Lucy

How could I?

 

How could I see that precious little face and say no???

 

 

I couldn't.

 

Little Lucy is currently hanging out in my office waiting for the three musketeers to come home and discover that they now have a brand new puppy!

 

 

 

She couldn't be more adorable and sweet!

 

 

Even when she steals my chair!

 

 

Life has been so so hard these last months. Little girl is just really struggling right now on every level. Adding a puppy to our mix seems insane.

 

But sometimes you need a puppy in your life.

 

Sometimes your kids need a puppy in their lives to bring some laughter and fun.

 

And sometimes Mama needs a puppy. Because sitting here typing this with a sleeping puppy in my arms is therapeutic and calming after a week of anything but calm.

 

I couldn't say no because little girl needed a new best friend and the little boys needed a puppy to romp around with and I needed one too.

 

I needed this newest member to our family.

 

It's going to be a wild Friday afternoon!

 

 

 

 

 

 

 

One in a Billion

Thursday morning.

My house feels empty.

Elijah left for college yesterday.

Rob and Aaron are in Philly this morning. 

Aaron has surgery today on his thumb, and I'm sitting here in my little house on the hill feeling sorrow that I am not there with him. It is the first time one of my children has had surgery and I have not been by their side.

Little girl is in school. Just for the morning. We are starting slow. The last week has been a roller coaster of seizures. She had a peaceful night last night. The first in a very long time. We changed some meds around in hopes that it will give her relief. 

She's one in a billion. Mary. We found this out on Tuesday. 

We already knew this before Tuesday. Her seizures are so unique that it is rare that we can find anyone with similar seizures, despite spending tons of hours watching youtube videos, asking in epilepsy groups and researching everywhere we can. We don't even have a good name to describe them. They are a little bit of this and a little bit of that.

We knew she was unique but on Tuesday we found out just how unique she is. Her genetics testing came back. Her results are so unique that there are literally only two tiny articles on-line listing four people in the world who have ever had those results and only two of them have symptoms similar to Mary. Her results are so unique that her doctor found the same two results that we did and had no other leads from where to go from here.

One in a billion.

It means that we can't discuss with other families what does and does not work. It means that we have no idea what her long-term prognosis is. It means that she will be forging the way for families behind us. Our story will help them. We don't have a story to help us. 

One in a billion.

Go figure.

I sit here in my little almost empty house missing my peoples. Praying for Aaron. Worrying over him from afar. Missing Elijah already. Wishing the summer hadn't flown by so fast. Wondering how little girl is doing in school. Realizing that this moment of quiet is the longest I have had in forever. 

Thursday morning.

I think I just might go have myself a quiet cup of tea.

And pray for my sweet boy.

A Busted First Day

It was supposed to be her first day of school today.  I was supposed to fix her hair all up and dress her up in her pretty new dress.

That's what it was supposed to be.

Instead we had an ambulance ride to the hospital because the rescue meds we gave weren't rescuing her. 

Instead we had to have an IV to administer another rescue med that actually worked.

Instead we spent the early morning hours hanging around at the hospital.

Our first day of school was a bust.

Maybe tomorrow we can dress her up in her pretty new dress.

Maybe tomorrow we can avoid another trip to the ER.

Maybe tomorrow.

For today she will recover from our early morning adventures, play dress up and drive her rather exhausted Mama a bit crazy!

Beaches, Birthdays and Trashcans

Celebrating Aaron today!!

He's 14 years old!

For John's 14th birthday week we were in Kentucky at the Yogi Bear Campground. This week (for Aaron's 14th) we spent a few days at Virginia Beach. They are four weeks apart which makes celebrating rather crazy!

Little girl had a ROUGH week of seizures and quite a number of emotional meltdowns but still had fun learning all about beaches and salt water and waves and sand!

All three were rather nervous about getting in the water. You can hardly blame them. Their disabilities make swimming in the waves quite the challenge. Aaron struggles to swim without the use of his upper body, John struggles to move in the water due to limited mobility in his legs and Mary has seizures every few minutes.

It's a bit of a recipe for disaster.

The first day we worked hard at helping them gain confidence. Translation - getting them to put their feet into the water.

We spent the second day playing in the sand since the first day's endeavors didn't pan out very well.  But after lunch they got bold and allowed us to take them deeper into the water. All three started enjoying the water as long as someone was holding onto them.

We spent the third day watching John and Aaron realize that they could tackle the waves on their own. What a fun day they had battling the waves together! Little girl thought she could also tackle  the waves on her own but with her seizure level so high we made sure to have a tight grip onto her!

I don't know what we would have done if Elijah hadn't been with us. We truly needed three hands for this 'vacation.'

It wasn't exactly the most relaxing away time but watching them enjoying the waves on the last day made all the work and stress and meltdowns and food issues worth it.

Little girl came home on Thursday and had a wrestling match with the trashcan and lost. Translation - she had a seizure and somehow fell in such a way that the trashcan hit her in the eye despite the fact that her helmet was on.

On Friday morning she had another round of non-stop seizures. We gave her the rescue med but before it kicked in she had a tonic/clonic seizure (grand mal). 

It's been a wild week.

We are rejoicing with Aaron, recovering from vacation and grieving the never-ending seizure story!

The Beast - Round Two

Little toothless girl in her twirly new Matryoshka Doll dress!

 

 

Don't be fooled...

 

 

Don't let that sweet toothless smile fool you into thinking that all is well here in our little house on the hill.

 

 

It's not peaches and cream for little girl.

 

The Epilepsy Beast is not giving up.

 

I don't even have the words to describe what it is like to watch our littlest do full body falls over and over and over again all day every day.

 

I can't describe the feelings we have when we hold her after she has slammed her helmet-covered head onto some granite and screams for 10 minutes from the pain. How can you protect her when she has the helmet on and still gets hurt???

 

I am beyond the ability to share the utter exhaustion we are feeling trying to keep her contained and safe when she wants to run free.

 

We had 6 weeks where she was free to dance and play without her helmet. Those 6 weeks were right after we started the Keto Diet. They were right after we started CBD oil. We thought we had won the lottery. She still had 30-50 small seizures a day, but the beast was being tamed and we rejoiced.

 

But then the beast reared its ugly head.

 

Over the last 3 months we have watched it slowly gain back the territory we had claimed.

 

We have watched her seizures change from 30-50 small ones a day to 30-50 large ones. We have watched over the last two weeks as those numbers have inched ever higher. 50-60 large ones. Two days ago 100 large ones.

 

We have held her on days when the seizures won't stop and we have to give her rescue drugs.

 

Don't be fooled.

 

That smile - it's fleeting right now. She is frustrated and angry.

 

We are changing drugs around. Removing her last seizure medication as it has been known to interfere with the Keto Diet. Stopping the CBD for a period as it has been known to interfere with the seizure medication. The changes are affecting her mood and sleep.

 

The beast is winning right now.

 

It's winning.

 

But we are not giving up. We are in a season of weaning down a drug that will take several months to stop. We have an amazing doctor and dietician who are fighting this beast with us. We are praying and clinging.

 

 

We love our little toothless wonder. Even when she growls and yells at us. She has brought so much life and joy to our family.

 

We are not going to let the beast win.

 

Epilepsy is not going to have the last word in our house!!

 

Our little one is a fighter and we are fighting right alongside her!

 

 

 

 

 

 



Our Love Letter

I was being so organized. Last year at the Reece's Rainbow reunion my battery died on the camera so I was only able to take pictures for the first few days.

 

I mean - a reunion without a camera is like leaving part of my soul behind....

 

So this year I got smart. I would charge the battery before we left so that there was no danger of running out of battery.

 

I plugged that battery nicely in the charger and went about the frenzy of packing for 6 people for 6 days away. Packing this year included figuring out little girl's food for the week which added a thousand hours onto the entire packing process.

 

All the while - my battery was charging nicely in charger.

 

It was a wonderfully charged battery.

 

It charged wonderfully for the entire time we were gone. It was nicely charged when we came back 6 days later.

 

Who goes on vacation and leaves the camera battery at home??

 

Frenzied, harried me!!

 

No camera. Just a phone to take pictures.

 

I know that some people ONLY have phones to take pictures and love them, but I am not one of those people.

 

I so missed my camera.

 

 

 

I will be real.

 

Taking a newly adopted child is a traumatic experience. It is out of routine, scary and overwhelming. We spent the first few days looking at each other and wondering if it was worth it. Adding her seizures that are currently increasing by the day just adds chaos to the chaos. Cooking separate meals for her and for us was nuts. She was happiest in the pool and most unhappy out of the pool. So we swam. A lot. Having three disabled kids adds crazy to the crazy.

 

But, despite the meltdowns... she had a blast.

 

 

 

You would think that fracturing her collar bone from falling off one of these would mean she would never ever want to get back on one again..

 

 

 

Think again.

 

 

 

She was fearless and we were both having mini-strokes.

 

 

She didn't think the group photo was much fun but she LOVED Yogi!!

 

 

She made friends and even worked on her sharing skills a bit... that's a work in progress...

 

 

 

She got to meet Auntie Andrea (founder of Reece's Rainbow). How cool is that!!

 

 

 

Her brothers had a lot of fun too. They made new friends and played with old friends.

 

 

Going to Yogi is the absolute highlight of their year. They are already talking about going next year.

 

 

 

John celebrated his 14th birthday on the trip! He got to explore in a cavern as part of his birthday.

 

We had our third annual invite to our cabin for fellowship and smores.

 

 

On the last night Mary sang in her first Karaoke. No - she will win no awards for her singing abilities, but it was stinking adorable. Yes. I have it on video. Come to my house and I will share!!

 

 

 We had some great talks with so many moms and dad who are in the same trenches we are in. Those conversations were priceless. I needed those talks. I needed to share my heart, my exhaustion, my struggles with people who get it. Adoption is hard and emotionally costly. Many are living hard lives but as someone so poignantly reminded me - what we are doing with these children is our Love Letter to the One who gave His life for us. Every day they give us an opportunity to express our Love to Him.

 

 

Yep. It was a wonderful week despite meltdowns and seizures.

 

  

 Little girl learned that we can go and have fun and come home again and all is well. Those are important life lessons for her and she needs to have them.

 

 

Goodbye Yogi...

 

Until next year....

 

With fully charged battery and camera in tow...

 

 

Happy 4th!!

 

 

HAPPY FOURTH OF JULY...

 

 

 

 

 

Seven Alone

Back in the 1970's I watched a movie that had a huge impact on me. It was a true story about seven children who were traveling on the Oregon Trail in 1844 when both their parents died.

The oldest was 13 years old and the youngest was a newborn baby.

Seven orphaned children lost on the Oregon Trail.

Seven Alone.

They eventually made their way to safety and lived happily ever after.

At least that was the way the movie ended.

In reality they did make their way to safety and into the open arms of a loving, Christian missionary couple, Marcus and Narcissa Whitman, who had experienced their own tragedy. Their little girl drowned years before, but despite their grief, they willingly took in needy children. When the seven Sager children showed up at their mission they did not turn them away. They took all seven children in and adopted them. Sadly, happily ever after only lasted for a few years and then tragedy again struck. A local Cayuse tribe, in anger over the diseases that the settlers had brought with them which had killed countless of their numbers, attacked the mission and killed the Whitmans and the two oldest Sager boys. One of the girls died in captivity. The other four girls eventually were released and were split up among four different families.

It isn't a feel good story.

It's about loss and survival and rescue and loss and survival and rescue again.

We like adoption stories to be the feel good kind.

Seven children adopted by a missionary couple is a great happy ending.

It's what makes a great movie.

But it's not real.

Adoption stories are messy and hard and born out of loss and tragedy.

The ever after, even if it doesn't involve death and violence, is rarely the fairy tale kind but instead the cycle of loss and survival and rescue and loss and survival and rescue again.

Children who have lost their parents are emotionally tossed in a pounding sea and bringing them to the peace of the shore sometimes takes a lifetime of lifeboat attempts.

But despite it's messiness...

Orphans need families.

They need families with open arms and willing hearts to welcome them knowing that the ever after will sometimes include loss and survival and rescue again and again.

Sometimes orphans come by themselves.

And sometimes they come with a sibling or two.

And sometimes...

Sometimes...

They come Seven Alone.

Seven.

Orphans.

All from the same family.

And sometimes there is a family - one family - with open arms - willing to bring them home.

I have recently discovered one such family.

A family of four who has suffered through their own losses when it comes to children.

Their heart's desire has been a table full of children.

But infertility and loss have plagued them. They have two beautiful girls but their hearts long for more.

Despite their grief over their losses, they began to consider adoption. As a beginning step, they opened their home to hosting and in the process fell in love. Three sisters.

After spending a summer with them and then again hosting them over Christmas (2016), they decided to adopt them.

But the three sisters had four other siblings.

And they all wanted to stay together.

Without blinking, they moved into a larger home and opened their arms to welcome them all.

But the courts said no.

Only four could be adopted at a time.

That didn't stop them.

They did all the paperwork, crossed the ocean and then crossed it again and then crossed it again and at the end of May passed court for four of the children.

In less than two weeks they travel back across the ocean to bring them home.

Oksana 18, Natalie 15, Jacob 11 and Emily 8

 Once they hit American soil they are planning on starting the process all over again so that they can go back and bring the other three home too.

In the meantime, after the courts split the four children from the three children, the other three were transferred to a special needs institute. Oh My Heart!

Adopting four children is massively expensive. Our adoption of Mary cost us close to 30,000.

Adopting four is way over that amount. Especially when you have to cross the ocean four times.

They have borne the vast majority of the cost themselves. They fundraised and borrowed and worked to the bone to get the funds they need.

They travel in under two weeks and still need around 9,700.

And then they will start over again.

Crazy Love.

To keep a family of seven children together.

Will you help?

Please?

Their Reece's Rainbow grant account is HERE. Their  grant account needs to read 13,000 to be fully funded.

You can also donate through this link: CONNECTED HEARTS

Give knowing that this family has been sacrificing everything for these seven children.

THANK YOU!

Wednesday Edition

  

It's Wednesday....

Guess who lost a tooth????

 

 

This is what we do when we are bored...

 

 

My littlest beautician can be rather rough sometimes...

 

Ta Da!!

 

 

 And that's our Wednesday edition!

 

Short, sweet and a bit crazy!

 

 

Treading in the Ocean

We took little girl swimming a few weeks ago. She was crazy in the water. No fear. I sat with a friend and watched my three littles swim with their Papa. We sat and watched little crazy girl in the water. Rob had her in a floaty to keep her safe, but each time she had a seizure, her face would submerge in the water. It didn't phase her. She would recover and go right back to pure joy mode.

 

 

Then she decided she didn't want to be in the floaty. Papa had his back turned and out she slipped. The only bad part to her plan is that she has no clue how to swim. So little girl sunk to the bottom of the pool. Arms reaching up. Mama screaming on the side for Papa to grab her. Grab her.

You would have thought she would have wanted to get out of the water after that. I mean she swallowed a bucketful of water in her state of drowning. It didn't phase her. She was back in the floaty as fast as she could get back inside of it and happily swimming around the pool.

The water's been deep for us around here. We aren't quite drowning but are treading water in the deep end of the ocean.

 

Navigating a Keto diet and feeding the rest of the family is a whole new world. We are finding our way but it has been a definite challenge. An on-line friend kindly made us some easy to wear clothing that lets people know not to feed our little bear.

 

We write homeschool curriculum. We both work full time for our business. Three littles, three special needs, Annie shows, soccer for Aaron, surgery for John, teaching and grading papers for Julia all have taken their toll in the last months.

 

 

Our newest book just came out. We should be dancing and shouting for joy. It's hard to dance when you are treading water in the ocean. We have barely even advertised our newest book.

 

 

Three conventions in a row have me so bone weary I can't think straight right now.

This past weekend I took the little boys to the Virginia convention with me so I could have Mama time with them while I worked. Little girl stayed home with Papa. I get a telephone call. Little girl fell. She had a seizure on some playground equipment at the park and fell through an opening next to the slide. The babysitter cushioned part of the fall with her own body, but Mary landed on her shoulder. I dropped everything, threw the little boys in the car and raced home.

Friday night in the hospital is not a good place to land. That Friday night happened to be one of the worst places to land. Mary's spot in the emergency room was a bed in the hall right smack in the middle of everything. Beds were filled all up and down the halls. I climbed in bed with her and poor Rob stood next to us trying to stay out of the way. After a few hours someone was kind enough to bring him a chair. While she watched Frozen on my phone, we watched the chaos of the emergency room around us. Security guards and police coming and going. Stretchers going past us every minute or so. Nurses. Doctors. Residents. Cleaning staff. I started diagnosing people going by for fun. One poor man went hobbling by holding his gut. Definitely appendicitis. Score one for me when we heard the doctor telling him he needed to get them out.

Five hours later we left. Two small fractures and little girl's arm and shoulder wrapped and wrapped again to keep it safe and to give it a chance to heal.

 

 

How in the world do we keep little crazy girl still and quiet until it heals? How in the world do we keep her from having a seizure and hitting her shoulder every time?

Yesterday morning... back to the hospital. Little girl started seizing and wouldn't stop. I can't even describe the fear we experienced. Waiting for the ambulance while she seized again and again and again was agony beyond words.

 

 

Five hours later back home with heavy hearts as we realized anew that our little girl's epilepsy has no easy fix.

 

Treading in the deep hasn't been easy.

 

 

We really would like to get out of the ocean for a while. Conventions are almost over. One more trip to Texas next week and traveling will be done. Did I say our book is done? Rob wrote the lion's share of it so I can say with utter pride and pleasure that it is an amazing book. I had the privilege of teaching a classroom of children this year who read the rough draft of the book and they loved it. They came to class each week filled to overflowing with stories out of each chapter to tell me. What a chuckle. Mrs. Nalle... did you know....

 

Our older sons are amazing. They jump in during crises and carry the load. They travel to conventions and do all of our packing and shipping and help with the three littles. They go shopping and pick up prescriptions and mow and cook and whatever else we need.

 

My dad next door. He's priceless. He is here every single day helping us with our littles. I truly don't know what we would have done this year without him.

 

 

We are beyond grateful for the helping hands that the Lord has provided for us this year.

 

Yes, it's been a rough 2018.

 

But we are hopeful that over the crest of the next few waves... we will find solid ground and get to the shore.

 

Treading in the ocean can't last forever!

 

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