the ugly beautiful as plans come undone...

I knew these last two weeks would be tricky for our girl. Jerry and I were so thrilled when Miss Courtney was showing us so much personality these last ten days.

Such joy. Such wonder. Everyday an adventure in what Miss Courtney would do next.

She woke with a smile every single morning. She laughed with her whole self. She kicked and squealed like a newborn. She hummed and sang with such abandon.


I knew that I had to be vigilant and watch for any increased seizure activity, to be ever watchful for trouble which comes so quickly for our girl.

I prayed that we would see none. I prayed that things would go smoothly and this beautiful re-awakening would continue. No more Depakote. Less seizures, healthy liver and kidney function and more smiles.

Sometimes God allows a miracle to be worked to show us that he hears the cry of our hearts. We got that miracle for ten beautiful sweet days. It has been an absolute gift to know our daughter in this way. The pictures I got, the laughter I heard, the snuggles and the fits for trying to put on her shoes. All of it a blessing...even getting peed on...blessing after blessing...

Sometimes God decides that ten days is enough.

The seizures are back and they are fierce. They come quickly, swiftly literally taking my girls breath away. They scare her and make her cry before completely possessing her body, shattering my heart into a million tiny little pieces.

One minute...

Her hands curl in like a stroke victim, her arms raise like Christ crucified rigid as the wood he was nailed to. Her body rocks and pulses in a rhythm that is not normal.

Two minutes...

She chokes on her own phlegm, then foams at the mouth and her lips first turn white, then purple. Her bodies continues to rock as her feet curl in legs hard-lined and pulsating.

Four minutes...

She begins to try to vomit making a horrid retching sound because this one is hard and is forcing her to fight harder.

Six minutes...

Her shoulders finally slump and the arms comes down. Her eyes are rolling around in her head and her pupils are all black.

She tries to take a deep breath and all the mucus rattles in her chest. Her legs begin to relax and she flops in her chair like a fish trying to get back to the water.

Seven minutes...she coughs hard and it's filled with mucus. We suction her.

She hates being suctioned.

I hold her in my arms, shushing her calmly, telling her what a strong girl she is as tears stream down my face, my heart knowing that our re-awakening has come to an end.

I shake my head and whisper “I trust you Lord. She is yours” over and over again, not really believing it but knowing that if I say it enough times, eventually it will land hard in my heart and peace will follow...maybe.

There is no peace in this moment. I am struggling to find the blessing. There has to be a blessing, even at the hardest moments there are blessings.

Ann Voskamp writes in her book One Thousand Gifts (paraaphrased) "The dark is the holiest ground. God is closest to us, at work forging His holy will. The secret to joy is to keep seeking God where we doubt he is." We are supposed to lean into the ugly beautiful and whisper thanks for all things at all times.

Where are you Lord? What good thing exists in this moment? Where is the joy? Thanks for this? Are you here? Answer me!!!

My soul screams for answers my heart is not ready to listen to. This is painful and hard and horrible. These seizures are ugly and horrid and I can't make them stop. Nothing is making them STOP! This is her third seizure today. It's her ninth in three days. ALL  of them hard, difficult and costly to her energy level. She just can’t do it. She needs the drugs to block the seizures.

Questions are like ping pong balls in my head bouncing without rhythm or rhyme.

What does this mean God?

Why would you show us who she is without the drugs just to take her away again?  

Will I ever hear her laugh again? 

Will she ever fight me to put on her shoes again?

Is there ANY medicine that can help my girl?

What do we do now God? What do we do now??

This SUCKS!! I want to scream...a primal scream like a lioness protecting her cub. I want my feisty daughter back. I don’t want to drug her anymore. I want to see her eyes clear, her voice strong and her attitude stronger. I know it's there. I have seen it, heard it. She's there buried beneath all the pharmaceuticals. I want her back.

This is so not fair you hear me?? I did everything you asked and still we are here in this place of hurt and confusion.

I don’t understand. I don’t want to understand. She was doing so well. Things were looking up. It was awesome. I want her off the Depakote, yelling at me for washing her hair and spitting out her peas because she doesn’t like them...just like her big brother.

I know I need to accept that God’s plan is far better than any I can imagine, which is a damn fine thing because I have no idea what will happen next. I know that there is blessing evening the hard darkness, in the ugly beautiful.

"I trust you Jesus. I accept your plan. I hate your plan. I dont' understand your plan. I trust you Jesus. I accept your plan."

All I know is that this is damn hard, this “Eucharisteo” of accepting the good AND the bad...this is the most challenging part of loving my daughter. Acceptance that God knows what must be and I do not. This is the Jacob struggle and God has pierced my weakest need for control, my lack of faith, my wanting of normal...I wrestle and I hold on with everything I have. I am waiting for the blessing...please God let there be a blessing...I wrestle on and I pray with all my heart:

Lord your ways are not our are good...You are GOD, great and mighty. I trust you...I trust in you...I do not understand this. I want trust without doubt. I want me me in my unbelief...I am so tired of watching the suffering...even though I know it is part of a greater is redemptive and has purpose...I will praise you in this darkness because it is all I know to do. You are are good and the dawn will come once more. Please God stay with me in this valley once more. Stay with my daughter. You have chosen this for tonight all I can pray is “The Lord giveth and the Lord taketh away. BLESSED be the name of the Lord”.

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