Evan’s Story
  • By Deborah

I found out I was pregnant with Evan in January of 2006. I have had three high risk pregnancies due to many different complications. I was offered the Triple Screen at the suggested time period. That would be the only test I would have that day. I looked at my husband and said, “I am not getting a blood draw for one test. I have two other children who are perfectly healthy.” So, the pregnancy went on like my others with no idea that Evan would be “special”. The day I scheduled my C-Section for mid September I went into labor with Evan. We went to the hospital and everything went as planned. As I was in recovery the pediatrician that was in the room while I delivered looked at my husband and said, “Have you ever seen the show “Life Goes On”? My husband told her he had. She asked if he remembered Corky. He said yes. She replied, “That is what we think your son has.” He asked them to wait until the medication wore off to tell me. Well, they didn’t. As soon as she told me, I cried. No one else came to talk to us. Our son was being transferred to Children’s Hospital because his oxygen levels were low. Finally, about 12 hours after he was born the head pediatrician of the nursery came to talk to me. He said if they knew what I looked like they never would have made the call about my son having Down Syndrome. I demanded the chromosome test. I was released within 36 hours of having my son. I did not want to stay at Camp Pendleton when my son was in San Diego.

After we confirmed that Evan did indeed have Down Syndrome, it felt like my world started to spin. There was so much information. So much negativity from the doctors. My first thought was “what is his life expectancy?” After doing research I found out that it has grown over the years. Relief set in once his heart was cleared. Now, to only get off the oxygen. I remember telling my sister that I knew I wasn’t bonding with him. She asked me why? I told her I was scared. He didn’t seem to be improving. I hung up the phone, got down on my knees and looked up into the sky. I said, “Please God, if you are going to give me this child than give him to me. Do not take him away.” Within a few minutes the phone rang. The caller id showed it was the hospital. I would shake whenever I saw that number. I automatically assumed the worst. Well, to my surprise the nurse told us that Evan pulled his tubes out of his nose AND the machine and was doing fine on room air. He would have to have a sleep test, but if all went well, he would come home the next day. I screamed! My baby was finally coming home. I also jumped in feet first to find out all I could about Down Syndrome. I know I cannot know everything, but I thank many people I have talked to along the way for their advice and stories that have helped us.

Evan is a lot like my other children except that hitting the milestones took a little longer and had a little more help. I thank God every day for the therapists and support system we have had through the years. I refer to him as my hero. He has been through more in his 6 short years than I have in my life. His kindergarten teacher told us that because of seeing him deal with problems and overcome difficulties every day she decided to be open about her having Multiple Sclerosis. Evan has made an impact on a lot of lives. Because of him my older children are more accepting of kids with special needs. They will gladly tell their friends and strangers what having Down Syndrome means. They will also ask you not to use the “R” word around our family. Yes, things are hard sometimes but just like any child we get through our phases and go on with life. We have screamed and yelled with joy when he goes on the potty. I have had tears stream down my face when he learned to twirl spaghetti. Hearing Mommy come out of his mouth was one of the greatest moments of my life. I will never forget the shirt I got from the EFMP program of San Diego (which I still have packed away) which reads, “All Children Are Special.” I agree! I have seen so many things these past six years that makes me realize how I took for granted the small things in life. Now I learn to appreciate things a little more.

I can still remember saying “why me” when he was born. Now, I simply say “why not?”