akronchildrens.org

Down syndrome child is a special blessing

Isaiah

A lot of people have been starting to ask me about my pregnancy and how I’ve dealt with learning about Isaiah’s diagnosis. We did not know prenatally that Isaiah had Down syndrome.

For more than one reason we opted out of the tests. The doctors did assure me that he was growing perfectly and that if he had Down syndrome they would see it in my ultrasound.

When he was born there were multiple complications and I was scared to death. He was rushed to the NICU at Akron Children’s Hospital to receive special care.

All I kept thinking about was how he looked like he had Down syndrome. When everyone left, I mentioned it to my mom who said it was just because of the hard delivery that his face looked different. But in my heart from that first moment I knew.

Isaiah was put on a cool cap for 72 hours and I just sat and stared at him. Two days after birth my fears were confirmed. Isaiah’s doctor, Harriet Feick, did not apologize or look remorseful that I had a baby who wasn’t our definition of perfect, and didn’t make excuses for why this was happening to us.

When you first hear news like that, it’s overwhelming. It’s like a flood of sadness, anger, and fear overcomes you. You start looking for someone or something to blame. God became the center of my anger. I couldn’t believe He let this happen to me. I was scared to be a mom and now I was a mom to a special needs child. I couldn’t handle this. Why was I being punished?

How different I feel today. I feel foolish that I felt those emotions, and thought God was actually punishing me. My son has brought joy and happiness to my life that I didn’t even realize I was missing. He is excelling every day, and even if he takes more time to learn something new, I feel the same pride and joy.

Sometimes I stare at him while he’s sleeping and just cry because he is such a blessing. His little smile fills me with so many emotions, so much happiness and so much love. I adore his little almond eyes, his tendency to be extra cuddly and his precious laugh. Isaiah has changed our lives in such a few short months.

I don’t look at disabilities the same, and I don’t think they define a person anymore. I wouldn’t trade Isaiah’s chromosomes for a thing. There’s no need to apologize to me for his diagnosis. It does not define him. I am not sad he has Down syndrome. I am blessed.

Akron Children’s nurses treated him no different, they were so sweet and encouraging. They helped me become comfortable with my new journey. I’m forever in their debt.

Thank you for reading our story. Visit us on Facebook at Isaiah’s Mosaic Journey.

  • http://www.facebook.com/GoldenRavenWolf Shari Evans

    This is my very special Great Nephew he was born on my birthday!

  • http://www.facebook.com/ed.summit.7 Ed Summit

    Such a touching story.  We wish the headline said “Child with Down syndrom” rather than “Down syndrom child” to use person first language.  Isaiah is so wonderful a label shouldn’t define him!