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