Somewhere

Somewhere out there is a Mama in pain

Somewhere out there she is remembering, pondering, wondering

Memories are flooding and she can't hold them back

Somewhere out there she is filled with regret and sorrow

Her loss is hardest on this day

The day when her baby girl was born

The day when she held her in her arms and kissed her a million times and whispered promises meant only for her ears

Somewhere out there a Mama longs to take back time

Undo the past

Bring back what she lost, her baby, her treasure

To hold her and kiss her and whisper promises meant only for her ears

Somewhere out there a Mama wonders where and how

The three years she had her so fleeting 

Her arms so empty, her heart so lonely

Somewhere out there a Mama is praying for the little girl she lost

And here - in our somewhere - we pray too

We pray. We wonder. We grieve with her knowing that our gain comes at great loss.

Little girl turns 10 today.

Presents and birthday songs and Happy Mary

We celebrate. We rejoice. We don't forget. 

So we whisper prayers

Prayers that cover a little girl who lost so much

Prayers that a Mama out there somewhere will be comforted on this, her daughter's 10th birthday.

Sweet Spot

Sometimes more is better... and sometimes less is best!

When it comes to Mary's meds - it's a total shot in the dark. 

We literally have no idea what is working and what is not working.  

She is currently on one seizure med, the Keto diet, a million vitamins to fill in what she lacks in the Keto diet, a VNS implant that goes off every five minutes and medical marijuana.

She's not seizure free by any stretch but is doing a lot better than a year ago. Nights continue to be worse than days. Which is better for her and harder on us.

The medical marijuana is a specialty drug and costs a fortune. Thank the Lord for insurance that covers it completely!! We have to do a monthly call-in to request the drug and go through a long phone conversation in order to get it delivered. It has to be overnighted to our house and we have to sign for it when it arrives.

A week before we needed it I called and went through the phone gauntlet and arranged for it to be delivered.

The day of delivery came and went.

No drug.

The next day I get a call from the specialty pharmacy letting me know they didn't deliver the med. Um... Yeah... that was quite obvious.

So put it on a truck and get it to our house tomorrow... right???

Wrong.

It was a Thursday morning and they could not overnight it that night and since the next day was FRIDAY they could only overnight on business days. And the next business day was Monday.

So the next time we could get the drug was next Tuesday.

ARE YOU SERIOUS?

You can't overnight the drug on Thursday night? It's Thursday morning?

Nope. In their world of nonsense - they could not overnight that night and so we had to wait until Tuesday at the earliest.

 She did not have enough meds to last until Tuesday.

If we gave her full dose she would run out Sunday night. Meaning she would miss three doses.

Okay. If this was Tylenol - missing three doses is not a big deal.

This is a MEDICALLY FRAGILE child who tanks at the drop of a hat. 

How in the world can a drug company drop the ball like that? I called a week in advance to get her meds. They picked the delivery date. They didn't deliver. They should do everything in their power to make it right.

Sadly, we are not the first one it has happened to and we will be far from the last. 

It was like Russian Roulette. Which was better? Stretching what we had to cover all the doses or have her miss three doses.

We did the math and decided to stretch out her doses.

And we braced ourselves.

The first morning was ROUGH.  She stormed like crazy and we despaired - fearing that it was only going to get worse.

But our crazy girl never ever does what we think she will do.

Instead of tanking she got better.

I mean - her seizures were BETTER with the lower dose.

It's been well over a week and instead of going back to her normal dose - we have stayed put. Why not?? Her daytime seizures are better and her nighttime seizures are better and you just don't mess with what is working even if it makes no sense.

Because less is better and who knew??

Who really knew?

We never ever would have cut the med back. We were considering adding another drug or increasing her Keto or trying this or that because we live in the dark with Little Girl.

Instead we accidently hit a sweet spot with a medicine snafu.

We are enjoying this sweet spot.

Hoping it lasts. If it doesn't - do we go up or down? Now that is the question!!

Don't Let the Bedbugs Bite!

 

Before surgery... 

After surgery.....

Before surgery...

After surgery...

Oh Yeah!! This is ONE HAPPY AARON!

Not only does he get to wear a long sleeve shirt for the first time this winter (brrrr), for the first time in many many years... he can feed himself Doritos!

That was one excited boy!

Did the last three months of hardship accomplish anything???

Was it a waste of time and effort???

LET'S PUT IT IN PERSPECTIVE.... Before the FIRST surgery Aaron had a 10 to 15 degree range of motion. After this surgery: A 70 degree range of motion. That's amazing!! 

Is their room for more?

Based on what they accomplished in the first surgery - YES. Based on his skin - we have no idea.

In surgery they had his flexion to 130 degrees. Right now his flexion is 115 degrees.  

We could be sad about the 15 degrees lost BUT... let's remember... when he came out of that first surgery and they told us about the skin disaster ... he was at 95 degrees and the MOST they anticipated was 105 degrees.

But Aaron has worked HARD in the last three months. He has pushed through the pain - he has worked his elbow day after day and he gained 10 degrees MORE than they thought!

So is he done?? No way.

He wants more. We want more. 

Prayers People!! 

All those prayers for our boy!

Hard work. Determination.

It's a great combo!

Keep it up. Our boy is a fighter.

God is so good.

----------------------------

As for me...

Well...

I experienced a first on this trip.

There were visitors in my bed that didn't belong.

Nasty little critters with a nasty bite!

Just my bed.

Aaron got a pass on this particular agony.

They spent the night chewing on my arms, and hands and ear and back and on and on...

 

I've been to a lot of hotels in my life. Some five star and some at the definite lower end of the scale.

This was a 3-4 star rating hotel. The Shriners paid for our room.

I have to say quite emphatically that I will never ever go back there as long as I live.

Every one of my bites is swollen and painful and I just never ever ....

Why my ear??? Really? They nibbled on my poor ear!

I now know what it means to not let the bed bugs bite!

And yes, we made sure those critters didn't come into our house.

What a Difference...

 

What a difference a week makes. Prayer makes. Healing makes. Eating makes.

Mary's jaw is healing nicely. We get to stay the course. No surgery. Just continue with the soft diet and no falling!

No falling... hmmm.... that's a very tall order!

Even without seizures!

She's a Warrior girl.

Yesterday I looked out and she was on top of a chair which she had placed on top of a chair and was holding onto a branch to pull herself up into the tree.

She's a heart attack waiting to happen.

Last week she donned the fire gloves, opened the wood stove and attempted to add wood and paper to the fire.

She's going to give me a stroke.

She's fearless and has no sense of danger.

Parking lots scare me silly when she's around.

She doesn't realize that her drop seizures make every set of stairs, ledge, stool, jungle gym or any other high place a danger-zone. 

She's carefree.

Just don't be fooled by her cuteness.

I'm going gray by the day!

In the meantime... 

We've been waiting for Aaron's arm to become infected.

How often do you hear those words?

When your arm becomes infected - call us.

Not if. But when.

Well... it is officially infected.

Pus oozing and a lot of pain for him.

Poor Aaron.

So next week we are heading back to Philly to remove the fixator.

He will be so happy to get that thing off!!

We will be so happy to get that thing off!!

Then we will finally see what Aaron's arm can do.

He's been diligently bending it every day.

The skin is healing. It's not completely closed at the elbow, but close enough that we are no longer worried about it ripping.

He has good range considering everything that happened, and while he is under anesthesia they will work for more.

He's come a long way and we are beyond grateful.

What a difference a few months make. Prayer makes. Healing makes. Therapy makes.

God has been so kind to two of the toughest kids I know.

Thank you for praying.

Please don't stop.

Hard Pressed

 

Brutal.

The last five days.

Don't be fooled by the cute smile behind her faceplate helmet.

Fractured jaws HURT - especially when eating.

And with Mary's Keto diet - adjusting her diet to a soft diet with foods she WANTS to eat and doesn't have to chew has been a huge, horrible, exhausting battle.

Her Keto diet isn't an on again off again diet. We can't just stop or cheat. We have never ever cheated in almost three years on this diet. The last five days have demonstrated how fragile she is when her ratio is off or when she stops eating. The seizure storms invade. Seizure storms make it hard for her to swallow. Which send her even deeper into the storms. We have had to rescue her over and over.

Eating has been miserable.

For everyone.

We have resorted to begging and bribing and shedding quite a few tears (me). 

We have adjusted her diet, worked with the dietician, tried this, tried that and beat our heads against the wall quite a few times.

Last night and this morning the battle was a bit less. She still stormed and struggled to swallow but it wasn't the one to two hour battle it has been in the last five days.

We are praying that it's going to be easier as the days go by.

Friday we go back in and get x-rayed again. IF she is healing well and the jaw is lined up correctly, then we just stay the course. IF the jaw is not healing or not in proper alignment... then... 

Okay...

I don't want to think about it.

They chose this conservative route in hopes that the jaw would heal correctly.

They chose it because Mary's seizures make it difficult to consider immobilizing her jaw. 

I'm grateful for that choice.

We are desperate for it to be the right choice.

Please pray that the fractures in her jaw heal correctly.

Pray Little Girl can heal and get this behind her.

I've struggled for the last five days emotionally. Why? She was doing so well. She barely falls anymore. Why when she does fall it is so brutal that she fractures both sides of her jaw??  

I realize there are no answers and so I cling.

Psalm 118:5 "When hard pressed, I cried to the Lord; He brought me into a spacious place.

What hope.

Though pressed in. Overwhelmed. He gives space. 

Thank you for lifting her and us to the throne.

Don't stop.

The Best Laid Plans...

On Monday I took John and Aaron to Shriners in Philly. We met with three doctors and when I got home I sighed with relief. 

Aaron's next surgery will happen when his fixator starts to break down the skin. A month. Two. Until then we get a break.

No hospitals.

No distractions.

I can get some desperately needed work done.

Well the best laid plans of mice and men....

Yesterday Little Girl did a face plant into the floor and cut open her chin.

She cried hard.

Mary doesn't cry hard unless she is seriously hurt.

She refused food. For a child on Keto that's dangerous. She started tanking. Seizures piling on top of each other.

We began wondering, wondering if her jaw was fractured.

So off to the ER we went.

Okay. Valet parking at the ER has always been one of the nicest features of our hospital. I can pull up with a child who is in distress and they will go park my car for me.

UVA no longer has valet parking. COVID. Really? A medically falling apart child and I have to go park in the parking garage and walk back over. Carrying bags and holding on to a seizing child. 

Breathe. Bite tongue. One step at  time. Thankfully an orderly came with a wheelchair. Thankfully.

X-Rays. X-Rays again. Stitches. Rescue meds. Finally eating although with great care.

They sent us home with a pat on the back and thumbs up for clean X-Rays. No fracture.

This morning she had status. We chalked it up to the trauma of the last 24 hours. After she recovered, she ate but carefully. Guarding her jaw. 

We started breathing. Feeling a bit like we were over the worst.

Then the phone rang.

A resident error. The X-Rays showed fractures on both sides.

And so back we came. 

CT Scan and then waited.

All day.

UVA is a teaching hospital so one by one each resident from every department that is even remotely connected has to come in. Examine. Ask questions. Evaluate. Then leave.

Mary has been a rock star.

She did not complain, fight or even barely whimper last night when they put in the stitches. She didn't even throttle the doctor when the Novocain wore off and she was able to feel the needle stitching her skin together. She just grimaced and whimpered to let them know she could FEEL the stitches going through. 

She has not complained that her jaw hurts. 

She has not fussed about being stuck on a stretcher all day.

She has cooperated with all the X-Rays and CT scans.

She has been sweet to everyone coming in and prodding, poking and bothering her. All three thousand residents who have poured through the door.

And finally they are letting us go. No surgery for now. Praise the Lord.

Watch and see. Soft diet. Give it a week and see how she is doing.

Praise the Lord.

A long long day in the ER...

A tired little girl. Sore. Fragile. But homeward bound!

Look What I Have Given You

It was Sunday morning during the worship service.

We were singing the tried and true Christmas carols and I was lost in the joy of worship. 

Suddenly little arms wrapped around my waist and my helmeted Little Girl pressed into me singing her version of the carols. 

I looked down as she clung to me, singing, worshipping. 

I looked over at Aaron who was diligently trying to sing the words. I peeked further at John who caught my eye and grinned at me.

Both boys in their very ugly sweaters.

Little girl in her 'ugly' dress.

It was one of those moments.

The reality of how blessed I am.

From the outside our world seems insane. 

And most days I would concur.

But on Sunday, for a few moments, I saw my three littles as the gifts they are. 

Precious.

A sweet moment. A God moment.

A whisper to my heart. Look what I have given you.

I came home after church and saw a bag hanging on our porch swing.

I thought maybe one of the kids put it there. Probably Mary. Filled with junk toys. 

Or trash.

I sighed as I went to get it. 

It's always something, right?

Mom's job is never done.

It wasn't junk. It wasn't filled with trash. 

It was homemade bread.

From our neighbor.

And an envelope.

With money inside.

Money to be divided between Preslley and a child of my choice on Reece's Rainbow.

I stood there so deeply surprised, blessed, encouraged.

Another God moment.

I had no idea my neighbor even read our blog.

She didn't just read it - she was moved to do something.

And the Lord whispered again.

A reminder. A word of encouragement.

Through a kind neighbor wanting to make a difference.

I put half the money in Preslley's account.

And I picked the babe at the very bottom of the tree, Amelia, and gave her the other half. 

And I whispered a thank you.

And a prayer for two little babes who need families.

In our insanity - He whispers His presence.

Look what I have given you!

Emmanuel.

God with us.

It's what Christmas is all about.

----------

I shared this on Facebook but am sharing it here too...

Here is Ben singing, Behold the Lamb

If you feel moved to action - There are 74 babes who have not reached their 1,000 goal on the MACC tree.

CLICK HERE to go see them.

Pray, give, advocate, adopt.

Thank you!

Not Just Preslley

 This morning I went to the MACC Tree to see how my boy was doing.

He has 755.00 in his grant account. 

Go Go Preslley - He still needs 245.00 to read the $1,000 goal. Thank you to each of you who have given to help him get to his goal!!

But the saddest....

He is on the wrong part of the tree. 

He needs to be at the TOP under MY FAMILY FOUND ME!

Five babes are up there this year.

The rest - all the faces - they need Mamas and Papas.

Go look.

Go see.

Don't turn away.

Yes. I know. They all have some kind of special need or another.

But scary words do not define a child.

They do not define Preslley.

And they do not define the rest of those babes.

Even if you can't adopt... go look.

Find a babe. Donate a bit to help them.

Find a babe. Share their face on social media.

Find a babe. Pray for them.

Find a babe. Tell your friends in church about him or her.

Find a babe. Talk to your spouse. Your kids. 

Consider!

Just consider.

Not just Preslley is on that tree.

And all but five need someone to love them best of all.

MACC 2020

A Relentless Beast

Last night Mary had two status episodes. Twice we were ripped out of our sleep to alarms and a seizing child. They are heart-stopping, brain shocking events. 

We are torn between trying to get to her, pulling rescue meds and shutting the stupid alarms off. 

The watch she wears is connected to an iPad which triggers the alert. The alert is sent to our house phone and our cell phones. 

Everything goes off. Everything. 

And nothing will stop until you respond to each one. 

And if you don't respond fast enough - they go off again. 

And if you forget to remove the watch from her seizing arm - the alarm will trigger again. 

That happened last night. 

Many times. 

By the time we have her stabilized, rescue meds in her - we are both in full-on post alarm traumatic syndrome. All we can do is just stare at each other.

This morning I am a mental wreck. Exhausted. 

She's been doing so much better during the day. If not for nights like last night we would be throwing parties on how well her day seizures are going.

Nights like last night are vivid reminders that our little girl suffers from a beast that is relentless. It body slams her to the ground just when we think we have it tamed.

Why am I sharing this?

Because my MACC pick this year is a little boy who has epilepsy.

He takes meds all the time to keep his beast tamed.

I have no idea if those meds work or not.

He has speech issues.

He has orthopedic issues.

He has other issues.

He has NO ONE fighting for him. NO ONE getting up and rescuing him in the night. NO ONE caring for him. 

He is one little boy among so many out there but HE MATTERS.

He hasn't reached his $1,000 goal. We are still $405.00 short.

But more importantly - he doesn't have a family.

YES. Epilepsy can be scary. It can traumatize. It can cause sleepless nights and post traumatic stress syndrome.

But... Mary would not have survived.

Not over there. Not the way her epilepsy was progressing.

I am sharing Preslley with you because that little boy is battling the relentless beast alone.

Alone.

I don't know his prognosis.

I just know that right now he needs us to share him far and wide so that somewhere out there a Mama and Papa will see him and will stop long enough to hear the Holy Spirit whisper - He's yours.

Go.

Go.

Please share.

Please give so that money is not a factor in the decision.

Please please please pray for Preslley.

Mary's Christmas

 Did you know that if you say Merry Christmas that it really means Mary's Christmas??

And that pretty much sums up who is in charge in our house!!

She cracks us up. Every single day.

She also has added a ton of gray on my head.

Notice how the boys are watching her holding the kitten. Little girl isn't the gentlest, yet our cats never complain.

Surprisingly, they will climb into her lap when she is sitting on the floor. She is roughly affectionate and they are none the worse for the wear!!

We were expecting for Aaron to be heading back to Philly in a week or so but his doctor has decided that he wants to wait. So no Christmas-time surgery. It's good and bad. Good to have a respite from travel and that stress, but poor boy has to live with a cumbersome fixator on his arm for the next 6 weeks or more. He just shrugged his shoulders when I told him. 

I have to share this picture. Papa and his three littlest.

Thanksgiving wasn't quite canceled for us. My extended family usually descends upon our little house on the hill and we have a merry time together. But COVID dampened that merriment. 

Instead, we are having just our immediate family and our amazing aide and her children. This is the aide who comes three times a week and helps us prepare Mary's food. Without her I do not know how I would have survived doing Keto for 2 1/2 years!! She is just like family to us as they are here so much. 

So we are planning on a Merry Thanksgiving anyway. 

Of course Little Girl doesn't care much about the Merry Thanksgiving - she's waiting for Mary's Christmas!!

-----------------------------------------

P.S. thank you to all who have invested in Preslley - giving, praying, sharing.

His MACC grant account is at $545.00 which means he's a little over halfway to goal!!

PLEASE WON'T YOU GIVE? AND SHARE?

His link is HERE

If you are on Facebook - share his face. Tell your friends about a little boy alone who so much needs and deserves a family.

Last year, for those who remember, my MACC baby was Conrad.

I wrote about him and that post was shared and shared and shared again.

A Mama saw that post. I wrote the story HERE. 

The Holy Spirit used not only my words but the faithfulness of those who shared to reach a family who was LOOKING TO ADOPT.

Conrad's family is so close to getting over there. COVID slowed them down but they are moving forward! I cannot wait to see him in their arms.

Preslley needs those same faithful to give and share and pray.

Please!

Yell, give and pray far and wide for a little boy alone across the ocean.

If you are interested or have questions about adopting him, please reach out - covenantb@yahoo.com.

PRESLLEY

Scary words do not define him. He is so much more than a list of diagnoses.

A Bit of a Breather

Sometimes you just have to share a cute picture...

Little girl is heading for church...

One Great Wolf Lodge headband, one Minnie Mouse, One big pink My Little Pony Build a Bear, one big white My Little Pony Build a Bear and her photo album! All clutched in her arms - not gonna let go of anything!

We just don't even argue... she's happy and that's all that matters!

Aaron is doing amazing!

We do therapy on his arm but HE ALSO DOES HIS OWN THERAPY. He is constantly moving it, stretching it. 

 Dealing with the fixator all day is rough. It limits him so much but he just takes it all in stride.

He continues to blow us away with his attitude. 

He goes back for the third round in a few weeks. We are still waiting on surgery dates. 

While we have this short breather, I want to share Preslley with you!!!

Each year we choose a child on Reece's Rainbow and work to raise $1,000 in their grant account and advocate for them to find a family.

Isn't he adorable???

Look at his big eyes. Mama!! Do you see those eyes??

Preslley has epilepsy.

Just like Mary.

He has some orthopedic issues.

He also has speech delay. His profile says he doesn't talk.

He's just a little guy. Four years old. 

Epilepsy can be easy - take some pills and never see another seizure... but it can also be crazy hard. We live the crazy hard.

Whichever kind Preslley has - he needs to be in a family who can care for him, advocate for him.

Mary would not have survived long over there with her type of epilepsy. She was on the road to ruin. The amount of seizures she was having when we adopted her was insane.

She was a shaky mess when we brought her home. 

We have battled for three years to get her stable and she is finally finally at a place where we can see a light. She still has rough times. But she's so much better than she was when we carried her out of that orphanage.

Yes. She has been hard. Harder than anything we ever anticipated.

Yes we have cried many a tear and wondered what we have done.

But she would not have survived over there.

And I could not imagine our lives without her.

I have no idea what kind of epilepsy Preslley has. I can't give reassurances about his laundry list of issues.

I just know that the little guy needs a place to call home.

To ease the cost of his adoption - I am raising $1,000 to Preslley's grant account.

Will you help me?

It's easy. Just donate 5.00 or 10.00 or 25.00 or 50.00 or even more.

Click HERE.

If you donate 20.00 or more you will get Preslley's ornament to hang on your tree. 

Preslley is just another orphan across the ocean with a long list of issues and diagnoses.

At one point in their lives... so were these three.

Words on a paper do not define a child.

SEE PRESLLEY!!