Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Remembering My Father

Today would have been my father’s 75th birthday. It is impossible to believe, even seven years after his death, that he is not with us to celebrate and be celebrated. Throughout all of Charlotte’s ordeals and her triumphs, I have been saddened by the fact that she will never know my father and that he never had the chance to know her. Philippe and I like to think that he and Philippe’s dad are somewhere watching over their granddaughter.

My father accomplished so much in his life–he was the first in his family to graduate from college, he started his own successful business which my brother continues to run, and he pursued a wide range of philanthropic and volunteer activities within the Jewish community. He once told me that of all his volunteer roles, he was most proud of what he accomplished while serving on the board and as president of the MetroWest Jewish News.

In his typically non-bragging manner, he never told me the details or extent of his work at NJJN. As I spend the day thinking about and trying to honor my father, I’d like to share with you the lovely obituaries that his colleagues at the NJ Jewish News published after his death.

10 July 13, 2000 NJJN – MetroWest July 13, 2000

Paul Goldman, advocate for pluralism and ‘NJJN,’ dies
by Rachel Nierenberg NJJN Staff Writer
Paul A. Goldman, a past president of New Jersey Jewish News and a strong supporter as the paper expanded, died on Friday, July 7. He was 68.

He was born in Roxbury, Mass., and lived in Brookline, Mass., Richmond, Va., and Livingston before he moved to West Orange, in May. Goldman was a contributor to the United Jewish Federation of MetroWest and a member of the William and Betty Lester Society, comprised of those individuals or families who make an endowment of $100,000 or more to the UJF. Because he was born into a family that did not have a great deal of money, Goldman recognized the importance of giving to others and shared his own success by contributing generously to philanthropic organizations.

Murray Laulicht, a past president of UJF MetroWest, credits Goldman with “being the first to present [the issue] of religious pluralism to our community.” In the late ’80s, explained Laulicht, Goldman introduced a resolution to the board of MetroWest federation,“bemoaning the lack of religious choice in Israel.”

As a result, Laulicht said, federation chose to grapple with the issue, eventually passing the resolution, realizing the importance of “solving these problems in our community and around the
world.” It was Goldman’s initiative, said Laulicht, that later enabled MetroWest to take on a role as a “national leader in promoting religious pluralism.”

Goldman served as president of New Jersey Jewish News for three years, from 1995 to 1998.

Recalling the “many mornings” that he spent with Goldman during his tenure as president, David Twersky, editor-in-chief of NJJN, said that Goldman “stood forcefully for the independence” of the paper. Twersky described him as “the strongest advocate for having a New Jersey Jewish News.” Indeed, it was during Goldman’s presidency that the MetroWest Jewish News — a single-edition newspaper for the MetroWest Jewish community — expanded and became the New Jersey Jewish News.

Two editions were added through arrangements with the Jewish Federation of Central New Jersey and the United Jewish Federation of Princeton Mercer Bucks; an increased readership came along
with them.

After Goldman stepped down from the presidency, Twersky said, he “never lost an opportunity…to push his agenda of a statewide Jewish newspaper.”

Amir Cohen, associate publisher of NJJN, said that Goldman’s leadership style was creative and unique; in fact, he “cannot imagine how a better job could have been done.”

Cohen recalled that in 1994, when he joined the staff, Goldman reached out to him at the first board meeting; he was the first board member to do so. That reaching out, he said, was quintessentially Paul Goldman.

“I think the word ‘mensch’ describes him,” said Michael Miller of Morristown, immediate past president of NJJN. Miller said that Goldman was “truly a leader — inspirational and a can-do person. He was charitable, cared about people and cared very much for the Jewish News and the Jewish people.”

David Mulgrum of Bed-minster, board member of NJJN, said that Goldman was a “gentleman to deal with and he will be missed.”

Goldman, a graduate of Brown University in Providence, R.I., was the founder of Paul Arnold Associates, an insurance agency in Livingston. Before establishing the firm, he worked for Markel Service, an insurance agency in Richmond, Va.

He was a member of Congregation B’nai Jeshurun, Short Hills, and a past president of the synagogue’s brotherhood. He also served as vice president and was a member of its board of trustees.

“He loved the temple and he loved music,” said Leslie Sporn of Short Hills, executive director and a past president of B’nai Jeshurun. “He loved to sing.” Goldman’s decision to donate a harp to the synagogue was indicative of the kind of person he was, said Sporn. “He did it to enrich our services…. It was meaningful to him and he knew it would give others pleasure.”

Goldman is survived by his wife, Pam of West Orange; two daughters, Laurie Cohn of Livingston and Ilene of Chicago; a son, Hal of Warren; a sister, Roberta Cohen of Wayland, Mass; and four grandchildren. The harp he had donated to the synagogue was played at Goldman’s funeral service, which was held at B’nai Jeshurun on July 9.

Editorial
Paul

Paul Goldman took over as president of MetroWest Jewish News on July 1, 1995. From the start he exhibited a calm and steady hand at the helm of the executive committee and board, leading the way to a rethinking of the paper’s relationship with the United Jewish Federation of MetroWest. It was Paul’s contention that the paper should be as open as possible to trends, thinking and controversies, and that in reporting as accurately as possible, the newspaper would be making its singular contribution to the Jewish community.

This was not as simple a project as it might now appear. There were certainly those who felt the newspaper should be more closely tied to the federation and those who thought its mission should be subsumed by the federated campaign, some arguing that the paper must therefore avoid divisive stories and opinions that might alienate potential donors.

But not Paul. He established strong working relationships with top staff and made clear his commitment to the professional nature of the newspaper. At the same time, he became closely identified with the effort to reshape Jewish newspapering in the state of New Jersey. During his tenure, and in no small measure due to his leadership, the MetroWest Jewish News evolved into the New Jersey Jewish News, reaching an agreement with the Jewish Federation of Central New Jersey to publish a weekly edition in that community and later with the United Jewish Federation of Princeton Mercer Bucks to publish an edition there.

The goal of branching out throughout the state in order to project a firm, powerful voice on behalf of Jewish interests became almost a personal mission. He was passionate about his beliefs and his commitments, including religious pluralism and liberties; took leadership roles in his beloved Congregation B’nai Jeshurun; was hardworking and responsible to a fault; loved his family above all; and was always a gentleman. May his memory be for a blessing — and may we stay committed
to his goals for the Jewish community and people.

Many, many thanks to Mollie at NJJN for dropping everything today to get this text to me electronically.

Both of the above texts are copyrighted by NJ Jewish News.


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780 Days

June 18, 2007

I have been a mother for 780 days, almost to the minute.

In those days, I’ve laughed with my child, cried for her, held her, changed countless diapers, cleaned up more vomit than I care to remember, and read many bedtime stories. I’ve been exuberant and exhausted, overwhelmed and overjoyed. But, I’ve never been bored.

I’ve watched my daughter recover from 2 open heart surgeries, a g-tube insertion and 2 cardiac catheters (that’s 5 rounds of anesthesia, 3 breathing tubes, 2 central lines, countless blood draws, x-rays, and echocardiograms). I’ve taken her to a feeding clinic, an ENT, an opthomologist, a dentist, a pediatrician, a cv surgeon, a cardiologist, a plastic surgeon (for the helmet), an orthotist (for the helmet), a gastro-enterologist, and a cardiac interventionist.

She’s been visited weekly by a physical therapist and a speech therapist. She’s been evaluated several times by an occupational therapist and a developmental therapist.

We’ve been to Gymboree, Torah for Tots, Music Class (en francais), and Art Class. We’ve been to Belgium, New York City, Wisconsin, New Jersey and Virginia Beach.

Charlotte has taught me so many lessons.

She has taught me to slow down and take notice of the world around me.

She has given me a whole new definition of bravery.

She reminds me daily that laughter can cure almost everything. That it’s funny to fall down. That sometimes it’s important to say something over and over again. That it’s okay to babble just to hear what the words sound like.

I could go on and on.

But today, the 2nd anniversary of Charlotte’s homecoming after heart surgery and 49 days in the PICU, I just want to say that most of all, Charlotte has taught me the true meaning of gratitude, faith, and strength. She truly makes our house a home.

In Charlotte’s honor, I invite you to follow this link to a search result on the Congenital Heart Information Network website and read about many other families who have been touched by a child born with truncus arteriosus.


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Not Quite a Feeding Clinic Update

Hey, Mom, put down the camera and lemme at that pizza and those bananas. At Wolfgang Puck’s in the AA terminal at O’Hare. Charlotte ate nearly all of a container of Gerber Organic Bananas and had (and chewed) about 5 bites of my pizza.

We had a flat tire in Racine and had to wait 45 minutes to help. The receptionist told us that the team wouldn’t be able to squeeze us in late (understandably) so, once repaired, we turned around and went home.

I’m trying to reschedule, if nothing works out for this week, our next appointment on 7/12 (the whole family, including birthday boy Daddy).

In the meantime, since you’re all dying to know how she is eating: Charlotte is eating like crazy. She’s averaging 2 to 4 tablespoons of puree a meal and getting to 180-200 mls. of Pediasure fairly consistently throughout the day. Midge, the dietician/nutritionist at CHOW tells me that this is 1,200 or more calories a day (her recommended diet is aorund 900 calories a day) and that, based on her most recent food journal, she’s taking 90% of those calories orally.

Charlotte and Nemo, the flying fish, get a tour of the cockpit from Christine, our fab flight attendant, after landing in Newark 2 weekends ago.

She’s starting to really open her mouth. I bought some The First Years Take & Toss spoons when we were out of town and they seem to do the trick.

But…she’s vomiting almost daily again. Frequently it’s fairly large (4-6 ounces). Yesterday morning with Laura she ate 2 tbls. of egg puree, 2 tbls. of applesauce, and 200 mls. of Pediasure. about 5 minutes after she finished, she vomited all of it back up. Maybe even more than all of it.

We’re working (via email) with Midge and Trina (our RN at CHOW) to make sure that Charlotte’s meds are the correct dosage for her weight and then to reduce her caloric intake in case she’s vomiting because she’s getting too much. Yep, you read that correctly! After 2 years of worrying that Charlotte was not getting enough nutrition, we’re finally concerned that she might be getting too much. Hurray!


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Fattening, er, Feeding Charlotte

Now that it’s summertime, you may have noticed that Charlotte has a double chin, some little tiny fat rings on her neck and on her thighs. I forgot to mention in the feeding update that she weighed in at 28.6 lbs–a near 2 lb. weight gain in 3 weeks. She also grew 2 cms.

If you’ve eaten at our home, I hope you’re thinking that it is my home-cooking that is doing the trick. You know, the healthy, as-natural-as-I can-make-it, varied food that I love to cook. Of course I’m not feeding my daughter high fructose corn syrup, processed sugar and flour, boxed foods or chemicals. I’m not the totally organic type (cannot fathom the $6+/gallon for milk), but I strive for hormone-free meats, local veggies, etc.

Yeah right.

Her favorite food right now is pizza (puree). I make it for her from scratch. Here are the ingredients (I am seriously cringing as I post this).:


And here’s a picture of the finished product. In case you’re wondering, it smells and tastes quite good.


You don’t want to know what’s in Charlotte’s peanut butter and jelly puree!

How do I feel about this? Check out my LiveJournal essay from August 2006. I feel the same way today.


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Feeding Clinic Visit

Charlotte and I made the trek to CHOW for a 9:45 a.m. appointment. I won’t bore you with the driving details. Suffice it say, I left the house at 7:10 a.m. and pulled into CHOW’s parking lot at 9:35 a.m. It’s a 90 mile trip. The first hour was spent driving the 15 miles between my home and Wilmette IL. Charlotte asked me to let her out of the car, which she never does. We stopped at an oasis and “did laps” around the car!

The clinic visit went well. We met with Dr. Beth Long (the behavioral psychologist) and Amy Delaney. They had me observe while they fed her. Feeding is not Charlotte’s favorite thing, so it was especially difficult for me to not be allowed to comfort her when she got upset. Amy and Dr. Beth fed Charlotte hospital food (oh joy!)–special purees of pizza and green beans, ice cream and potato chips.

We’ve all agreed that Charlotte has some oral-motor ability problems. She has problems fully opening her mouth on command to place food on her back molars. She also has problems elevating her tongue to touch her upper lip (to lick food off the lip) and moving her tongue from side to side (to move food onto her molars).

This explains, of course, why she sometimes “hoards” food without chewing–she is not able to move the food onto her molars. Sometimes a small swig of milk lets the food move; sometimes it causes her to spit it all out.

The CHOW team is going to work with Laura, our local feeding therapist extraordinaire, on strategies to improve Charlotte’s oral-motor skills. We even have “chew toys” to give her more oral input. I’m having a hard time figuring out when to use them and how exactly, but when the folks at CHOW use them, we see marked improvement

The ride home was pretty quick, save for getting rearended by a Penske rental truck at a highway exit. If you’ve known me a while, you probably know that I’m a magnet for people who like to rearend other cars. As a result, I have a herniated cervical disk or two. Fortunately, I have a great chiropractor and wonderful yoga instructors, so this accident wasn’t too bad.

We treated ourselves with a trip to the Chicago Botanic Garden with Miff and Susan on the way home. Charlotte gave the three of us a guided tour of the kitchen gardens.


Next trip to CHOW: Thursday, June 21.


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Charlotte Digs Dirt

Literally.

And she thinks it’s really, really fun. She calls it “Helping Mommy” and is happily occupied while I garden.

She also loves her water table or “bathtub,” as she calls it. This is a little technique she calls, “Scoop it up. In the hair.” We would like to thank our Feeding Clinic team for that–it’s a variation of “Scoop it up. In the mouth” used to encourage her to open her mouth wide.

Other Charlotte-isms:

  • Our little miss refuses to say “Charlotte.” She prefers to call herself “you” or “yo,” if she’s feeling really silly. She can say “Charlotte.” She chooses not to and likes to tease us.
  • She likes me to sing to her. If you’ve heard me sing, you know that her taste is a bit off. She especially likes if I make up silly lyrics to songs she already knows.
  • Other favorite things to do (I asked her) are: atch Elmo DVD (Not a typo, that’s what she said. Not that she gets to do it very often.) ; playground; play Elmo-Cookie (Translation: play with her Elmo-Cookie magnadoodle. Thanks Blackketter clan!) ; paint; unning (Again, not a typo).
  • Finally, she’s a huge fan of the author/illustrator Jon Muth. The kid has kind of advanced taste! We read Stone Soup or Zen Shorts nearly every night. (Again, thanks to the Blackketter family!) She also really digs Mo Willems (okay, who doesn’t?), but she’s still a bit afraid of Leonardo the Monster. Go figure. Like every literate 2-year-old, she LOVES to tell the Pigeon that he can’t drive the bus. Don’t know what I’m talking about? Get thee to a bookstore or library immediately. Do not pass go. Do not collect $200. Go. Now. (Our friends give her the best books. Thanks to the Skopickis and Caros for Mo.)
  • She likes chocolate milk and strawberry milk. Proving without a doubt that she’s our kid.
  • She’s in the parrot phase of language acquisition. Now I really have to curb my truck-driver language. (no aspersions to truck drivers intended)

There’s so much more that delights us each day, but I don’t want to bore you with the details. Suffice it to say, she’s kind of a regular kid these days. Hallelujah!

Stay tuned tomorrow for a Feeding Clinic update. (She drank 780 today!)