March 27, 2012
In our March edition of our preemie parent newsletter we learned about lovely Ava Elizabeth Moore, a former 30-weeker. Her mother Rhonda shares with us an update on Ava’s journey along with some photos from NICU to now.
by Rhonda Gobel, Ava’s Mom:
I once believed that character was determined by how well a person faces adversity. Some step into denial and stay for good. Others race to acceptance in high gear only to sputter out early in the fight. Five years ago I thought the only choice was to either step up and never, ever fall back or bow out and hide. No one is perfect and living through an extended medical crisis shows us quickly where our strengths lie. I like to think of myself as pretty resilient. Prior to Ava, I would rarely sweat the small stuff and if I could find a sliver of hope to hitch my wagon to, I would.
Five years ago I realized a person is only as strong as the moment allows. HELLP Syndrome as my humble teacher, taught me I can’t always be in control and to save Ava meant saving me. As a mother, the guilt of preterm delivery is a hard one to work through and come to terms with. Your needs are paramount and for so many of us that’s contrary to what we think is good parenting; children first, parents second.
Prematurity weighs on you with a heaviness impossible to wrap your arms around. What I grudgingly regard as “prematurity fall out” has brought me to my knees more times than I care to remember. Watching Ava struggle to live, meet goals and developmental milestones others take for granted was more than I had bargained for and certainly more than I wanted for her.
I could recount the ridiculous trials of the NICU in my sleep: ROP, anemia requiring multiple transfusions, NEC scare, the ever present reflux, ventilator dependent and countless failed attempts to wean, a PDA refusing to close and a subtle new murmur. We can all recount the endless bradys and desats. Who can forget 101 ways to stimulate your preterm infant to breathe?
I could write a book exclusively on post NICU challenges of Failure to Thrive and feeling like an incompetent ditz because your darling refuses to gain weight. I can write an addendum on oral aversions and feeding therapy gone awry. I could swaddle your older, sensory challenged child in my sleep and give you a thousand reasons why “just” sensory issues and speech delays do not put your child on the spectrum but still require consideration, therapy, a different approach to life. I could quote statistics on the incidence of specific learning disabilities, autism, ADHD, and global developmental delay by gestation at birth for preterm infants with startling accuracy. If I had the time I would explain the difference between competent and concerned professionals and those running on autopilot. I would highlight faulty reasoning and arrogance of providers with a postscript on patient rights and advocacy. I could tell you five years later I am still unraveling the depth of my own character day by day with Ava as my guide.
Five years ago I found myself begging for Ava’s life. I asked only for the chance to love and keep her safe. As the years of therapy and medical mayhem became second nature my hopes for Ava grew little by little. I allowed myself to see the promise she inspired and not just the developmental milestones I hoped she would reach. Not only did I want her to walk but also I hoped she might run. When we sat day after day in laboriously slow and monotonous feeding therapy I hoped she might someday enjoy a cupcake, just one small bite on her birthday.
As the list of disorders and specialists grew someone forgot to tell Ava. They forgot to remind her of her right-sided hemiplegia because she is right handed with stellar fine motor skills. She understands she tires easily but could care less what cerebral palsy means. Tiring easily means she’s carried when everyone else is told to step lively and stop complaining. She finds it hilarious when we discuss feeding therapy and sensory work because to her it’s now her chance to try new foods and talk me into cupcakes at the bakery.
I suppose the greatest testament to her growth came just last week when she was officially accepted into her siblings’ private school. Ava was drilled by the Head of School as well as the Director of Admissions and held to the same set of standards as every other rising four year old. When I received the call officially accepting Ava I burst into tears. Here was this little girl with an alphabet soup of delays and disability proving her ability to learn and grow like everyone else. In true Ava fashion she put her little hands on her hips, rolled her eyes and asked if I really thought she wouldn’t get in. And to think five years ago I was so worried.
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!!
March 15, 2012
We are excited to join Nicole’s family in celebrating Nicholas’ (aka “little man) 10th birthday today!
With that in mind, we are giving a 10% discount on all products in our PreemieWorld store with the special coupon code LITTLEMAN10YEARS
This special runs from 3/15/12 – 3/31/12 and only on the PreemieWorld store here.
Happy Birthday Nicholas!
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,