Every Day is a Miracle

Several years ago I discovered Little Man: The Movie (not the comedy film!) when my friend Kristin (another preemie mom) recommended I watch it. It’s the story of Nicholas, born 100 days early and weighing just a pound, and the journey his moms took to birth him and care for him. It’s also the story of a marriage that is tested by the terror and stresses of having a medically fragile child. I’ve read that 70 percent of such marriages dissolve (and have seen that myself with many friends’ marriages) and ultimately, that was the result for filmmaker Nicole Conn and her then-partner Gwen Baba. When they learned that their baby (carried by a surrogate) was not thriving in utero, the doctors suggested termination. But Nicole had a belief that the baby was meant to live, and she pushed through the doubt.

While Nicholas struggled for life in the NICU, Nicole did not give up hope that he would live and lead a happy life. This film broke my heart, not just to see what Nicholas was going through, but also to see that Nicole was bearing the NICU and loving her child mostly alone. It’s hard enough to survive the NICU with a partner, much less alone and mourning the loss of what you had hoped for your baby. I was also amazed that Gwen allowed their story to be filmed and for her to be portrayed the way she was. But it all depends on your perspective…some people probably thought that Nicole was the selfish one.

I remember having a conversation with an acquaintance who is a nurse-midwife, and she told me that she didn’t think it made social and financial sense for society to save extremely premature babies. It astounds me that she told me this, since Christopher was a 24-weeker, and she knew that very well. I was stunned…but many people believe that and would terminate a baby if they were told the baby would not be perfect. I think that Nicole and I share the perspective that things happen for a reason, and that our preemies were meant to live. We had to cling to that hope. By the end of the film, Gwen had come around…but I wasn’t surprised that it was a fragile reunion, not strong enough to last.

Now it’s 10 years later. Nicole, Nicholas, and his sister Gabrielle have been welcomed into a new family–that of Nicole’s new partner Marina and her loving children. Nicholas is a beautiful, innocent, and wonder-filled child. I just watched his birthday video and dissolved into tears.

Nicole and I have become internet friends–once you survive the NICU, you befriend anyone else who’s been through what you have been…especially people who see the world in the same way. I know she went through some pretty awful years there, so I’m so thrilled that she is living the life she always dreamed of. Here’s an excerpt from Nicole’s message to her friends and Nicholas’ fans:

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 it’s 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.

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 retuned, 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.

 

Happy birthday, Nicholas! I love to see you surrounded by your brothers and sisters, where you belong!

-Marie

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