Tuesday, March 18, 2014


"Just a reminder to continue to give treatments as prescribed by Alexis' doctor. They will... uhm... Well, they'll help prolong her life."

She called from the CF clinic in Dallas; just a routine reminder. I'm sure I wasn't the only one on her list. It wasn't so much what she said, but the way she said it. That pause like she knew what she was going to say would bring up buried emotions for me. Like she knew those words, "prolong her life" meant that my daughter's life needed help in that area. It stopped me in my tracks that morning and her "uhm" rang in my thoughts the rest of the day.

I knew that feeling. That ache.

I had never heard of Cystic Fibrosis before August 16th. I never knew anybody that had it, never learned about it in school, never had a reason to Google it before. Her pediatrician called me sounding somewhat panicked. We were supposed to have an appointment that day, but we rode to Dallas with Micah for a job instead. I postponed it. I shouldn't have. I picked up the phone to hear that kind voice start with, "I didn't want to tell you this over the phone, but I couldn't let it wait any longer." She said her newborn screening came back positive for CF. She said we needed to do some other testing to make sure and that she was sorry. She choked back tears as she was clearly dumbfounded "because of Ben's diagnosis." I told her I didn't know what CF stood for and I certainly had no idea what it was. "What is that? Like a bad cold or something?" She explained some aspects of it, but I Googled it on our drive back.

Micah got it right away. It took me a while. I really didn't understand. Maybe it was denial. You bet your sweet bippy I questioned every last morsel of God's plan when it really hit me. It took a week to get the sweat test results back, but I already knew. People told me not to worry. "It says those newborn screenings are usually wrong." But I knew. I still cried, though. It still hurt to tell people.

I knew about Down syndrome.  It didn't feel like it at the time, but I knew more than I gave myself credit for. I still ached, though. It's still hard to know Ben needs extra help. It still sucked to tell people. So, in a way, I already knew how that ache felt before August 16th. I had felt it before.

I've written about this in the past. This saying, "God doesn't give you more than you can handle." I'm just going to reiterate that it's a load of crap. I hear this saying a lot too; "I don't know how you do it." Come on, people. You don't know how I do it because you've never had to. People said the same thing when Micah was in the sandbox. I was a single mother with a son with Down syndrome. It looked impossible. It wasn't. God gave me more than I can handle, even then. But life still had to go on. You probably don't think so, but you would do the same thing. Life doesn't stop happening just because it gets hard and God doesn't stop loving just because we think so. Our agenda, our feelings, our actions toward others (more on that one another time) - all things that God is working hard to shine through.

Life goes on. God's still there. Love wins.

Just remember that.


  1. Phenomenal. Amber, what a gift of Faith you have been given. You are amazing. I wish I could hold half of a candle to you.

  2. I salute to you for being so honest in your feelings. I go through them too because of learning disability that I ve and is not officially not confirmed. it is a hereditary learning disability. Well I don't want to talk about it. My family is going through a lot because of this and I understand how you might be going through all the stress. You are really a great person. Thank you