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Thursday, December 25th, 2014
This is a guest post from Nicole Burns D’Angelo, whose daughter, Ella, has rare brain and intestinal disorders. She’s been treated at the two top children’s hospitals in the country—The Children’s Hospital of Philadelphia and Boston Children’s Hospital. I first learned of her story because some friends posted on her Facebook site, Team Ella. Nicole’s Christmas wish is to spread Ella’s story so that families with children also facing the same challenges can connect.
I gave birth to a beautiful baby girl in April 2012. Our joy soon became fear. Ella wasn’t able to eat. We rushed her to The Children’s Hospital of Philadelphia where many test were performed. Ella wasn’t thriving and we needed answers. After countless test we finally received the news that Ella had an extremely rare brain disorder called Congenital Bilateral Perisylvian Syndrome or CBPS. A brain disorder so rare our likelihood of meeting someone else with the same disorder were very slim. CBPS consist of feeding difficulty, partial paralysis of the facial and throat muscles as well as hard to control epilepsy. There’s no cure. It was all so hard to understand we just kept asking why. It didn’t end there.Soon following Ella’s brain diagnosis, her intestines stopped functioning properly. There we were back again having test after test. Ella was diagnosed with Enteric Neuropathy, a disorder that effects the nerves in her entire intestinal tract. Ella is surviving off of TPN (IV nutrition) which she receives through a central line in her chest. IV nutrition can only help her for so long. It can not be a long-term plan. IV nutrition can affect major organs one being the liver causing failure. We spend a lot of time at The Children’s Hospital of Philadelphia, but we make the most of every moment. Ella is the happiest 2 -year-old despite her struggles. She faces everything with a smile.
The holidays are here, and we hoping for a Christmas miracle. The miracle of a cure, a promising treatment, or even a family we can talk to who are facing our same battle. Our Christmas wish is to spread her story. We want other parents to know they are not alone, never give up, and always have hope!
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Tuesday, December 23rd, 2014
A year ago today, my now husband asked me to marry him. I will never forget all of the happiness and joy around the occasion. However, once all of the excitement died down a bit and I found myself buried in copies of Brides and Martha Stewart Weddings, people started asking me what we had decided about our religions. Was I going to convert to Catholicism? Was he going to convert to Judaism? Hadn’t we thought about what we were going to do? To think that I had thought the hardest part of this getting married thing was explaining to our New York crew that we could, in fact, have a lovely wedding in the South. We ended up having a spiritual wedding with both Catholic and Jewish elements, which seemed to disappoint everyone equally and was a compromise both of us had happily agreed upon. But even with that behind us, the greater question, more apparent than ever during the holidays, is what the heck we’re going to do about our future children.
It’s not like we’re the only couple in the world that is interfaith. Not many studies are done on families’ religious stances, but, in 2008, the Pew Research Center found that over one-quarter of people lived in religiously-mixed households. One can only imagine that this number has grown substantially since then. According to a recent article in PBS, it’s not uncommon for interfaith families to pick one religion and stick with it; however, they also interviewed several families who chose to embrace both of their faiths equally. In other words, people are doing all kinds of things and you can really choose your own adventure.
It is tempting to me to invite Santa and Hanukkah Harry to our house every December, but I worry that my kids will get confused. Will they think everyone celebrates a mishmash of holidays? I will say it was truly surprising for me to see the number of books on celebrating both holidays — someone even made a “Hanukkah and Christmas: Picture Books Featuring Interfaith Celebrations” Pinterest board! (Wait, is everyone already celebrating a mishmash of holidays without me?) I also worry that the meaning behind each holiday will get lost along the way. Hanukkah is actually not that big of a deal to my family, so I’m OK with Santa stealing the show a little bit. but I’m not going to be happy when the Easter Bunny comes knocking at the door during Passover Seder. For every family, the holidays work a bit differently. I guess we’re just going to have some growing pains.
Hannah Werthan is an assistant editor at Parents.com. Working at Parents inspires her to talk about having kids all the time, which slightly terrifies her husband.
P.S. These treats are sure to be a hit at any kind of holiday party.
Image via Shutterstock.
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Thursday, December 18th, 2014
Hang on to your Santa hats, mamas: Christmas is one week away. One week! Maybe you’re among the women who are cheerfully baking, excitedly wrapping, and gleefully counting down the days to next Thursday. Or, you’re a little more like me: You’re still doing all those things (and then some), just minus the happy adjectives.
I have so much to be grateful for this Christmas, and I bet many of you do, too. I want to love this holiday, particularly for the sake of my young children who can’t wait for it. But every year, a sense of dread creeps up on me the closer we get to the 25th, as a list of tasks to complete—so many tasks—fill my calendar and rattle around my brain.
This year, I tried harder to love Christmas: I made good on a promise to myself to get a head start on the holiday, thinking it would help make it more manageable and enjoyable. I ordered my cards early. I shopped ahead of time. I got stocking stuffers in November! Yet no matter how prepared you think you are, I find that for me, at least, there is always something left to do. Just one more person to buy for or holiday tradition to squeeze in. As I write this post, a friend messages me how tired she is, “and now I have to go put tinsel on the tree. Argh.”
Christmas. Argh. You said it, sister.
With seven days until showtime, no one is safe around me right now, especially my husband. He hasn’t done anything to deserve my ire, but that’s part of the problem: So much of Christmas falls on mothers. And my husband does a lot for Christmas. (Truly. I’m not the one stringing lights all over the tree or outside.) But, like that fictional mouse with the cookie, Christmas always demands more. Even if you don’t go all-out on Christmas and try to keep it fairly simple, there’s a never-ending checklist attached to this holiday. It drains energy. It empties wallets. It saps time. And so for the next week, I am in The Zone. I’ve got presents to wrap! Elves to move! Out of my way, people!
It’s an icky thing to feel possessed at a time when you’re supposed to be merry and bright. My complaints hardly qualify as problems. Knowing that not only makes me feel like a Grinch, but a guilty one. I felt relieved when a coworker, also a mom, admitted to me that “out of my way!” is her motto this time of year, too.
When I was a child, I loved Christmas. (And now I know why: My parents did everything!) I’m glad to be making this holiday memorable for my own kids–they’re only little for now, and we need to cherish their sweet, wide-eyed view of Christmas while we can. But I could stand to get some of that magic and innocence back for me. That’s why I said yes to a cookie exchange at a friend’s home this weekend. That probably sounds like a martyr move: With a holiday dinner to prepare and so much else I claim I have to do (wah, wah), how can I complain if I have time to melt chocolate and crush candy canes with a rolling pin because, Must Make Peppermint Bark? But if I don’t do the good stuff with my kids, then what is there to enjoy about Christmas? (Besides, have you tried peppermint bark? It’s good.)
So, we’ll feed carrots to the chubby sheep at the live nativity scene at a local church. We’ll make the time to send gifts to a family in need. I’m pausing to appreciate the holiday cards that arrive daily, which I can enjoy without guilt now that mine have been mailed out. I’m taking off from work today, to attend my preschooler’s holiday singalong concert, and if that doesn’t melt my frozen heart, well, I sorely need a Christmas intervention. Watching this video every year with my kids, and hearing their giggles, also puts an instant smile on my face.
Next year, I really want the days leading up to Christmas to be different, though. My friends and I complained to one another at pickup, and that helped: just knowing we’re not alone in our grinchiness. (“This smile on my face? It’s hiding the utter panic I feel inside,” one mom said to me, only half-kidding.) We all know our kids’ smiles will be worth our efforts Christmas morning, and no one’s going to put coal in our stockings, we hope, for being a little cranky right now.
How do you keep your good cheer, without feeling burdened by all that there is to do?
Image courtesy of Shutterstock
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Wednesday, December 17th, 2014
Let me say up front that I love the holiday season as much as the next person—the parties, the lights displays in homes and elaborate store windows, the ever-present Christmas music (well, to a point), the annual watching of It’s a Wonderful Life and Rudolph the Red-Nosed Reindeer. People are in a warm mood, ready to celebrate with family. The whole thing feels so festive.
But the holidays are a bit different if you’re a Jew. You might get invited to a tree-trimming party, a Christmas concert, or even caroling (though you might be more inclined to watch than to participate). You might even have a holiday tradition that seems “Christian.” In my case, the season is never complete until I’ve seen the tree at Rockefeller Center, at night, with my kids.
In the end, though, you are acutely aware that this is not truly your holiday. You have your own: Hanukkah (which started last night, by the way). It’s a nice little holiday. There is the menorah you light to commemorate the victory by Judah Maccabee, who restored worship at the temple in Jerusalem nearly 2200 years ago. There are latkes and jelly doughnuts and chocolate coins and dreidels to spin. And as Adam Sandler’s comedic Hanukkah song points out, rather than just one day we get “eight crazy nights.” Let’s be honest, though: Hanukkah is no Christmas. It’s not a major holiday on our calendar, like Rosh Hashanah, Yom Kippur, Passover, and a host of others. Were it not for the proximity-to-Christmas timing—with the exception of last year’s Thansgivukkah—it would barely move the needle at all.
Which brings me to my daughter, Isabella. She goes to Hebrew school and loves learning about Jewish history and traditions. She is proud of her religion and loves saying the prayer as we light the menorah each evening. Yet she also desperately wants us to get a Christmas tree. She’s been asking me for years, though her persistence recently reached a new level.
My answer, reinforced by her older brother (who is not nearly as caught up in the spirit of the season as she): “No. We are Jewish. This isn’t our holiday. We have Hanukkah.” She was hardly dissuaded. She’s pointed out that we give out presents both at Hanukkah and on Christmas Day. This is true, and a concession to my wife, whose family always celebrated this way. She’s suggested we could have a little mini tree to decorate—what she has cleverly called a “tree of life,” which also happens to be the title of a popular Jewish song they sing in class.
Still, I’ve refused. I’ve explained that we have our own traditions, and that Christmas trees aren’t one of them—and never will be. I explained that wanting a tree made it seem like being Jewish wasn’t enough for her. And I asked her to please stop asking. It made me feel like Tevye in Fiddler on the Roof when he disowned his daughter Chava for marrying outside the faith. Or, to cite a more contemporary example, like the Grinch before his heart grew ten sizes plus two.
Isabella gave up, sort of, but she didn’t give in. A few days later, she came home with a small branch that had fallen off at a nearby Christmas stand. She put it in water, added an “Isabella” ornament she had once been given, and put it alongside a singing snowman that her mom had once bought her. Every day on her walk home from school she scoped out more branches and added them. It was a bit pathetic—reminiscent of Charlie Brown’s droopy little tree (before its absurd transformation at the end courtesy of his friends’ decorations)—but also oddly charming.
I have to hand it to her: Isabella found a way to embrace a symbol of the season without technically going against my wishes. Call it a pine-scented loophole. I decided to let her enjoy it, her own little Christmas miracle—even though I’m sure she envisions this “tree” (like the one in her favorite ballet, The Nutcracker) growing magically bigger and bigger in future years.
David Sparrow is a senior editor at Parents and a dad of two. He knows “You’re a Mean One, Mr. Grinch” by heart.
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Monday, December 15th, 2014
This is getting ridiculous. My 8-year-old daughter Madelyn is starting to make requests of our Elf, Max, that I’m starting to think go beyond the call of Elf Duty. It first began, right after his arrival at Thanksgiving with her leaving notes next to where he was perched. Things like, When is your birthday? What is your favorite color? What is your favorite snack? Max obliged with these questions because it was cute, and he was sort of in awe that she still believed in him. But his replies only sparked more questions. And not just from Madelyn. The neighborhood kids came over to see Max’s responses and started asking about their Elves: Why is Elfie-Belfie not at Ava’s house yet? Are you friends with Bob the Elf? Why didn’t Bob move last night?
Max replied with an assortment of cleverly-thought out answers. You better be careful, my husband warned, The neighbor parents aren’t going to like being out-shined by Max. So Max replied in his Elf scrawl: Elfie-Belfie was held up in traffic; Bob has been working at overtime at the toy shop and was too tired to move….
Of course, that just made it worse and the next night Madelyn left this (see pic): Max was in over his head. What the heck could he put in that bag? How old is an Elf anyway? But more importantly, how can we keep the spirit of the Elf alive without making this a nightly scavenger hunt. (This is interfering with my binge-watching of The Affair!)
I posted this pic on Facebook and some friends offered advice: Just say Max is too tired to fill the bag; don’t answer all the questions, just some, say he loves friendship and kisses, etc. But then other friends revealed they were in even deeper with their own Elves. One had a special door for their Elf to pass through each night, another sleeps in a little house made especially for him; and yet another has to write back to her daughter’s frequent questions in teeny-tiny Elf handwriting that she started from the beginning and is now getting hand cramps.
In a way I’m glad to hear I’m not alone, but at the same time, geez. What did I get myself into? For all you Elf Haters out there (let’s hope you haven’t gotten this far in this post): It’s still worth doing. And frankly, this is likely the last year. My 6-year-old son could care less about Max (I actually don’t think he believes; he’s made a few snide remarks already: Um, why does he have a tag?) But Madelyn will be 9 next year and even though she’s now a Believer it’s entirely possible the magic will fade by then (or she’ll still be up reading and catch me in the act). So like the many other mini milestones in our children’s lives, I’m trying to enjoy this one while it is still here.
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