Sunday, December 30, 2018

Being Honest

It's Sunday morning. A little over an hour ago little girl was snuggled next to me sleeping soundly. I was laying there thinking, praying and trying hard not to wake her up. She stretched a bit and reached for the covers so I reached over and pulled them up over her. She snuggled down again and I lay there in the dark watching her. Less than two minutes later I was hitting the intercom to let Rob know that she was in status. One minute she was snuggled peacefully beside me and the next she was seizing non-stop.

My heart hurts.

All the time.

Little girl seizes all day long. On good days our clicker reads around 40-60 seizures for the day with no status. On bad days it reads well over 100 and usually a status episode. I don't want to even discuss the worst days.

I show you pictures of her smiling and happy and it's easy to think that all is well. Our reality is a sister who is happy and silly one moment.

And seizing the next. 

She seizes all day long. No matter where or what she is doing.

An even though it seems we may take it in stride - they break our hearts. 

Little  by little. Seizure by seizure.

This Wednesday she is going in for surgery. She will be getting a VNS implant. It's a pacemaker-like device that will be put into her chest and connected to the vagus nerve in her neck. It will be programmed to send off electrical pulses designed to try to break up her seizures. They don't know how it works but for many it does. It isn't a cure. It is palliative. It will hopefully decrease her seizures but chances are it will not stop them entirely.

We are praying hard for the device to work well for her. We are longing for a drastic decrease in her seizures. 

It's Sunday morning. A little over an hour since we had to rescue little girl.

I'm being honest. I'm trying not to think about rescue or surgery or seizures.

Over the last few days I've been blogging about the MACC tree and 74 babes who desperately need families to fight for them. Yes. I said 74 because this morning another babe was found by a family!! Soon there will be one less orphan. That made me laugh out loud when I saw. 

MACC is therapy for me right now. It's a way to get my mind off hard things at our house. It's a way for me not to think about a surgeon cutting into my baby girl's perfect, unblemished skin. 

Will you help me in my therapy?


Go donate 5.00 or 10.00 or 50.00 or 500.00 to a babe on the tree and help get the bottom 55 over the $1,000 wall. Every one over is going to make me cheer in the next two days.

That's good therapy!

It's healthy and takes my mind off that hard that is coming. 

MACC ends at midnight New Year's Eve. That's two fun days watching 55 babes jumping the 1,000 wall. Mary loves looking at the babes with me. She doesn't understand the tree but she likes seeing all the Itty Bitties on one page.

CLICK HERE and join in the fun. 

It's good healthy fun!


  1. We have friends at church who had this surgery for their Son. It with cbd has made a huge difference. He's been seizure free for 18 months. Praying it makes a huge difference for your family.

  2. Surgery. That's hard. I understand a mother's heart is aching because of the scars and the whole process. I totally undestand it. Hopefully, the surgery will bring a difference in your lives. I wish it with my whole heart!

  3. Praying this works for your sweet girl. I donated to the MACC in honor of my sweet Natasha who is still stuck in a Russian orphanage due to the adoption ban that happened 6 years ago. No child should have to grow up without a family. I am praying for all the children on the MACC to find families this year. If anyone would like to find out more about the adoption ban they can watch Children of the State or To the Moon and Back on Hulu and Amazon Prime. We would appreciate prayers on these children's behalf that they not be forgotten and that they are able to find families that are allowed to adopt them.

  4. Praying that tomorrow will be a landmark day for Mary, and that all goes well and produces the desired outcome. If the thought of the inevitable scars is distressing - remember the brave Princess Eugenie who proudly displayed her scoliosis surgery scar as an inspiring highlight of her beautiful wedding! Hope your own little princess does well, and will also bear her scar as a badge of honor.

    Hugs all round-

    Susan in Kentucky


Loving words from kind people make our hearts glad!