Wednesday, July 09, 2008


Today was a long day. We had an appointment with the neurologist, it went okay. What can you say other than that? My daughter is ill, I see progression, her seizures are getting worse, and we have to see a very specialized doctor. He doesn't think her "episodes" are seizures. If they aren't they are movement disorders and there isn't much to treat those. I just want these spells to stop. They are owies and as Mommy it is my job to make that better. I can't do it. No matter how hard I try I am not able to make it better.

I have spent the last few days feeling empty, I felt like God was not beside me. I looked for Jesus everywhere, even in the Word, and was lost. I just felt so far, far away. And then just like that my Father reminded me he is right there. We have crossed paths with a hospice nurse (those people are angels on earth by the way) who took care of sweet, sweet Angel Eli. She is actually going to be our nurse when our own hospice nurse takes a much deserved vacation. She knows the path we're walking, how lost and confused we feel, how frustrated, blessed, all of it. GOD IS SO GOOD!

Right now it is 10pm, Marie and I are up. She can't fall asleep because she's having one episode after another. I am tired. I want her to have peace in a broken body. It's futile here, but I know someday when Marie stands on the "coast of somewhere beautiful" she will know such peace. I just wish I could make it better for a little while.

The wheat is getting closer to being ripe, it's golden but still a little too green. This weekend hopefully we'll begin to bring our harvest in.

I'm going to try to get this baby to bed. Since I know that I have no control and it is out of my hands I find refuge in the Word. Tonight this brings us peace, may it do the same for you.
Psalms 5:11
But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you.

Much love-


Tamara said...

Oh my sweet Shan, how my heart breaks for you... I wish from here that I could reach into the computer and hold her for you while you take a breath! I know, I know what you are enduring, fight the good fight, do not grow weary in doing what you are doing... your sweet angel knows your touch and it sooths her soul even through these evil episodes! God is good, He has not forsaken you, run into His arms and rest your weary soul. I will pray for a restful sleep for you tonight. You are loved Shan! You and your special Angel! Tam

Anonymous said...

Shan, as always my prayers are with you and your family. Please let me know if you need anything, even if it is just some company, or maybe a punching bag! Much love to you all.

Jenn Williams

Michaelene said...

I'm heartbroken and in tears, I wish I could be there to help you. I'm sending all of my strength via Prayers. God is doing His work through your Mommy hands - you are all the comfort Marie could ever want for!
Praying and giving Praise for He is so close to you, you just don't notice that he's carrying you.
Please update as you have time.

Renee said...

You do make it better. You, and Luke, and Josie are Marie's "coast of somewhere beautiful".

Sometimes words of encouragement can come from weird places. For some reason, I always heard in my head a quote from Finding Nemo. In the words of Dorie: "Just keep swimming."

Back stroke, freestyle, doggie paddle if you have to Shannon, but just keep swimming.

Miranda said...

You amaze me. You remind me why we are here, and all the small things that seem to matter so much, but are pointless. I have two daughters, 4 and 2. I can not imagine going through what you are. I look at them, and try and imagine the pain you must feel, and i cannot fathom it. It must be true, God deals out his mercy to those who need it. I pray God gives you doublefold. I pray for a miracle. I can't wait to meet you and little Marie someday. Keep your head up, and know that through your struggles you are giving others hope and strength. We ARE here for a reason. We are here for each other.

Holly said...

Shan, my heart goes out to you and Marie. My prayers will be faithful for you. Even in your darkest hour God is with you. I pray for peace, a break for Marie, and you. It's a horrible disease, a horrible one. I hate that our sweet girl has to go through this, God gave her to a beautiful mother, a strong soul, despite your pain and hurt- God has broad shoulders, let Him be with you and help you carry that baby.
I am here for you, praying for you, loving you and Marie- Bless you.

Laurie said...

Continued prayers for Marie and your family. It is so hard to see our kids have a hard time with anything and to know they are in pain or scared and we can't do anything just breaks a Mommy's heart. Remember though, that your comforting touch and words do make things better.