Posts Tagged ‘Cornelia de Lange Syndrome’

Therapy Day

Day 56:

Side Effects: Acne. Low appetite continues.

Feelings: I had a 7:15 appointment with my therapist today. Thats 7:15 A.M. I was not sure I would want to talk about anything other than sleep this early. I was a little late. (because it was 7:15!) She asked me what was on my mind this morning. I said sleep. She laughed. She said her too. I didnt know how to start so she did. She asked me if I was on the way to work. I said yes. She asked me if I liked my job. I said most of the time. She asked me what I meant by that. I said that I like it but there is a coworker who is pretty out there and never gets in trouble for the way she talks to people. She asked for an example. I said that I was in a bad mood one day and she came to the back and asked me what the fuck my problem was. Her eyes widened and she said “Wow.” I said, “Yeah, it gets better.” This prompted my other coworker to say something to our boss who finally held a meeting but all we got out of it was that the rest of us need to have thicker skins. She gave a sarcastic laugh and told me that sort of thing is called verbal harassment and I could file a grievance. I said yeah, if I wanted to lose my job. She said maybe but did I want to work in an environment like that anyway? I dont know. Was all I could say. She said it speaks a lot to my boss also that she never gets into trouble. It says that she wants things controlled no matter how it gets done. I agreed. I tell her that this person will be over me once our office manager leaves to have her baby. And I dont think she is coming back. I also tell her that I have taken on a lot of responsibility at work and it requires stress and a lot of long hours.

She ask how it was going with my mother. I tell her that she is still trying to force a relationship between me and my brother even though he is in jail and I dont give a shit. I tell her that it has been like that since I told my mother. I would go to family functions or to take B to visit her and he would be there. Saying Hi like everything is fine and trying kiss me or hug me. I wanted to vomit and stab him everytime. Sick bastard. I would push him away from me in disgust. She never gave me a warning about him being there so I stopped coming over or going to any family thing. Now that he is in jail she starts off every sentence with “I know you dont care, but” When she about to talk about him. “you’re right.” I would tell her. “I dont care, so dont tell me.” It pisses her off, but I dont care. If she wants to hurt my feeling then I will hurt hers without blinking an eye. My therapist rolls her eyes and says that it is a shame that my mother doesnt support me. I tell her that it doesnt make since because she was abused when she was younger. My grandmother didnt support her. So wouldnt she want to support me because she experienced how much that hurt first hand? Or maybe she is just bitter. We’d get back to that another day.

We switched gears then to my marriage. I told her that I feel as though I have been tuning my marriage problems out right now because I’m so stressed at work and with B’s health. Not to mention the other 3 kids in our house. She asked about B. I told her B was a 24 week baby and he was 1 pound 4 ounces. He suffers from complications of being a preemie as well as Cornelia De Lange syndrome. He is very small but has lost some weight recently and thats not good. He is being tested and poked so much lately that it’s criminal. They are 80% sure he has Celiac Disease. We are trying to figure out why he dry heaves so much. Oh, and he dry heaves because his esophagus is wrapped into a one way valve ( a surgeon did this when they placed his tube. He had aspirated into his lungs.) and he cannot throw up but we dry heaves like he wants to. The finger is pointing at Celiac Disease right now. I also tell her that B is being switched into STRIVE next year. She asked what that was and I explained in to her. I told her i’m tired of him coming home and telling me that school is hard and that he is stupid. I started to cry about here. She asked if there was anyway to know if he would progress normally. I said I dont know. We have talked about things. Asked questions that have no answers right now: Will he live with us his whole life? Will he ever get married? Have kids? Have a job? Drive a car? Tie his shoes?She asked if K was helpful. I said he feeds him with his tube, sometimes bathes him and gets him dressed. But he does not take him to doctors appointments or talk to doctors. He is hardly involved in this at all. It is hurtful. It’s like B is my child and E is his. B and K used to be closer. They used to be buddies. But then, K left us about 3 years ago. B was very hurt but I’m sure K thought he was too young to remember. He was not. And I dont think he has ever gotten over it. She asked me about home life.(I’m sure to save me from crying) I told her that we also have a friend that is staying with us and her 2 daughters but she does not help out around the house and does not babysit E up to my standards. She asked how. I said she takes him places and I never know that he went there until it is casually mentions or her daughter tells me. She rolls her eyes. I agree.

She looked over everything and her eyes widened at the overwhelming amount of information on the paper she was making notes on. “How do you do all of this?” she asks. I thought for a minute. “I don’t know anymore.” And I really dont. I’m at my limit. I’m spread much too thin and I dont know what I could possibly delegate. Everything is a priority. I’m about to break.

The rest of the day was fine. Up until it was time to go to bed and I had a minor crazy moment/freak out. I’m sure it was an effect of having to talk about things I wasnt comfortable with today. But I’m sure K doesnt like to be shoved out of the bed and watch as I try to pull my hair out. I’m losing it.

Day 57:

Side Effects: The acne is getting better. I have been washing with the purifying cleanser every night. Low appetite is still there and like I said, I’m not complaining too much.

Feelings: Today was fine at work. It was a long day but just because we were ready for the weekend. The girls gave me a hard time about not eating. They think I’m on a diet but really, I’m just not hungry. After work I got home and found out from K, who found out from my mother, who found out from our house guest, that she took E to the beach today. My hair lit I fire I think. I asked K to check for smoke. He said he could see some. Who takes someone else’s baby to the beach without asking? What if she wasnt watching him and he got hurt or worse? Did she even put lotion on him? She did but what she does not know about white babies (because she did not ask ) was that their scalps get sunburned and he needed to wear a hat. And his scalp is sunburned. I texted her because I knew she was at work and told her to not take E to the beach without asking us again. She texted back and said she was sorry, she didnt think I would mind. That’s silly. Of course I would mind. Would she let someone take her baby to the beach? Maybe she would. Our parenting style differ. Ugh.

My sister came into town to visit today. She is 6 months pregnant and has a 6 year old. Who almost comes up to my shoulder. I am not effing kidding. She is tall. I’m almost 5’2 and I know thats short but, damn. Anyway, E had a good time playing with her. B was at a Relay for Life with my mom. When he got home, he showed me his t shirt he got for doing 2 laps around the track. I joked with him that he didnt need the excercise at all because he was going to lose even more weight. I also chided my mother for keeping him out so late. It was 10 at night. My sister and I were looking at cakes for her baby shower. She asked me to make her one and I said yes. I’m pretty good at making fondant cakes. I’ll post a picture when the time rolls around.

The night was better than the afternoon, I must say. Stupid room mate.


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