Taraz, we have spoken about spirituality and our families before, dont know if you recall but I have a daughter with a rare muscular dystrophy, hydrocephalus, and the diagnosis is terminal. It sucks but they told us it would be worse, and that she'd die the first day we met her.

She didnt. She is 2 and a half. She is amazing. She is struggling, and has her difficulties and set backs and medicines, and limitations, but she is awesome.

Parenting is hard, not least of all because of the vulnerability you have in your heart once you decide to become a parent. We are vulnerable because we put our hearts out there to love someone, this child, my child, your child, whoever, and the truth is we dont know what God will give us.

Days, weeks, months, years? Nothing is guaranteed. I know most people with typical kids, myself included before our second baby (Lumina), feel my kids are going to live a long healthy happy life, but that is a blind assumption, not a promised reality.

I hope and pray that your girl gets all the medical skill available and that those care givers will use all techniques, ability and skill to properly help, diagnose and heal your baby. I hope she is perfectly healthy, happy, and that she lives a long fulfilling life.

But more than that, I hope and pray that you and your family would have time with that child to love and cherish, and to convey that love to her in this life. I also pray that Jesus would be with her, ministering to her little heart, giving her courage and strength to overcome.

I pray that she would know she is deeply loved. And that you would find some hope in the biblical assertion that God is real, and loves your daughter deeply, and that he is working even terrible things for beauty, and goodness.

One more christian concept that has helped me with my daughter's health and condition is this. Psalm 139 says, God knew us all since before we existed, and stitched us together as we are, knowing all the days of our lives before there were any. That combined with my faith in God's love for us, tells me that he would only put us through what we are capable of overcoming. I apply that believe to my daughter, and it makes me recognize what a warrior she is, that she is a soldier of God, who God hand selected to be this special child, who struggles and calls attention to big issues like this conversation. Topics like, life and death, God and afterlife, what makes life worth living, and how long does life have to be to be worth it? All these questions only get asked when someone we love is struggling, and in that way, struggles and trials can be viewed as a gift because it shakes us out of our complacency about the fragility of life. The need to cherish each moment, and the reminder to rest in gratitude for what we get, no matter what we get.

In my hardest times that believe, that God loves us and is working all trials for good and glory, puts steel in my spine and I hope it will you as well.

I trust his plan even when Im terrified because I believe he is real, and that he loves me and my family deeply. I hope that does something for you.

God bless, in Jesus name.