Redefining traditions. This year, Tom, my girls, my son-in-law, and I chose to gather in New York City for Thanksgiving. Well, "chose" may be the wrong word. New York City is just logistically easiest. The truth is, we would meet up with our girls in Antarctica if it meant we could be together during the holidays.
When our boys were alive, Thanksgiving was a big Middletown affair. If there weren't a dozen people at my table, it didn't feel right. Family favorites: broccoli soufflé (basically cheese and cream sauce flavored with broccoli), mashed potatoes, and "red tongue disease cake" (better known as red devil's food cake.)
As your kids grow up and create lives of their own, you redefine traditions. Roles shift. Recipes evolve. At some point it becomes less about upholding traditions and more about being together at what may be the only opportunity you have all year.
That's what we face in our community. Redefining normal. Daily routines constantly evolve. More time in the morning to get ready for school. New stretching routines. Summer vacations shortened or substituted for trips to specialists. Household budgets tweaked and re-tweaked to allow for the bills that pile up from prescriptions and doctors and PTs.
But we do it. We juggle whatever we have to so that our families and our sons feel safe, consistent love. We try to hide enormous stress. We redefine and redefine. And in that redefinition, we still find what makes our family special, what keeps us happy, and for that, we are grateful.
Our community has been through a lot this year. We have more going on in research and clinical trials than ever before. We are the envy of so many rare diseases because after years of screaming into the darkness for someone to hear our cries, we are being heard: by industry, by Washington, by researchers, by physicians.
We have also lost many young men this year. Every time we hear about another young man taken by this horrible disorder, our hearts break. We know the spirits of our sons, the souls of these angels are with us always. But it doesn't ease the pain of our collective heart.
Yet this year, I have seen us grow stronger. The entire community is collaborating in new ways, focused on working together to end Duchenne, and we are making significant headway. We are not just hoping for a day without Duchenne. It is coming into view.
I see a future where we once again redefine our normal. But in the future I see, we aren't making changes because things have gotten more difficult for our sons. We are making changes because treatments are keeping our sons alive longer and preserving their strength.
Every year, during the holidays, my family does a pretty good job of coming together. But every year, there is a hole at our table, around the fireplace, in our hearts, because Patrick and Christopher aren't there. We may redefine our traditions, but we won't redefine our family just because two are missing from our table.
There is a future when a Duchenne diagnosis won't mean loss in a family. And together, you and your PPMD family will make it happen.
Enjoy a bountiful Thanksgiving holiday. I am so grateful to be part of this community.
P.S. I would love to know about some of your family traditions. What does your family do this time of year to celebrate? Share in the comments below!
Below are the recipes that I mentioned. I'd love for you to share some of your family's Thanksgiving traditions and let me know how your dish turns out, if you decide to try one of these recipes. Happy holidays!
“Red Tongue Disease Cake” – AKA – Waldorf Astoria Red Velvet Cake
½ c. shortening (Crisco)
1 ½ c. sugar
Cream – beat the heck out of this until fluffy
1 tsp vanilla
2 oz. red food coloring
Then – 2 eggs
2 c. sifted cake flour
1 tsp. cocoa (unsweetened)
Add to the creamed mixture – alternating with 1 c. buttermilk, beginning and ending with flour mixture
Finally – dissolve 1 tsp. soda in 1 TBSP vinegar
And fold into batter.
Pour into 2 greased and floured 9-inch cake pans.
Bake 30 min at 350 degrees.
Combine ¼ c. flour
1 c. milk
Cook until thickened. Set aside to cool
Cream until fluffy
1 stick margarine
½ c. shortening (Crisco)
1 c. sugar
Once the margarine/shortening/sugar are VERY fluffy, add in the COLD pudding (flour/milk thickened)
Spread between layers and on top of cake
Cut Broccoli into flowerets. Depends on the crowd. I always use 2 heads of Broccoli–steam. Set aside.
1 c. Helman’s mayonnaise
¼ c. chopped onion
2 beaten eggs
1 can cream of celery soup
2 c. grated sharp cheese (sometimes more….)
Salt and pepper
Combine broccoli and cheese sauce–Bake 35 min. at 350.
Healthy Mashed Potatoes
Steam 1 head of cauliflower
Mash potatoes and cauliflower together
Add butter, milk, salt/pepper
The kids will never know….
Pat Furlong, Founding President, CEO
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