Ramble time, humor me?
He’s sick of me. He tells me “Mommy, go poop” and points to the bathroom in our room, ten times a day so he can get some space, I guess. He’s sick of my face and misses his space. He rejects my affection, but that’s not unusual for him, loving Corrigan is like loving an aloof cat. I give 100% to him and he gives me 20% back. He might ignore me for hours, and hiss at me at times, but I live for the moments he lets me close.
It’s hard being stuck in a small room together for so long. He’s wedded to his routines and a lot of his behaviors, well who can blame him? 🤷🏻♀️His brain is damaged, he can’t find words fast enough so frustrations come easily and he’s sick of being the center of attention here. He wants to sink into his head and ignore us.
I can’t ease up on parenting either while we are inpatient. Corrigan, if given more than one chance on a negative behavior, will casually slip that negative behavior into his arsenal and blast you with it daily for a year. I have to be hard, and consistent, when other parents have space for grace.
I have to remind him of his manners, remind him to make eye contact when spoken to, remind him that we don’t say that, hit that, bite that when frustrated. I have to take away his iPad when he uses bad language because his game won’t load because the hospital wifi sucks. And then deal with the fallout of the audacity of daring to be…well…his mother. I’d rather hug it out, instead of harping and lecturing. A stiff arm in my chest rejects that kind of parenting.
But I push through. I keep trying. Love me, please. Hug me, please. When things are hard, love is my cure. Corrigan isn’t fond of my ways. Begging for affection isn’t really my thing, but surely- in spite of all of the brain damage and stress, he knows how much I truly adore him right? I’m doing this right…right? Because I’m yelling out in my sleep here. It’s humiliating. They’ve heard me. I can’t stop it and I’ve never done it before. I can hear the words coming and wake mid-yell and sometimes I can squelch it in my throat but mostly, the sound of my own voice wakes me. Many many times a night. It’s embarrassing and I’ve resorted to wedging my fist up under my chin, with blankets, to keep my mouth forced closed. My neck is bruised. It hurts, in more ways than one. I don’t want to go to bed now. I don’t know what I’ll say.
So yeah, I’m exhausted. I love this boy so fiercely and his safety during these events is my UTMOST concern. I have to double check everything that goes into my child. I have to make sure they handle his drawn blood in a precise way. Mere minutes of mishandling affects results. I have to question everything. Did you bring ice? No, you can’t draw and then go get it. Get it now please. Are you piggybacking D10 while bolusing Ammonul? Don’t do that. Fix it please. On and on. I’ve caught errors many times, in many events, in many facilities.
A doctor here ordered he be given liquid iron on an empty stomach, in the midst of a four hour fast, earlier this week. After only being back on feeds for ONE feed. Because I was tired, I didn’t ask her what she was giving him until the plunger was pushed. Seconds. I missed the chance to prevent HOURS of vomiting and stomach clenching because a DOCTOR thought that made sense.
Just today alone, I caught a nurse forget his meds. TWICE. And I’m in one of the top 3 hospitals in the country. I have to file complaints on good people who need their jobs because it has to be done. I have to speak to Adminstrators and discuss investigations and consider legal actions because people are human and they make mistakes. I have to do hard things, but nothing compares to what this boy deals with. Please don’t think what I’m saying here is that I suffer more. Clearly I don’t, but there’s fallout here. The observers get some on them too, you know.
He’s been through a lot. I think we are both living with a bit of PTSD but I told him today, “It might be hard but you’re never alone and we’ve got this.” While we walked outside tonight, under the watchful eye of hospital security, he skipped and repeated over and over “We can do it togever Mom!”
Exactly, my boy. None of this is the way it should be, for either of us, but we CAN do this together. Now come here and let’s take a dumb selfie.