We were married in June of 2004. We had our first child on December 28, 2006, we named her Layla. She lights up our world every day. She is an awesome kid and great big sister.
We decided in January of 2011 we were ready for another child.
On December 17, 2011 we welcomed another baby girl into our family. She was beautiful like her sister. She came in a rush.
With a whole room worth of admirers ogling over baby Lila, I quietly said to the nurse, “I’m not trying to be forward, but she looks like she has Down syndrome.” At that point the nurse said to me, "Well, she has some characteristics of it, I will tell you what they are when everyone leaves." So, there I sat, terrified. I couldn’t even tell my husband because the room was full.
When everyone left to go to lunch, the nurse came in. She showed us Lila’s eye shape, her simian crease, the space between her toes, her small head. She told us that she didn’t have all of the physical characteristics, but she had some. She left, we cried.
We cried as if the world was ending. Why? We had no idea what to expect. We didn’t know anyone with Down syndrome. Where was the baby we expected? We didn’t sign up for this. It wasn’t part of the plan. After the sadness, we began to get educated quickly. We thought, “Okay, Down syndrome, we can handle this..just as long as she is healthy.” They told us her heart sounded good. We were relieved.
However, an echocardiogram on the second day in the hospital said otherwise. She has an AV Canal defect. Surgery at 3 months old. Sadness and fear all over again.
So, what do we do with all of this new information? Early intervention, therapy, possible eye problems and hearing problems, heart defects, low muscle tone; all these new things I had never even thought of.
Well, we are on a journey we didn’t plan to take. But, I didn’t get to choose the plan. So, I’m just going to go with it. I’m going to love these little girls with all I have. I’m going to give Lila everything I can. I am going to be the best mother I can be and set no limits for her. And I’m going to share her story with the world. Thank you for visiting our blog, we hope that you enjoy our story.
Although I don't know you personally, I know you by proxy, Lila couldn't have been born into a better family. You will make this journey with its highs and low with God holding your hand and walking beside you. Also along that journey you will have many family members and friends that love and support you, Chase, Layla and Lila. You will be good at this.
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