www.macygilson.com/stories/amadeus-reign

Amadeus...name meaning love of God…the perfect and final name chosen for our last baby of 5. My husband and I already had 4 kids - 2 boys and 2 girls, so for our last, we wanted the gender to be a surprise. Little did we know that our surprise was going to be bigger than any gender reveal!

My last pregnancy was just like all my other pregnancies. No abnormalities, nothing we worried about, nor was our birth team showing any concerns. At 38 weeks, our baby was ready to meet our family. We were shocked because our last baby not only came earlier than all of our other babies, but our labor was a lot longer and harder. We all were so eager to meet the final member of our family. I had a beautiful water birth surrounded by our family, and I nailed my birth plan, but unto our surprise, we had a beautiful baby girl (we were sure we were having another boy)! Moments after our precious daughter arrived, I started to notice a few differences in her face…nothing I was worried about, but she did look a bit different than my other squishy babies. One of my friends/clients had recently had a beautiful son and my daughter had a few features that resembled some of his, but no one was saying anything, so I quickly dismissed it.

Amadeus Reign is what we named her and she is perfect. Her siblings were instantly in love with her. Weighing in at 7 pounds and 10 ounces, she measured in at one of our biggest babies so far. She was so calm and so sweet, she latched on beautifully and begin to nurse, and then I started to notice that she was a lot squishier then all my other babies. She appeared to me as if she had Down syndrome, but no one was saying anything, so I I thought that maybe I was just crazy. Looking back now, I remember my midwives coming in and out of the room. During the baby exam, one of my sweet midwives came to me and looked at a loss for words. She then so lovingly mentioned that they have seen a few markers for Down syndrome. I can only imagine what they were thinking, but I’m sure they were shocked when I was relieved that they mentioned it. I knew then that I wasn’t crazy, and I saw exactly what they saw. They also mentioned she was perfect but they had concerns about her heart, so off to the hospital we went.

At the hospital we were treated terribly. They were annoyed with the fact that we had her at a birth center (which my midwives prepared us for). It took days for them to give us a true diagnosis and on that day, we also found out that her heart would need surgery. Being in the hospital was so hard. They didn’t want me to nurse because “babies with Down syndrome can’t nurse,” according to them. And the hits kept coming. Not once did anyone congratulate me on my new baby. One of the doctors went as far as to tell me, “sorry.” I wanted out of there so I could take care of my baby the way I wanted to take care of her. One week later we were released with a diagnosis of Down syndrome and told she would need open heart surgery before her 1st birthday.

Amadeus is now about to turn two, and she is amazing. She deserves a “Congratulations!” She doesn’t deserve “I’m sorry!” She has worked so hard these past two years to over come so much! She fought for her life for 20 days over Christmas due to RSV. She survived an 8 hour open heart surgery and was released in a week. She has over come oral aversion after having an NG tube for 180 days. She has proven to be the healthiest kid in her daycare class amongst typically developing kids.

She is currently working on standing and walking, but I know she won’t stop until she gets it. Her determination and strength is encouraging. Kids with Down syndrome, just like typically developing kids, are capable of anything - as long as they have the opportunity to do so. To us, Amadeus is just like us! Therefore, we will fight to make sure she gets the same opportunity as our other kids! But one thing Amadeus has that we don’t is true unconditional love for everyone. She is a ray of light in this hard world. We adore her more than words and