Friday, August 16, 2013


Written 8/9/13

"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.


  1. You are right. I have no words just tears to share with you. God is still God. God is still God. God is still God!

  2. I have never met you but I will be in prayer for you and your family. God is in control
    even when we can't see it. God Bless you and your wonderful family.

  3. Amber I just read your last post I cried{still am]. I wish I could take each of you in my arms & pray,cry w/ you. Heaven is closer every day Brenda Gatti

  4. May our God answer your prayer and heal her, if not I ask God's strength to take you through this ordeal. I will be praying for you and your baby and the other little one.

  5. God is still Good. This has been said alot the last few weeks in our family.
    I will keep you and your little one in my thoughts and prayers. I can't imagine all you are processing right now and dealing with. But know, that you have one more praying with you. ♥

  6. They thought my youngest child had that so I know how you feel..But THANK GOD he didn't..You are in my prayers..Enjoy every second and make golden memories,

  7. Wow. I will be praying for you guys daily. Wow. God loves them more than we do ... thats good.

  8. Hugs and prayers coming your way!

  9. I have nephews with CF... They are 1 and 5.... The research and treatment of CF has come a long way in the pasy 20 years and will go much further in the next 20... There is hope! Not hope as in a wish but hope as in I am confident in God..

  10. Cf is a terrible disease and while they have no cure for it today they are making leaps and bounds of progress over the past twenty years and will continue to do so. While it feels impossible to do now, and is always easier said than done keep ur chin up, pray hard ,and enjoy each moment u have together. In gods world nothing is an accident and he doesn't put anything on us that we can't handle.

  11. Oh Amber! Stephanie let the Bay Life Mom & Tots group know... we are praying for you even when we don't have the words. I hope that you will feel the love and hugs from those of us who are praying for you and your precious little ones. God is right there with you and shining bright through your trust and faith in Him.

  12. I don't know you either but my heart is breaking for you. And I am praying that God will give you the faith to believe when believing doesn't seem logical, reasonable, or even possible. And I am praying that God uses you and your precious little ones, who he loves so much more than you could ever love, for His glory and makes this abundantly clear to you over the days and months and years.

    1. Hi. I am Amber's Mom. And this is the peace and prayer that has been my heart's cry since Alexis' first test came back positive. That He would be matter He has been and continues to be through my daughter having the courage to share her heart with the world.

  13. Praying earnestly..God has a plan..even when we don't know what it is.

  14. Love You Guys And You Are In Our Prayers

  15. praying for your family

  16. I am so incredibly blessed by your heart. Without hiding your hurts or pretending like you should only feel a certain way, you lay it all out on the table and STILL keep you eyes on our Creator. You have probably heard this, and rightfully hate hearing it, but BECAUSE you are able to give all glory to God and because you are willing to trust in Him and press into Him, He trusts you with this trial. You are a testimony of hope. Know I am praying for you and your entire family.

    Your loving sister in Christ,


  17. Oh, my.....

    I don't know what to say, but I will pray. The Lord is near...

  18. Someone recently shared your blog with me and I realized that I need to introduce you at least on FB to a girl I went to high school with. We have not kept in touch, BUT I DO know that she has a child with Cystic Fibrosis and has worked tirelessly to raise money for a cure. She is an incredible advocate and resource and thought that meeting her might be a good resource for you. She lives in Tyler so it is NOT too far. Her name is Lori Knight (there are 2 in Tyler). Her page shows them all at a fundraiser for CF. I will contact her as well. Just wanted to share. We also go to church with you, although we have never met. God bless you and your beautiful family!

  19. so powerful and beautiful, I'm crying. thank you for being authentic and sharing truth in the midst of what must be great pain.