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,