Tuesday, February 18, 2020

It's Coming!

It is on its way!!



The mail truck will soon be backing into our driveway and unloading will commence.


AWWWWWW!!!!!!!!

Breathe... breathe... breathe...


Stay tuned... we have been busy ... so much to share about this new book!!



Sunday, February 16, 2020

We Hide It Well

It's Sunday Morning.



Mary just finished her breakfast.

We won the lottery this morning.

Truly.

Sundays are hard.

A weekly battle that I have come to dread.


Our day of rest is usually one of anxiety and stress as we navigate around what epilepsy does to our little one. Going from sleep to wake for Mary is her absolute worst part of the day. We deal with morning time issues every single morning but somehow on Sunday it always seems worse.

By the time we get to church we feel like we have run a marathon and should win some kind of consolation prize for just showing up.

Some mornings it is all I can do to hold it in. The stress and frustration just below the surface.

We hide it well.

Most people at church are oblivious to how much effort it takes to get out the door.

But this morning she ate. 

She didn't start eating and then go into freeze mode. Not able to swallow or spit. 

She didn't chipmunk the food in her mouth. Seizures piling on with us helpless to do anything but wait it out.

She didn't refuse outright to eat.

She didn't go into status. We didn't have to rescue her.

She ate. She swallowed. She talked. She sang with Papa while he practiced the guitar. She took all her pills.

The lottery. It was the grand prize lottery this morning.

And we are breathing easy. Feeling like we could win if all marathons looked like this. Less stressful. Wishing every morning was like this. Especially Sundays.

Church. Worship. 

No marathon.


Thank you Lord. Thank you!


Sunday, January 26, 2020

Annointed With Oil


This last week as we have watched our little girl suffer over and over again, we have been raised up, carried, encouraged and loved by the prayers of all the saints who surround us.


Many of those prayers have been from those who follow this blog and are friends on Facebook. Unseen friends who are scattered across the globe who have come to love our three littles. 

Many are from family and friends who can't be near us but can still reach out and cover our little girl in prayer.

And many are from our church family.

A church family that has rallied for us this past week. Calling, e-mailing, praying, visiting. 

This morning in church our little girl tanked twice. Slipping into the abyss of seizures that have become her norm in the last week. 

Between tanking we carried her to the front of the church. She was surrounded by pastors and those who love her. And they prayed. Believing along with us that God hears our prayers. He loves her. He hears and He responds to our cries. He can heal. We know this. Mary was anointed by oil and lifted to the throne.

I am not one to lose it in public. I lost it in church today. The stress. The heartache this last week. The words of the doctors ringing in my ears. The raging. The crazy. I lost it. 

And God, in His loving kindness, moved into my spirit and whispered peace in my heart.

We carried her out and while Rob played the guitar for the offering, I sat on the floor in the back of the church rescuing my child for the umpteenth time in the week.

Every other time when she has come out of rescue she has been dazed, angry, agitated and aggressive. 


Today she came out with her eyes shining. Her impish grin on her face.



She has been that way this entire afternoon.

Bright. Happy. Talking. Seizures are there but few and far between.


Cured. Probably not in the immediate. She still is having seizures.

But an anointing that gave us a respite from the weary and the stress. An anointing that gave our little girl peace for a time. Joy. Happiness. A chance to go outside and jump on the trampoline with Papa.

He anoints my head with oil.

My cup overflows.

Surely His goodness and mercy follow me all my days.

And I will dwell in the house of the Lord forever.

Forever.

He is good.

He meets us where we are and carries us when we cannot go on.

And He CAN heal. We believe that. He can heal our little girl. For a season or forever. In this life or the next to come. 



Friday, January 24, 2020

Raging


We are home.

I won't lie.

The last 24 hours have been beyond brutal. 


Watching our little girl have non-stop seizures over and over again is hard.

Watching our little girl react violently to the drugs they give her is on an entirely different level.

She was feral last night. I spent well over 5 solid hours with a child who was scratching, biting, hitting and screaming. If I came too close she would try to scratch my eyes out. It wasn't until close to midnight that she finally fell into a deep sleep of exhaustion. They moved us out of the ER about the same time and after we were settled in the room, I curled up in bed next to her and held her. It was the only sweet moments we had the entire time she was in the hospital.

Today she is only a few degrees better. We are home and she is still raging. Everything sets her off and we are helpless to help her. The doctors tell us we should be grateful the seizures stopped. Grateful isn't exactly spilling from my lips right now. I want them to come be with my child to see the wreckage those drugs leave behind. 

And while Rob was washing the junk out of her hair this afternoon she had her first seizure since the massive dose of drugs thrown at her yesterday.

Respite from seizures is short-lived around here.

We are searching for the whys at this point. There could be many and none. On the paperwork they sent home they said it could just be the progression of the disease. I want to rage against that. I want my raging voice to join hers. 

Not for her.

Not for her.

We want a reason.

A reason means we can fix it. A reason gives us direction. A reason gives us hope.

Their words are too final and hopeless and I rage against them.

We just will keep trying.

And try not to despair.

And keep hoping and searching and praying and fighting for our little girl.

Even when she tries to scratch our eyes out.






Thursday, January 23, 2020

Unexpected Admission


It’s been a rough week. 

Little girl couldn’t get a break from status seizures.

Our rescue drugs were not keeping them at bay.


Unfortunately the cocktail offered by the hospital sends her into orbit.


It’s going to be a rough few days here as they work to break the cycle and try to figure out why she is tanking.

Her reputation preceded her. She gets the sad prize for being her neurologist’s most complicated case.


Praying for answers.


Praying for patience. She’s been raging for hours and we anticipate many more. 


Please pray for little girl. 


Tuesday, January 14, 2020

Saying Goodbye


Yesterday our Lucy left our house for forever.



Our silly, wild, over enthusiastic dog who loved her peoples with an exuberance that often left them flat on the floor is gone.


She was Little Girl's best friend in the world. They were Trouble One and Trouble Two. 


Loyal. Happy. Sweet. All great descriptions of our Lucy.


But also crazy and reckless. Wild. Uncontrollable.

Nothing was safe with her around. Every tool, toy, bike, piece of equipment, amazon box etc. was her personal chew toy. The amount of things she destroyed could fill a landfill. 

No one was safe. Every person who walked on our property was fair game for her. Little people were especially fun. Slamming them to the ground and rolling over top of them was her favorite pastime. 

My poor 85 year old dad took his life in his hands each time he came over.

Chewing and destroying we could handle. She's still a puppy. She will outgrow that destructive tendency.

The jumping and uncontrolled wildness we could not.

We tried. We tried to train her. She would sit and listen and stay at mealtimes like a pro. She understood commands. She was calm and quiet in the house with us. But as soon as a car drove into the driveway she went into frenzy mode and we could not reign her in. She was too big and powerful. We had friends try to work with her but hit the same wall we did. She would not come or sit or stay when people were around. She just went crazy. 

She was too wild. And we couldn't risk her harming the little people who so often visit. We couldn't risk her hurting my dad. Our UPS driver and other delivery drivers were traumatized by her. 

Last week she took out my friend's little girl. Knocked her over and when the child tried to get up she took her down again. It was pure joy for Lucy. The child was her plaything. I ran and yelled to get her off, but she was having way too much fun. At the expense of a little girl. 

It was the last straw.

She left yesterday. She has a great new home. A single man who loves wild and crazy dogs and who has the time and energy to work with her. She will be well loved and cared for. She will run and play with his other dogs, sleep in his room at night and be his special pet. He will feed her fresh cooked food and give her all the love and attention she deserves.

It's a win for Lucy. 

She went to the best kind of place for her.

But a loss for us.

She left a hole in our hearts.

We loved her. She was our crazy puppy. If we lived in a  bubble with just our family we would never ever have given her up. But too many people come here. And we had to consider their well-being. 

So yesterday we said goodbye.

And today I cry for my dog. Missing her crazy wild self. Missing her company while I work. Wishing we could have figured out how to stop the jumping, the crazy.


The kids and I, we loved our Lucy.

And we are really really going to miss her.


Truly.