REGISTER NOW: Young Child Expo & Conference!

January 11, 2013

Hi Everyone,

Deb and I are excited to alert you to a very special conference that is not only perfect for professionals but also preemie parents and special needs parents, too.

2013 Young Child Expo & Conference – April 17-19, 2013–New York City’s Hotel Pennsylvania (across from Madison Square Garden) Great Speakers. Great Learning. Over 75 speakers presenting on topics affecting typically developing children and children with special needs. EIP Scholarship, Early Bird Special, and Group Rates available. Make this your Professional Development Day! For our printed conference program go to www.youngchildexpo.com and download it. For Information or to Register call 1-212-787-9700 x 333.

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A Standing Ovation for Amanda & Family

June 25, 2012

We are honored to include the very eloquent (and wise beyond her years) Amanda Fleming’s letter in this post.  After watching “little man” she was moved to connect with Nicole and tell her 10-year old brother Shel’s story.  Amanda, we give you a virtual STANDING OVATION for sticking by your brother and your parents through this very tough journey as a family.  You are truly amazing!  Please update us when you have a moment.  

Hi. I’m Amanda Fleming. I’m 19, and a sophomore in college.

I have a ten year old brother named Shel. Shel was born with a severe mitochondrial disorder. I don’t want to assume that you don’t know much about it, but most people don’t, so I’ll give you a little bit of background. Not nearly enough research has been done on mitochondrial disease, and the disorder varies greatly from person to person, so it’s difficult to generalize. Shel’s mitochondrial disorder is increasingly progressive. Born without any sign of the disorder, he has since developed enough medical problems that I myself am not even aware of all of them. I suppose most importantly, he has dysautonomia and gastroparesis. He currently has a G-tube, a J-tube, and a central line. He can’t eat, can’t speak, and loses abilities everyday. He used to be able to eat regularly, and at one point he could say a few words. So he knows what it was like, and remembers it. Walking is becoming difficult for him, especially being attached to so many tubes and pumps. He does use sign language, and knows quite a bit, but not enough to express himself to the point where he is not constantly frustrated.

Shel in the Hospital

I’d say that Shel has spent at least one third of his life in the hospital. When he’s in the hospital, up to weeks at a time, my mother does not leave. She sleeps in the hospital bed with him every night. I almost feel though that the time that he’s home is even more difficult for her. We’ve tried many live-in nurses, but the medical attention he requires is so complicated that only my mom is able to keep up with it. I haven’t seen her do anything that I would consider enjoyable in years. I’m sure you know how intense the care for G and J tubes, along with a central line is. He receives at least 35 different doses of medication a day, which she must administer through his central line.

I’ve only recently admitted to myself what an affect this has had on my family. I’ve spent about 4 months of the last three years in a psychiatric hospital for depression. All of the many, many therapists that I’ve seen have assumed that my issues are attributed to his. This has always made me furious. But recently I’ve discovered that maybe, at least a little bit, I’ve been in denial. My family seems perfect, even to me. I couldn’t ask for a better one. But it is quite obvious the strain this has put on my parents’ relationship. Because my father is the only source of economic support in our family, he works from early in the morning late into the night. He hasn’t taken the time to learn how to take care of my brother, but I honestly can’t blame him. I can’t even imagine the impact it will have on everyone in my family, especially Shel, if they separate.

Shel at Home

 

I am not sure whether I want to spend my life with a man or a woman. But I am even more sure that I’m already in love with my future child. I’ve always felt it, and felt as though I know them. I can’t really describe it, but my child is already a part of me. I’ve had my heart broken twice in my rather short life time. But what makes me feel better is that I know that I will love my child more than I’ve ever loved anyone else. I already do. The thing is, the mitochondrial disorder that my brother has is genetic. There is a chance (I’m not sure to what degree) that my child will have the disorder. This breaks my heart, because I honestly do not believe that I am capable of properly caring for a severely ill child, mentally or physically. I wish more than anything that I could.

I can’t remember the last time I did something alone with my mother, or even have longer than a ten minute conversation with her. Often when Shel is in the hospital, they are three hours away at Boston Children’s Hospital. Having been in high school, and now college, rarely do I have the opportunity to visit them in Boston. During my junior year of high school, a month and half went by that I didn’t see my mother or brother.
Amanda Fleming

Shel’s Sister, Amanda Fleming

But, in my eyes, it’s worth it. Despite the physical and mental pain that Shel is in at all times, he has a spirit stronger than anyone I know. He is also the most loving human I’ve ever encountered. He spends most of his time in bed, and one of my favorite things to do is lay with him and read or talk with him. My mom tells me that every morning as soon as he wakes up, he asks if I’m okay. His prognosis does not look good. I’m aware in my mind that he won’t be with us much longer, but I can’t accept it in my heart. After ten years of his life, I’m finally starting to. It hurts more than anything.
I guess what I’m saying is that I’m so thankful that you made the documentary that you did. I can’t imagine how hard it must have been to make that.
I hope that you have time to read and respond to this, but I absolutely understand if you do not.

With all the love in the world, 
Amanda Fleming


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Preemie Book Contest!!!

May 14, 2012

Deb & I are thrilled to see our newsletters take off!

In the May edition of PreemieWorld’s Preemie Family and Preemie Professional we are doing a contest for our awesome book “The Preemie Parent’s Survival Guide to the NICU” and all you have to do is make sure you are subscribed to either of our free print newsletters.

It is that easy!

Sign up here for Preemie Family.

Sign up here for Preemie Professional.

For professionals who want to receive Preemie Family for their patient families go here.

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Thank You from Nicholas!

March 20, 2012

In tears of joy and sheer gratitude Sunday nite while catching up with my emails…so many people responded to Nicholas’s Bday announcement…it made me wonder if you did a “Shane’s Wall” (you know from the L Word – I know a little creepy but think of the same architectural concept – not for salacious entertainment.) I’ve often wondered if you could count up every human being he’s touched and in what way, from medical, to the intern that was on rotation for that week in the NICU, to the radiologists who had to give him KUB (exams of stomach) – all the nurses, the hundreds of families that came and went during our 158 days in the NICU, all the specialists, consultants, surgeons, OR staff, his team of therapists, speech, augmentative, occupational, behavioral, music, playtime, then home schooling teachers… like how many people have laid hands on Nicholas in his young little life? And then add each and every person that’s seen the film… from all its many festival screenings to Showtime’s Mother’s Day premiere of the film, to all the endless airings, and then students who watch it in curriculums around the country…and just now through Wolfe Video all downloadable viewings on Netflix, iTunes and “little man” just got picked up for Hulu. It just blows my mind when I think of how far reaching his ripples in the pond gently lap against an infinite shore line filled with strangers who become family the moment they look into his beautiful eyes, watch him gut laugh, or simply play while singing a Bach’s Adagio and I mean he sings every instrument! He’s the great uniter and has brought so many of you into our lives for which we are truly thankful. Hope you all had a heckuva weekend!!

xoNicole

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Nicholas is TEN YEARS OLD TODAY!

March 15, 2012

To all the many wonderful people who have written us by email, FB, twitter and letter…

My “little man”… Ten years later

Nicholas is TEN!
First of all I thank my God and Nicholas’ for the course of his destiny that I get to say it’s Nicholas’ TENTH birthday on the 15th of March! Our lives have all been so deeply and profoundly affected by this little miracle man who I fall in love with more every single day.

Nicholas is like no other. How could he be when his entrance was like no other?

I cannot believe its ten years now. I never knew this day would come and never counted on it, but believed in it all the same, just as I see him at 29 playing cards with me golden sunlight dappling his hair. I believe with every fiber of my being that Nicholas was always supposed to be here for many reasons, not the least of which was to be a messenger, an unexpected guide, a wise teacher in the very meaning of life itself and how we, as humans, must have hope, must believe and most certainly must love and truly be grateful daily for every richness we are provided.

I get more fan mail from “little man” than all my other projects put together. I believe it is because his magic touches everyone and his love and spirit allows for people, no matter what situation they are in, to feel and know hope. I saw first hand the effects of having faith and the power of prayer (whatever your prayer may be). I used to sing (badly!) my prayers to Nicholas over the isolette knowing he’d hear/feel my ode to his being through the thick plastic “Salad Bins.” (as some of us moms referred to the scientific incubators).

Nicholas’ fans and peeps will be happy to know we’re putting together a downloadable booklet entitled “Love Letters to Nicholas” featuring letters to Nicholas from ALL over the world. These letters are truly amazing in their depth, their intimacy, their impact. Deeply profound letters from young girls and boys to elderly grandmothers of preemies or special needs children. They are STOP THE PRESSES letters, that make me stop whatever process I’m churning in to remember everything in my life that is so dear and precious and how so much of that is due to Nicholas.

Nicholas Plays Cupid!
I don’t know how many people know it was Nicholas that played cupid to Marina and I meeting? If not for Nicholas we would not be together, would not have made two more films, would not enjoy this gigantic family with six kids a dog and a nurse!! “Love Letters to Nicholas” is in the process of being compiled and will be ready sometime late summer/early fall.
And yes, “little man, Rainbows & Butterflies” (The Sequel’s working title) is already in pre-production, the last 8 years of footage being digitized….afterall, the cameras never stopped. Slowed down a bit, but he as well as the rest of our family remains one of the most photographed kids on the planet (Marina having been a celeb photographer and me being a filmmaker, well…the kids don’t stand a chance)! The sequel is for all the many folks who ask, without fail, how is he doing now?

At Last – How is Nicholas Doing?
In a nutshell, Nicholas looks like any other kid (well, I think he’s beautiful, delicate features, searing blue eyes and the longest lashes ever! Course you can’t ever see them because of his coke bottle glasses) but his life is very different. His intelligence is at times savant-esque, yet he operates at roughly a 2 ½ year old level. He has his own language, “Nicholese” – half is English, half is what we all believe to be a true language, we just haven’t found an interpreter yet. His sense of humor is timeless! He is one of the funniest kids I’ve ever been around.

The reality is Nicholas still lives on monitors at night. He is still medically fragile, misses 75% of his school days and still requires 24/7 nursing. In every other way he is a little boy who wants to dig in the dirt, laughs hysterically at the splash of water he makes with his feet in a pool and tries like the dickens to get out of “Nite Nite,” luring me with one more kiss, one more snuggle. And who can say no to a child who is pure grace, tender gentleness (it makes my heart ache he’s so gentle with flower petals), spontaneous guffaws as he charms his way through your heart.
Yes, he’s irresistible. People are drawn to him like a magnet. I and no one else can ever feel sorry for themselves around him, because being with him, REALLY being with him, is like getting your heart re-tuned, your soul generously nourished and your perspective reset to remember what’s important. If you ever want to learn, “live in the moment,” – that’s Nicholas. He is indelibly INSIDE every moment.

Thank you again and check back for more!
Thank you all, for the many letters, the many emails, FB’s and twitter posts on behalf of Nicholas and the family. We love and adore you… and look forward to you seeing all of Nicholas in his glory very soon.

All Love & Gratitude,
Mommy CoCo

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