Memory Loss, Permanent Deficits, Quality of Life, Mortality Rates and where God fits into it all.

Memory loss, language/communication problems, permanent deficits, quality of life, mortality rates.  Where is God when I am discussing these topics with my child’s doctor?

I’ll be honest sometimes God seems very distant, like he is just sitting back watching my daughter struggle through life without lifting a finger to help. Sometimes I wonder why Olivia? Sometimes I get angry why Olivia?

There are times when I just want to hide in my bed all day and forget what awaits me when I get up. A day full of worry and anxiety. Which doctors appointments are coming up? What needs to be rescheduled? Will she have the energy or the stamina to withstand the day? What new problems have come to light since we last talked to the doctor? What questions do I have that need to be wrote down?

Not everyday has those questions, but everyday is filled with questions like: Is this normal 6 year old behavior or is this being caused by epilepsy and its many side effects?

So where is God? 

Where is God when I’m discussing taking out a portion of my daughters brain? Where is God when I’m discussing permanent memory loss and communication problems at the age of 6. Where is God when I’m discussing her quality of life and there are no answers?

God is right there beside me. 

The only trick is I have to let him in. I have to believe that God loves her infinitely more than I do. 

It is true.

God loves Olivia more than I do.

That is by far the hardest statement to truly believe. I do believe it even though I sometimes struggle with it. If I did not believe I would have fallen into a lonely pit of despair a long time ago.

We live in a broken world. Our children are not exempt from that brokenness. Trust me I hate more than most how our children must suffer the effects of sin. However, there is one cure. Jesus. 

Only Jesus can fix our broken world.

Only God knows the details of how everything will play out.

While God knows the details, I do know this. In the end we win. Sin is defeated. I may not get to see how this plays out, but I am thankful for the small glimpses into the big picture I am allowed.

Olivia is at one of five hospitals in the nation that are equipped with certain equipment she needs to undergo testing for her rare type of epilepsy. Her epilepsy itself is not rare but the way it manifest and the age of which it has manifested is. Olivia is at the highest level epilepsy center that can be achieved with several doctors that are on national boards for epilepsy. Basically there is no where else she could go. We are at the best of the best.

How did we end up here?

God. 

There is no other explanation. God had his hand in this from the beginning. When Olivia had her BIG seizure. We requested to be sent to our states children hospital. That day it was too foggy to fly, and it would have taken the children’s ambulance too long to get to us, three hours to get to us and three more hours to get there. However, the other hospital (the one we are currently treated at) happened to have an ambulance at the hospital we were at, without a patient. It would take us less than 2 hours to get her there. So we agreed to have her sent there instead. How crazy is that?

Some may call it lucky chance. I call it divine intervention.

I’ve often wondered what Olivia’s purpose would be in this life, with the cards she has been dealt. Again, God has given us glimpses into that. We have been asked to take part of two research studies. One to help predict outcomes for future VNS patients so that parents won’t have to worry if this surgery will help or not. They will know before surgery (a luxury we don’t have) so that they can make a better decision. Another study to see how the VNS effects SUDEP (sudden unexpected death in epilepsy patients-a study we hope to never finish-). While none of these studies actually help Olivia or our decision process. They will help future patients. That is worth it. If through Olivia we can help save other patients and parents the impossible questions that we have to face. Of course we will do it. Because no parents should ever have to go into a surgery not knowing if it will help, make things worse or do nothing at all for their child. 

IMG_3986Olivia undergoing a test in preparation for surgery. She handles it all like a true warrior.

So where is God?

God is with me.

He is walking beside me through this journey. He hears my cry, my anger, my frustration. He carries my burden for me once I hand it over to him. Ultimately, he knows what is best, he is working all this pain out for good. It may not be the good I am desperately wanting, but it is being worked out for good.

I just have to let go of my plan and cling to his. 

 

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