Thursday, December 16, 2010

Hope and Belief

I had moved from her room and was now leaning up against the door way. From where I stood I could see just the bottom half of her watching her briefly before I returned to the nurses station. She had been brought to us from another hospital; pyschotic and fragile, and wanting to end her life and had now fallen asleep. The hallway that I was also monitoring was unusually quiet with patients either in their rooms or in the group that had just begun at the other end of the hall. I gazed down that hall at the closed doors and reflected on how that room and these halls took on different meaning than they had only a short few years ago.

I don't remember getting on or off the elevator when I would come to visit as I do now. I don't remember the nurses or even the nurses station that I would pass by. I don't remember much of anything other than having a feeling of hopelessness - but also a strong feeling of needing to believe. I do remember that. I sense those feelings too in many of the family and friends that climb off that elevator, as I had done countless of times. Today those doors and this hallway take on new meaning. I am on the other side I think to myself. Everytime that elevator door closes behind me I smile inwordly thinking of Jordan still sleeping, this time peacefully at home. I think of how knowing "hopelessness" has taught me. And "believing" is what carried me through. I look back once more before walking away and I think of her and all the others, if they cannot for themselves, then someone must have hope and belief.

"Every color of life is equally beautiful and to be equally enjoyed.

Monday, May 3, 2010

New Meaning

Wow, has it really been six months since my last entry! Even though I have thoughts (many thoughts) "oh I must blog" they never seem to get out of my head and onto this space. Partly because my time has been occupied with the day to day of managing life and routines with my youngest son and also partly wanting to write more than about battles and struggles that have become a part of my life.

I always look at the name of this blog "Every Color of Life" and reflect on it's meaning. Up to this point, it's focus has been about my youngest son and struggles with his condition. I do not have many entries, as I always struggled as how to share and what to share. I found that taking emails that I had already spent so much time in writing was the most easiest way to begin. These at least peeked into my- and - our- life until I really figured out what I wanted for this blog. I realize now that I want more for Every Color of Life, more than just one focus, after all I do call it "Every Color" and there are many colors to share.

Years ago my life crossed with another. A man who I fell in love with and who changed my life. Not because of things he did for me, but because of sharing life with me in a way that I had never experienced. He would hold me and tell me beautiful stories of life and philosophy. I thrived with his conversations and his deep understanding and views of life. Although I would only have this person in my life for one year it would be one that would mark a beginning of new life in me. He would talk to me about my life and explain that we should have no regrets, that every color is equally beautiful and to be equally enjoyed. This was so hard for me to understand as life thus far had been really really hard. Over time I was able to take on it's meaning and how hurt, pain, and failure, although not pleasant, are all experiences that we can benefit from. We benefit from them when we have no regrets. Right now that is what I am working on. I have come up against this feeling "again" and want to make this feeling a stepping stone to a deeper understanding of life as it is now.

To do this Every Color of Life will concentrate her writings on life and what she has learned along the way. I will continue to share my Jordan and his story - our story, but there will be branches to this with many colors to share along the way.

Until then....every color is equally beautiful and to be equally enjoyed.

Tuesday, November 17, 2009

Summer 2008 Today's Thought


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.

Sunday, September 27, 2009

Time for Chicago Again

Well, the plan was to make Jordan a priority. The intention of state placement was suppose to be the answer to getting him into the system and the right discharge. There he would take more of a priority...so we were told ...and so we (hesitantly) agreed. The so called PLAN and real intention became evident in a very short period of time, less than 24 hours actually, that is, not wanting him to return. For starts, before even getting off the ambulance from his transfer.... his medications (all that he had improved on after many attempts) were either changed or discontinued, which landed him in the ER the very next day and me being forced to catch the next plane out. Second was the lack of communication...zilch...nothing from this very facility that was suppose to be the answer. Oh the initial conversations went well, they even had a person discharged to Alaska because that is where they found the most appropriate program. Wow, Jordan has a chance here I thought. I worked hard to try to believe that, even though I tossed and tuned at night trying to convince myself of such hopes. I must have known. Now 6 months later and only one month away, Jordan gets to re-enter the community with no plan....plain awesome! Well then again, somewhat of a plan...time for Chicago again. I was told last week when clinically ready, that is when they leave, the other place told me that he needed more than clinical stability, if not he would keep coming back. Oh well, maybe this time things will prove to be better. At least now he will be closer, he will be here. I always said, I felt like I was in front of a moving train, just trying to stay ahead of it. Here we go again. It's true.... "every color of life is equally beautiful" and this is how were treating this one.

Thursday, August 27, 2009

Man lost at sea



While Jordan struggles to understand and express himself verbally, somehow in his art I think he expresses a poignant part of his experience and his spirit. I can't help but think today of his drawing of the "man lost at sea", searching for land but not knowing where it is. Jordan, stated that this man was not worried though because while he feels lost at sea, there are others in the boat that know the way. (written feb 20,09 by a little helper along the way)

Two Summers Ago

I started this Blog two summers ago.... and was sitting here tonight wondering why I have not posted since. What happened? Why did I stop? I knew I would come back eventually and it would be when the time was right. The time is right now. Let the blogs begin.

Friday, July 6, 2007