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Introduction

As your know by the Bio, this blog is about my little Bee Kylie. She is 3 years old along with her twin sister Kinley. My name is Jennifer, I am Mom, I have 5 children - Weston, Alexis, Zachary, Kinley and Kylie! Being a mother has been the greatest gift I could have ever received even though its probably the hardest task I've ever had to do. I am a mom to 4 typical kids and one special needs child. Just when I thought having typical children was hard, the universe threw in a special needs child, whom I wouldn't change for the world. When we first received Kylies diagnosis, we weren't sure how much longer she would live. Kids born with Hydranencephaly sometimes don't make it longer than a few hours after birth, others a couple days or weeks. After finding a support group for parents of children with the same condition I learned that their children have lived years, the oldest documented being 33. It definitely gives me hope for the longevity of her life but at the same time every week or so one of the parents announce the death of their child. It's awful news and every time I'm refaced with our reality... They told us she would probably never walk, talk, eat by mouth, smile, feel emotions or know who we are. I was crushed of course, and struggled after that for quite some time and still do. She may not do those things like the rest of us but I have found ways to work towards those goals even if they're a little different. I have never believed in something like I believe in her. She has taught me to have Faith in the things I cannot see and thought was impossible. I have so much to talk about, so much to share and vent about, I hope you read this with an open heart and open mind with no judgement. Being a special needs parent is a journey that only a select few get to experience and I'd like to share my experiences with you! Thank you for coming, always remember to smile and bee kind:)

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One night when Kylie was under 6 months old, we were sitting at the house not doing much of anything when I noticed what looked like blood coming out of her G-Tube. It was just me and her there and I