Sunday, June 11, 2017
Hey everyone! Hope you are all well. Thank you, thank you, thank you for your continued prayer and care and love and kindness. Truly, God moves through people and holds us up through you all. There is no prayer too small, no kindness or generous act too small. It is all stored in our hearts and brings constant encouragement to us as we often are just trying to keep our heads above water.
The waves have been hitting extra hard over the past month or so. Our trips to Ohio have been full of difficulties and we have seen a steady decline with Elle throughout the last 4-6 weeks. Her seizures have increased in number and severity - although, the seizures are still way 'better' than they were back in the fall. She has lost more strength and coordination and muscle control. She has lost more of her speech - both receptive and expressive. She is not complying with taking her medication as well. Her rages and frustrations have increased a bit...some days are better than others. Her sleep has been bad. And on and on.
However, we have seen a little bit of a good rebound in her condition after her infusion last week. Friday and Saturday were really great days and she was so happy and vibrant! We love seeing her playful and silly and giggly and funny - her true personality coming through. Today, she seemed a bit more tired and irritable and I noticed a lot more seizures than she's had the last couple of days.
So we just never know what her days and nights will look like, There is no pattern to any of her sleep, seizures, tiredness, crankiness, strength, speech ability, etc. And while we are utterly thankful for these enzymes that she gets every other week, we have no idea how long these enzymes will keep her disease from progressing and we have no idea how quickly her disease will progress.
We know that God knows this, though. We know that Elle's days and nights were laid out and planned before time began. He has always known her. He MADE her. He formed her and loved her long before we knew her and loved her.
And so when our faith falters and the frustration and anger come barreling into our souls, when despair threatens to undo us, this is what we have to preach to ourselves. This is what we have to remember and this is what we have to lean on. How deep the Father's love for us! How vast beyond all measure! And it doesn't matter if we feel lovey-dovey about it all. Our God is steadfast. He does not love us conditionally. When we stumble and fall apart from the weight of all of it, He remains ever-present, ever-loving.
Our Milla-willa has been gone for 6 months and 2 weeks now. We miss her so much, so deeply. I can't even begin to describe the longing we have to see her and hold her and listen to her belly-laugh again. Please pray for our hearts as we grieve and try to find our way down this road. Oh Jesus, how we hope You would come back soon.
As you know, Elle's enzyme medication has been approved by the FDA, which means we can have her infusions done here in Memphis. And this is sooooo exciting!! BUT, we have to wait for insurance to approve it. So this is our biggest hurdle and biggest prayer right now - please pray for this approval! And pray that it will happen quickly. It has already been about 7 weeks since the medication was FDA approved and we need things to move along quickly. Our hospital here in Memphis (LeBonheur Children's Medical Center) is ready to go - which is amazing and we are so very thankful for them working so hard for us. So please pray, pray, pray for our insurance to approve it!!
We are surviving summer so far - we kicked it off with a beach trip to Florida Memorial Day week which was exhausting but really good. We are a family of beach bums and the ocean soothes our souls. :)
With the exception of this coming week, Elle will continue to have school throughout the summer - it is a very good thing for her to have this activity and stimulation for her brain. (And good for her momma to have a little break from her constant activity and constant stimulation she needs.) Ann Carlyle is going to a couple of day-camps this summer and has a pretty full schedule of activities to keep her busy.
Ann Carlyle also just finished up 3 days of Camp Good Grief and it.was.wonderful for her. She loved it and learned so much. She was able to be around a bunch of kids around her age that had all lost someone close to them...she was able to talk about Milla and all the complexities of her grief concerning both her sisters...she was able to have FUN and laugh and dance and see that all those things are okay too...she was able to comfort other kids and help them with their grief as well. What an amazing camp it is!! And y'all, the people that run the camp and the people that volunteer to help out with these kids are unbelievable. We have this treasure of a place (The Kimmons Wilson Center for Good Grief) right here in Memphis!!!
Speaking of, The Center for Good Grief's newest location - Milla's House - will open be opening soon this summer!! Stay tuned for more details about the ribbon-cutting ceremony that will take place in July. We would love for anyone that can make it to come out to celebrate Milla's life and this wonderful organization that is serving Memphis so well.
Okay, so I could type forever - I feel like I am leaving out so many things, but I gotta go get some sleep. (Please continue to pray for our health - all of us - Frazer and I are so worn down physically and emotionally - life is definitely taking a toll on us.)
Much love to you!!