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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.

 

Warm wishes,

Pat

 

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

    Add

    1 tsp vanilla

    2 oz. red food coloring

    Then – 2 eggs

    Cream well.

    Sift together:

    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.

     

    ICING:

    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

     

  • Broccoli Soufflé 

    Cut Broccoli into flowerets. Depends on the crowd. I always use 2 heads of Broccolisteam. Set aside.

    Combine:

    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

    Cook potatoes

    Mash potatoes and cauliflower together

    Add butter, milk, salt/pepper

    The kids will never know….

     

 



Pat Furlong, Founding President, CEO
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Tags: PPMD Blog, Staff, duchenne, dystrophy, muscular, thanksgiving, traditions

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Comment by kathi on November 28, 2011 at 11:00pm
Every year, as many of our friends who are able and interested (!) meet downtown Cincinnati for the thanksgiving 10k run/walk. The money benefits the free store. It's a great time to get outside with 5000 of your closest friends and start a day of being thankful by giving back. Then we go to my husbands mother's house and eat twice as much - because we earned it!!
Comment by Carol Keskeny on November 26, 2011 at 10:23am

Thanksgiving is my favorite holiday of the year, it causes all of us to pause and be truly grateful for everything.  When my son, Daniel, lived at home, at dinner time or before we went to sleep we asked each other every single day, What blessings did you receive today? and What blessings did you give?  It was always interesting to see what our interpretations were of our blessings.  Thanksgiving reminds my family to refocus and be truly grateful for all of our blessings, DMD has brought many angels into our lives and we are deeply appreciative for all of them.  

I am deeply grateful for you, Pat, you are a hero to me.  Thank you for all of your strength to create this project and for sharing you love and your pain with all of us.  I am so appreciative of all of your work. 

Sending you love and gratitude,

Carol


Staff
Comment by Sharon Hesterlee on November 23, 2011 at 12:20pm

Thanksgiving at the Hesterlee-Marchand household this year will be just the three of us--our family is constantly busy and Scott and I both travel for work.  Just having four days of down time with our son is what I am most thankful for this year.  We will spend a delightful extended weekend speculating about whether sharks eat skunks and what our favorite scary sea creatures are...I am also thankful for having talked Scott out of making turkey and into doing roast beef--yay!  No dry turkey leftovers for us!

Comment by Kevin Smith on November 23, 2011 at 12:19pm

I prepare as much of the food as possible the day before to be oven ready in the morning.  We have family over that lives here in FL.  We eat around 1:00, clean up, then most everybody leaves shortly after dessert.  Some of them work retail, so they are up early for work.  Kevin will be at his store, Best Buy on Thanksgiving night at 9:00 this year, gearing up for all the crazies that dare shop on Back Friday.  He does not fool anybody though, he loves this day and has a lot of fun with the die hards in line.  Some may say that is a shame he has cut his Thanksgiving short to rest then go off to work just a few hours later, but our family is just thankful he has a job, let alone a great job.  The day may be short, but always eventful.

Jackie Smith


Staff
Comment by Kimberly Galberaith on November 22, 2011 at 11:30pm
Thanksgiving at our house is filled with a theatrical flair. After lingering in our pj's for a late morning, putting the turkey in the oven and prepping some of the other goodies we all get dressed in "whatever" we want and head outside for our own parade. Sometimes this means princess dresses with pilgrim hats or a cape and mask with cymbals and a balloon. We sing, we march, we make noise and celebrate. It is always crazy and filled with fun. (and the neighbors think we are nuts!) The rest of the day is filled with family, friends and food.
Comment by Patti Frank on November 22, 2011 at 6:49pm

On our way to spend Thanksgiving in Lancaster, PA with Gene's parents, his sister and her family and her husband's parents.  My mom comes with us as she lives with us now.  My dad  passed away 5 years ago and it is great to have her with us now, especially to spend time with her only grandchild, KEVIN.  It's a wonderful time and weekend just being with everyone and Kevin loves to be with his 20something cousins who adore him.  I think back to my growing up years and early 20's and miss those Thanksgivings driving acrosss the George Washington Bridge to the Bronx with my mom and dad to her brother's house and spending the day with my Uncle John, Aunt Pat and my 7 cousins.  Lots of good food, laughs and such happiness.  We'd end the night viewing family slides on the projector screen (remember that) and laughing hysterical and then watch "The Wizard of Oz" which was on every Thanksgiving back then.  When I was really young and we lived in Manhattan, my parents would take me downtown to the Thanksgiving Day Parade which I have home movies of.  I am very thankful for everything and also for the wonderful Duchenne family we have and for all those working so hard to conquer Duchenne.  Thanks Pat for you blog.  Love to all.

 

Comment by Christine Piacentino on November 22, 2011 at 5:19pm
Thanksgiving we spend in Utica for hunting in the morning, dinner in the afternoon. Then we head home for the girls to gear up for shopping on Black Friday. They guys usually have a very low key day.

Staff
Comment by Danielle Garrigan on November 22, 2011 at 3:49pm

Thanksgiving in my family is always one to remember.  I have a HUGE family and most live in the area so they come to my house for Turkey Day. My uncles and their families come up from Georgia and Virginia every other year which is always a special treat too! Depending on the weather, we're either outside playing football or inside watching it. Turkey buffet allllll day long of yummy food and then after we think we can't fit anything else, DESSERT fills the table with pies and Grandma's famous chocolate chip cookies that everyone winds up fighting for, especially the uncles.  This year 2 new baby cousins will be added to the mix. I CAN'T WAIT! :)


Staff
Comment by Will Nolan on November 22, 2011 at 3:38pm

We usually travel to LA and do a combination Thanksgiving/Hanukkah with our west coast family. It makes the long weekend even more special!

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