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Life with Trisomy 18: Dawson’s Story

Dawson and mom RenaeBy Renae, Dawson’s Mom

Dawson is an amazing little boy! He brings such joy to our lives. He has the most perfect little smile. Although he is non-verbal, he communicates with his eyes and hands to make us feel so loved. Whether he is hanging out in his bed or his wheelchair, he loves to be where we are. Some of his favorite things are watching the leaves blow on the trees outside, watching the hummingbirds and birds come up to the feeder on his window, and hanging out watching YouTube kids videos with his brothers. In all areas, he has proven that Trisomy 18 is “compatible with life.”

One of the best things about being Dawson’s parents is the unconditional love we feel from him. We know his sounds, his facial expressions, and everything about him. Whether it is a squeeze of his hand around our fingers at the most perfect time, as if to say “I love you,” or the look his gives us at a stressful time to say “Everything is going to be okay.” Before he started having seizures, Dawson would call us and even walked with the assistance of his walker. Since then, we have learned he still does those things, it just looks a little different. Now he calls me in a special way – “Yaya” (which sounds a lot like Momma to me). When we go outside to race with his brothers and sister, we can beat them in his wheelchair.

Dawson in his wheelchair, smiling at the cameraDawson has taught us how to live by faith and to go with peace. Dawson has also taught us to live our lives minute by minute and live for the present. He has taught us how to work together as a team with medical professional so that we receive the best possible care for him. Dawson has taught us how to look for the positive in things, and that there is more than one way to do things. We can race in a wheelchair if our legs don’t work. We can communicate with our eyes instead of our mouths. Most importantly, he has taught us that every life and time is important. He is amazing, and we are better people because of him.

I wish that more people knew about Trisomy 18. I wish that more people and medical professionals were aware that our kiddos are living with Trisomy 18. Each year, we go to a conference sponsored by the SOFT organization (www.trisomy.org), where we see numerous adults in their late 30s living with Trisomy 18. For so many years, Trisomy 18 has been labeled a lethal diagnosis that is “not compatible with life,” but that couldn’t be further from the truth. Trisomy 18 is COMPATIBLE WITH LIFE!!! My son is living proof of that. With some medical intervention, our kiddos are succeeding in so many areas. Trisomy 18 can be a hard journey, but every time I look at my son, it is all worth it. I have been walking this journey with Dawson for 14 years, and I would do it all over again for just one of his smiles, one of those times he says “I love you” with his eyes, or one “Yaya”!!