Wesley

DSAM Wesley

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Today’s first post comes from Wesley’s mama, Amy. Amy and I have been Instagram friends since our boys were very little. Wesley and Sam are only a few weeks apart. I have loved following their journey the last three years and am thrilled to have them on the blog today! You can find Amy on Instagram at @TheThomps, on her blog, and on Twitter.

How did you find out Wesley had Down syndrome?

We didn’t find out that Wesley had Down syndrome until 4 days after he was born. There were suspicions post-birth, but he didn’t have any heart defects, aside from a tiny hole (PFO) that the doctors were sure would close on its own. He didn’t have a palmar crease, he was able to breastfeed immediately, he didn’t have any glaringly obvious “signs” aside from mild hypotonia. Wesley was in the NICU for jaundice and we would have one neonatologist come in and say, “I think he has Down syndrome.” Then the next neonatologist would come in and say, “No, I don’t think he has Down syndrome.” It was a roller coaster with my postpartum hormones and getting mixed messages. The results from the genetic testing came in when I was at the hospital by myself with Wesley. A doctor I had never seen before came in and blurted out, “We have the results from the test and your son has Down syndrome. Of course, that doesn’t change anything about him from when I came into this room, he’s still the same little boy.” I was devastated. I called my husband, weeping. Of course it changed things – all my hopes and dreams for my son were dashed by that random doctor. After I called my husband, I called my sister. I’ll never forget her response. She told me, “Aim, I already loved him, but I love him 500 times more now that I know he has Down syndrome.” My sister is a Child Life Specialist and has worked with so many people with Down syndrome and knew how blessed we would be.

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If you knew someone who was told their baby would be born with Down syndrome, what would you tell them?

It’s ok to grieve for the child you thought you were going to have, it’s ok to feel loss. Your life will look different than you imagined. Just know that people with Down syndrome can play sports, sing in choirs, go to college, live independently, get married, and be productive members of society. I think those were my biggest fears – the future and what it would hold. Take advantage of Early Intervention services as soon as you can! It seems overwhelming sometimes, but looking back now I see how much they helped Wesley get to where he is today. And it’s ok to take a break from therapies, too. Your child needs to be a child sometimes and go to the museum, or go visit Santa, or go to lunch with mom and dad and then ride the train at the mall. You will become your child’s biggest cheerleader and advocate. You will find a voice you didn’t know you had. You will meet amazing families on this journey. You will be touched in so many ways by Down syndrome. I have people randomly stop me and tell me about their amazing uncle/cousin/sibling with Down syndrome all the time. Your child with Down syndrome will light up a room, will become your greatest teacher, and will help you see the value of life that the world deems unnecessary or unworthy. Don’t fear what is ahead. The journey is beautiful.

 

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Last month, while in Indiana for The Influence Conference, I got to spend a little time with Amy, Wesley, and Wesley’s new little brother, Louis. This was actually our second play date in the last year. I love getting to spend time with my Instagram friends in real life!

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 Click below to read all the stories from Down Syndrome Awareness Month!

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