Thursday, December 15, 2016


So this is a hard update to write. 

First of all, how are we doing?

Well, that's a tough question to answer.  It's complicated.  It's hard.  It's painful.  We are exhausted...physically and emotionally.  We are still in shock a good bit and feel numb much of the time (which is a probably a good thing right now) but when the pain and grief seeps in, it can feel debilitating.  

We have been actively grieving for the past 2 years for Milla and Elle.  We have grieved for so much for so long but now our grief is somewhat different because Milla has died. We have moved from anticipatory grief to a much more complicated grief.  And because we don't know what Elle's future looks like, we still have anticipatory grief for Elle.  And we are realizing that our grief for Milla might be delayed because of Ann Carlyle's needs and more specifically, Elle's physical needs.  


Ann Carlyle is doing relatively well in that she is talking a lot about being sad and missing Milla.  She is not bottling anything up - so very thankful for this.  She has enjoyed being at school - school has been a good distraction and the activity and norm of it makes her feel good.  The teachers and the kids and the kids' parents have been amaaaazing.  Thank you, thank you, thank you, CMDS people.  I'm a little worried about Ann Carlyle having 2 weeks of Christmas break (lack of schedule, etc.) but I think our friends and family are planning on keeping her as busy and as happy as can be.

Elle - oh Elle.  She has been so, so, so hard.  She is super needy and clingy to me and especially to her daddy right now.  She is frustrated a lot and nothing seems to hold her attention for more than 30 seconds.  She has no sense of danger but is constantly on the move.  She is not able to walk and she has drop seizures frequently.  We do see some bits of positive things lately that may be due to her enzyme infusions - we are still going to Columbus, OH every other week with her for 3 or 4 days and will continue to do so indefinitely.  These enzymes are a treatment that she has to continue to get.  I liken it to a diabetic needing insulin.  A (certain type of) diabetic doesn't make insulin, so they have to get it regularly.  Elle doesn't make these enzymes so we have to give them to her every 14 days.

Please keep praying for us as you have been doing so incredibly faithfully.  

Please don't be afraid to say Milla's name or to talk about her.  It is comforting to us to talk about her. :)

We are going to hurt longer than any of us want and that it may not look 'normal.'  Some of our grief is going to be delayed.  We are taking things one step at a time - just doing the next thing each day - literally.  

So many of you have asked how they can help - and you are all doing such amazing things to help us day-to-day, to brighten our day, to make us smile, praying for us.  Knowing that we are not alone is so big.  We have cherished every word that has been said to us, texted to us, emailed to us or mailed to us.  We have cherished every hug and every squeeze of our hands.  We have cherished every act of love towards our girls (and us).  We have cherished every act in honor of our Milla.  Please know we are treasuring it all away in our hearts.  It all helps to keep us going and it will continue to keep us going as we are trying to find our way through all this.

Thank you to all that came to the visitation and/or funeral for Milla - and to those that were there in spirit.  It was a hard time to be sure, but our souls were so uplifted as well.  The services were amazing and we were so thankful to have so much support during those days.

God is so good.  We are in the season of celebrating Emmanuel - God with us.  Jesus became one of us and died so that Milla could be with Him forever.  Glory, glory to the newborn King.  Milla is healed.  She is running and leaping and laughing and shouting and singing.  And we miss her so very much.

Joy to the world, the Lord has come!  Much, much love,


  1. Prayers over your family! May God's angels surround you with comfort and healing!

  2. There are no words, only love & prayers being sent to your sweet family!

  3. In the midst of such great sorrow, you are a light, Dana. Keep your eyes on Jesus. He will never drop you from His arms. Im so very sorry for what you and your family are going through. I wanted you to know that people all around the world are holding you in prayer.

  4. I don't believe I have ever commented, and I don't even know how to put into words what I want to say or how much you have inspired me as a mom and a follower of Christ, but I just want you to know you are on my heart so often. I first heard your story and began praying for your family two years ago through a prayer request for you all in my bible study in Madison, MS. I have since been so blessed by the children's book about your family and have passed it on to three other grieving parents... I don't even know you guys, but prayer has a way of knitting those in the family of Faith, and I wept like I haven't wept in years when reading about Milla going to be with the Lord. I just cannot imagine. What a blessing that we have a Living Hope in Jesus...

    I pray that I would be able to utter the words of this song, much less declare them, after being in your shoes...cannot imagine the road you must be on. Just know you were on my heart tonight when listening to this song and that you all are in my prayers so often...


    Psalm 139: 5-6 "You hem me in, behind and before, and lay your hand upon me. Such knowledge is too wonderful for me; it is high, I cannot attain it."

  5. I just read this blog post. (I am not longer with SCS.) My heart truly goes out to your family. I will continue to keep you in my thoughts and prayers. Please let me know if there is anything at all I can do for you!

    Rebekah Eaton