Small Pleasures

Charlie took five bottles in a row yesterday. It was an accomplishment far more exciting to me than him getting accepted at Harvard or winning the Nobel Prize. The irony was that the doctors had just decreased the number of bottles he needed to take by mouth during the day because he he’d been having trouble and seemed to be getting too exhausted as he navigated the complicated process of breathing, sucking, and swallowing. The minute he wasn’t “assigned” a specific number of bottles, he seemed to really get it and take more than before. That so reminds me of aspects in both Kendall and myself—rebelling against authority and then rising to the challenge the second people stop telling us what we have to do.

Charlie now weighs 6 lbs. 3 oz. which I find absolutely miraculous when I remember his wizened, fragile body that was once barely over a pound. His size is no longer an issue at all in terms of his departure from the NICU. A baby from our bay went home yesterday who was way smaller than Charlie. But before he leaves our son needs to be on total bottle feeds and, of course, he needs to recover from the shunt surgery that is scheduled for tomorrow. The surgery will cause a delay in his feeding progress and will also create a temporary respiratory setback since he’ll be intubated yet again. But despite the challenging and largely unknown journey that still lies ahead (including far beyond the NICU) I can’t help but get giddy with excitement at every step forward Charlie takes. We can really see his personality now and it’s such a sweet one. He seems to have a way of interacting with people that I know will serve him well in his life regardless of any other disabilities he may have.

 This whole experience has been radically changing my perspectives on achievement, intelligence,  and success. I was sad to hear that Eunice Kennedy Shriver died this morning. Despite growing up in a family that seemed to place an incredibly high value on traditional interpretations of intellect, Eunice and her husband worked tirelessly most of their lives for others, people with mental and physical challenges and those in dire social and economic circumstances.

Eunice was always my favorite of President Kennedy’s sisters. I met her once when she visited the Kennedy-owned Merchandise Mart where my mother worked for many years. (In later years my mom’s boss was Chris Kennedy, Robert and Ethel Kennedy’s eighth child.) When Eunice arrived that day I remember that she asked the doorman to pay for her taxi fare because she never carried any cash. I don’t think any Kennedys did. Decades earlier, her husband Sargent Shriver was the General Manager of the Merchandise Mart. One summer in the 1970s when I was working as a mail boy at the Mart, I found a pile of dusty boxes in a back corner of an old storeroom that were filled with items from Shriver’s former office. There were original photographs of President Kennedy at Mart functions and a series of Time magazine covers from the 1950s that were each autographed by the person on the cover (ranging from Marilyn Monroe to Groucho Marx to Albert Einstein). I looked in vain for Eunice’s wedding dress which was rumored to be lost somewhere in the bowels of the Merchandise Mart but I never found it. 

I so admired how the Shrivers (like the Kennedys) were so committed to public service, but a 2005 Oprah interview with Eunice and Maria Shriver made me doubtful that I could have ever lived up to the pressures of being in that family. I’m sure it wasn’t the intention but by the end of the show I felt like the biggest slackard on the planet. Imagine growing up with the man who started the Peace Corps and Head Start and the woman who founded the Special Olympics. At the nightly dinner table the Shrivers talked about how to make the world a better place. Their guests would always have to answer Sargent Shriver’s favorite question: “What are you going to do to make a difference in the world?” What were we talking about at my family’s dinner table? The “I Love Lucy” rerun we were watching?

All around their house the Shrivers hung pictures of starving children in Africa, kids with disabilities, and children living in institutions so that they could discuss how their work was affecting people’s lives and brainstorm what else they could do to make an impact. Every Thursday night Eunice would plop down a piggy bank in the center of the dining room table and serve her large brood cereal for dinner so they could donate what they would have spent on food that night to the poor. Although they were richer than Midas, they tried to focus on ideas rather than possessions. Go, Shrivers!

I’m surprised those kids didn’t crumble under the weight of such high ideals and expectations. Maybe some of them did. Even Oprah said that when she first used to go to dinner at the Shrivers’ house she would hide in the closet when she heard Sargent questioning their guests about how they were going to change the world. On a visit to her parents before the interview,  Maria said her father asked her what she was working on. “I’m promoting my book that was just published,” she replied. “No, that’s in the past, what are you going to do next?” Oy, Sargent, can the woman please have a few weeks to rest on her laurels? I’m still trying to rest on the laurels of my sixth grade science fair project!

Some of the Shrivers’ claims defied credulity. Maria and Eunice told Oprah that they had never, ever, had a single fight. Is that even possible (or desirable)? Eunice said how important it is for family members to eat dinner together every night. I agree with that but she then said, “when I was growing up, I never saw my father go out to dinner in a restaurant once in our whole life.” Um, Eunice, forgive me, but does Gloria Swanson’s dressing room count as a restaurant if the butler serves them caviar and champagne in candlelight?

Eunice Kennedy Shriver’s death marks the end of an era. Only two of JFK’s eight siblings survive, Ted Kennedy, who is battling cancer, and Jean Kennedy Smith, who founded Very Special Arts, a wonderful organization that promotes the artistic talents of children with mental and physical disabilities.

During these past months I’ve often thought of all of the loss the Kennedy family has suffered through the years. While I don’t subscribe to the traditional Kennedy stoicism when it comes to grief, I admire the way they all carried on with their lives after their seemingly endless spate of tragedies. On Sunday we went to the beautiful but heart-wrenching memorial for Lily Burk, Leah’s classmate who was murdered a few weeks ago. There were over 500 people present and I was stunned and moved by the courage and strength showed by Lily’s family and friends as they spoke about this amazing young woman. Her death was so senseless and it is maddening to try to imagine why the world and the people who loved her should be deprived of all she had to offer. A feeling I’m sure is quite familiar in the Kennedy family.

The Kennedys and Shrivers are far from perfect even though they are frequently idealized (especially by me). They are flawed human beings like everyone else, but I still hope I am able to impart some of the families’ best values to Leah and Charlie without putting pressure on them to achieve “big” things. They may never be elected to public office, start a nonprofit organization, or travel to Third World countries, but there’s no big or small when it comes to thinking about others and standing up for what you believe is right.

Comments

[Edelweiss Transplanted]

(Coming over from Naomi's)
Awww, he is just gorgeous! He'll be in my prayers tonight for a successful surgery tomorrow. Loved your thoughts on the Shrivers.

[Pam G]

Thanks for posting the new photos and good luck with tomorrow's surgery. Charlie is definitely growing more and more each day. Wonderful.

The passing of Eunice Shriver this morning was another one of those "end of an era" moments for me. It is amazing to think of all the accomplishments in that one branch of that family. All social causes rather than arts galas and other "high-end" things.

I understand Sergeant Shriver has Alzheimer's now. What a shame.

A woman I knew as a child was a chef for the Shrivers for a long time and she had only good things to say about them. She always touted their good works and encouraged us (as young "Girl Scouts" about 35 years ago) to emulate them. If only! But inspiring us to volunteer did take hold for me.

[Julie R.]

Danny,
I'm thrilled about Charlie's progress! I love the picture of Leah holding Charlie...the red-headed dynamos. I'll be thinking about Charlie tomorrow.

Your comment about Gloria Swanson's dressing room is hilarious. I agree, although the Shrivers are admirable, I can't imagine the pressure of living in that family.

Love,
Julie

[Kathy Wagner]

Loved seeing the pics of Charlie, he looks wonderful! I will be praying for his surgery and quick recovery so he can come home asap! The day will come! I have seen it many times. Also enjoyed your thoughts on the Kennedy-Shriver families, you are a good writer. Have you written a book yet? Maybe you should...

[Margie]

Though your words and pictures soften my heart as always and I send my prayers to you all for tomorrow, forgive me for indulging in one moment of cynicism before I go to the bank to get some cash with the hope that the woman standing at the corner this morning is still there with her cardboard sign.

[Maria Sosa]

That picture of Charlie with the chubby, chubby cheeks....he looks so much like you to me in that. I don't know, just see so much Danny in him! (And that's a good thing.)

[Marilyn Molnar]

Dear Danny,

As far as I'm concerned, you rank right up there in the same league as the Kennedy's as far as your strength and inspiration to others who are in similar situations. My prayers are with Charlie, his doctors and you, Kendall and Leah for a successful surgery tomorrow. He is looking too cute for words; poo, poo, poo!

Love.
Marilyn

[Leightongirl]

Yay Charlie, and look at how grown up (and proud) Leah is. Best of luck with the surgery. I'll be thinking of you.

[Kimberley]

Good luck with the surgery Charlie, and hope to see you off home with your folks very soon.
xx

[gisa]

charlie is adorable!! we cannot wait to meet him!! please let us know when you are home. we'd love to bring over some dinner for all of you!! give charlie a big kiss. his playmate adele awaits his arrival home. we keep you in our thoughts and prayers.

with love, david, gisa, and adele

[Margie]

Re my earlier comment about being cynical -- doesn't belong with my appreciation of the open heart and generous spirit you are sharing with us here. I was in that moment, hurting for the hungry woman on the street corner, in contrast with Mrs. Shriver who had so much cash she never had to carry any. In the end the more important part of both your story threads, is the love.

[Elise]

Wonderful post Danny! So interesting and enjoyable to read. Also, it is a joy to read about precious Charlie's good progress, and I wish him a very successful surgery tomorrow with a smooth and easy recovery. My blessings for joy and good health go out to you and your entire family.

All the best,
Elise

[Wanda]

Stunning, Danny. Your last paragraph makes the post.

So glad to hear of Charlie's improvement. My dad is Charles, too.

[Jo]

Bless your beautiful boy, hoping everything goes perfect today.

[Helena]

Charlie and Leah will change the world for the better by just being part of it.

[Julie Schreiber]

Thinking of Charlie and wishing him well tomorrow. I look forward to hearing that everything went well. Love, Julie

[Judy]

My husband's family had someone who worked for them who had previously worked for the Kennedy family. They said there was lots of yelling and screaming in that household. it sounded just like my family. Amazing how we tend to forget the bad times but remember the good times after our parents pass away. I agree.. It's hard to believe Eunice's memory of her father never missing dinner.
I will continue praying for Chaim Charlie tomorrow especially. I hate operations. (I've had too many myself but not my brain, mine were all othopedic. As necessary as they are, they all suck.

[Gordon]

Dear Danny,
There are five siblings in my family, and only one of them had a child. She was born with cerebral palsy. My sister had the good sense to push her and force her to lead a "normal" life, and to achieve as much or more than all of the other kids her age, which she has done. So, there's my advice to you. If it turns out that our Charlie has any intellectual difficulties (poo, poo, poo !), push him toward greatness.

[Adriana Bliss]

I will be sending good thoughts and prayers for Charlie's surgery tomorrow!

[Jeff]

It sounds like Charie is doing great! I'm sending good thoughts for the surgery today and a super-quick recovery so you guys finally get to take him home. I won't say more since I know you can be supersticious but your news has let me smiling this morning... um, I guess, my appologies to the Kennedy family for that.

[Elaine Soloway]

Dear Danny,

I agree with a previous comment that you deserve credit for what you're contributing to the world. It's evident many people are touched by Charlie's journey. You are likely providing inspiration and support for others on a similar path.

Today, on your sister's birthday, I know there'll be extra special prayers for Charlie's surgery -- including mine.

xoxo
Fake Grandma

[david]

Hey, I started a nonprofit; you think Sargent Shriver would let me, maybe, take a nap??

It is indeed the end of an era. And a new era begins for you, Kendall, Leah and Charlie today and everyday. May it be long and wonderful.

[gorillabuns]

You've taught me a lot lately. About the Shrivers, your journey through loss as well as finding joy in the moments that truly count. Love knows no bounds and you prove it so gracefully when you write about your children.

Praying for a successful surgery today.

[mary]

Thoughts and prayers with Charlie and your whole family today. Danny, you are such an amazing writer, thanks again for sharing this journey.

[maggie may]

What a jam-packed, fascinating entry. Thank you.

[Elizabeth]

Hoping, praying the surgery went well for Charlie. It is a good thing to love, to weep, to hope for the best when the health of a child is on the line. Nothing is more maddening than watching the one we love suffer.