Untitled

Stephen Spielberg Pediatrics Research Center. It’s the first thing I see when I step out of the car and into the parking lot. I stand there frozen to my spot while Yancy unlatches Gus’s car seat and pulls him out of the car. Stephen Spielberg. It seems oddly fitting since I’m having one of those moments where I’m watching myself. Recording.

Gus skips happily along between us each one of his small hands holding one of ours. He’s so excited to be able to play games on Yancy’s Ipad since it happens so rarely. He’s chattering on about which game he will play and how he’s the best. He has no idea what is about to happen. He doesn’t know that the nurse called me as soon as I got off work to tell us to be there fifteen minutes early because they are drawing another blood panel today.

The last one we had before leaving the hospital a few weeks ago was one of the worst we’ve ever had. It didn’t help that I was there alone because Yancy had gone home to let out the dog. Neither of us had known the lab would be back that morning or he would have stayed. The look of terror on Gus’s face as they pushed me aside to hold him down on the bed was one that will never leave me. The way he screamed, “Mommy!” over and over again with eyes filled in terror and bewilderment will be burned into my mind forever.

Medical Genetics. That’s what we’re looking for. Except we can’t find it. And I am furious at Yancy. I shoot him seething glares of hostility and rage as we walk through the hallways searching. And every time he turns to look at me I make sure he knows I’m pissed. The truth is that he hasn’t done anything wrong. Not a thing. I know it’s unfair. I know he’s done nothing to deserve it, but I can’t help myself. Sometimes I just need to be angry. I need to get mad about it and he’s my target. The truth is that he’s the only one who knows what this has been like. He’s the only person that I don’t have to try and explain things to. He’s the one person who knows every step of this journey.

The receptionist ushers us in pretty quickly since we are the last appointment of the day. The minute the nurse starts talking about labs and blood, Gus’s eyes turn to look at us. I see the look of betrayal in his eyes. The tears start immediately. I want to crumple right there on the floor with him instead we start valiantly trying to tell him not to be scared and that we’ll be there with him. Trying to convince him that it will be okay, but the closer we get to the lab the more worked up he gets. By the time we walk into the glaring lights, he is sobbing. And begging. “Please, don’t make me do it. I don’t wanna do it. Please. I wanna go home.”

I’m begging and pleading with him just as hard. “Please, Gus. Just relax. Calm down. It’s not going to be like it was in the hospital. It’s not gonna hurt like the hospital.” I promise.

It doesn’t matter. Nothing helps. There are arms everywhere. Faces and screams. They’ve taken him from me. I want him back. It doesn’t help that I know the tests have to be done. The blood has to be drawn. Because he doesn’t. He has no idea. He just knows the two people in the world who have promised to always protect him are helping strangers hurt him.

It takes three adults to hold down a four year old child and his screams shatter the white room. All I can do over and over again is whisper that I’m sorry.

“I’m so sorry, Gus. I’m so sorry, baby. It’s going to be over soon. I promise,” I whisper. But my words do nothing to calm him. I’m unsure whether they actually reach his ears. He is in a place of primal panic. I start yelling at Yancy to stop yelling at Gus even though I’m pretty sure he’s not actually yelling, but rather the volume in my head is turned up as high as it can go. I am breathing as if I have just crossed the finish line at one of my marathons. My forehead throbs and my jaw is as clamped so tightly it feels as if my molars might break. My body is on fire. I want to rip their faces off. Throw them off my son. Scream at them to get away from him. Leave him alone.

Finally, it’s over and I rip him off of the chair and into my arms. He is kicking and screaming. He wants down. He wants to run away. I want to run away too. I want to throw on his Batman cape while I put on my green Robin mask and run until we are out of this world. Into the next world where none of this is happening and little kids don’t get sick. But I can’t. We are here and so is everyone else. Crowded around so tightly I can’t breathe. One of the nurses is trying to shove a glass of water into his hands and I can’t take it anymore.

“Get away. Just give him a minute.” I scream. I scoop him up again and see a bathroom door to my right. I reach for the door and slam it shut, locking it behind us. Their voices fade away and it is just me and my baby boy. They can’t touch us. I pull him down on the floor with me and rock him slowly back and forth. And I talk about the only thing that I know might reach him. Ice cream. I talk about the ice cream we can get when we leave. Rocky road. His small body finally gives up the fight and relaxes in mine.

“Can we get sprinkles?”

“We can get as many sprinkles as you want,” I promise. It’s the one promise I feel like I can keep.

Eventually, we have to leave the bathroom. I get him to pee in a cup and wipe his face with a wet towel. Everyone applauds when I walk out of the bathroom with him. All Yancy can say is-“wow, that was hardcore.” I say nothing. We plop him on the exam table when we get back into the exam room. He wants the Ipad. He snaps at us when we try to talk to him as we wait for the doctor to come into the room. I understand. I’d be pissed at us too. I can’t blame him.

I stare at him wondering how this will affect him. Not the physical part of being sick, but the emotional scars. How deep will they run? Will he sit on some therapist’s couch trying to pinpoint the moment he lost his innocence and realize in a moment of remembrance that it was now? Or was it the last time we let them hold him down and torture him?

My thoughts are interrupted by the click of the door and the voice of the doctor, “I think I know what’s wrong with your son…”

For four years, we have been waiting to hear those words. All of the hospital stays and emergency room trips. Countless tests. Doctors. Nobody has ever said them to us. Nobody. It should come as some relief, so, why do I feel like I’m going to throw up all over the glistening white speckled linoleum floor?

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9 Responses to Untitled

  1. Penny says:

    Oh my… Just heartbreaking. When you described shutting you both in the bathroom I had tears in my eyes. You are doing well to be so articulate at a time like this. Not sure I would have processed it that far to be able to write like this.

  2. J. Eden says:

    That is heartbreaking.

  3. Heather, I’m sorry.
    Katy

  4. Leslie says:

    How awful, I hope the answer is not too bad, so sorry you need to deal with this, poor boy.

  5. My heart aches with you. Nobody ever tells parents to be that maybe, just maybe that promise of perfectly healthy children may be shattered with the reality of illness or emotional challenges. Of course, everyone knows that’s a possibility. Yet, everyone feels it won’t happen to their own children!
    You never mentioned what the results were and it wasn’t important. The importance was the raw, real emotions I felt as you crafted each word for us to feel. Of course it can’t come near how you felt. I’m not the mother.
    Words like these and words of awful pregnancies must be heard. When the commitment to raise children is made, possibilities must be embraced and acknowledged that life may not be like that gerber baby ad.
    This share is an important share. It overcomes the pronatal brainwashing that having children is a walk in the park. I am standing up, applauding your honesty and truly want to know having that the results lead to anything that can help your son.
    Marcia Drut-Davis
    Author,”Confessions of a Childfree Woman

  6. Tara dSL says:

    I am so sorry that you and your family had to go through this. It sounds like a truly awful experience. I hope that whatever is going on with little Gus is something manageable. Take care.

  7. Peg says:

    Glad to see you back writing, but sorry to see things are so difficult with Gus. I hope you guys have been able to figure things out and that he’s feeling better. I hope you’re all doing better.

  8. Rachel says:

    I am so sorry you are going through this. I have been in a similar situation going through blood draws for my (at the time one year old daughter) after anaphylaxis and it was heartbreaking. Please know you are in my thoughts and that I am hopeful that whatever the diagnosis, the path is towards recovery

  9. Jamie says:

    I’m sorry to hear that your family has been suffering so much. I hope things improve soon.

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