“All of my life, in every season, you are still God and I have a reason to sing, I have a reason to worship.” – The Desert Song (Hillsong)

Today has been one of those days where even looking at Tori as I hold her makes my heart break. 

I study every detail of her perfect, beautiful face so that I can never forget her features. I gaze into her stunningly gorgeous eyes and plead with God to let me look into them for the rest of my life. I hold her tightly, hoping that I can hold onto her forever.

I beg Him to restore her, to remove this horrific disease from her body and heal her brain. In desperation, I cling to her and try to savor every moment, knowing that there may come a day when I cannot hold her any longer.

And strangely, it is in those moments of desperation that I find it easiest to pray. 

Often, during daily life with Tori, I am left speechless, unable to pray for my precious daughter. Words fail my broken heart and in those moments I am so thankful that not only are tens of thousands praying for Tori, but the Bible tells us that the Holy Spirit intercedes for us (Romans 8:26) when we don’t know what to pray.

I cannot imagine losing her, even though I know that without God’s intervention we will. Medically speaking, it is a fact.

But, I also know that we serve a mighty God, a God who raised people from the dead and healed the sick. The same God who created everything in the universe loves me, loves Brennan, loves Tori. He spoke the universe into existence and there is nothing He cannot do!

Nothing can separate us from His amazing love. Even when we don’t understand His plan or why He is allowing things to happen, we can rest assured knowing that His love for us is unending!

The joy we have because of the love of Jesus (and the love He is showing us through all of you) eases our pain and allows us to smile and make the most of our time with Tori. Both the joy we experience and the grief and pain that creep into our hearts at times leave us speechless, and it is then that we feel the Lord’s presence the most.

And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. And the Father who knows all hearts knows what the Spirit is saying, for the Spirit pleads for us believers in harmony with God’s own will. And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.

And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.
(‭Romans‬ ‭8‬:‭26-28, 38-39‬ NLT)

Please continue to plead with God on Tori’s behalf. Pray for complete restoration and a miraculous healing here on earth! 

Pray that the mutated gene that Brennan and I possess would vanish so that we can continue to build our family and Tori can have brothers and sisters without fear of Krabbe.

And please pray for the other Krabbe families…we are all in the same unimaginable and undesired boat. We don’t just want a miracle for Tori, but for all of the living Krabbe babies as well. 

Our God is able!