Thursday, March 4, 2021


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.

Monday, March 1, 2021

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???


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.


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!!