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 meal she was vocalizing to us … and a couple of times it seemed she was trying so hard to get 2 or 3 words out – but we could not understand them. We don’t know what she was trying to say, but when we snuggle with her and speak to her she always smiles so we have an alternate means of communication!
So that left Teryn and I to do the talking. We chatted for bit and then circled around to a MLD family that we know who has one child in transplant, and a second who is headed to Milan today (Christmas day) for gene therapy. We have become very tightly engaged with this family having walked the journey after being able to meet them just 48 hours after thier first child was diagnosed.
Earlier tonight at Christmas eve church service we crossed paths with a friend we had not seen for several years. She lost one of her children to SIDS many years ago … in December. Which reminded us of another MLD family who is very close to us who lost their daughter to MLD in December, and of course our Darcee’s angel date in December 16th.
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 as an angel or perhaps just the continued progression of MLD. For those of us who are Christians there is often conflict with the expectations of joy this time of year.
Life is complicated. And with MLD, like so many other rare diseases, the path is uncertain, and full of both expected and unexpected surprises. Some of those surprises knock us off our feet and take our breath away replacing it with despair and sadness … and others – often simple little things – bring smiles, happiness, contentment, and joy.
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 MLD Foundation on behalf of each of you.
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.
Chorus:You’re with the Son of God.You’re with the Prince of Peace.You’re with the one we’re celebratingAnd that thought amazes me.Sometimes I still break down,Grieving that we’re apart,But the sweetest gift is knowing where you are.You’re with the Son of God.
Got your picture in a frame And a stocking with your name.Oh God knows it’s been hard letting go. And I can’t bring you back,But I’ll see you again.And oh, that thought is healing to my soul.I’ll miss making angels with you in the snow.I guess instead you will be singing with them All around God’s throne.
And I know the Christmas seasonWas your favorite time of year.You loved to help us decorate our tree.But now that you’re with Jesus,I can’t imagine how you feelCause He’s the one who bled and diedUpon the tree for you and me.
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: CelloPiano and vocals recorded by Jake Bowen at Big Idea StudiosCello recorded by Al van der Beek at TPG StudiosMastered by Al van der Beek
Video Produced and Filmed by Paul Anderson & Shaye ScottVideo Edited by Shaye Scott & Paul Anderson
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