DAILY LIVING & MOBILITY

This New Life of Mine

Rare Disease & Syndrome

Jenna Gines

This New Life of Mine

I started working with people with disabilities in college, clear back in 2006, and I loved it. It became one of my greatest passions. I worked at a residential program, a preschool for kids with autsim, and a summer camp for all ages and disabilities. I started taking special education classes and learned so much.

Then I started my dream job and became a stay-at-home Mom in 2014. I loved it but I missed my other passion. And then my second son Jackson was born. He was perfect. A beautiful, healthy, chill baby. I remember telling my husband, there's something about this baby. I could feel it.

Around 8 months old our family started noticing his eyes made clicking movements when we would rock him. I hadn't really noticed but said I would mention it to his pediatrician. His doctor said it looked like he had nystagmus and asked if I noticed anything else about him. I thought, now that you say that, he's not sitting or rolling very much. His brother who crawled at 14 months and walked at 20 months, was sitting by 8 months. He referred us to a neurologist so we could see if there was more going on.

After many doctor appointments, blood work after blood work, we recieved a diagnosis for our sweet boy in October of 2016. I knew something was going on as soon as the pediatrican referred us. I knew we could recieve a diagnosis but on the day we did, it's like I forgot. Wait, what? He has what? Will he walk? Will he talk? Are the questions I asked the neurologist. It's so rare she didn't know what to tell me. Since then we have worked with genetics doctors to find the gene associated and they can't find it. So technically our sweet boy is undiagnosed. We don't know what he has or why his body works differenly then ours do.

I mourned the little boy I thought I had and the life we were going to have. I was so excited to have my boys 17 months apart. I was so excited for the them to grow up together, play sports together and be best friends. I knew that would still happen, it was just going to be different then what I had imagined.

I let myself mourn, I let myself process it and then I accepted it. I knew not accepting it wouldn't get me anywhere. I knew Jackson would now be on his own timeline with development and that it was perfectly okay. I don't compare him to his siblings, friends, or the chart at the doctors office. He does things when he's ready and when his body will allow.

And that is my advice for any Momma or Dad that receives a diagnosis for their sweet baby or child. Process it, mourn and then accept this beautiful, new life you've been given. You’ll meet people you never would have met. You’ll learn things you never would have learned. You’ll advocate and you’ll help change the world.

Welcome to this new life!

Photography by Kylee Ann Studios and Photo by Mad

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