A to Z Challenge: K

April A to Z Challenge
Day 11: K
April 12, 2013

"There is no feeling more comforting and consoling than knowing you are right next to the one you love." 

Kay Knudsen

Kaleb on his bike @ school

My son Kaleb was born October 28th, 2002. It is hardly believable that it has been 10 years already! Especially since the specialists and doctors said that he would not live to see 3 years old. Kaleb was the "one in every 9-10,000 births worldwide" (chargesyndrome.org) diagnosed with CHARGE syndrome. Each letter of CHARGE stands for a different abnormality (you can visit another blog where there is a tab to the CHARGE syndrome website http://testimonyinlife.blogspot.com) or visit the CHARGE syndrome organization website to learn more about it. 

Weathering the storms...

Kaleb also had a TEF (Tracheal-Esophageal Fistula), which means his passage way for swallowing and eating was connected to his air way. He was air lifted to a reputable hospital for immediate surgery. We wouldn't be able to bring Kaleb a lot to learn and get use to. Especially since my pregnancy was 'normal' until my water broke about two months early.

home from the hospital until 6 months later. He would have a trach, j-tube, and wires for machines everywhere. It was

Supporting hometown teams

K-man would have had a much better quality of life, however - right before he turned two, while I was asleep his night nurse let him get completely dehydrated. We would rush our son to the hospital and a month later bring home a totally different child. Kaleb lost nearly 70% of his brain and all of his cognitive skills that I had worked so hard on. He knew some sign language (since he couldn't talk) he loved brushing his teeth and hair. He loved to match colors and pull his Pop pop's glasses off of his face. He could sit-up on his own, he could pull himself up, and was learning to walk with a walker. All of this disappeared and when we brought Kaleb home for the second

How 'bout 'dem O's hon'

time, he now was also diagnosed with epilepsy and quadriplegic cerebral palsy. The first year was the hardest, he cried all the time, and nothing we could do would make him happy.

Fast forward eight years later, he loves attention now and to be held, he loves to watch Mickey Mouse Clubhouse, and he loves his lights we have hanging on his wall. Every now and again I get a brief window where I can see the 'old' Kaleb, especially when he laughs and smiles. Which, I think if the world was in total darkness, his smile would brighten the world. 

Until next time or the next... dream ~ K.E.Nowinsky

March Blog Challenge Day 16

March Blog Challenge

Day 16: what is your biggest achievement?

March 16, 2013

Thinking about my biggest achievement, I couldn’t decide between my degree, my first book, or my son. My conscious tells me that it should definitely be my son; he is my one and only child. I am also very proud of my degree. I worked really hard and sacrificed to earn my degree in psychology.  I am also proud of myself for finally publishing my first book “Going off Dreams” it has been launched a little over a month now. All of these achievements I would not have been able to do without the support that I have. God, above all, has blessed me with so much. Which would you consider the “biggest” achievement?

My son was born in 2002. I remember when I found out that I was pregnant. The joy that I felt was short-lived. Family and friends were not happy about the news. I was unmarried and apparently no one liked my boyfriend at the time (the father of my son). My dreams were consumed with the future possibilities. Before finding out the sex, I would have sworn that I was having a girl, because in my dreams I had a daughter. I was originally due in December, but my son Kaleb decided that his birthday was to be in October instead.

You can read all about my story and follow links to buy my book by visiting www.goingoffdreams.com or even visiting my blog for the series http://goingoffdreams.blogspot.com.

In 2011 I earned my Associates of Arts degree in Psychology through the University of Phoenix. It was very challenging. I enjoyed writing the papers; the hardest part for me was algebra and working in teams. I was 60% through my bachelor’s and I do plan to finish the bachelor’s program for psychology sometime in the future.  My last course was the most challenging because of the percentage of our grade that was based on other people within the team.  It affected my GPA, which I worked hard to keep above 3.5. Feeling so burnt out after the course, I welcomed the break.

It was during this break that I started to contemplate working on the first book in a series I had written years prior. The original story consisted of some of my personal life. It took me a month to work through the old story to edit and add new story lines after taking out my personal history. The great thing about the indie publishing revolution, it took the impossible and made it possible for me. I know my first book isn’t perfect, but I still love the story and am working through the second book and hope to have it launched sometime this spring (2013).

Until next time or the next… dream

K.E.Nowinsky 

March Blog Challenge Day 10

March Blog Challenge

Day 10: your daily routine

March 10, 2013

Before my nervous break-down, my routine was consistent. I would get up, go to work, come home and it would start all over again. I use to have my son every weekend too, so weekends I would have to get up early as well. His father and I divorced and have shared custody. My son, Kaleb, is severely handicapped and requires 24/7 care. Now, we work the ‘week on, week off’ routine. Although, now that I am not considered employed, I help his father and their new family as much as possible. My career has been working with special needs students. My background training is with behavioral management.  However, due to my attendance and failure to correctly submit paperwork, I was terminated. All of this is an experience that I can share another time though.

Each week can be different, the weeks that I have my son I have to get up around 5:45 a.m. to relieve his night nurse (when I have one). If no night nurse is provided then I have to care for Kaleb myself. Sometimes, if Kaleb is sick I will have to keep him home for observations or hospitalizations.  He has a feeding tube in his jejunum (J-tube) so that he can receive nutrition and a tracheostomy (trach) that helps him to breath. Again, I can write the story of Kaleb another time – basically, I either stay home with Kaleb to monitor his day or he goes to school for several hours and I am ‘on call’. We don’t have a car, so that limits my abilities. My parents let me borrow their car when they can and I am very grateful for their support.

When Kaleb is with his father, I wake up and take care of the animals. Then I turn on my netbook and start the process of checking my e-mails, Facebook, Twitter, and +Gmail. I have been steadily blogging and enjoy taking the time to write and share with an invisible audience. If the mood is right, I start editing and writing within my book series “Going off Dreams: Book 2 Daydream - For all in the Hope”. I usually read the last couple chapters from where I left off, then start reading the rest, fixing what needs to be fixed and going through trying to make it captivating for my readers.  According to the spoon theory http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ each day you are given a number of spoons, each spoon represents a single activity. Some of us have unlimited number of spoons, some have less. Today I feel like I don’t have any!

I have been working so hard trying to get my name and book ‘out there’. Constantly monitoring and replying on the social media outlets; this alone seems like a full-time job. My mom keeps telling me that any form of success does not happen overnight and that I need to give it time. Some of my family have been really supportive, especially cousin’s I have never met before! +Stevie Nowinsky and Tanja Nowinsky. Not to dwell on distorted perceptions, but if my family that I grew up with shared my book and put as much effort as my other cousin’s, I feel that it would reach more people. C'est la vie!

Until next time or the next… dream

K.E.Nowinsky

www.goingoffdreams.com