What do I do when God disappoints…

This week has been a dream. Olivia has been off one of her medications. It has been pure bliss as we have watched her come back to life. Without that specific medication in her system she has flourished.

Where once it was like waking the dead, now she is up before the sun.

Where once she couldn’t pick out her clothes or get dressed by herself now she is doing both.

Where once she was taking daily naps after school now she is playing and being a kid.

Where once she dreaded school she now looks forward to it.

Where once homework was hours of tears for 10 minutes of work now it is done in 20 minutes.

Where once there was no energy to play now there are giggles from the other room.

Where once she only ate maybe half of one meal a day now she is eating 3 full meals.

All these changes and we have only been a home a week. Two weeks without this medication and I am seeing my little girl again , not the medication haze version. But MY girl.

It has been a dream. Unfortunately usually we have to wake up from a dream.

Along with these changes her seizures are back in full force. Having multiple daily. I don’t want to call the doctor with an update. I don’t want to look at new medication options. I don’t want to talk about adding that awful medication back into arsenal. I don’t want to watch my baby girl fade away again. I don’t want to watch her suffer. I don’t want to watch her seize. I don’t want to watch her fade away again. Yes. It’s worth repeating.

Yet. Here I am.

Throughout this whole process I have felt Abraham’s pain as he took his son up the mountain. But was he in pain? Was he desperate? Or was he so full of faith that he trusted God completely to fulfill his promise.

“Abraham said, “God will provide for himself the lamb for a burnt offering, my son.” So they went both of them together.” Genesis‬ ‭22:8‬ ‭ESV‬‬

God promised him that he would have more descendants than he could count, yet he found himself taking his only son up a mountain to be sacrificed. He trusted God so much that he knew he would provide. He knew God would keep his promise. Such faith.

God doesn’t disappoint or does he? Or do we believe we are disappointed when God doesn’t provide in the way we believe he should. When we aren’t believing he is enough.

Such as when Jesus raised Lazarus from the dead. Did his friends not seem disappointed when Jesus was “too late” yet in his perfect timing he did just as he knew he would and he not just healed Lazarus but raised him from the dead. The dead. Did you hear that? But healing didn’t happen in the way his friends expected.

“Now when Mary came to where Jesus was and saw him, she fell at his feet, saying to him, “Lord, if you had been here, my brother would not have died.”” John‬ ‭11:32‬ ‭ESV‬‬

This last week I thought we were here. This was it. Our Abraham moment. Olivia’s was off all but one medication and no seizures. I found myself cautiously optimistic in that all I had to do was surrender myself over, surrender to this process, surrender over Olivia to this process that was terrifying and could cost what I am so dearly clinging to, her life. Yet, it wasn’t my Abraham moment, the seizures are back, there wasn’t some miraculous healing, some sacrifice from nowhere to take her place and for a minute I was devastated. And that’s okay.

It’s okay to allow myself to feel that disappointment, it’s not okay for me stay there. To stay there means I’m not believing something about God.

So what am I believing? Am I believing God is good, that he wants to give me good things? In this disappointment am I believing that God is enough. That no matter what happens God is enough.

Steve Fuller says: If God is our greatest good, then what makes something good is whether it brings us more of God. So being healed of a sickness can be good because it can bring us more of God by showing us his power, mercy, and goodness. But not being healed can also be good since it, too, can bring us more of God by drawing us even closer to him.

So what do I do when it feels like God has disappointed me. When I didn’t get my Abraham moment or at least the one I thought I was going to.

I hold on. I hang tight. I remember that I can’t see the whole picture. That he DOES have a plan that is far GREATER than I can even ask for. I pray for God to quiet my soul. I pray for the strength to carry on. I pray for peace. I pray. I pray and pray some more

I pray for more faith.

Dear God, help my unbelief.

Why? Because God is enough. He is enough for me. My greatest joy comes from knowing him.

Did you hear that.

My greatest joy comes from knowing God.

Not Olivia’s health, not our circumstances, not knowing about God. But truly knowing God.

“I made known to them your name, and I will continue to make it known, that the love with which you have loved me may be in them, and I in them.”” ‭‭John‬ ‭17:26‬

Dear God help my unbelief.

111 days and a secret so simple.

111 days.

One hundred eleven days.

What do you do when life as you know it is numbered. When there is a real timeline, and it ends on a specific date.

What do you do with this one life? This one chance?

Do you keep doing what your doing? Do you do a 180 and change everything? Do you beg God for more time? More chances?

What do you do?

The hourglass is slowly pouring. 2664 beads of sand. One by one the drop down. Once they run out you can’t get them back.

Ever since January 2017 I have been acutely aware that time is a gift and life is too short. However, after setting a date for a surgery that could change everything. I am even more aware of just how much of a gift time really is.

We talk about the positive of surgery because that is the outcome we hope and pray for. What we don’t talk about is the consequences of surgery:

  • Memory loss-permanent, she will learn coping mechanisms to overcome this but it will always be a struggle.
  • Loss of verbal IQ- spoken and written language will always be a struggle. She will lose some IQ points, we don’t know how many or how severe or if she will gain them back.
  • Personality-We have no clue if her personality will stay the same or be completely different for better or worse after surgery and there is no way of knowing.
  • A stroke during surgery than can render her unable to communicate.
  • Death- while it’s a minuscule chance, this is still brain surgery and there are no guarantees in this life.

There is no way of knowing any of this. We do know that the first 2 things will happen whether we do surgery or not. They will happen slowly, as she continues to have more seizures, more seizures that constantly put her life in jeopardy.

So what do we do with this gift of time we have been given. This gift that we know exactly how many more days until our lives could change for the better or for the worse.

  • We celebrate
  • We celebrate the time we have.
  • We celebrate the small victories.
  • We plan.
  • We plan for the good days to come.
  • We plan for the bad days to come.
  • We plan for a future.
  • We make adventures
  • We create a bucket list.
  • We accomplish that list so that even if she isn’t able to enjoy these things later, she will enjoy them now.
  • We create lasting memories.
  • We enjoy the small moments
  • We relish the big moments
  • We take pictures…oh so many pictures
  • We stay present
  • We soak it all in.

We soak it all in. The good, the bad, the ugly we cherish it all because in the end, it’s all those little moments that make up the big moments.

So you want to know the secret?

The secret is simple. These are things we should be doing anyway. The only difference between me and you, is that I am acutely aware of a timeline, but even so that timeline could change in the blink of an eye. Just like your life could change in the blink of an eye.

Nobody is guaranteed tomorrow.

So enjoy life. Enjoy the good days. Enjoy the bad days. Enjoy the ugly days. Take that vacation. Make time for family. Say no less and yes more to the things that bring you joy. Say no more and yes less to the things that drag you down. Hold your loved ones a little closer. Give others grace and give it to yourself even more. Love always.

Throw out the numbers, throw out the timeline and just enjoy each day as it comes. I know I will be.

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