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

It's Milla's 9th Birthday Today

9 years old.  That's how old our Milla-willa would be if she were still with us.

But she has also been with Jesus for almost 3 years.  

9 years guts me but 3 years brings me joy and peace. Praise the Lord for His goodness and amazing grace.

Much love and yummy donuts to you on this November 2nd,

Dana

 

 

Milla's House Fundraiser with Holland and Birch Jewelry

Hey guys! Holland and Birch is raising funds for Milla's House through their jewelry!  Suzanne (the owner and designer) has done this in years past as well and we are so thrilled that she is continuing that this year to help out Milla's House.

You can go to her website and check out the items that she is selling for Milla's House - 20% of the profits will be donated.

https://hollandandbirch.com/collections/millas-house

She is adding 3 awesome new items! The Moon earrings, the Elle cuff (you can choose from 5 different words/phrases to have inscribed on the cuff) and the Milla and Elle charm necklace.  I will link the items and include the older ones as well but all are accessible from the fundraiser part of the website - just scroll down the list for Milla's House.

Side note about the 'Moon' earrings: At Elle's funeral, our pastor talked about the concept of 'the moon is round'...that even when you can't see the whole moon, you know that it is still there and is always round.  It is the same with God and His love and His goodness.  Even when you can't trace the hand of God, trust His heart.  God remains good, the same yesterday, today and tomorrow even in the midst of the death of our daughters and the long road we have traveled. The moon is round. 

(And when I saw these earrings from Suzanne, they immediately made me think of little moons that may look like crescents but may look full depending on your angle...but they are still round. I could talk for ages about all the things my heart's eye sees when I look at these earrings...from their shape to the fact that they are bent - but not broken - and still so beautiful.)

Anyway, here are the links for the new items:

https://hollandandbirch.com/collections/millas-house/products/the-moon-earrings

The Moon Earrings

https://hollandandbirch.com/collections/millas-house/products/the-elle-cuff

The Elle Cuff

https://hollandandbirch.com/collections/millas-house/products/milla-and-elle-charm-necklace

The Milla and Elle Necklace

Here are links to the products from the past years:

https://hollandandbirch.com/collections/millas-house/products/second-story-bracelet-new-jade

Milla Second Story Bracelet

https://hollandandbirch.com/collections/millas-house/products/milla-cuff

The Milla Cuff

https://hollandandbirch.com/collections/millas-house/products/milla-minimalist-diamond-necklace

The Milla Minimalist Diamond Necklace

Thank you for helping us support Milla's House! Here is the link for Milla's House to learn more about who they are and what they do.  Also, see the trailer for the documentary on the Centers for Good Grief towards the bottom of the page!

https://baptistgriefcenters.org/center/memphis-tn/

Dana

 PS -These make great Christmas gifts! ;)

Aug 27th

Hey guys - what a sweet community you have been (as usual!).  Thank you for caring and loving and praying and sending sweet words and giving hugs and meals and all the things.

It's been a busy summer - we ended up traveling a good bit.  We went to the beach, went to Chattanooga, Birmingham, Maine and Colorado.  It was helpful and good to get away...thank you that helped us escape Memphis a little here and there.  But it was always good to get home too.

It's weird, it was always good to get home but it's also incredibly painful just driving around the city.  Thoughts will hit me out of nowhere that it's been awhile since I've driven a certain way since not having to take Elle to school or therapy, etc.  Or it'll hit me at a certain time that I should be at a certain place and then I remember.  It all happens in a split second but it is unnerving and can rattle me for awhile after.

Grief looks like so many different things.

Sometimes it's exhaustion. Sometimes it's lying in the bed for 3 hours in the daytime, not sleeping but not doing anything else either.  Sometimes it's sobbing until you can't breathe and you feel like you might vomit.  Sometimes it's stoicism.  Sometimes it's a smile and giggle at a picture, video or memory and/or spending an hour looking through those old pictures/videos.  Sometimes it's the feeling that if you don't move and distract yourself whether it be cleaning up or running in 105 degree heat or just driving, you might lose your mind.  Sometimes it's distracting yourself with a movie, a book or time with friends.  Sometimes it's anger.  Sometimes it's wondering what those silly girls would be like at ages (almost) 9 and 7 ½ if they were disease-free.  It's wondering what they are up to these days in heaven.  It's truly rejoicing that they are there with Jesus and healed but at the exact same time, feeling the very real physical pain of their absence. It is a pain like no other. Sometimes it's embracing and losing myself in the quiet and loneliness and sometimes that quiet can be suffocating.  Etcetera.  Etcetera.

I've been wanting to write here for awhile but just couldn't get myself to even start until today.  I'm sitting at Ann Carlyle's ice skating lessons at 6:00 on a Tuesday evening and thought I'm just going to jump in and see what happens - fully aware that I might write one sentence and slam the laptop shut.  (PS - I know it is Wednesday night...I needed a minute to process it all.)

I wish I had words for all the things that are going on in my heart, my mind, my soul, my body and I just don't.  I think that's one reason I haven't written for so long.

Of course, a lot of people ask us how we are doing and how Ann Carlyle is doing.  And really the most succinct thing I can say is that I feel like most of the time, we are grieving in a healthy way.  I think.  Most of the time.  We still see Angela, our counselor at Milla's House, regularly and Ann Carlyle has seen her counselor a bunch as well.

Ann Carlyle started school a couple of weeks ago and she is loving it.  Thank God for her school and her teachers.  She is keeping busy with ice skating and cheerleading for now...and of course wants to add violin, horseback riding, karate, obstacle course training (like American Ninja Warrior) and dance.  Needless to say, we had to narrow the field a bit!

The other answer I give to how we are doing is a cliche but it's true...we are taking 1 day at a time...one hour at a time some days.  It's something we've been doing for years now, so we know the drill.  It doesn't always make sense, how I feel day to day, but I will say being outside and physical on our trips this summer has been such goodness for my soul.  We enjoyed the ocean, saw whales, did tons of hiking and trail walking, climbed a few mountains, zip-lined, rode on boats on rivers and oceans, rode horses and ATV's through mountains, rafted rivers, did lots of swimming and some kayaking too.  Side note: all of those things except for swimming were done not in Memphis but in places with oceans and mountains and lakes and rivers and in the case of Maine, all of the above.  :)

Even though life feels a bit empty and quiet, I see the Lord's faithfulness and feel Him setting my feet on solid ground.  I have found myself in the mire significantly over the last few months, but He is always showing up...even when I resist His peace and restfulness.  That's what's so crazy...even when I want to stay in the mire, when I actually want to keep drowning, He pulls me out.  Thank God His love for me doesn't depend on my love or mental strength or determination or whatever to pull myself out of the yuk.  And morning by morning...He is there.  His mercies are there.  The pain is also still there and the loss and the absolute grief but again, He's there too.  And that is something really, really, really big.  Life-changing, life-giving, life-saving, life-sustaining big. 

Thank you all for asking after us and caring about how we are doing and for reading this.  :) It means so much to us to know we are still surrounded.

I'm going to wrap up now - I feel a bit ramble-y and to be honest, it's hard to bring all this to the surface and put words to it.  I'm not sure how much I will be writing from now on...might be a lot, might not.  But in any case, I have to say it again. THANK YOU from the bottom of our hearts.

Much love,
Dana
PS - Some of y'all may have heard this already but Frazer broke his collarbone a week and a half ago, had surgery to fix it last week and is doing great.
PPS - I have to include a picture my sister found the other day of me and Milla and Elle.  Elle is fresh.  I think this was our first day home with her.  Milla is 17 months old.  (Ann Carlyle had juuust turned 3 years old, but who's counting.  Our house wasn't utter chaos at all from that point on.  Nope.)  Anyway, I love the picture.  I love Milla's chunky, chunky hand on Elle's back and I love that Elle's eyes are fixed on Milla's even though she is just days old.  I love everything about it.

May 14th

I feel compelled to check in this morning although I don't have much to say.  I'm hoping the words will just come out as I type.

We are still very much in shock.  It doesn't seem real.  Nothing is normal.  And though we are thankful for the rest and deceleration of life's everyday demands, we feel like we are drowning a bit in the vastness of our days.

I catch myself trying to be efficient in errands or tasks and realize with a sinking heart that it isn't necessary anymore.  My calendar is clear and my arms are empty.  I don't need to take a 3 minute shower.  I don't need to think ahead and pull meds and gather supplies and plan for a 20-minute routine just to get out the door.  

Almost 6 years ago, our lives changed forever.  End of August 2013...Milla had her first seizure.  She and I rode in an ambulance down to LeBonheur.  And May 4, 2019, Elle and I rode in an ambulance to our house from LeBonheur so that we could hold her in our arms at home as she met Jesus face to face.

How has it been 6 years of fighting this awful disease?  How did we endure?  How are 2 of my babies gone?  It's a fog right now that I just can't seem to see through.  I can't get my bearings.  And my brain and body are physically fighting the reality of it.  The weight of it is too much to bear so for self-preservation, I remain in the fog.  I have no choice.  It is involuntary.  I feel the need for flight.  Fleeing from all of the sorrow, from this house even.

I need to tell you all how utterly beautiful Elle's service was.  The Holy Spirit was present.  He moved and was.in.that.place.  At some point, when I get a copy, I will figure out a way to post it online.  Jesus be praised.  I want to yell it from the mountain tops...ALL GLORY AND HONOR BE TO GOD.  May all people see Him and be drawn to Him through Milla and Elle's little lives.  Oh how we long for that.

I think I will sign off for now although I think it helps to write.  Thank you for listening.  Thank you for loving us.  I have so, so, so many thank-you's to say and give to people.  I will spend a lifetime doing so.

We have witnessed much.  And much beyond our understanding.

And the Lord, it was He that did go before thee; He did not fail thee, neither forsook thee.

Much love,

Dana

Elle's Service Schedule

We want you all to know Elle's service arrangements are as follows:

Wednesday 5/8: Visitation 5:00-7:00 at Second Presbyterian Church in the Fellowship Hall

Thursday 5/9: Funeral 11:00 at Second Presbyterian Church with graveside service to follow at Memorial Park Cemetery 

Second Presbyterian Church is at 4055 Poplar, Memphis, TN 38111.

In lieu of flowers, please send memorials to Milla's House.

You can visit https://baptistgriefcenters.org/center/memphis-tn/ to give or send to:

Baptist Centers for Good Grief

1520 W. Poplar Ave, Collierville, TN 38017

Elle is with Jesus

...and Milla.

Blessed be the name of the Lord.

Love to you all - 

Dana and Frazer