Kenai came five weeks early and was diagnosed five days after birth. Kassy and her husband Darren had no idea that he would be born with 7 Q Chromosome Deletion. Though the news was unexpected for them and their families, they love Kenai the way he is. In fact, they are happier now, and their family is more complete.

What limits to put on a child with disabilities 

Kenai is one of 34 babies who has been reported to have 7 Q Chromosome Deletion. This really is an unknown area for them because his condition is so rare. Each case is different, so Kenai’s parents are learning about his special traits as he grows.

“Do not to use Google for answers,” said Kassy. “The online research will tell you that all the things they’ll never be able to do.” Kenai has a cleft in his soft palate, and doctors said he’d never be able to eat with his mouth. When they asked if they could put a G-tube in his stomach, Kassy said no. She wanted to know if Kenai could do it by himself first, and he has succeeded.

“I don’t ever say that he’s disabled. I say that he’s differently abled,” said Kassy. “He’s pretty awesome, and I don’t think that he’s incapable. I don’t want to put limits on him.”

Kassy and Darren learn more every day about the things that Kenai can do, and they let him be their guide, not the internet. Their other children don’t care about Kenai’s disability, they are just happy to have a brother.

Being Positive Helps Their Family

“He’s always had this aura about him, this energy about him,” said Darren. “This kid is massively positive all the time… It lights me up everytime I’m around him. He’s a joy to have, period.”

Kenai is difficult to hold, because of how much he moves when you’re, but he is very smiley, and his happiness inevitably spreads to the rest of the family. “Positivity is a big deal to us. You really attract what you think about. Concentrate and focus 100% on all the positive things, and build off that,” said Darren.

“No one’s gonna tell you what your baby’s gonna do until your baby tells you what they’re capable of, and you just need to wait,” Kassy said. “It’s hard to accept, but you need to trust the process and trust your journey.”

Throughout it all, Kassy and Darren there is never a doubt about it they are thrilled Kenai has joined their family, and they love him just the way he is.

Pin It on Pinterest