Growing with Grace- Early Childhood

You are here

When I think about my childhood, I think about the many health issues and the effects that those had on my family. Growing up as a child with a disability, life wasn't always easy for me, or my parents and siblings. My mom was struggling to find out what was happening with me and there wasn’t much information about 22q at that time, and she had to seek and push for more answers and help. After much persistence from a mother’s intuition, the doctors did genetic testing and found I had Velocardiofacial Syndrome (VCF). My mom looked up to see if we had any specialists around the Toledo, Ohio area and did not find much.

While my mom was struggling to find information about my new diagnosis, we were also dealing with the medical abnormalities and issues that I had. At 3 months old, I had to have a colostomy and then later on, when I was 6 months old, I had a reversal colostomy. At the age of two I had a cleft palate surgery, which is very common with 22q children. In addition, there were at least 5 ear surgeries and was found to need hearing aids due to permanent hearing loss. At age 4 I had to have an open heart surgery due to abnormal heart structures. There were many medical issues and at about the age of 1 year, we also began to notice developmental delays. I had speech delays and I had to learn how to use sign language because I couldn’t talk. It was determined that I had apraxia of speech around that same time. In many areas, I was developmentally delayed. Throughout much of my early life there were many medical appointments and therapies to help with my fine motor, speech, and gross motor delays.

Although my struggle and medical issues are the bulk of my childhood, they are not the only parts of childhood. Just like any other child, I remember making friends, my first day of school, joining clubs, playing at the park, and having a core group of friends as a teen. My point is that although my childhood was riddled with challenges, in many areas I was just like any other kid. Yes, my childhood was different and hard, but there were still aspects that were ordinary and looking back, I have grown from those seasons and continue to move forward!

Latest News

Upcoming Event

Spread the Word