Friday, July 29, 2016

Death of a loved One - Top 10 worst things to say

Close friends of ours just recently had a child die unexpectedly. It was a shock to everyone. My friends had already been through so much, due to a previous late miscarriage and another close death in the family. I didn't know quite what to say to them except, "I am so sorry and I just want you to know that I love you."

Since we are in a GM1 Gangliosidosis Facebook group, we hear about deaths of other children more frequently now. It's always difficult to know what to say and how to help. I found this article posted on the facebook page of Tucson's Tu Nidito (No Child Grieves Alone).

I thought it was well said and had to share it.

Direct Link to the Article - written by Laurie Burrows who had recently lost her husband.

1. He’s in a better place. (A better place would be beside me now.)
2. Everything happens for a reason.
(There is no rhyme or reason for this kind of loss.)
3. Time heals all wounds.
(Time doesn’t heal all wounds, although healing takes time.)
4. Try not to cry. He wouldn’t want you to cry.
(He’d be bawling his eyes out.)
5. It is time to put this behind you.
(There is no timetable for grief.)
6. At least he lived a long life. If you think this is bad ...
(No comparisons, please.)
7. I know how you feel.
(Do we ever really know how someone feels?)
8. Let me tell you about my own loss, which is similar to yours.
(Please just listen and acknowledge my loss.)
9. Surely you’ll find someone.
(This diminishes the person’s loss and their loved one.)
10. You’ll get through it. Be strong.
(This tells people to hold on to their grief and not let it out.)
Now that we know what NOT to say to people who are grieving,
here is a list of thoughtful remarks that help those who want to know
the kindest thing to say in times of grief.
1. I am sorry for your loss is the tried and true easiest thing to say.
2. The best thing one can say is “I love you.”
Actually a hug is the very best thing, since one losing a spouse 
does not get hugs on a regular basis.
3. I wish I had the right words to comfort you. Just know that I care.
4. I don’t know how you feel, but I am available to help in any way I can.
5. I am always a phone call or email away.
6. It’s ok to cry and it’s ok to hurt.
7. My favorite memory of your loved one is...
8. Please let me know how I can help you.
9. How are you doing this minute?
10. Say nothing. Just be with the person.
"At some of the darkest moments in my life, some people I thought
of as friends deserted me - some because they cared about me
and it hurt them to see me in pain; others because I reminded them of
their own vulnerability, and it was more than they could handle. But
real friends overcame their discomfort and came to sit with me.
If they had not words to make me feel better, they sat in silence
(much better than saying, "You'll get over it," or "It's not so bad;
others have it worse") and I loved them for it."
 - Harold Kushner, Living a Life that Matters

Wednesday, July 20, 2016

Sweet Angels (Cure GM1) - A mother's original song for a cure

A few months ago, I got an invitation from some other parents of children with GM1 to hold a conference call. We formed a task force to see if we couldn't push our fundraising efforts to the next level.

A day or so after the call, my husband said to me, "you should write a song to help raise funds for GM1." I had never even thought of that, or really believed I could do it. I thought, "That's nice that my husband believes in me....but why didn't I think of that?" I got excited and started working on it that night. I came to him with my first draft, of course enthusiastic about it and he said, "no, no, that is not a chorus, keep working on it." A few days later, I shared my progress with him. He said, "I like this, but not this, keep working on it." I went back to the song, crying and pouring out my soul in the process. I played it for him again and he said, "it's getting there...but this part needs a little something different". Then one day when I was playing the song for him, he began to cry and said...."It's perfect."

We then approached our friend Bodie Brower from Utah and asked him if he could record it for us during our next trip up there, (we already had a trip to Utah planned to see our family that next week). Him and his wife generously donated their time and resources to record it and we were so happy with the results.

We then began to work on the video. We didn't know what we were doing at all, but kept filming and working. We showed draft after draft to friends and family who gave us awesome feedback and advice, until at last we felt good about it.

We posted the video on YouTube 3 days ago and shared it on social media. Our friends and family have been so supportive so far in watching and sharing the video, downloading the song as well as donating. Our friends and family have already done so much for us, we'd really like to spread the song to a broader audience and have been working to try to get it out there. We are following any lead we can think of. Hopefully we can make a difference and help get GM1 research to the clinical trial phase.

We've set up all things social to help get this going:
If you want to help us spread the word, please follow, subscribe, download, share, like etc.

YouTube Video Link: Sweet Angels (Cure GM1)
Download on iTunes Sweet Angels
Download on Google Sweet Angels
Download on Amazon Sweet Angels
100% of money donated Here goes directly to CureGM1Foundation
Twitter: @marileekaymusic
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