This entry is taken from the summer of 2008. I was on summer break from school. Jordan was hospitalized and I would spend the entire summer down the street walking to seeing him daily during visiting hours. In between I would study at the local coffee shops. I needed to remind myself during this time what was going through my mind.
Subject: Today's Thought
Date: August 14, 2008 3:04:44 PM CDT
August 14th - Kiva Han coffee house sitting by the window thinking about yesterdays visit (i left the unit fighting back the tears, holding them until reaching and the closing of the elevator door. I know that it is a bump in the road for him and this will pass) my thought is interrupted by this sweet little girl who knocks on the window staring at me with a big smile and beautiful bright blue eyes. I smile back. She is a beautiful little girl I think to myself as she runs off to catch up to her Mother and who I think must be her little sister. Both dressed in sweet little dresses and both toad heads....i think of my little boys years ago at that age maybe 4 and 6 both with that child's blonde hair and that same sweetness. Again after sometime I am surprised by the presence of this little angel with both hands on the window smiling at me. I smile back. A few minutes later I raise my head to a woman standing in the doorway "my daughter thinks your beautiful...you have a great smile" Oh no, she is a beautiful little girl! I stretch to look out and watch her back up in the car with the little girls already buckled in.
August 05th - Over two weeks ago I wrote the last entry and looking at it now I smile. I can see that I am learning to trust myself. Although I did not know about the outcome when I last wrote, I knew that I needed to be here. On Sunday while lying in bed on his side, he looks over at me and asks in a quiet peaceful manner " Mom how long have you been coming to see me?" I take a deep breath in and say "I have been here all along." Thanks Mom.
July 20th - I feel better just knowing that I will be close by and that I can see him. He needs to see me even if it makes no difference on his condition.
July 18th - She says "I think I would have probably given up already." Give up is not a choice for me. I think to myself as I look at their picture "together" so many years ago. The innocence of two young brothers in bliss with one another. How do you give up on something like that? So that my life will be better pr easier? How possibly could my life be better by walking away as suggested being better for "me." How do I look at him in the eyes and say that I can do no more. A parent that loves its child does not walk away from their love for their child. God gave him to me. He is mine. Gary put it perfectly " Jordan you are my responsibilty. That's how it is.
July 17th - God take my life not his. He does not deserve this life. Why did you let this beautiful young child develop this way? That little blonde hair boy with his vivacious smile. Always Always Pleasant. Always Always Smiling. Now his Days are unpredictable and mostly unbearable. He is either smiling or he is suffering. Tormented with statements "I can do better" "Help me Out" "What is wrong with me" These are the mild days when compared to days like Tuesday. Unrelenting Psychosis.. Are you God? Removing his clothes. Bolting here and there? Yelling out random words. The nightmare that I am losing Jordan even further is terrifying. Please God do not take his mind. Take mine instead! Give him back his life when he was that precious smiling cheerful happy little boy.
July 10th - talked to jordan over the phone, he said he was writing about his life. he read me what he wrote, here is a section that i was able to capture while he was reading:"
He starts "How am I feeling"?
I took some Ativan and Abilify today to help calm myself down. It feels like I need to go back to school again. I feel down. I feel upset. I like to talk to help me not get upset. They say things like "hey jordan", i can't remember what she said , but liz a girl here said hey jordan why are your eyes all red, i told her i took a shower, i was holding my head close to the water. maybe i can go to a special school.. there is something going on. lots of thoughts that i can't talk about. i want to go to a special school again. i am taking meds. when two people talk and people not saying something right i feel like helping them out.
July 8th - today is another day...i hold my head in my hands and stare down at my book... my head spins on which way to turn with jordan and his needs...i send more info to jordans attending in Pittsburgh and then put a call in to dr. dobyns the geneticist whom i have not seen in almost 9 years... moving forward seems to be the only way in order for me to not sink ... my son depends on me to remain strong and to not crumble... without his father and i, where would he be..... the thought of this is frightening and is what keeps me moving forward.
July 9th - i finish an email that i started last night. I send it off to dr. jacobson and others. i reflect back on those early days of when the social worker said to me that you will need to advocate for jordan...at the time i did not know what she meant...but over the years this is exactly what i have done and remarkably it has been the hardest part of his care. she knew what she was saying. i am exhausted and feel sometimes insecure in my ability during these advocacy periods.
