It’s Christmas all over the world … and is usually my tradition, I share some personal thoughts with all of you, my MLD Family.
As many of you know, we lost our Darcee to MLD in 1995 and while Lindy is still with us, she is losing the MLD battle bit by bit. Tonight Teryn, Lindy and I shared a full turkey dinner … a quiet and special time. It took a long time for Lindy to chew and swallow. As her eating abilities decline, we don’t know, but this might be the last time she will eat a formal meal like this. Throughout the
So that left Teryn and
Earlier tonight at Christmas
Christmas is a time of great joy for many children and families … but it is often mixed with the sadness of a loss of a loved one – either
Life is complicated. And with MLD, like so many other rare diseases, the path is
So wherever you are on the journey and whatever you are feeling … I can only share what works for me … its the joy of the greater MLD Family that loves and cares for each other. We have personally met many of you, talked with others over the phone, shared personal email conversations. I am honored to know you and your MLD loved ones. I am honored to be able to represent you as we do the work of
Please give a hug, hold a hand, speak kindly, and/or share a smile with all of those around you this holiday season. Find a moment (or more) of joy – I know it’s in those around you. And especially if you are struggling, reach out. We are all here for you!
For those of you that lost a loved one this year, or anytime, and struggle with Christmas and the holidays, I dedicate the following song to you. May its message of love and peace give you comfort …
Dean (and Teryn & Lindy too!) —
Listen to the song here:https://www.youtube.com/watch?v=0yFXfAGl17M
The story behind this Song:
“So last year, was a really tough year for us. We lost our daughter, Annie. People talk about grief, pain, fear, sorrow. All of these words, can’t really describe how you feel when you really go through the loss of a loved one. Even though we held onto hope, that we would somehow see her again, it was just a brutal time that we were going through, right at Christmas. It felt pretty hard to celebrate.
And then I found this song. It was just a video on Facebook by this Christian artist and he was singing about the very struggle I was having. As my wife and I listened to the words of this song, it expressed exactly what we were feeling. It also gave us what we needed at the time. That was comfort. So many people struggle with loss at this time of year, not just me. If you are missing someone this Christmas, I want to dedicate this song to you. I also want to dedicate it to Annie, my sweet Annie, who I miss very much.”-Jon Schmidt
Lyrics:I’m not going to lie.Christmas really hurts this timeCause you’re not here to celebrate with me.Tears fill my eyes.And memories flood my mind,As I place your ornament upon our tree.Although this year I have a broken heart,It gives me hope and joy as I remember where you are.
Got your picture in a frame And a stocking with your name
And I know the Christmas
Credits: “The Sweetest Gift” written by Craig AvenProduced by Jon Schmidt and Chuck E. Myers “sea”Arranged by Jon Schmidt, Chuck Myers, Al van der Beek & Steven Sharp NelsonCraig Aven: VocalsJon Schmidt: PianoSteven Sharp Nelson:
Video Produced and Filmed by Paul Anderson & Shaye ScottVideo Edited by Shaye Scott & Paul Anderson
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