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Well, tomorrow (Monday) brings labs for Dempsey. Jake will take him in an effort to give me a break. I love that he does that.

Tuesday brings ANOTHER lumbar puncture (with sedation), another infusion, the beginning of 966 consecutive nights of pill-taking, and a 5-day series of steroid pills.

I am praying that the research team has decided to honor my demand of ordering that secondary genetic test (NUDT15) so there is a vial ready at his appoinment tomorrow morning. It would be in their best interest!

Pray over Dempsey. Pray against negative side effects/ happenings. Pray protection over his body. Pray protection over his emotions. Pray protection over his mind. Pray wisdom over the nurses and doctors. Pray God's guiding for me about this genetic testing journey. Pray that God will not choose to make an example out of Dempsey. I am not interested in my son being the guinea pig or reason that doctors wake up and change their ways. Pray for my sanity. Pray protection over our parent hearts. Our hearts are being wrung out and we're simply tuckered out.

Tonight, while at church, I was reacquainted with the scripture passage Genesis 50:20. It goes like this:

You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

This is what Joseph says to his brothers after the sold him into slavery because they were jealous of the favor he found with their father. Once sold into slavery, many trials ensued. However, God's plan had Joseph landing a career with the ruling leader of Egypt which eventually put him in a place of pardoning his brothers and providing for them. Read Genesis 50... it's an incredible passage.

Anyway, tonight I decided to claim this passage over Dempsey's journey. On IG/ Facebook I posted the following:

I claim this for Dempsey's current season! God, I believe, through Dempsey's journey, many lives will be saved (protected). Joseph endured many trials... May the trials I face prepare me to save the lives you bring to my life's door. Amen

Pray with me that God honors this claim and, in fact, uses this journey to save many lives.

A favorite saying I am read on this journey is this:

If we saw what God sees, we would ask for exactly what God gives.

Is that not the most poignant thought?! I mean, no duh... if I knew what God knows I would want whatever He was going to give me.

Alas, this journey of trusting what we cannot see or know, blindly, is exhausting. It's scary. We know God has shown his faithfulness all along this journey. He has used YOU to support our family in various ways the entire time. Yet I find myself struggling with doubt and control issues. I KNOW I'm not in control... but I still want to be, desperately. Why is it so hard for me to remember this- that if I can look back and see God's faithfulness, that means God was already out in front of us on this journey- because what was once the future became the present and eventually the past and God was in all of it. Perhaps it's because I'm weary. Perhaps it's because I'm human. Perhaps it's the very real effects of PTSD. Oh, Lord, please help. Amen