the seizures, we'd wish for those Mary days all the time. 

 On days when the seizure are mild to moderate she's full of herself - tossing back and forth between hyper and oppositional. Much of her behavior comes out of her mouth. She speaks her mind. Verbally tells us off. There are no reasoning skills one can use to move her mountain. She has no filter and no impulse control and her agenda is her agenda and that's all I need to say. She can be extremely funny on these days and terribly frustrating to the point of tears. 

 On the rare no seizure days - Instead of rejoicing we cringe. The lights are on in her brain and the stimulation of the world sends her into a frenzy. She's out of control. Emotionally, behaviorally. We are left crushed in her wake. Sadly - those days are usually followed by a major crash seizure wise and we cycle back around again. 

 Those who know Mary in public often don't see all of the many sides of Mary. Unless she is actively in non-stop seizing or unless you watch her closely - you miss seeing the eye-blinking seizures that rule her world.

 When she's in a group she tends to be quiet. Unless we are in a store where she goes into sensory overload, she's mild-mannered. Since so much of her behavior is verbal and being out in public is a happy place for her - it's easy to assume that she is a sweet, compliant, beautiful little girl. 

 And we are left even more exhausted. Few understand what it takes to deal with Mary. 

To the world she is adorable. To us she is our hysterical wild child who has us pulling out our hair and grinding our teeth in despair. 

We love her. We sometimes wish for peace. 

 We do have aides who help us. We are not alone in our world of Mary. We are forever grateful for them and all they do. 

 But we are tied to Little Girl. We are always within a 10 mile radius of her. We are always on guard. 24/7. 

She is never alone. Never without eyes on her. Even while sleeping. 

 Seven years home. Seven years exhausted. 

 We would choose to do it again if given the choice. 

And that's just plain crazy!

On The Road - Oh My!

I remember learning to drive.

I was the third in our family and so the novelty of a new driver had worn off by the time it was my turn to sit behind the wheel.

My driver training consisted of a few excursions around the block in my dad's stick shift. I mastered the skill in our neighborhood after a few times practicing and was deemed ready to take the behind the wheel class.

The instructor was an older, impatient lady with little compassion for new drivers!

I got in that car for the first time and reached for the stick shift with my right hand and my left foot searching for the clutch.

Neither was part of the car.

I was completely lost.

 I didn't even know how to put it in gear!

I will pull the curtain over the verbal abuse I got from my instructor.

With harsh words and angry glares, she had to impatiently walk me through driving an automatic step by step.

After a few lessons with her where I soon learned to drive her car, she reluctantly passed me but wrote a note for my parents to PLEASE give me a bit more training before taking me to get my license.

Neither parent read the note which sat unopened on my dad's dresser.

The day I turned 16, I got my license.

I was driving alone within a few days.

It was a different world back then.

When our first two did the license route 10+ years ago, we were strict and careful and made sure they were well prepared. We made them practice, practice, practice and refused to let them drive alone even when they had the piece of plastic that gave them license to drive.

It was a long time before we felt at peace with them out navigating the roads on their own.

It was even longer when we let anyone ride in the car with them.

When John and Aaron reached the time when they could start the process, we looked at each other and wondered how in the world we would ever get them behind the wheel.

We had no idea what was involved for two boys who are handicapped to get their license.

So we just defaulted to doing nothing.

That lasted for a few years or so until they both started asking, wondering, longing.

So we started the process without the foggiest what was involved.

They took the classes, they needed, they studied for their learner's permit and we went in to take it.

They both failed.

Ouch.

It was okay. A large portion fail so it was fine.

But while there they made us check a box indicating that they would need adaptive material on their cars in order to drive. They sent us home with a ream of paperwork and a medical that the doctor needed to fill out.

Little did we know that that checked box was going to set us back a long long time and the hoops they would have to go through to drive would make breaking into Fort Knox look like a piece of cake.

We filled out the forms, got the medical and six weeks later went back to try again for their learner's permit.

I stood at the DMV desk with both boys helping them navigate the process.

John got the green light to go ahead, and he went to take the test.

Aaron hit a wall.

His file had a rejection on it. He could not proceed unless we had a certified driving instructor overseeing his driving.

What?? 

Why Aaron and not John?

I was a bit shocked, frustrated and definitely angry.

They refused to let him take the test with that rejection on it and no amount of reasonable pleading would change their minds.

John passed his test, but Aaron wasn't allowed to take it.

Over the next weeks I made phone calls, banged my head into the walls and researched until I realized that Aaron's medical had made it to the DMV which immediately put a red light on his file and John's paperwork had gotten lost.

So one boy was able to get through because of lost paperwork and the other was shuttled to the side.

We had to pay 250.00 to a company that did driver training to get Aaron out of the red light jail so he could get his learner's permit. That took months and months.

Getting a learner's permit was honestly the easy part.

With the checked box on their application, we couldn't just proceed to the next normal step.

They had to be in a program to get their licenses.

We couldn't afford to go the driving training route that we used to get Aaron his learner's. Two boys and the costs for that program were outrageous.

Thankfully, we found Plan B.

A year and a half ago the boys enrolled in a program in Virginia that gives driver training, vocational training, job help and a little bit of a lot of other things. Wilson Workforce and Rehabilitation Center.

The people there have been fantastic.

Both boys were evaluated for adaptive devices.

John's were fairly straightforward and easy (although it still took 6 months).

They picked what he needed, he spent 6 weeks last fall training on the equipment and passed his driving test.

He now had a license.

Aaron hit another wall.

The adaptive equipment they had at the training center was awkward but the best they had to offer.

He spent 5 weeks at different times in the year learning that equipment until they cried uncle and wanted him to try something else with an entirely different training program.

The new equipment worked like a charm, so he spent 5 solid days learning that equipment and then passed his test.

Both boys have their licenses.

And then we waited. And waited.

Part of the waiting involved the financial part of getting them behind the wheel.

Virginia has a program that helps cover the cost of their adaptive equipment after we pay a deductible.

This involves bids and then approval and then putting the equipment in.

This past week - John's car was adapted and he has been driving under the watchful eyes of the instructors at Wilson Workforce.

On Friday he will be released and able to drive independently.

Of course  - he will have to pass the Dad and Mom driving school which involves many hours of practice before he is fully released to venture out on his own.

But despite that minor setback - he's so excited and we are so proud!

That just leaves one more to get through the process.

For Aaron - it's anybody's guess how long it will be. His adaptations are more intense and require financial approval way up the food chain. 

So he's "patiently" waiting and hoping that soon he too will be sitting behind the wheel of his own car.

I've got mixed feelings about my boys out on the roads.

I had those same mixed feelings with my first two.

It's hard to let go.

But I will be glad when the cars are finally finished, and we can put this crazy, hard process behind us!

As for Little Girl - driving is not ever in her future but she will definitely enjoy being chauffeured around by her big brothers!

The Challenge

 This weekend was a watershed moment for us.

Our two boys graduated from high school.

That may not seem like an amazing feat since hundreds of thousands and more will be graduating from high school this year just like hundreds of thousands and more have graduated and will graduate in the years to come.

 It's just a right of passage. One of those milestones. An expected part of growing up.

A yawn. A get through the ceremony. A look to the future.

But for my boys - my boys - it is so much more.

For this one all I can do is weep realizing that but for the Grace of God he would still be sitting in a shed with his mind crippled from years of disuse.

He was thrown away - deemed severely physically and mentally disabled.

Uneducable. Useless. Not fit to live out in society. A child to be hidden away behind the walls of an institute that was closed and still is closed to the outside world. 

But for the Grace of God he would still be there. Instead he has graduated from high school. 

And this one - eleven years in an orphanage. Not quite in such a horrific place but he would never have been given a ticket out. His disability disqualifying him for life. 

Another Grace of God story. How he even came to be part of our family. A blessing we weren't looking for.

He came out at 11 years old barely reading, emotionally a baby, screaming for attention.

But God.... 

He has come so far - matured into an amazing young man!

Both lost so much in their early lives.

Both had huge mountains to climb.

Both so far behind academically. 

We had to place them in school where they belonged instead of what their age dictated. Thankfully, their school allowed us to do that.

It gave them time to breath and catch up.

It gave them time to mature.

But, by the time they hit 8th grade they were three years behind their peers and graduating from high school looked far far away.

Staying in school until they were 21 was just not going to be in their best interest.

So we made a decision.

We moved them up to 10th grade in one fell swoop and set them on a course to graduate in 3 years.

Three years for two boys who came from such hard places.

It meant they had to take extra classes in the mornings. All three years.

They took the challenge!

They got up early early every single school day for three years and studied at home before going to school. 

They went to school all day and then spent many many many afternoons and into the evening doing school work. It was not unusual for them to be working on the weekends.

They had to study harder than the average to get by and they did.

They rarely complained and they kept their eye on the prize. Graduating. 

Their learning styles and needs were so vastly different. We had to constantly adjust, adapt, work to meet their individual needs. 

They were so blessed to go to a school where they were well cared for.

They had wonderful teachers - wonderful staff.

They had a wonderful aide for the last two years who came alongside them coaching them through. We would not have done it without our Bri!! 

Their granddad has been one of their biggest cheerleaders! He has picked them up from school each day, tutored them, listened to them and loved them! I don't know what we would have done without him!

Their campus pastor has stood by them all their years at school - encouraging them and teaching them what is the most important of all! 

We love you, Pastor Gary!!

It's a been a tough three years and a wonderful three years.

They are not academically gifted or intellectually advanced. They are average students who took the challenge and worked hard to reach their goal.

And we are their proud parents!

Go John! Go Aaron!!

They are not done. 

They have great plans for the future... but that's for another blogpost!!

Dusting off my Blog

 It's been a while old friend.

I've not written since July on here.

Not that I haven't had words because they spin in my head all the time.

Not that I haven't had the desire because it's always there.

But sadness has prevailed. And circumstances. And time.

MACC/Angel Tree is here again.

Our hearts are heavy this year. Heavy with thoughts of war and loss and little ones who are displaced all across Europe. The orphanages in Ukraine moved all those available for adoption out of harm's way. 

My sweet MACC babe from last year, Presley, is still waiting for a family yet out of reach. I cannot advocate for him and that breaks my heart.

Just about every year our Angel Tree children have been from Ukraine. I don't think any of them have been from anywhere else.

How could they not when we our three precious treasures came from there?

But this year the door is closed. Adoptions are on hold.

Our two little Angel Tree girls are from other lands.

They are so worthy and so needy.

So I am dusting off my blog, setting aside my sorrow and sharing two little girls.

Two brown eyed little girls - Abby and Victoria.

 

We can't see Abby's face because of the rules in her country. Bummer. 

Abby is six. She has epilepsy. Now you know why I picked her! She's somewhere in Eastern Europe.

Victoria is the brown eyed beauty who finds herself for the 2nd year on the row on the tree with no family in the wings. She's 10 and her chances of adoption are diminishing. She's somewhere in Latin America.

I am trying to raise 1,000 for each girl. Right now they have $15.00 each. I'm 

working on adding more but could really use help!

To find out more about each girl and to donate click below.

DONATE TO VICTORIA HERE

DONATE TO ABBY HERE

This year the graphics on MACC are in honor of Ukraine. 

I absolutely love them. My dear friend Lu who does all the graphics outdid herself!

 

CLICK HERE TO GET TO MACC AND SEE ALL THE WORTHY CHILDREN

To Ukraine, With Love

 

Last week I traveled with our three "Littles" to the annual Reece's Rainbow reunion.

For those who are new to this little blog of mine - It's the ministry where we found our kiddos.

This year our families filled up the campground. 

There used to be a time when I knew everyone who was there and was able to name all the children.

Not anymore. 

That's a really good thing even though it feels kind of strange. 

As the undesignated organizer of the yearly picture - I did a lousy job this year of getting all the RR kids in one single frame with my phone camera. 

 I was too busy making sure they didn't all run away before the real photographer took the picture.

So you kind of have to piece it together to see all the kiddos. Of course we are missing a lot in the picture. Some hadn't arrive yet, some had already left and some just didn't get up in time to get there! 

You can see my little shoeless girl right smack in the middle with her helmet on! 

Later on in the week we gathered the Ukraine children together. Again - not even close to all of them but I was happy to get these.

It's our "To Ukraine, With Love" picture..

It was a fun week although definitely exhausting. Ten hours there and back make for two long days of travel. Every year I say this will be the last time.... 

But it's hard to not go when my two boys talk about it all year long and count the days when they can go back! 

We didn't get any souvenirs this year, but we did bring back head colds, fevers and some stomach ailments. Little girl landed in the ER on Sunday morning after a dreadful night of high fevers and seizures. She has an ear infection.

Not a great way to end a special week but you can't have it all.

18 Looks Good!

This boy. The oldest of my "littles" is no longer a little.

18 years old. A man.

I missed his birthday on Saturday. I was in Texas and didn't get to hug him! I was stuck doing the "I love you" over the phone. 

Oh, how I wish he had been my boy for ALL 18 of those years.

I've had him for seven precious years.

It's not been picture perfect. Adoption never is. We've shed many tears over our John John.

There were many many days in those seven years when love was a choice and not a feeling.

There were many many times when the mountain seemed high, and I never thought we would get over it.

There were many many times when I despaired. 

But I can say with no hesitation that he has been one of the best gift God has given us in our lives.

The transformation in his heart over these last seven years astounds me. 

He has grown, changed, matured. He has blossomed - especially in the last two years.

He has become a kind, compassionate, tender young man who loves Jesus with all his heart and it shows.

I love this boy/man so much.

I love his smile and his sense of humor. I love the way he tenderly cares for Mary. I love his inquisitiveness. I love his passion for music. I love his hit or miss OCD where he can fold the clothes with exact precision, but his desk looks like a bomb blew up.

I love our John and I wouldn't trade him for the world!

God knew what He was doing when he placed him in our family.

Happy Late Birthday, John!

30 Years on the 30th!

 

Thirty years today.

If I could give one piece of advice to a girl looking for that perfect someone, I'd tell them to pick one who is humble enough to say to you before you are married that he'd rather God lead your marriage than him.

I'd tell you to pick someone who says: Walk beside me and we will do this thing called marriage side by side.

Mutually submitted.

Mutually loving.

Pick that one, girls.

Pick one who is gentle in spirit but fierce in protection.

Pick one who is not afraid of work.

Pick one who cries at all the sad parts of movies.

Pick one who drinks water and tea.

Pick one who guards his words in an argument.

Pick one who loves the helpless and is willing to give up everything for the hurting.

Pick one who is generous and kind.

Pick one who doesn't mind dishwater hands and dirty diapers.

Pick one who is a beast at cleaning the floors and knows how to run a vacuum cleaner.

Pick one who loves Jesus, loves music and loves his peoples.

Pick one who loves to laugh and who laughs at all your dumb jokes!

I've spent thirty years with that kind of man.

We've walked side by side on this roller coaster of life - through the hard times, the funny times, the crazy times and the impossible times.

Humbly submitted.

Humbly loving.

Happily married.

I can't wait for the next thirty!

60

 I'm 60 today.

Sixty years old and leaving for Ohio for a homeschool convention. 

Last night Little Girl saw my computer bag in the kitchen.

She saw me packing it for the trip.

When I turned away, she took the bag and carried it back in the office. 

Mama stay.

Break my heart.

Yesterday I took the day off and went to the zoo with my kiddos

That was the best birthday present.

Enjoying a beautiful day with my three youngest.

Watching them enjoy life.

Seeing their laughter.

I don't have words on my 60th birthday.

I'm grateful for 60 years.

I'm grateful for my family.

I am grateful for a loving husband and a God who loves me.

My birthday request - pray for Ukraine.

Pray for peace!

Unleased Evil

I've been following this war from day one. Every single day pouring through the articles, pictures, posts from friends, news sites and more to stay as educated and on top of what is going on.

I've shed tears. I've grieved. I've raged. I've posted on here and on my Facebook wall.

I've tried to keep people informed. I've tried to be a voice. I've tried to share what I know to raise awareness, support and prayers.

I've seen terrible pictures over the last 30+ days. I've read about horrible atrocities. I've watched shocking videos. 

But yesterday.

Yesterday.

Yesterday the cacophony of stories and pictures and video came from so many different directions I could not sift through it all.

The whole region of Kyiv was liberated from the Russians over the last few days.

That should be cause for great rejoicing.

My friends who were forced out of their homes can go back.

The Russians did not make it into Kyiv.

The Ukrainians "won."

Yet I weep.

I am at a loss for words.

What they left behind is unspeakable.

Bodies are everywhere. Not just one or two. Hundreds. People in civilian clothes. Men. Women. Children. Whole families in cars trying to flee. People shot trying to get away on their bikes. All dead.

This is not some history story from the past.

These people were killed a few days ago. A week ago. In the last 5 weeks.

Bodies in the basements. Unable to get out for food - they starved to death.

What they did to those living is just as horrific.

As the living emerge from the basements and hiding places, the stories pour forth.

The rapes. Children being forced to watch. 

Men taken, tied up, tortured and then killed. I've seen pictures. I want to vomit.

They treated the civilians of these cities like a sick video game - shooting to maim. Shooting to kill. 

Mass graves.

City after city.

They left Kyiv but left behind sick "presents."

They left piles of their bodily functions everywhere.

They booby trapped toys. Dead bodies. anything. Everything.

They mined the roads. 

They destroyed countless homes.

Schools. Churches. Hospitals. Businesses.

They took everything they didn't blow up. Everything. From refrigerators to TV's to pots and pans to clothes and jewelry and everything. 

I could go on and on and on.

Kyiv region is freed but the Russians are not gone.

They have only moved.

They are centering their forces along the eastern part of Ukraine.

Their desire is to capture those areas and then move in from that direction.

But just to keep it lively for them - they continue to bomb. Here, there everywhere.

To scare. To destroy. To break the will of the people.

To keep the Ukrainians from taking their full force to the east too.

It's not over.

It's far from over.

It's unleashed evil. 

And we sit here in America watching and grieving and shouting and crying and praying and wanting it to end but feel so helpless.

I say I am sorry to my friends over and over and over again.

They are too.

There are just no words for this.

They left Kyiv region but are still in countless other cities and villages across Ukraine. Maiming. Killing. Raping. Stealing. Torturing.

When will it end?

Who will come to the rescue of the Ukrainian people?

When is enough enough? When do we acknowledge as a nation, as a people, that evil must not be allowed to run rampant?

Please keep praying for Ukraine.

Pray that God will hear the cries of the people. That He will give comfort in their distress. 

Pray for an end to this evil.

Pray that our leaders and the leaders of Europe will do the right thing.