"I just want a healthy baby." When asked if they want a boy or a girl, that's most likely what new parents will tell you. It's commendable. It's true.
But what do you do when that doesn't happen?
At this very moment, Alexis is laying on my chest. Her dark, wispy curls are tickling my nose. She smells like Johnson & Johnson goodness and she's just recently found out her fingers are good for sucking. She has no idea.
My heart aches. My body hurts. My eyes are swollen. I've cried for 48 hours.
Benjamin's secret was easier than this one. He's different, yes, but he's healthy.
Alexis is sick.
Alexis has cystic fibrosis.
There is no cure. Those are the words I can't stop repeating in my mind.
Down syndrome was easy. Ben will be different. He'll struggle with things that most people don't.
Knowing Alexis has a disease that will eventually take her life?
Oh God, it's completely unbearable.
So what do you do when your commendable wish for a healthy baby doesn't come true? Well, your prayer life improves. And you cry. You cry more tears than you thought you had. And you do what we've always done - take it one day; sometimes one moment at a time.
A lot of you will read this in disbelief. It probably seems like our family has walked through things that don't make sense. Don't worry; it doesn't make sense to us either. Some of you will blame God. That's okay. Some of you might be angry on our behalf. That's okay; I'm angry, too. None of you will know what to say. That's okay; don't say anything.
Just be there. Cry with us. Pray for us. Don't leave us alone. Be our village.
Jesus loves my babies far more than I do. I have to believe that. I have to hold on to the truth even when I don't want to. I have to trust that He knows what He's doing. I have to pray for a miracle while still understanding that the miracle I want may not be the miracle He gives me.
I want to know she'll outlive her parents. I want to know she'll be there for her brother.
I want to keep her, dammit.
This doesn't seem fair, does it? That's okay. It's not.
God is still God. God is still good.
Where there is fear, there is faith. Where there is heartache... there is hope.