Videos and Frazer's Post

So Frazer wrote something the other day. and it's beautiful..and for those of you that might not have seen it, I'm sending it out here too. There are 3 videos that were made for us back in 2015 and I'm putting the links at the bottom.  We had moved into this house just 3 months prior and there are still unpacked boxes and empty walls everywhere.  Just a month before moving in, we finally found out why Milla was suffering from seizures and losing muscle control.  We learned the words, Batten Disease.  And the very day we moved (literally furniture was being carried into the house) we received a phone call and learned Elle had Batten Disease too.  I will never forget that day, that moment, but the following days, weeks, holidays, months are a blur.  Milla's 4th birthday was the very next day and 2 days later, Elle had her first (and it was massive) seizure.  There are no words to describe this time in our lives.  We were devastated and in utter shock and yet our beautiful families and our beautiful friends and community quite literally held us up and held us together. I probably could write an entire book just on those months alone.  

Even in the pain and heartbreak, these videos are so beautiful and words cannot describe how thankful we are that we have them.

Frazer's post:

Oh man, 6 months since I last held Elle Belle and three years since holding Milla Willa....I have so much to say and yet I am at a loss for words. The video was shot in February 2015. Through the suffering that continues, we were sooo blessed with so much. Thank you Becky Cope English and Chris Braly for this gem and two other videos. Such a treasure beyond words. Some day, I may pour my heart out for those that care, but for now, I am still learning lament and searching for God’s glory that follows And comes through lament throughout His word. Lamentations 3 is such a picture of my heart. And like the author, I tell my soul verse 22: “The steadfast love of the Lord never ceases; his mercies never come to an end;”. In the middle of a book on lament is verses 21 through 41. Unreal. I miss them so and yet they are healed and at the table with our Savior. How I long to join them!

https://www.youtube.com/watch?v=739edy2QHsI

https://www.youtube.com/watch?v=gfUBnjhVQ6g

https://www.youtube.com/watch?v=cCclwRwJqjY