Ramblings of a Neophyte (orig. posted 4/22 on vox.com)

Oh God. An empty page to fill and so much to say. Will anyone but me care about the musings which rattle around in side my head, the conversations I have with God — or myself or the air, when no one else is around? Maybe this isn’t such a good idea after all but I have come this far…too late to turn back now, right?

Might as well just take a deep breath and dive in…

Hi, I’m Niksmom. Well, I actually do have my own name and identity, but somehow it all seems to blend together as the days go by. If you have a child with any sort of disability or exceptional needs, you understand. That’s why I am writing, really. I want to connect with the moms out there who understand my life in ways that many others never will. The overwhelming emotions that sideswipe me out of the blue, the uncontrollable urges to watch my child sleeping and talk with God—not about changing Nik or “curing” him. About giving me the strength and the grace and the spirit to do the very best I can for this miraculous little gift that’s been entrusted into the care of my husband and me.

Some days it feels so natural and so easy; those are the days I try to hold on to for as long as I can. Then there are days when I wonder if I am what Nik needs; do I give him enough? Enough time, enough attention, enough love, enough sacrifice, enough tears, enough fighting with doctors and schools to provide enough services to help him be the wonderful being he is? Somehow, even on the good days, it never feels like enough.

On paper, my son sounds like a hopeless case, at best. Born at 27 weeks and weighing only 19 ounces,Nik spent 209 days in the NICU. During that time, he endured multiple surgeries on various body systems (heart, intestines, eyes) and spent a long time on a ventilator. Nik has cerebral palsy, seizures, he’s somewhere on the autism spectrum (depends on who you ask whether it’s PDD-NOS or autism), he has congenital heart issues, he’s blind in one eye and presumed deaf in one ear (more about that another time), doesn’t walk, doesn’t talk, doesn’t eat by mouth, won’t look me in the eye, can’t stand to be held…and the list goes on. Fortunately, the list is just a piece of paper.

What that list doesn’t show is the spirit and determination of my spunky, funny, frightfully intelligent and resourceful little boy. We like to tell a story of a neurologist we met while Nik was hospitalized recently:
The doctor came to our room to discuss some of the issues we needed to have investigated (which we now believe are part of the ASD). This man, whom we have never seen in our lives, waltzed in and without so much as a how-do-you-do begins to explain to me (in a patronizing tone) about things that “children with diminished mental capacity such as your son” do. Frankly, I can’t even remember anything else the man said because my brain turned red and hazy as the mama bear in me poised to strike him down. Fortunately, reason prevailed and I must have been sufficiently polite—the man is still alive to insult some other family! My point though is that everyone that knows Nik, from his pediatrician and numerous specialists (including a neurologist who is NOT Dr. DMC!) to his therapists and teachers at school, everyone agrees that Nik may have multiple challenges. DIMINISHED MENTAL CAPACITY IS NOT ONE OF THEM.

Ok, I got off on a tangent. What I really wanted to say is this:
On paper, my son is a child that many would pity. In fact, according to some comments I’ve read on other blogs (not by the bloggers, by anonymous posters), there are those who would insist he is a “waste of taxpayers’ money” and should be allowed to die. (Yes, for those of you gasping in horrified outrage, there really ARE people in this world who believe such crap.) But, the reality of my son is the polar opposite. Nikolas is NOT his disabilities or his “-isms” or anything else but a beautiful, charming, intelligent, quirky, little guy who rocks my world. And I’ll be happy to take on anyone who says otherwise…

I look forward to sharing my family, my thoughts, our struggles and triumphs, and all the other stuff in between. Thank goodness this ol’ internet is big enough for all of us. Welcome to my world.