What Goes Around…

What Goes Around…

February 2010

Rage. I am feeling intense, roiling, nauseating rage but I can not show it. If I show an ounce of emotion I will be labelled a hysterical mom and no one will take me seriously.  

“Yeah, things are fine. It doesn’t really affect our lives at all.“

Rage. 

My husband is speaking to the GI specialist we have waited for months to see. It’s the second time we have seen her but the first time he has come. He stopped coming to most medical appointments with us when our baby was around 6 months old. The doctor silences me with a pointed look as soon as we arrive and proceeds to ask our child how things are going (because this is a children’s hospital, children speak first, which is great), then my husband. Apparently I should keep my mouth shut. 

Our five year old was born with a paralyzed section of colon and almost died on day three. I knew there was something terribly wrong but the nurses kept telling me I was just a nervous new mom and that my baby was fine, even when it was turning blue and vomiting bright green bile. My baby was not fine.  

Major surgery at 4 months of age was supposed to correct everything but our child continues to have fecal soiling and was so backed up with poop that the new surgeon (we moved to a new city a year and a half ago) did exploratory surgery to see if they missed any paralyzed bits when they cut it out. Apparently they didn’t, so now we see GI to try and manage the incontinence and the GI doc is supposed to do tests to figure out whether or not there are other issues. The surgeon wants to surgically insert a tube into our child which will be used to flush out its digestive system every two days and our child did not start kindergarten this September because it is still in pull ups but yeah, sure, it really doesn’t affect our lives at all.  

It doesn’t affect my husband’s life. He sleeps with earplugs in, wakes up and goes to work. Then he comes home and naps until I get him up for supper. I, on the other hand, am up for most of the night with our child while it scratches itself bloody due to severe eczema and can’t settle in to sleep. At 5 AM I get the meds and laxatives ready, make sure there is enough food ready for it for the day which has to be specially prepared due to severe life threatening food allergies, and get myself to work. I take ginger gravol and painkillers all day because I am nauseated and aching all over due to extreme sleep deprivation. I am teaching multiple grade levels in an elementary/junior high and it is my probationary teaching contract year so I can not let the sleep deprivation affect my job performance.  

I listen to my husband spout bullshit about our morning routine and toilet time, which he never supervises and knows nothing about. He continues to talk about mealtimes and our child’s appetite even though his only contribution to caring for our child is to scream at it at the dinner table because it can not sit still. He also yells at me from the living room when it is too noisy in the bathroom during toilet time and bath time, because our child bounces and bucks around on the toilet and in the bathtub. Caring for this child is physically and emotionally exhausting.

“How much of the PEG is River taking each morning? Does he drink it all?” asks the Doctor.

Garrett looks at me, wondering what to answer because he does not know. Maybe I will finally have a chance to speak. I begin to hesitantly answer the question, because I am expecting to be scolded for answering a question that I was not asked directly. I give the number and say that it usually drinks it all, but not always. Again, the doctor looks at Garrett and asks “How many times a day is the pull up dirty?” This time he answers without looking at me “Oh, it’s barely dirty at all. Almost never.” This is too much for me to bear and I feel the rage that has been building in my gut burst through the dam of my diaphragm, which I have been keeping in place tightly by holding my breath as much as possible without fainting. 

“What are you talking about?!” I exclaim, fighting tears of frustration. “The pullup is dirty all the time! There is never a clean pull up!” I am trying to keep myself from rage sobbing but a few tears spill out. 

Garrett looks at me in disgust and accuses me of exaggerating. I can not bear this insult and finally I look directly at the doctor and say “I am the person who gives the meds, supervises the toilet times, prepares all the food, and feeds this child. I have detailed notes on the meds, toilet times, number of soiled pull ups in a day, and the amount of poop in each soiled diaper. If you want accurate information, I am the one to give it because I am the only one who is doing any of the work and keeping track.”

The room goes silent and tears roll down my face. The doctor looks back and forth between me and Garrett and I can not tell what she is thinking, but the look on his face is pure hatred for me. I am used to that expression on his face and I feel a spike of adrenaline because I know that he will be sulking and angry for the rest of the day, if not longer. Finally she says “We’ll schedule a test as soon as possible to determine whether or not the inner sphincters are paralyzed. In the meantime, keep the meds at the current dosage and maintain the high fibre diet. I’ll see you in three months.” She leaves the room. 

Fast forward thirteen years and I am sitting in the examining room waiting for the new GI doctor, who we have waited to see for a year and a half after being discharged from the pediatric doctor. My adult child, who is nearly nineteen and now goes by multiple different names due to multiple personalities, is back in the bathroom and not in the examining room when she enters. We were late for the appointment because it (yes, my child uses the pronoun “it” and yes, I have a hard time referring to my child as such but I have grown accustomed to the different pronouns over the past few years) was trapped on the toilet for over an hour. This is typical, and happens at least two or three times per day. We are late for, or miss, appointments and activities all the time. I get yelled at for nagging when I give reminders that we need to leave. I am mom, so I bear the brunt of the rage and frustration my child feels. The rage and frustration are beyond intense; my child has recently been diagnosed with Borderline Personality Disorder (BPD). 

“Hello! I’m Chloe, Roo’s mom. It had to run back to the bathroom but I can start filling you in on what’s been going on.” I say to the doctor. She gives me a look of disdain mixed with annoyance and backs out of the room saying “No, he is 18 so I need to talk to him, not you.” Sigh. Having a child with medical and psychiatric issues turn 18 is brutal. It’s like the flip of a switch, you’re suddenly treated like a nuisance at best and an overbearing monster at worst. 

“Please wait, it might be in the bathroom for an hour and we’ll miss the whole appointment. I gave your secretary a copy of the legal document I have designating me as a supportive decision maker because we’ve been to emergency psych three times in the past year and my kiddo may present as one of over a dozen multiple personalities. Things are really bad from a GI standpoint and I need to give you the history and get some requisitions. Roo has pretty severe memory issues and doesn’t really know the full GI history, so I have to be present so the information you get is accurate. Also, it has recently been diagnosed with BPD and may lose its temper and yell at me.” 

A look of shocked trepidation registers on her face and she very slowly enters the room. “Well, I guess we can talk. Hopefully he will be back soon.” She opens the file, sees the names and says “What do I call him? Wait, which pronouns do I use?”

I explain that we are currently using the pronoun “it” and confirm that Roo was AMAB (assigned male at birth). I explain that we are late for appointments and miss activities constantly because it is trapped on the toilet for over an hour at a time at least twice, sometimes three times a day. Things have not been this bad from a GI standpoint in years, and I am regretting my decision to try and avoid the surgically implanted trap door tube thingy that was recommended repeatedly so that we could flush out the bowel with glycerine every couple of days. 

Roo enters the room apologizing for being late and hops up on the examining table. The doctor asks the usual questions about bathroom stuff and then asks “What is the most upsetting part of this for you?” Roo replies with “WHEN MY MOM IS SCREAMING AT ME TO GET OFF THE TOILET!” In my calmest voice I say “I never scream at you honey, but when we’re going to be late I have to check in and tell you that it’s time to leave.”

The doctor gives me THAT look. A mixture of pity and suspicion, because she is not sure what to make of the outburst. I can not express any of the frustration or anger I feel, because I will be labelled a hysterical, overbearing “Mommy Dearest” type. I am an expert at holding my breath and keeping all emotions locked away tightly. The only problem is that I am slowly losing this superpower because my own therapist has told me that it is killing me and is doing EMDR with me so that I can tolerate feeling and expressing emotion. I am not as good at holding back the tears any longer and it is humiliating when the tears start to roll down my face.  

“How much do your GI issues affect your life?” she asks Roo. It answers with “It doesn’t really affect my life at all.”

Rage. I can’t breathe, I am so angry.  Tears. Tears are rolling down my face and I can barely speak, but I say “No! You can not say that when you spend over three hours a day trapped on the toilet! It doesn’t affect your life because I DO EVERYTHING! I get you up early enough to make sure we’re not late,  I make sure you take your meds, I keep up your special diet,  I time everything and we’re still late or miss out on things, our lives are dominated by this! I am filling out your disability forms for this and you exceed the criteria! And you yell at me for trying to help you. I need to leave. I will be outside.”

The doctor looks shocked as I stand up to leave. All I can see is Roos dad sitting there in his place and the overwhelm, frustration, sadness, and guilt I live with because I have never succeeded in fixing this gut issue completely engulf me. I go out to the car and sob so hard I don’t even feel like I am in my body.  

Guilt. Truly feeling it is physically painful. Guilt for being a terrible person who attracted negative energy causing my child to be born sick.  Guilt for not figuring out a way to help Roos dad achieve mental stability so he could be a true partner and parent. Guilt for the trauma he inflicted on our child as I watched. Guilt for not being able to save our marriage. Guilt for wanting to try and avoid surgically implanted tubes. Guilt for not being able to get the GI issues under control despite 18 years of doing my best. And guilt that a lifetime of medical trauma has contributed to my child being diagnosed with BPD. 

I know logically that this guilt and blame does not belong to me but for some reason I have not been able to free myself of it. Much of it was said to me by Roos dad. Much of it, I place on myself. It is neither helpful nor productive yet I can not escape it. 

Hearing Garretts words come out of Roo’s mouth thirteen years later throws me into a sense of unreality, rage, and irony that feels clinical. At times like this, I feel like I am losing my sanity. All I can think is the word “INTERROBANG”, because it makes me laugh and if I don’t laugh I will never stop crying. I’m interrobanging hard, baby.