It occurred to me yesterday (while we were waiting to have Jeremiah’s sedated MRI) when I asked the nurse to take a picture of me and Jeremiah while he was laying in my arms and giggling, that he typically isn’t so easy going. I wanted to take advantage of the sweet moment in time. It required Jeremiah to be medicated however. After the versed, he was calm, I could almost feel the release of anxiety lift away from him. As the intensity receded he would lean in just a little closer to me, almost like a snuggle except he wouldn’t let his head relax against my shoulder.
I realized then that this child of ours has a few coping mechanisms that leave him isolated with his inner feelings. One: When Jeremiah is in the company of others, he will always smile. If there are friends around he will run and play. There will be moments that he will grab his blanket and place his head down on the floor or sofa, but the boy wont stop moving for long. But when the company is gone or we go home, he will 90% of the time be in pain, request meds or will be beyond pain and have a anger episode (which means I won’t be able to hold him even then). Two: when he is REALLY in pain, he will refuse anyone to touch him. I have to go against his wishes to comfort him and he will always push against me as if he wanted out of my arms.
He is an intense little soul. His happy is always on the verge of anger/frustration. He holds up a very thick wall of bricks in hopes that you may not see over the top at a very scared and vulnerable child. When the brick wall isn’t strong enough he sobs great big sobs. I am holding him then, I’m trying to take in all the hurt that I can so he feels better.
In recovery, I thought I had time to go and pick up the CD of the MRI results. The nurse said that he would call me if he woke up. I never got the call and when I walked through the door to be beside him. He WAS awake, he looked up at me, I could see the relief. The nurse immediately responded with “he woke up so sweetly”, “He is happy”. But when I looked into my son’s eyes I could see the tears welling up. He wasn’t happy. He was picking at his IV line, he was trying to remove it and I tried to hold him over the barrier of the gurney. He began to cry softly. I realized then that he was upset. He was upset that I had not been there when he woke up.
The nurse, trying to make me feel better stated that “he was happy when he woke up.” Little does the nurse know that when my son smiles, he has just put up the wall that the Versed so graciously put down, and me looking over the very thick brick wall saw a very scared little boy that really needed to be with his mommy and daddy. The true smile came when the nurse removed the IV line and I let him know we were going home.
The take away that I got from this visit to the hospital was that our son has learned how to hide how he truly feels at such a young age. It takes a keen eye to really see how he truly feels. The message that I hope you will take from this is, if you really look deeper at the actions of the individual that lives with a chronic condition, you will know that they aren’t really smiling all the time, but that they are trying to live life joyfully as possible while dealing with shit the best way they know how without pulling you down with them. If you truly knew their struggle, they would crumble and cry great big sobs of defeat, because what they deal with on a daily basis is something no one should ever have to deal with.
Picture is his scar from Decompression surgery 3/27/2015