Finding My Nemo

We decided months ago that Finding Dory would be the first movie we took Avery to see in theaters. Since he’s 2 and a half now, he enjoys watching TV and understands a great deal despite his brain malformation. Polymicrogyria has taken his ability to use his left arm and given him a speech and learning delay- so far- but it hasn’t stolen his sense of adventure or attention span. He loves cartoons! He also has cerebral palsy as a result of the PMG and we are realizing that, as he grows, it will become increasingly more difficult to make accomodations for him. So now, while he’s small, we decided to do what may be too difficult to do often in the future. To do something normal.

This isn’t about Dory, though. It’s about Nemo. My Nemo.

The night before we took him, we decided to watch Finding Nemo since it had been years since his father and I last saw it. So many years that I wasn’t a special needs parent the last time I watched it. So many years that all of the little things that jumped out at me this time weren’t even given a second thought before. Why had I never looked at Nemo and seen his disability? Sure, I realized that his small fin was part of the storyline. But I never realized how integral it was to the story.

Avery was born weighing just a little over a pound. You may wonder, what is such an extreme preemie made of? Strength. Determination. Fight. Courage. For the first four months of his life, Avery lived in the NICU. Fighting for each breath. Just like Nemo was determined to return to his father, my son was determined to fight for the very chance to come home to his. They both fought insurmountable odds to return to their families. Realizing the parallels, tears began to stream down my cheeks.

Me? I’m Marlin. I’ve taken on the role of helicopter Mom with fervor. “Avery, be careful.” “He CAN’T eat that.” “Make sure he is breathing well.” “I’m just checking his breathing.” “Yes, again.” Don’t go to far, or crawl too quickly, or stand near that person who just sneezed. Like Pavlov’s dogs, I’ve been trained. I expect the worst because, historically, I’ve gotten the worst. Marlin and I, you see, I think we suffer from PTSD. We fear for good reason.

As the movie went on I realized I was being taught a lesson, not only as a mother but as a person. If Nemo’s imperfect fin could be his “lucky” fin, why can’t Avery’s left arm be his “lucky” arm? Why does it have to be a disability? We’ve been taught to look at differences as imperfections for so long and instead of embracing them we’re embarrassed by them. I don’t want to see the day that my son isn’t proud of every unique part of himself. So what if he isn’t made like everyone else. He was given a journey all his own. That journey just so happens to include a unique brain and a lucky fin.

Avery’s journey is far from over. He will have many more mountains to climb in the future. I’ll have many more worries. New, terrifying worries. How will we ever make it? That’s easy. One breath, one flip of a lucky fin, one “lefty did it!” at a time.

Just like Nemo did.

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Here I am, again.

I had a gut feeling, I guess. From the moment that second line showed up I was skeptical. The part of me jaded by loss whispered in my ear, “it won’t work out.” Arick insisted that I stay strong and grounded. I tried. I tried so hard to be positive. But that nagging feeling wouldn’t leave me.

While I can’t say this baby was planned, I will say it wasn’t prevented. For the first time in three years we weren’t surprised by a pregnancy. We embraced it, both truly happy to have chosen to add this child to our family. We’ve never been disappointed or unhappy without our surprises but this one felt different in that we knew it was a possibility.

My previous losses have always been late. Neferious losses that caused me to endure induction, labor and emergency d and c’s. Eleven weeks, sixteen weeks, twenty-one weeks. I was always past that “safe zone.” We’d heard heartbeats, seen squirmy little legs on grainy ultrasound screens. And then they were gone. We were forced to retract our announcements. To tell the world the news that we were sadly no longer expecting.

Now, once again, we are no longer expecting.

With each loss I would swear I’d never tell a soul should I ever be pregnant again. Not until the baby was snuggled safely in our arms. Like a fool, each time I go back on my word. I get too happy and end up sharing the news. It was no different this time. I’ve never had an early miscarriage so that fear wasn’t strong. It’s weeks 10-20 that terrify me. Yes, I had that nagging feeling. But I always made it safely through the first trimester. So we shared our joy with our loved ones. Now, we shamefully take it back.

It’s embarrassing, humiliating and demoralizing. I cannot adequately perform what my very body was made to do. I am woman…I should grow and give birth to children. But for some reason the ability to do so effortlessly was lost on me. Instead I am a wasteland. A dry, unwelcoming desert. And there is absolutely nothing I can do about it.

The hardest part has been seeing Arick as heartbroken as I but unable to express his pain. It isn’t the same for a man, I know that. He’s got the added burden of being my protector and source of strength. Meanwhile, not only does he hurt but my pain causes him to hurt more. This time I told him, he doesn’t deserve to be going through all of this. He said,”No one does. YOU don’t.”

I stopped asking myself “why me?” long ago. I never want to grow calloused to the gravity of loss. Each and every child has been very much loved, and very much wanted. But when is enough, enough? I know Arick struggles most with this. Why get pregnant at all if you don’t know that you’ll bring home a child in the end? My answer to this is faith. I have faith that whatever is in God’s plan will be. I’m not super religious but I believe each life created is sanctioned by Him. And it is His to take away.

I’d like to say that I’ll never again tell you that we are pregnant. I despise the way I feel right now. It’s so uncomfortable, so raw. But I can’t say that with certainty. We both feel as if there is room for one more child in our family.

So our plan going forward is to not have a plan. I don’t know where that will take us. I just pray that the road is paved smoothly, with less bumps and more sunshine. And maybe, if we’re lucky, there will be a rainbow on the other side.