All this talk about the “ice bucket challenge” leaves me thinking, about my Mom.
That picture of my Dad and me was taken not long after my Mom died, about a year and a half ago.
My Mom and Dad would have been married 60 years. I honestly don’t remember them ever arguing. I don’t think they ever spent a night apart.
My Mom was healthy. She never complained about any aches or pains. She was remarkably young looking and acting for her age. Until she got ALS.
My parents had just moved here from Illinois to be closer to my brother and me. My Mom started having trouble eating. She wasn’t hungry and lost a lot of weight. I thought she was sad because she missed Illinois, where she lived her whole life. Then she started to get weaker and weaker. We took her to doctor after doctor. We spent that whole summer in one doctor’s office, hospital room or another.
Then, just before Christmas we got the diagnosis. My Mom had ALS. She lived only a couple of months after that.
Remarkably, the ALS had started in her swallowing ability, where it usually ends. But it had spared her hands. My mother had a God given gift. She could sing like a bird, ironically her maiden name was Burd. And she played the piano by sight, effortlessly. I have never known anyone else who could hear a piece one time and play it so beautifully, without looking at a note of music.
So I grew up with the sound of music. I know good and well she’s playing somewhere now in heaven.
But I thought that in my case, it might be better for me to share a very private video with you, rather than do the “ice bucket challenge”. I recorded the video to the left of this post on my iPhone two days before my Mom died. I hope you will watch it. I hope you will see what ALS takes away. And I hope maybe it will move you to give, to the ALS Foundation.
Beautiful story… and an amazing gift.
Fantastic post Jane. Loved your article and the video of your mom is just brilliant. I am sorry for your loss, but know that you see her every day in the world around you.
Thank you so much Jeff. I truly appreciate that and hope this will help another family.
That video is a treasure. How beautifully she played…. I had to go back and make sure that I had read correctly that she died 2 days later. I agree…. she’s probably playing eternally!! Thanks for sharing a sweet and very personal part of your life!!
Aww, thank you Toni. It was pretty incredible.
Mary, she was an amazing woman. Thank you so much.
Thank you Lindsay.
Wonderful that you were able to get a video of her playing, a great remembrance for you. <3
Yes, nice way to be able to use an iPhone Eileen 🙂
Great article Jane! Thanks for sharing.
Thank you so much Clancey:)
That really was a special thing to be able to record, made even more special by your sharing it…
Happy to Ric, thanks.
I’m sure your Mom feels very honored for the video you posted. I bet you can feel her presence at this special time. A real nice story Jane.
Thank you so much Mike, appreciate your thoughts.
Thanks for sharing this special memory of your beloved mother with us, Jane.
Thank you David, how nice of you.
What a beautiful timeless moment shared….
Thank you for taking the time to watch Susan.
Jane, good morning. I just learned that friend of mine is being put on hospice care. im donating money as well as giving blood. Your mom was as wonderful as you are. God bless!
My best to your friend Chad. Thank you.
That video of your Mom is a priceless treasure. My Mom also played guitar & piano “by ear” as she called it. I watched her fade away from Alzheimer’s until she passed away in 2001. She didn’t recognize any of us but the music stayed with her to the end.
Thank you so much for sharing that Brenda. My best to you.
You had me getting moist eyes. Very nice story – err – tribute to your Mom…
Thank you so much Patrick 🙂
Jane, you are blessed to have that beautiful memory of your mom…thank you for sharing it with us…the ice bucket “challenge” has brought this horrible disease plenty of publicity…I only hope ALL the people that are putting videos on social media are actually making donations. Looking forward to your magazine.
What a beautiful treasure to have. ALS is a terrible disease, so happy to see donations increasing as a result of recent publicity. My mom was a concert pianist and it was terrible to watch her decline as she suffered from Alzheimer’s. But was a treasure to have musical memories
And God gave her gift to you with this video only days before her death. So beautiful!
Yes, Mary Nelle, and thanks so much for reading it 🙂
Thanks for sharing this, Jane. Beautiful story!
My pleasure Margo, thanks for taking time to read it.
Oh Jane, that video is pure gold and priceless! I lost my grandfather who played huge part of raising me and was my all time hero to ALS. I would give my right arm to have a video of him. Thank you for sharing with us this personal piece of you. I cant tell you how awesome it is that you’re still active in Dallas. I hated when you left the news channel.
Thank you Holli. I”m sorry about your grandfather. I hope this will make a difference for ALS. My best, Jane
What a treasure. I could watch that over and over again.
Not to miss the point of giving towards the cause. Thank you for sharing such a gift.
Thank you Claudia, it was a pleasure to share.
The video of your mother is beautiful and inspiring. She truly is an angel. So hard to believe that she passed away 2 days later. I know how much you miss her and am thankful the ALS ice bucket challenge is raising so much money to fight this horrible disease.
Thank you so much for your kind thoughts Lyda. I am thankful for the attention to ALS too.
That was a precious memory for you to share with us. Thank you what a wonderful talent your Mom had! My best friend’s father had ALS and was one of the longest living ALS patients recorded at the time of his death about 25 years ago. He lived 10 years on a ventilator cared for by paid caregivers and his RN wife. It is a devastating disease and I will always fund this research.
Thank you for taking the time to read and comment Debbie. My best to your friend. I hope this will help draw attention to ALS.
that is just beautiful! I feel your pain, My mom just passed away this past Saturday, I have been going through FB pics so we can get the video for the visitation and funeral and I am so glad I took all those pictures. I can keep the memories and share with my kids and grandkids. God Bless you and your family. Your mother played beautifully. ALS is a horrible disease.
I am so sorry for your loss. Thank you for your kind comments Denice.
WOW! I am so very sorry for your loss, Jane~ And what a true Treasure this video is…I am praying that you gain comfort in what is being done to find a cure for this most Horrific Disease!
Peace & Blessings to You, Your Dad and entire Family! 🙂
Thank you so much Jackie. Thanks for commenting.
What an amazing woman your mom must have bee, and what a gift God gave your family that she had her music til the end. Such a treasure! Thank you so sharing.
Thanks for your kind thoughts Laura.
I am so sorry for your loss, she sounds like she was a beautiful woman, inside and out.
“You can kiss your family and friends good-bye and put miles between you, but at the same time you carry them with you in your heart and in your mind, because you do not just live in a world but a world lives in you.” — Frederich Buechner
That’s lovely Mitch, thank you.
Jane, what a touching tribute to your Mom. I so enjoyed hearing her play the piano in your video. As you know, we have lost many friends to ALS, I spent a good part of my career at NBC-5 covering stories about ALS research after our mutual friend Tom McDonald passed away from that insidious disease. We are a long way from solving the ALS equation, and it is good of you to share this tribute to your Mom to urge people to join the fight. Congrats on your new eMagazine, I’ll be reading and enjoying my old partner from afar.
Aww thanks Mike! People always ask me what you’re up to, what shall I tell them???
Jane, I get asked the same question about you almost daily. Now, I can point them right here to your new emagazine. I am a very busy media strategist these days. Title wise I am managing partner of the media strategy and communications firm of One Degree, LLC, (www.the1degree.com). I am involved in seven U.S. Senate races right now, we have assembled a wonderful campaign team of very bright people. Our core group of four consultants manages campaign operations with thousands of volunteers scattered from Alaska to North Carolina. It is exciting and stressful all at the same time, a similar thrill to what we used to do on television together. I miss our daily chats, you are one of the brightest and fun people I know, and I am so glad to see you doing well.
You never let any grass grow under your feet Mike…I miss you too! And I love you, Jane 🙂