OTHERS

Unexpected Journey with Iris & Down syndrome

Down Syndrome

Iris Love

Birth Story

After I got pregnant, I envisioned my little baby for a million times, she would be a beautiful mix baby, healthy, and smart. My labor was short, three hours natural labor without any medical needs. The whole day I felt dizzy and happy at the same time. Holding my baby in my arms felt surreal. My life changed suddenly on the third day. During Iris’s pediatric visit, her bilirubin was high and we were told to go to the NICU immediately. The pediatrician also asked if we did genetic testing. At that time, I didn’t know what it meant. I asked my husband, he told me not to worry about it. We drove to the hospital and handed our precious baby to the doctors and nurses. They put all the tubes on her, I cried. Iris was screaming, mom could not do anything to help her.  Later in the hospital, while watching her under the blue light, the nurse practitioner asked us again for taking her blood and doing the genetic testing. He started to tell us Iris's physical features indicate she has Down Syndrome; low nose bridge, almond shaped eyes, low muscle tone and etc. I was trembling and weeping after receiving this news. My husband held me tightly and reassured me that Iris was just fine. They took her blood the next day and sent to the genetic testing company.  

About a week later, they told us that they didn’t draw enough blood. We decided not to do the blood draw right away, since her hands were bruised from all the needles at the hospital. However, I worried even more. I could not focus on my newborn. Iris always looked at me helplessly with her big eyes, and she seemed to know everything. After Iris turned two months, we decided to draw the blood again, after the genetic test came back positive, I felt all my happiness of being a mom had been drained away and my life was over. In my eyes, she was no longer my baby girl, but a diagnosis. I started my self-pity party, why did this happen to me? Why did it have to be my daughter? My husband and I are young and healthy and Down Syndrome had never crossed our minds. All I thought about was how much trouble she was going to bring us and how others will react when I told them my newborn has Down Syndrome.

Transition

I did not dwell in sadness for too long. My maternal instinct let me accept my daughter for who she is. As I hold her in my arms, her little squishy pumpkin face lies on my chest and her hands hold me tightly, as if she does not want me to leave. I wish time could stop and I could protect her forever. Gradually, I found out that she was just the baby of my imaginations. Iris’ eyes take after her father, shining dark buffalo eyes, and I wonder about all the stories in those eyes. Her little button nose, straight hair that stands against gravity, and a small cherry mouth. I can stare at her cute face all day; she likes to suck her little tongue while sleeping. She likes to hold her arms up and wants to be held all the time. She kicks her legs, lifts her head and shoulders up high. She exercises so hard to achieve her milestones. I feel she is getting stronger and prettier everyday. In the most difficult times of my life, I have my loving family. My husband is always there for me and he is the strongest man to console me thousands of times a day. I know it is also hard for him to acknowledge that his first daughter has Trisomy 21. One night, he cried in front of me. It was the first time I saw him cry this hard since we have been together. He asked me what he could do to make me feel better and felt that there was nothing. He said I was unfair to our baby, which reminded me that I have to be strong for her since I am a mom now. My parents play a significant part in our journey. I know in my parents’ heart, she is no different than a typical baby. Iris is just perfect. They love to watch her, play with her, and celebrate every little achievement. My in laws also love her like none other. Their eyes light up when they see Iris. Iris is the first grandkid on both sides of the family. I used to think of myself as a failure because of her extra chromosome. I keep reminding myself to get out of my sadness and try my best to be a good mom with unconditional love.   Making connections with other special needs mothers in town and through social media is another way to walk away from sadness. We can be friends through our shared experiences. They understand me, because at one point in their lives, they felt the same as me. We share the same grief, hopelessness, and regret. When they talk about their kids, they are proud and I see joy on their faces. These kids bring much happiness to their families, rather than trouble and embarrassment. They assured me everything would be fine and my baby is going to have her own life. In their stories, the kids with extra chromosome are loving, full of personalities, love hugs, have their talents, and need recognition from others. Chatting with them, I feel proud to be part of this special needs mothers’ community. I also feel that if others can raise a special needs kid, why can’t I? I can be just as strong as other mothers.

Words to Other Parents

Acknowledging that my newborn has extra chromosome 21 is the hardest thing I have ever experienced in my life and looking into the future is even harder. Every now and then, I am still falling into the same trap and wish the extra chromosome could disappear. However, I know it is the extra little things that make Iris who she is. I have changed quiet lot during these short months. I am no longer the spoiled little girl, but a strong woman. To be honest, I have never been an advocate in my life until the birth of my daughter. The birth of Iris gave me a mission in life. I want to share my journey with new parents who have a “little extra” in their lives. It is okay to be sad, but do not stay there too long. Lots of things happened not as plan, but maybe there is actually no plan in life. We have to experience life as it comes, and to the fullest. To be a mother, I am shocked by my own ability. I know my journey just began and there are many challenges waiting for me. One will never know how strong one can be and with the power of love one can certainly do anything.

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