Meet six-year-old Keagen. A Minnesota boy! Sam and I got to meet Keagen, his mama, and his little brother a few months ago at the Minnesota State Fair. Such a treat to give them hugs in real life. Today, Jess shares about her journey so far as Keagen’s mom and the very real challenges that are a part of life while parenting a child with Down syndrome. You can follow Jess on Instagram at @chanceleevy.emmanuel and by clicking here to reach her blog.
I was 19 and had just returned home after finishing my first year of college the summer I got pregnant by my then 18-year-old boyfriend, one month post his high school graduation. We always said Keagen was planned, he just came five years early. We didn’t know our son had Down syndrome until after he was born. I’m not sure I could even tell you how long after his full-term, 5 pound 8.5 ounce body was laid on mine, minutes I would guess. The emotion I remember feeling the strongest was embarrassment. This makes my cheeks flush today. I remember thinking that not only do I have to do this (the “special needs” thing), but I have to do it alone, because what 19-year-old would stick around for this? The embarrassment hung around for all of maybe an hour. It was a quick acceptance. Maybe it was because I was young. It was my first baby. I didn’t know any different and I had zero expectations. I think my mom had a more difficult time with my baby having Down syndrome. Difficult time not in acceptance, but in the guilt she felt that it was me and not her. She had her last baby, my sweet sister, at age 41. A perfectly healthy, Down-syndrome-free-despite-all-the-risks, baby girl.
We had a short name list by this point, and we were leaning toward Tucker. Tuck! My mom asked one thing of me, “Please don’t name him Tucker. Because he might not be able to say Tuck, he might, people might call him…” I’ll let you use your imagination to finish that conversation. I was flipping through a baby name book someone had brought to the hospital and spotted Keagen. Keagen: little, fiery. I pointed at the name, the meaning, and we knew we had it. Chance was on our list. Chance became more of just a name we liked, because what are the chances of all of this? Lee, a family name, had to be in it. I wanted the baby to have my last name, being as we weren’t married and if I had to change his last name, I wanted it to be because of a good thing.
Keagen Chance Leevy Triplett
It was in that moment, the moment Baby Boy Triplett became Keagen Chance Leevy Triplett, that all of the beautiful pieces of our crazy backwards life started to fit together just as seamlessly as could be.
Today, Keagen is Keagen Chance Leevy Paulson. He is a little 36 pound, 6 year old ball of fire, just like we knew he would be. Jon, now my husband, is the best father I could ever have imagined he would be. It’s as if the moment Keagen was born, Jon was too. Keagen is the biggest daddy’s boy. He is also a big brother and oh, is it his proudest role! Keagen loves to play outside most and has to be doing anything sports related. Reading is one of his favorite things. He also loves school.
Our life with Keagen isn’t without challenges. There is a popular phrase in the Down syndrome community and one I cannot stand with one ounce of my being: more alike than different. Everything was the same when Keagen was a baby (or so I thought, definitely different now having a typical baby). I would even go as far as saying everything was the same (you know, despite the open heart surgery at six months, the epilepsy blip around one year, the weekly therapies since days after we brought him home…) up until around age four. Keagen started some behaviors around that age and life has gotten progressively harder as a result. I know it will get better. I also know that before it gets better, it will probably get worse. I know a big part of our behavior problem today is related to communication and Keagen not being able to express himself as he needs and desires to be heard. He’s a runner and he is sneaky, smart, and FAST. He doesn’t (appear to) understand what can happen as a result of his running. He is defiant and though sometimes a wonderful listener, it’s not a strong point this season. I often have to turn down invitations to go do this and that with friends if I know I will be alone with both kids, because keeping Keagen safe and in line is too much while giving his brother everything he needs and deserves as well. At least, it’s too much without completely losing my crap. I can’t run upstairs and switch the laundry without him doing (whatever) downstairs. We aren’t even seven years deep into parenthood and thoughts of us maybe never getting to have an empty nest creeps into mind and weighs on my heart. The inflexibility we will have then, the inflexibility we have now (as far as who is capable of caring for him and what we will miss out on then/what we don’t get to do today). I worry about where he will be when he is of age and who will take care of him and what if someone is hurting his vulnerable adult self and what will happen when mom and dad die if he outlives us and gosh, what if he goes before us? Because we know their life expectancy is shorter than ours. I could go on forever. Just as I could with his brother, Dashen. But with Keagen, it is different. It is so incredibly different and when people, MY PEOPLE- people like us- say it is more alike than different I want to cry. The difference is immeasurable. And powerful.
But so are we. Life is uncertain. We all know that. Our future is uncertain, Down syndrome or not. If someone I knew was told their baby would be born with Down syndrome, I would tell them that life with a child with Down syndrome is wild and it’s bumpy. Hang on like heck, but don’t you try and drive. Just go with it. Every bright and shiny, dark and twisty season. Be the you your child needs that day, not the parent you always thought you would be. Enjoy the ride. It’s all crazy kinds of perfect and it’s everything you never knew you needed. You’re not alone.
“Deciding everything is falling into place perfectly as long as you don’t get too picky about what you mean by place… or perfectly.” Brian Andreas.
Our State Fair meet up in August. Two blonde Minnesota boys!
Click below to read all the stories from Down Syndrome Awareness Month!