A while back, I was asked by the Muscular Dystrophy Association if I would be interested in participating in their campaign for ALS Awareness Month (May.) I was honored to be asked, and somewhat overwhelmed by all the attention. After all, it was just a few months ago that I was interviewed via email – along with several others – for a feature on ALS in the current issue of MDA’s Quest Magazine. But it’s ALS Awareness Month! How could I say, “No, thanks”?!
The campaign is centered around the theme “One More ...” My assignment?
Complete this sentence: If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want one more _______________________. Examples: day at the beach with my family, chance to hit a hole in one on the golf course, trip across the United States to visit my family and friends, etc.
Wow. Dozens of ideas came to mind. There are so many “one mores” I would love to have. How in the world could I choose just one? Maybe …
One More Holiday Season
This would include decorating, shopping, baking, cooking, and so much more! I would love to host Thanksgiving dinner with turkey and all trimmings. To bake cookies, make caramel corn and fudge to share at Christmas. I’d love to take one more stab at replicating my mother-in-law’s Norwegian julekake. And to have everyone over on New Year’s morning for our once-traditional aebelskiver breakfast!
That one more holiday season would not be complete, of course, without regular handbell rehearsals and numerous performances all over town with my bell peeps in San Diego Harmony Ringers! Including all the schlepping. That’s part of the deal. :-)
One More Trip With Alan (or more?)
We did make it to Hawaii in 2011 just after his melanoma scare. (He’s fine. It was caught early.) I had several falls, however, and we didn’t do all we had hoped to do. This was pre-diagnosis, but we knew something was wrong. It would be nice to get a “do-over.”
But I’m greedy. I would also want the chance to take the other two trips Alan had on his heart: 1) A long road trip all across the U.S., and 2) Norway, home of his ancesters. I truly hope he makes these trips a reality. And I think he will one day. Just would have loved the chance to share this.
One More Big Hug With Each Person I Love
It breaks my heart not to be able to reach out physically to others. Holding a hand, patting a shoulder, caressing a face, wiping a tear … and wrapping someone I love in a big hug. Oh, how I miss this.
One More Trip to Disneyland and Disney’s California Adventure
I would ride every ride, see every show, watch every parade, and savor all the color, music, artistry, and smiles! And don’t forget popcorn! And ice cream! And a Dole Whip!
One More Trip to the Mountains When There is Snow
The severe drought we’re experiencing here in California has meant fewer snowy days in our local mountains. But once in a while, a few flurries show up, turning the back country into a fairyland. No trip to the mountains would be complete without a stop at Julian for a slice of pie. Mmmm …
One More Craft Project
… Although, how could I pick just one? A sewing project? Scrapbook? Floral wreath? Acrylic painting? Photography? Jewelry? Take another shot at learning to knit? Or crochet? .::sigh::.
So, so many “One mores” to consider.
But, one idea rose above the others. In the end, this is what I shared:
If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want one more chance to plan a wedding. When our younger daughter married in 2010, she was working full time and asked me for help. I didn’t realize the stumbling, falls and fatigue were the onset of ALS. I had so much fun planning the wedding with her! It was a lot of work, but it paid off. Such a sweet, lovely day! Now her sister is engaged. Her busy job leaves her very little time for planning a wedding. I ache to be physically able to do all the kinds of creative things I did for her sister. One more wedding.
Yes, that’s what I would want! I have a Pinterest board overflowing with ideas. But that isn’t quite the same as doing something. D#1 and her fiancé will probably need to hire a wedding planner, even though she doesn’t want a lavish affair. As our girls were growing up, the topic of weddings came up now and then. Both knew from our discussions that a wedding is just one day. What it represents, a marriage, is what is most important. Spending a fortune on a party is not the best way to begin a life together, especially if the result is thousands of dollars in debt. I’m sure both girls remember me saying, “It’s a wedding! Not a coronation!”
D#2 had a few definite ideas about what she wanted (church ceremony with organ, traditional bridal march, bouquet toss) and what she, and her fiancé, did NOT want (no garter toss, no cake-smashing, and no dancing!) She designed the “look” of the invitations using craft store stamps. I scanned the art into the computer and used it as a template. We ordered paper and envelopes online. I printed each invitation one by one. Then she and I embellished each one with decorative corner cuts and tiny adhesive pearls. We created centerpieces. Assembled favors. I prepped all the gluten free snacks for the reception so the celiac bride would not get “gluten-ed” at her own wedding. (A professional GF baker created the cake, and it was amazing.) In short, I worked my tail off … and loved every minute of it.
D#1 has some definite ideas of her own, naturally. Since she tends to wilt in warm weather, they have set a November wedding date in hopes of dodging the heat. It must take place indoors. There must be air conditioning. (We have jokingly discussed renting the produce room at Costco, or possibly Sea World’s “Penguin Encounter.” I rather like the latter. The locals are always formally attired.) Though it may be a fall wedding, she has chosen “icy” colors: various shades of blue along with silver and white. Sort of a “Frozen” palette, but not like a 6-year-old’s birthday party! Snowflakes and ice are fine. But no Sven and Olaf! As for the the dress, she, like her sister, prefers some coverage on top. No bare shoulders. Sleeves would be nice. Her dream gown would be one just like Kate Middleton’s when she and Prince William were married. With a shorter train!
There are thousands of details to work out. And I wish I could do more than watch from the sidelines. I want to help make her special day a cherished memory.
One more wedding.
This blog was posted originally on May 4, 2015.
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, that focus on the "one more" theme, 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.