"Gifts" - My entry...

Ok - here it is...I think I'm happy with it, but we'll see.

I have wanted to write “my” story since I read “Gifts” in the summer of 2007. I have not had the words or the strengths to write this until now.

I got pregnant in July of 2005. In November, I had a positive triple screen test for Down syndrome. There are many false positives with this test. We had an extensive ultrasound where the Dr’s look for 10 markers of Down syndrome. The more markers you have the more likely that your child has Ds. Taegen had one marker. Kyler had zero markers. The Dr’s concluded that I had had a false positive on my test and that we were not going to be having a child with Ds. Fast forward to two weeks before I delivered. I could not stop thinking about Ds. I could not stop thinking about the summer when I was 16 years old and had volunteered at a Special Needs Camp. My assignment was…Marianne, a little girl with Ds. The 3-day camp felt like years. I came out of the camp HATING, really despising this little girl. I seriously did not enjoy her at all. I thought, wouldn’t that be the worst to have a child with Ds. Then Kyler was born. Taegen was born first at 8:09 a.m. on April 1. Kyler was right after at 8:10 a.m. I got to see two little balls of blankets before they were taken to be checked out. When I was wheeled back to my recovery room where my parents were my OB, Dr. Macy, came in with Ryan and said, “We think Kyler has Ds.” I do not remember anything after that.

12 hours later, I finally got to see Kyler in the NICU. All I could see was the Ds. Here I was with my “healthy” baby, Taegen, in my room with me and my other child, Kyler, in the NICU. I had an easy time bonding with Taegen; after all, he needed me. Kyler had plenty of people looking after him that I was needed. Two days after they were born the pediatrician called me in my hospital room. He told me that Kyler was in Heart Failure and that he had two holes in his heart. My in-laws were in the room with me during the call. I hung up, briefly told them what he said and then went to the bathroom where I cried more violently and harder than I ever had or have since. This was not what I asked for. From the bathroom, I called my husband who was at worked and sobbed. Then I called my dad and sobbed. Then I called my mom and sobbed. I felt SO alone. I pulled myself together and went back into the room where my father-in-law said, “Do you need a hug?” I needed a lot more than a hug.

After a bunch of medicines, feeding restrictions, fluid in the lungs, life-flight transfer, aspirating medicine, temperature drops, jaundice…you name it. Kyler finally came home 3 ½ weeks after he was born. I felt like he was intruding on my time and relationship with Taegen. After all, I had had Taegen with me all along. I felt horrible for feeling this way. Thankfully, it did not take too long before I was just as madly in love with Kyler as I was with Taegen. The next few months brought many changes. A new job for my husband, moving across the country without my family, moving again, buying a home. Everything that is asked on a stress test pretty much happened within a few months.

At 7 months, Kyler had open-heart surgery. During the surgery, I was scared but I knew he would be okay. It was not until I saw him after the surgery that I broke down. My baby boy was hooked up to so many different machines with a ventilator and in a coma for a week. I sat day in and day out at the hospital. Feeling alone yet again. When Kyler finally came home after the heart surgery, I was surprised to realize that he still had Down syndrome. Up until this point, my main concern was his Heart. I had not really dealt with the Down syndrome side of things, so now that came. I had to come to accept and deal with the Down syndrome when my child was 8 months old. I still have to deal with it on occasion (more often than I would like to admit).

Having twins where one has Down syndrome is not common at all. It has been a HUGE blessing to have Taegen and Kyler. They compliment each other in ways that are so amazing. Taegen is a great example to Kyler and likewise, Kyler is a great example to Taegen. Kyler has always had a role model to follow and to imitate. This has made Kyler a very “high-functioning” child with Down syndrome. At least I think so.

At the same time, having twins where one has Down syndrome has been incredibly difficult at times. I can see exactly how delayed Kyler is. The differences between to the two of them are so “in my face” (for lack of better words). Disciplining has been extremely difficult.

Many times throughout this process I have felt alone. Not physically because I am surrounded by amazing people, primarily my husband. However, emotionally, nobody understands what I am going through. People with twins say, “I know exactly what it’s like raising twins.” They don’t. People with a child with Down syndrome say, “I know exactly what it’s like raising a child with Down syndrome.” They don’t. Although, I do feel that parents of a child with Ds are more understanding of the fact that having a twin is a great motivator for Kyler. Even my husband does not have to deal with the day in and day out of raising these boys. I am Kyler’s advocate. I take him to all his medical appointments, school appointments, and all other appointments. I would not have it any other way but sometimes it wears on me. Sometimes I hate being a mom. Sometimes I do not know how or what to do for Kyler. Sometimes I feel I could be doing so much more for him. Sometimes I feel down and out but at those times, Kyler or Taegen will, for no reason, give me a hug or kiss and say I love you mom and for some reason, that makes it all worth it. I would not trade Kyler or Taegen for anything in the world. They are my life. They make me who I am.