“We believe that Lily has Down syndrome…” were the words spoken by our Neonatologist as I stood in the well-baby nursery holding the tiny fingers of our beautiful newborn little girl, and I honestly do not remember what was said after that. I do distinctly remember the immediate questions that went spiraling through my head. Why us? Why our little girl? We were in our late 20’s… this only happens to older folks! I went from being a proud dad to feeling like a victim…to feeling like I had literally been punched in the gut and couldn’t catch my breath.
God and I had a lot of talks over the next few days and by “talks” I more so mean me shouting and not doing much on the listening side. My turning point came after spending some quality alone time with our new beautiful little girl, Lily. I was playing peekaboo with her, and even with only being a few days old she was so attentive! I remember laughing at some of her funny facial expressions and then stopping in my tracks as Lily just sat there staring at me. It was almost like she was telling me through this simple look “Daddy…we are going to be just fine” and probably also saying “Daddy…you are some kind of goofy!”
Lily has truly taught me more about life and love than I ever imagined was possible.
Running also became my therapy, as I used it to collect my thoughts and also to show off our beautiful little girl. In just over a few years of being in the running community, Lily isn’t known to the running folks as “that girl with Down syndrome,” they know her as that spunky little Lilybean.
Lilybean is now 4 years old and is currently thriving at Madison Preschool! She spends the rest of her day at daycare (for anyone worried… yes…our kiddos are accepted/included at a typical daycare). Lily has now been going to Madison County Gymnastics in a typical class for over a year now and is doing great! A few lessons we have learned from Lilybean:
- Enjoy life and take your time! Lily might have taken a little longer to achieve some milestones, but that made us enjoy each and every moment that much more. And man, did we celebrate each and every milestone!
- Lily and her other friends that rock an extra 21st chromosome are truly more alike than different. We tend to focus so much on the differences that we don’t realize how much more we all are truly alike. And Lilybean is no different.
- Live in the present. All of the amazing therapists and teachers and doctors are doing the legwork to ensure our kiddos are prepared for tomorrow. The biggest mistake I made as a parent was worrying so much about the unforeseen future. Little did I realize that no parent knows what the future holds for their child. Lily has taught us to enjoy today and embrace each and every moment. Tomorrow will take care of itself. There’s really no sugarcoating it, getting that unexpected diagnosis 4 years ago sucked.
My wife, Kristin, and I both mourned the child and the future that we thought we had just lost. Little did we know then that we didn’t lose anything. We gained a missing piece from our life that we didn’t know we truly needed or that we were missing. Once you realize that it really is just an extra chromosome, you will realize how truly more alike than different your child is. I had a “veteran” parent of a child with Down syndrome tell me shortly after Lily’s diagnosis that we had won the lottery. It didn’t take long to realize how right she was.
Lily has truly taught me more about life and love than I ever imagined was possible. Please feel free to reach out to myself, Brent Lape, or my wife, Kristin Lape, if you would like to talk or have any questions!
