Our shining star baby girl, would we be special needs parents for a second time?

Tuesday night, December 15, I sat with our beautiful daughter and read her a book before bed. As I started to read, the tears hit my cheek. I snuggled our last baby, our little girl, a little closer. I choked through each word of the book. Her in her two piece pajamas, listening to the children’s story, soaking up the tears falling from my check. She snuggled in, not noticing the tears or my shaky voice.

I knew what we were facing the next day, looming in the air a second diagnosis day.

This tiny baby had already given me so much.

Nora was born into a mountain of worry. From the minute we found out our second baby was coming, the thoughts crept in. Would we all walk the same path? Would the emergency arise?

Her brother came into the world with an emergency hospital stay, born at 33 weeks and 4 days. He had a long NICU stay and was such a strong fighter. We spent our first month surrounded by nurses, beeping machines, doctor’s visits, and feeding tubes. I watched my firstborn sleep behind the safety of NICU glass as I walked into motherhood for the first time. When he was born, I was in a fog of pain medication, struggling myself to survive, and he was whisked into the arms of strangers. Something that still weighs heavy on my heart.

Our daughter came into this world with a scheduled C-section. I was comforted through out the pregnancy by regular ultrasounds where I got to see her beautiful face over and over. A normal pregnancy, I remember her being born, her first cry, and holding her shortly after birth. She latched, and I took her to a regular room. A birth experience I longed for.

The first night didn’t last long as she too was whisked away to the NICU, and I felt the old worry surface. The NICU cords everywhere the first bath done by a nurse without us there. My heart was wounded slightly by our second NICU stay. It didn’t last long, and we took our little girl home on Christmas Day.

We did not have an autism diagnosis for her brother when we brought her home, but the cloud of what was coming was there. We had early intervention and school discussions about his development.

From the minute I held her in my arms, her light filled the room. She had a way of taking in the world that was unusual for a baby. She looked into my eyes often, smiled often, and the closeness between us was clear.

After Nixon’s diagnosis, the worry shifted. Would she talk, would she make eye contact and answer to her name. Would we again go through the forms marking off all the cants?

Nora smiled, laughed, sat up, crawled, walked, and spoke her first words on time. She was a happy baby most of the time, but it was like a fire hose of emotion in your face when she was upset. We often laughed because it was so fierce. Her wants and desires were voiced loud and proud.

I watched her, knowing the signs to look for, and at each milestone, the fear lessened.

Around 18 months, we started to see a change. Nora seemed to shift. She started eating cardboard, and the worry got louder. We talked about the fear with each other late at night and discussed it with her pediatrician. She began having more noticeable issues falling asleep and staying asleep. They found an iron deficiency, and we thought a quick iron supplement would help. It did for a short time, and the cardboard eating stopped.

I thought, what if, what if this is something to worry about.

Looking back, I think for the second time, I missed the signs as they started to form. Maybe I didn’t want to see what was coming, perhaps it came on faster than I could allow my mind to process, or maybe my heart wouldn’t let my mind process what was happening.

She lost her words, and there was a harsh silence. We set up an evaluation with early intervention, and they confirmed a speech delay.

I felt the reality that I needed to watch closely as I fought the fear.

Would we be special needs parents times two?

Would we discover our sweet Nora carried the same medical diagnosis as her brother?

I began to learn as much as I could about girls on the spectrum and about how a diagnosis might look different for her. We watched and tallied what was appearing before our eyes.

The guilt that I had failed my child flowed to the surface. How could I have not known a second time? We were so connected, did I choose not to see what was there?

We scheduled an autism evaluation. As we walked into that appointment, I looked closely at her. In an adorable hand-stitched sweater, her brown hair tucked into the back of it. I noticed the sun on her skin. Her brown eyes were looking ahead, and her small hand was holding the back of my jacket.

I took in the moment, knowing we might walk out as special needs parents for the second time.

The words hung in the air, autism spectrum disorder.

I walked out, feeling like the world punched me in the face. I wasn’t blindsided this time, like with Nixon’s diagnosis. I walked in, knowing we might walk out with a diagnosis. I was hoping for a second time we wouldn’t.

It has been just as hard. I am walking around in a fog. How are we going to do this, and just why?

My heart was opened to a new place when our son came into this world. A box that I didn’t know was there waiting. I didn’t know how I could love another little person as much as him. When our daughter was born, her shining light opened that box even more.

I know I will come out the other side with a new understanding of who she is. I know the love she has already shown me will splash sunshine on this life. I will try my hardest to be the Mother they both need, and I hope I can show them how much love that box holds. I often worry that I can’t be all that they need.

When I see those big brown eyes look up at me, I know we will be ok. That the way she sees me is all the light I need to climb out of the feelings and find myself again. I know she will walk through this world, making her Nora mark. I hope that the world will show both of my beautiful children kindness. I am lucky to be their Mother, and I am glad they can share this special world together.

© 2020, Tabitha. All rights reserved.