Sharing the good

When Corrigan was born, one of the very first “weird” feelings I had about him was that he didn’t seem able to fully open his eyes.  When I walked him back through the nursery, for his circumcision, I was startled that every single newborn in the room had wide-open eyes, and yet here I was, carrying my baby back a day after his birth and I hadn’t really seen his yet.

He seemed only able to open them the tiniest bit and as the hours went by and his brain became sicker, he was worn out by the effort and gave up trying completely.  It was unsettling from the start, something I mentioned to family and staff, but was assured it was nothing to be worried about, “he is likely just exhausted from being born”.  We tried taking a few family photos using the natural light from the window in the room, but he was so obviously agitated and uncomfortable, that my sister quickly snapped a handful of shots and then she quickly closed the curtains.  Those curtains remained closed the duration of our stay.

(the last photo before we closed the curtains)

It was a few days after birth that I even knew what color his eyes really were, and only because in the midst of trying to understand why he seemed to be seizing, a doctor lifted his eyelids to check the dilation of his pupils.

As he slipped into a coma, I longed more and more for the connection that only eye-to-eye contact could bring. I wanted him so desperately to look at me so that he could see how much I loved him, yet he couldn’t.  As they pumped him full of medicines and recirculated his blood through hemodialysis, his body size doubled and his eyes were swollen shut.  It would not be until a week after birth that he turned his head towards us and fought mightily to open his eyes again.  As you can imagine, I sobbed.  I cried more in that moment than any in the terrifying days preceding his miraculous return to the conscious world, it meant so much to me that he saw me.  Finally.

People often talk about being “ripped off” through circumstances in their lives, and the trauma of that first week left me feeling very “ripped off” because so much was stolen from us because of his Urea Cycle Disorder. There were no long cuddles of a content newborn, or bonding moments while breast feeding. Corrigan was agitated from the moment he entered the world.  He didn’t seem to enjoy being held, he didn’t respond positively to light, he hated the act of nursing (no one realizing that I was literally poisoning him with my milk) and all of his discontent took place in a dark world because he couldn’t seem to bear to open his eyes to see it.

( his beautiful dark-rimmed eyes )

Almost a year ago, my sister gave birth to her first baby.  She asked me to be in the room with her during delivery, and I proudly took my place at the side of her bed, holding her left leg up while she labored.  When she gave that one big push that brought the baby’s head out, I looked down to see my niece was slightly turned my direction, her little face scrunched up and angry and I was almost knocked onto my butt when she opened her eyes and looked right at me. There she was, pausing between two worlds, half in one and half out in the other…calmly staring at me and barely blinking.  It felt like she was looking into my soul.

I never had that moment with Corrigan.

Of course, as you know, he has struggled over the years and it didn’t take long for people to start talking about autism.  The main sign in Corrigan was his aversion to making eye contact. It wasn’t as though he always had his head down, or was staring at a wall, not at all. He would look in your direction when it suited him, but not in the way that you would sit with a toddler and talk to them while looking at each other. Or as they called it “prolonged, meaningful eye contact”.   When his therapists would come to the house, the only way they could get him to look in their direction was to be at a safe distance across the room.  Any closer than four feet from him and you could be assured he would tune you out.  Making meaningful eye-contact seemed to make him very uncomfortable and again, that connection was denied.

I have taken thousands of photographs of Corrigan in his lifetime and many of them show him looking right at me, or should I say, right at the camera but this was often a trick.  I used a multitude of things to get him to look my way for a photograph, or I would simply lie in wait- snapping the photos with precision, the exact moment he looked my direction. I could focus my camera in a split second to capture what I wanted.  I showed him to you, to the world, as I wanted him to be seen.  But reality was quite different. To this day, I do the same thing, I use the same tricks, to make him look at the camera for me.  I also wait for his hands to stop flapping, or catch him in a mid-flap pause, so that the shot is the way I want it. The way you see Corrigan in photos, and the way he acts when you meet him in person, may perhaps be a bit surprising.  He doesn’t seem all that “different” on here, I know.

Over the years, as everyone has worked so hard to ease his anxiety and he has grown to feel safer and more confident in his place in the world, something miraculous has happened. Corrigan now wants you to look at him. He deliberately wants to be close, nose-to-nose actually, and stare into your eyes. He still has times that eye-contact is just still too much, especially in new or exciting situations, and even if he knows you, it might take him hours to feel comfortable enough to look you in the eye…but he can do it.  He wants to do it.  It is amazing and I do not take any of it for granted.  I know how fortunate we are that he “sees” us now, how we could very well be locked into a life that is wholly different than what we know.  He could have continued to turn inward, whether from autism, or Post Traumatic Pediatric Stress Disorder. Instead, we have been blessed with a breakthrough of sorts. A chance that cannot ever be taken for granted, a chance to connect in the way I so desperately desired from nearly the moment he was born.

What prompted this post today? A blog post from a new mom, those are the ones that seem to sting the most these days.  Maybe now that things have calmed down medically with Corrigan, and he is doing so well with life, I have more time to think about the things I hadn’t had much time to think about before.  Today it was a gorgeous photo of a brand new family, taken only hours after birth, and the newborn was looking so brightly at the camera, much like my niece looked at me last year, that it tossed me back to those darker first days of Corrigan’s birth.  I didn’t linger long though, because when a darker memory hits me, I now choose to be deliberate in finding the positive.

Yeah, I was “ripped off” and so was Corrigan.  So were Mark and Connor.  But we have all come so far, so we didn’t get a connection then, but we have one now and hey…better late than never.

photo (85)

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