I wrapped a blanket around the light to keep the brightness away, and a sense of normalcy.

As we arrived home, a technician waited for us at the door. She was ready to show us how to use the billi blanket. I had not even walked inside my house, and the large piece of equipment confirmed the fact that my life had changed. I would go inside my house a different mom, with a different child. The dreams I had of coming home with a newborn baby were replaced by tubes, lights, and pumps.

My mom and Ellie greeted us at the door. Excited to have us come home, and excited to see Nichole. The technician and her equipment felt intrusive. They did not belong. Just like Down syndrome.

If Nichole did not have Down syndrome, this wouldn’t be happening.

While my mom and Ellie settled in the family room to admire Nichole, Andy and I were instructed on how to use the billi blanket. Nichole had to wear it at all times, except for baths and diaper changes.  She would be attached to this machine. A 10-foot chord was all we had to move around. I asked the technician if she could show us how to do it on Nichole, but she did not feel comfortable handling our baby. When she mentioned how babies slept on their stomach, and I questioned if this was because of the billi blanket, she readily admitted she knew nothing about babies.

Great. The woman teaching me how to use equipment for my baby knows nothing about babies.

Later that evening, Andy left for a youth event. The missionaries from Mexico we had worked with were visiting, and there was a bonfire planned for them. I assured Andy I would be fine. My mom would help me with the girls, and he needed a break.

The evening went fast. Nichole slept most of the time, which allowed me to spend time with my 2 year old. Once Ellie was in bed, I found myself with the freedom to be alone for the first time since Nichole had been born. I could go to my room and spend some alone time. I hesitated at the door. As much as I wanted to go in and close the door, I felt compelled to go downstairs and look at Ellie’s baby book.

My mom was in our black and white kitchen—her color scheme idea—doing dishes. In the dining room, I sat on the floor by the small bookshelf and pulled out the white scrapbook. The first page was a beautiful picture of Ellie as a sleeping newborn. I stared at it, picturing Nichole. With their eyes closed, I could see their similarity. I began flipping through the pages. Searching, Yearning. Wanting to find the resemblance between my 2 girls. However, I could not find it. It wasn’t there. My newborn baby was different. She had Down syndrome.

I felt a lump in my throat. The flood of emotions was pushing its way up, wanting to come out. I closed the book and slowly made my way into the family room. Nichole sleeping in the corner attached to her light and wrapped in a soft blanket.

“What are you doing?” my mom asked from the kitchen.

“I am just going to lie down” I answered, “I am really tired.”

I lay on the couch, facing the back of the sofa. Trying to hide my face from my mother. Too afraid to speak another word.

My mom, however, had made her way into the room and sat by my feet. She could not see my face. She gently placed her hand on my back.

“Ellen…are you okay?”

“Oh mom…”

I was done. I could not pretend any longer. I could not hold back the bitter tears that had taken my heart. I let out a cry and began to weep.

My mother, somehow, scooped me into her arms.

“Oh honey,” she said, “It was about time you cried. You cry all you need I am right here.”

In my mother’s arms I bawled. Taller than my mom, yet somehow feeling so small. Her arms around me, her hands stroking my hair and kissing my head tenderly as she cried with me. Her arms. The safe arms of my mother. The arms I had felt as a child. I wanted to be that child once more. I wanted to be in a safe place where she was the grown up. Where she was the one that had to figure things out, where she was the one that needed to be strong. I cried, and I cried, and I cried. And she held me. She held me for a long time.

***

It is Down syndrome awareness month, so I am sharing our story of finding out our daughter had Down syndrome and the first few weeks of her life. If you missed my last post, make sure you read: My baby is broken.

Next post: A parent’s unconditional love, or more than I can handle?

If you just joined in, make sure to read the first post introducing you to this journey: The road less traveled.