I sat there listening to you scream on the other side of the door. At first I was relieved when you chose your dad to go in with you, but now I was regretting it. I could hear you crying for your mommy and I could not go in. The hospital had a one parent in the procedure room policy. So I stood there and cried as I listened to you call for me.

I felt huge relief when the nurse opened the door and asked me to come in. But the emotion was fleeting. My heart sank when she told me they needed me to help hold you down so they could get the probe in. As I entered the room I could see you fighting and I was surprised by the sense of pride I felt. When things get scary and tough, you don’t hide or run. You hold your ground, you stand there, and you fight. And I love that about you. I did my best to look confident as I walked up to you. The terror and fear on your face devastated every part of my being. But there was no choice. This had to be done. I walked up to you and placed your face in my hands and said, “Baby, it’s not going to hurt, but it will be uncomfortable. I need you to lay still. I need you to trust me. This will help you.” You looked at me, your eyes as wide as I’ve ever seen them, and you nodded ok.
Then dad held your face, I held your hands, and they inserted the probe into your nose. The sound of your scream is something I will never forget.

The next 24 hours was brutal and exhausting for both of us. You, because you had a probe that went up your nose, down your throat, and into your stomach. You were confused and uncomfortable and not happy with me. But for me it was hard in ways I didn’t expect. The fact was, we needed this test. It was purely for diagnostics and I was excited to see what information it would tell us. We were hoping to learn about your gastric bleeding and determine if your were indeed inhaling stomach fluid as suspected. But, as I sat there and watched you sleep, none of the science mattered.

The cold hard fact was that you were lying here scared and alone in a hospital bed with tubes coming out of you, simply because it’s what I asked you to do. You did not want to be here from the minute I told you about it and yet you came here willingly. And when you were terrified on a surgical bed being held down by strangers, you complied, because I asked you to. You trusted in me and believed in me. So really, I did this. It’s my fault this is happening. And I’m a mess about it.

I want you to know that I’m sorry. I hope you are not scarred for life. I want to thank you for believing in me and trusting me. You have no idea how much it means to me. I hope as you grow, you will come to know that we had to do this and that it really will help us learn how to treat your pain. What struck me through all of this was that once again you expressed understanding and compassion in the simplest ways. The nurse who held you down and placed the probe tried to console you. This is her job and she’s used to it, but she still felt bad. After the device was in place, you would not look her, even when she explained how it was going to help. You just hid your sweet face in my neck and cried the whole time she talked to you. As she got up to leave the room she said she was sorry and as she closed the door to your hospital room you finally spoke. Your face was hidden and your voice muffled, but your words clear, “Thank you.”

Those words had a profound impact on me. You have such grace, even in times like these. You are not angry at the stranger who just held you down, but thanked her. It let me know you understand that we are all trying to help you, even if the process is scary and confusing. It showed kindness and manors in a moment not requiring it. And it made me proud.

It also made me sad. You are only four and yet, you are stronger than me. Braver than me. More trusting that me. Sitting here looking at you, I feel so much love for you that it makes me weepy. Tears are flooding my eyes, and I feel like I’m truly overflowing.

So my sweet boy, thank you. I’m proud of you. I’m proud of how you handled this and how you handled yourself. Please know that I am so sorry this is happening to you. I’m sorry I made you do this. I know it’s my fault and I hate it. But being a mommy is hard sometimes and I have to make hard decisions. Decisions that I hate. But, in the end, I would rather you be mad at me for one day than inhale stomach acid for four more years. I’d rather you be freaked out for a five minute tube insertion than spend all winter bleeding internally.

So while I felt awful, know too I would do it all over again. I love you enough to overcome my own guilt and fear to try to help you. You have taught me to fight and fighting is exactly what I’m doing. I just hope and pray that one day you understand that I am fighting the same battle as you. I am your soldier and I will fight until this battle with dystonia is over. I will fight with you until the day I die. And when you are too tired or scared to fight, I will keep waging war. You will never ever have to fight alone. This is my promise to you. It’s a promise I wish I didn’t have to make, but is a promise I will never break. So please know that no matter what happens, I am battle ready, and this soldier is never backing down.

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