August heat has been brutal, as usual, but I am so thankful for air conditioning! Whew! Without it, I would be a cranky mess. I’m enough of a mess as it is!
Despite the heat, we do get out now and then.
Last Saturday’s ALS support group meeting at MDA found me, once more, the lone female in a room full of some of the greatest and bravest men I’ve ever met. This means, of course, that in the other room, Alan was surrounded by ladies as the caregivers met. We did have one other gentleman there whose wife passed not long ago. Usually there is one other woman ALS patient but they come quite a long distance so I know it’s difficult for them.
One of the men shared video of a paragliding flight he took recently at the Torrey Pines Glider Port. Apparently there’s an organization that takes disabled people up in special harnesses in a tandem glider flight along the shore. How awesome!!! It looked like it would be so much fun. Just may have to look into this!
On Sunday afternoon, we received a visit from newly-minted hospice therapy dog Bonnie and her “mom.” What a cutie! Bonnie is a loving Westie – West Highland White Terrier. She is very polite but just couldn’t help giving a few kisses… and I did not mind a bit! So cute!!
In other news, I have been busy writing – and re-writing – a first-person piece I’ve been asked to submit for a national publication. Fortunately, there is no pressing deadline. But it’s coming together well, I think, so I should be finished soon.
Just finished reading “Heaven Changes Everything” by Todd and Sonja Burpo, the follow-up to “Heaven is For Real.” I highly recommend it. Very encouraging and real. Just ordinary people being used by God in an extraordinary way to transform lives. Bottom line? Jesus really reeeally loves you and me!
Tuesday afternoon, I had the joy of seeing our firstborn trying on wedding gowns! Alan drove my chair, helped me “talk” using my word board, and dried my happy tears when the smile on D#1’s face said, “Yes! This is the dress!” No, I will not share details here lest the groom sees them! But I will say it is HER. And it’s exquisite.
Wedding plans have been a challenge due to her work schedule and other factors. But her two attendants are stepping up to help. It isn’t going to be a lavish affair. Just a smallish, mostly family ceremony and reception. Yet, there are details to work out, of course. I do so wish I could help. All I can do is pray, but that’s needed, too! So, in my own way, I guess I’m helping.
I am so grateful for the blessing God has given us in the men who love our daughters. Both guys are kind, loving, good men of integrity who know the Lord. Beyond that, they are quite different from one another! And that’s as it should be! Each of them suits his bride well. And I love them both. It’s wonderful to know my girls have such great partners to share life with.
Despite ALS, I am happy. Life is full. Love and family and friends go on in the ever-changing rhythms of life. The dance surrounds me and carries me along.
You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
that my heart may sing your praises and not be silent.
Lord my God, I will praise you forever.
This blog was posted originally on August 19, 2015.
Editor's note: Visit mda.org/ALS to learn more about MDA's fight against ALS. The site offers powerful stories by people living with ALS, including Patty, as well as other helpful resources so you can get involved and help take action to end ALS today. And, be sure to visit MDA's ALS disease information center to learn more about ALS, its causes, signs and symptoms, research and more.
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.