Brainiac

This is a photo of Charlie and Kendall taken just after Charlie’s sixth surgery at Cedars, the fourth surgery he had on his brain. It was a little over two years ago and, as always, we were given all sorts of dire prognoses about what we might be facing with Charlie as a result of the brain injuries he suffered just after his extremely premature birth. When he was born at 24 weeks, he weighed 1 pound and had a Grade 4 brain bleed (intraventricular hemorrhage) on his left side, which is the worst one you can get, and a Grade 3 on his right side. I haven’t looked at any online boards for parents of premature children in a long time but I just glanced at one and this is the first thing I saw:

My son was born at 24 weeks and he has a grade 4 brain bleed on the left side. We have been given very grim news and pretty much told he will have cerebral palsy and mental retardation. He may not walk and so many other bad things. I asked the doctor if my son could possibly have mild palsy and he said he feels there is an 80 percent chance it will be moderate to severe. Why, why, why is what I keep asking myself. Why my boy, why any little baby? This is horrible and I am so scared and wish the doctors would give us some hope, but is there any hope?

I could’ve written that, word for word, except Charlie’s condition was a bit worse because he had two brain bleeds and other problems. I get why doctors feel the need to provide parents with worst-case scenarios in situations like this. They want the parents to have all the facts, they want to make sure they’re not in denial about the challenges ahead, and yes, they want to cover their butts in case things get really bad.

I have nothing but admiration for most of Charlie’s doctors and I’ve never wanted to kill the messenger (well, almost never). But I do wonder if stressing worst-case scenarios is really the most effective plan. My mother-in-law was telling me last night about someone she met who was getting a PhD on the physical aspects of “hope.” Apparently there are a lot of new studies that show how patients do much better when they are given reason to believe that there IS hope in their situation, no matter how dire it may seem in the moment. That makes so much sense to me—it’s not about lying to patients or families, I don’t think anyone would ever want that, it’s about the medical staff acknowledging that they don’t know everything, that every person is unique, and that the power of hope, prayer, and positive thought should never be dismissed.

To be fair, our doctors always combined worst-case scenario meetings with a standard reassurance that the brain is “plastic,” meaning that even though the parts of Charlie’s brain that control certain functions were damaged, he could learn to use different parts of his brain to do the same things. It’s an amazing organ and, of course, as much as these brilliant doctors know about it, I think they’d be the first to admit that medical science has only scratched the surface. 

There were many dark days back then, we were told so many scary things about Charlie’s condition and his future. One time I accidentally overheard a doctor who'd been present at one of Charlie's brain surgeries say to another doctor, “It looked like a bomb went off in there!” But I also remember the day when we were told by a doctor that Charlie had gone from having less than a 50 percent chance of survival to just over 50 percent. To us, that seemed like the best news we’d ever heard, I remember practically dancing out of the NICU that day. We had no idea what we’d be facing in the months and years to come, but we finally found the comfort of surrender: it didn’t matter. Whatever happened, we’d deal with it. We’d already lost Charlie’s brother (who didn’t have any brain bleeds) and we’d seen Charlie fight through five months in the NICU that included many terrifying moments. That kid had a will to live. 

When Charlie was in the NICU, I spent every free moment Googling “24 weeks, Grade 4 brain bleed,” scanning every result for hopeful outcomes, especially among older kids. That’s part of the reason why I post all these videos of Charlie on here. Okay, I’d probably do it anyway because I’m a parent and think my kids are amazing, but I want to give hope to people who are dealing with that terror right now. No matter how old Charlie gets, those NICUs will always be full of sick babies and terrified families. It makes me feel so great every time I hear from someone who has found some comfort by reading about Charlie on this blog.

For all parents, a child’s development is so gradual that you suddenly find yourself saying, “Huh? When did he start doing that?” I remember when there was worry that Charlie would never talk. Then I remember the concern that he only spoke in one or two word sentences. The other day I actually started counting the number of words in his sentences because I couldn’t believe he was talking so much. There was a 14-word sentence in there: “I want to throw this away in the white trash can in the kitchen.” (Charlie is all about trash, recycling, dumpsters, and garbage trucks!)

Last week he had an evaluation by an occupational therapist who said that while he still has some physical issues that can be addressed, she was thrilled to see how well he was doing cognitively. Charlie has a way better memory than I ever had. He can hear a song once or twice and repeat it in its entirety. The same goes for books. Below is a video I just made of Charlie reciting a nursery rhyme on his own. I had no idea he knew it until he just started blurting it out:

 

Notice how he started clapping and then remembered that he hadn’t finished the verse and went on. Here’s another recent video that I already posted on Facebook of Charlie singing one of the most ridiculous songs from my childhood. Again, I had no idea that he knew it so well (I guess I’d been singing it around the house):

 

I’ll refrain from my usual apologies for posting such videos and instead address the terrified Googling parents of premature babies who’ve somehow landed here. Please know that there IS plenty of hope—give it time and your babies, too, will be walking and running and singing wildly inappropriate songs! 

Comments

[Chrisy]

I haven't shared photos of Charlie with our sons in quite some time. They'll be happy to see how well he's doing. We'll all stand around the computer and clap. I promise. Also, I agree with you about the power of hope. I've personally experienced different outcomes based on—what I believe—was my defeatist vs. hopeful mindset. Even when we've received heartbreaking information about one of our sons. LOVE the videos!

[V-Grrrl @ Compost Studios]

On my refrigerator, I have the Emily Dickinson line: "dwell in possibility."

Accept that we don't know, that all things are possible, and the world becomes a bit more frightening but also more miraculous.

I remember reading all the early Charlie posts, remembering my time in the NICU with my own son (who was never even close to as ill as Charlie) and the time I've spent at children's hospitals. There is simply nothing as hard as seeing sick children and worried parents. What joy to see Charlie and what a blessing to share with all the parents grappling with fear right now.

[Peggy Shecket]

Love seeing Charlie's videos and I can hardly wait for his first stage appearance. Having worked in the NICU I can say that each neonatologist has his/her own style. Some say the worst possible scenario and others lean the other way. No one truly knows the outcome of an early brain bleed. We just have to closely observe the development of the child and see their GIFTS - and then the challenges, if any.

Thank you for sharing Charlie with us. It is a joy to watch him grow!

[Jane]

This post and these videos just made my heart soar. I feel so privileged that I "know" your family and Charlie -- your writings about him have made me feel like part of your extended family and I'll always remember the honor of being able to hold him in person.

[jd]

Charlie's videos made my day. I love Charlie!

[Marilyn Molnar]

Dear Danny, May you post these videos of Charlie for 120 years. (It sounds better in Yiddish, but I don't know how to spell the words.) By the way, how does one say "diarrhea" in Yiddish? Love, Bubbe Marilyn

[Laurie]

Thank you. Thank you. Thank you.--For the update on Charlie. I wish I could see him more often, but regardless he will always have a special place in my heart. I am so thrilled to know he is doing well. Yay!

Good for you too for giving people who are similar situations hope.

[Danny]

"Layseh mogen," Marilyn! But just in case people didn't get the joke and think you're off your rocker, here's the link to what you were referencing!

[OldOldLady Of The Hills]

The Miracles of the Unknowns....Hope and Love and Prayers and Humming and White Light---But mostly, that little darling Charlie's WILL TO LIVE!!!!
This post is Very Very Dear, Danny

[debra]

I had lost touch with your blog... davka when I was on your side of the pond... Here in Israel,you are a click away... I loved the Dick Van Dyke post and then followed with this gem... so happy to have such a wonderful update on Charlie... who's chatter and facility with words reminds me of my grandson who is now 4 and 1/2 and his poetry recitations 2 years ago... in the carseat behind me on a long summer drive...
lovely... thanks and shana tova umetuka meod...

[Kerry]

A Beautiful Thing! xo

[amba]

Love love love you, Charlie.

[Maura]

An absolute angel

[Steve Warren]

Wow. I've been following for quite some time and only rarely comment. I couldn't be happier for you and the family. What a cool kid! And what a sparkle in his eye. That speaks volumes.

[Julie R.]

Thanks for a wonderful post, Danny. I know I've said it before, but I adore that boy!

[Gordon]

Dear Danny,
---First, I have to yell at you because it's been SIXTEEN DAYS since you last posted on your blog. LOL. Take that as a compliment because all of us "Jew Eat Yet?" addicts so look forward to each entry.
---Second, I can't explain why I find Charlie so adorable. Part of it has to do with his many victories, overcoming incredible odds. His battle was such an emotional roller coaster. Everybody loves to see the underdog come out on top. And, just look at him now !
Thanks,
Gordon

[robin]

Please don't ever stop posting your wonderful video's of Charlie! He brings Joy to all who know his story and yes HOPE too! He is amazing DANNY, truly a gift from God! I am so happy to hear science is getting with the program because as good as it is Hope, FAITH and LOVE mixed with the science of medicine now there is a winning combination! You sharing the knowledge and love of what your family has been through is amazing HOPE for others now in your shoes! Charlie is Bright and funny and wonderful and oh so cute! And yes a miracle!!!

[mandy]

The only problem with you posting videos of Charlie is that, if wearing any sort of eye make up, it is totally destroyed by the end of your post AND the fact that every time I see videos of Charlie, I think,"Oh geeze, he is so far AHEAD of my daughter, we have some catching up to do!" (:
I love what you have to say about hope and positiveness, and trying as hard as possible to not live in fear. This is such wisdom for parents in every situation, in fact it is the basis of the entire course I teach on childbirth for expectant parents. Changing a paradigm of fear into, as you said, a sort of beautiful surrender and while in that place of "just being" dwelling on all of the potential good instead of the negative.
Charlie has such amazing parents! I'm so proud to know your family, to see him grow, to be able to soak in the joy that just emanates from him! Thank you, thank you for this post Danny!!

[Catherine W]

Aw Charlie is just gorgeous. Those videos have me in tears, he's done so well.

I find it very strange to think that the NICU still exists, with its sick babies and terrified families. We were also given the worse case scenario with regards to J's brain after she had some bleeds and, as you say, I can understand why that is necessary but whether it is really the most effective plan is a moot point!

He's done so amazingly, it just goes to show that the brain is an amazing thing and that you can never predict how things will work out from such difficult beginnings.

[Judy]

I love reading and seeing your blogs about Charlie. I also am a Feldenkrais Practitioner and want to share with you my favorite you tube video about the method: Healing Quest: Feldenkrais Achieves What Medicine Could Not
LightbridgeMedia. Wonderful video of someone whose life has been enhanced by Feldenkrais and his work. When physical thereapy has done all it can, Feldenkrais continues the improvements. Check it out.

[The Pliers]

Danny,

I'm so delighted to be able to drop in on Charlie singing and clapping out "Patty Cake..." and "My Baby Does the Hanky Panky!" And I think that it is particularly lovely that you have used his new songs as a way to encourage currently worried parents and children rising to challenges that no one ever thought they would have to rise to.

I just hope one day to hear Charlie sing "Plastic Jesus" from "Cool Hand Luke"(http://www.youtube.com/watch?v=zxHSV5sZ0oI):

"Well, I don't care if it rains or freezes, long as I got my plastic Jesus, sittin' on the dashboard of my car.
Comes in colors, pink and pleasant, glows in the dark cause it's irridescent
Take it with you when you travel far.
Get yourself a sweet Madonna, dressed in rhinestones sittin' on a pedestal of abalone shell
Goin' ninety, I ain't scary [sic - 'wary'], 'cause I've got the Virgin Mary, assurin' me that I won't go to Hell.
Get yourself a sweet Madonna, dressed in rhinestones sittin' on a pedestal of abalone shell
Goin' ninety, I ain't scary, 'cause I've got the Virgin Mary, assurin' me that I won't go to Hell."

It makes me very happy for you, Kendall, Leah, and your greater extended families to see Charlie singin' up a storm!

[Kimberley]

Those videos are too cute. What a sweet little voice he has .. I love how he's so proud and un-self conscious about singing the hanky panky! Go Charlie!

[Dave Crawford]

I love the Charlie update videos.

[Tracey Dear]

I need to get back to this community, we spent so much time trying to put as much distance from the NICU and there tubes & wires as possible.
Our Charlie had a 4 & 5 brain bleed and we were given all the doom stories. We would cling to the slightest bit of positive news. Well, he was reading at 3, taking advanced chess now, and has scored 3 goals this season for his soccer team. Here's to all the little Charlie's in the world proving them all wrong every day!

[Sarah]

I love this so much!

[Shari]

Smiling and laughing and crying while watching him sing.

[deborahlott]

Me Too. Smiling and laughing and crying and wondering when he heard you sing the Hanky Panky. I think we need a video of the two of you singing it together!!!!

[Don D]

Big wet eyes.
On me, that is.
Thanks for the best video of the week!

[churlita]

I'm so happy Charlie is doing so well. What a beautiful boy.

[david]

Does my heart good. Look forward to meeting him someday.

[Mary Shannon Baim]

Thank you so much for your generous spirit that has shared the worries, the love, and the glorious outcome. Best to you and your family. Should I ever see you on the street I will have to strongly restrain myself from rushing up and hugging you like a long-lost relative. Instead I'll nod and smile and keep walking, happy to have been included this way.