Some of my favorite gifts come in the form of people. This past week, I had the joy of visiting with several that I don’t see often.
My regular Thursday afternoon pattysitter™ has been out of town so others have been filling in for her. This last week my brother’s wife took the afternoon off from work to come visit. What a treat! We rarely have the opportunity to chat one-on-one. She holds an executive position with a local company and is such an interesting, smart, and insightful individual. Funny work stories, book reviews, and catching up on family filled our afternoon until Alan made it through the gauntlet of freeway traffic.
Earlier that week, I received a phone call from a pastor friend asking if he could stop by for a visit. Friday afternoon he came and we had a lovely chat. Our connection is on several levels. When I was on staff at our former church, Pastor Jim was as well. And before I knew him, I sang in choir with his mother Connie, a dear lady who beamed with the love of the Lord.
In 2010 Pastor Jim officiated at D#2’s wedding. He conducted the ceremony in both Spanish and English. Many members of our son-in-law’s family are Spanish-speaking, and we wanted to celebrate both cultures. The result was joyful!
Our monthly MDA ALS support group met Saturday. We were a small group this time. Only four PALS and their spouses plus our girl (D#2) who I had asked to come to act as my interpreter. We break into two groups — caregivers and PALS — and I was unsure if I could be understood. Turns out I was having a pretty good day speech-wise. But I was glad to have her there. Especially when that itch started on my left cheek. .::sigh::.
Our little group shared status updates, little wins, and concerns. These friends are so precious. They all get it. It’s so good for the caregivers to have this opportunity to do a little venting. Us, too, of course, but I really think theirs is the heavier burden.
We have been so grateful to the Muscular Dystrophy Association for providing us with this awesome support, our wonderful LCSW’s David and Debbie (and before her, Katie!) and for our coordinator, Keir. You guys rock!
I learned something interesting at this meeting. As you probably know, the recent Ice Bucket Challenge phenomenon raised millions of dollars. The majority of the money went, not surprisingly, to the ALS Association, a worthy recipient indeed. However, in terms of money designated for ALS research, only the U.S. federal government outspends the MDA in this effort.
Lou Gehrig’s widow, Eleanor, was a dedicated supporter of the MDA and its fight against neuromuscular diseases from the time she first learned of the organization. I just read about her here. Mrs. Gehrig was one of those people that knows first-hand what it’s like to watch someone you love slipping away and knowing there is no cure. So she offered to help.
‘Tis the gift to be simple, ’tis the gift to be free
‘Tis the gift to come down where we ought to be,
And when we find ourselves in the place just right,
‘Twill be in the valley of love and delight.
Shaker hymn Simple Gifts by Joseph Brackett
People who care. What precious gifts they are. Just simple, ordinary people doing simple, ordinary things and making me, and so many others, feel so blessed.
Thank you, God, for simple gifts.
This blog was posted originally on Sept. 21, 2014.
About the Author
Hi. I’m Patty, and I’m a wife and mom to two grown daughters, and I'm in my 50s, dealing with amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease, or motor neuron disease). This blog is my journey through uncharted waters. People ask me constantly how I’m doing. The short answer is “OK.” I add “so far” in my head most times. So that’s what I’m calling this little corner of the interwebz, OK, So Far. So if you’re up for it, come along on this roller coaster ride known as my life. I can’t promise much in the way of entertainment, but I’ll try not to be too boring! Thanks for stopping by.