I’ve always said everyone has a story. After high school, I would always come back home to tell my mom about the people I was meeting in college and their interesting life stories. Like the girl who became emancipated from her parents when she was only 16, the girl who’s father was in a mental hospital and he escaped and rode off on a bike, or the girl who was a teen mom and gave her baby up for an open adoption at the young age of 15 . After hearing these stories, I realized that my life story has been vanilla flavored, pretty normal and non interesting, until recently. In June 2012, our family welcomed Kelsey into our lives with open arms. We were given some unexpected news shortly after her birth. Kelsey was diagnosed with Achondroplasia, the most common form of dwarfism.
I could tell instantly that something was different. My mom saw her before I did, and she said how different she looked from Annie. This meaning head FULL of black hair, dark skin, different facial structure. I thought the same thing when I saw her face. I was expecting something different, not exactly sure what, but different. I agreed and said, “You’re right! She looks nothing like Annie!” JJ stood by my side. Quiet. Very Quiet.
I saw her again while I was in recovery. She was all bundled up as I nursed her. I was groggy and unable to sit up. I remember her face was swollen and seemed scrunched up. She had a big round forehead and I remember wondering who she got that from. I was in a daze… Did Annie have that forehead? I couldn’t think clearly. After I nursed her, they took her back to the nursery and wheeled me into my hospital room, taking me through the waiting room where all of our friends and family were waiting. They followed us to my room to congratulate us. I remember Kristan showing me a picture of Kelsey that she’d taken through he window of the nursery as they were bathing her. She was naked and laying in the bassinet, a side profile picture. I said to Kristan, “Awww, how cute! She looks like a little dwarf!” It never crossed my mind that she actually could be a dwarf.
The next couple of hours are a blur. Around 5pm, our pediatrician came into the room. I was looking forward to getting this part over with quickly. When Annie was a baby, he came in to tell me that she had an irregular heart beat. How terrifying! I wanted to know that Kelsey had passed her first physical exam with flying colors so we could move on and enjoy her. He stood at the end of my bed. I was with my sister and nephew, JJ had just stepped out for a quick minute. The doctor told us that Kelsey had some dwarf-like characteristics and that he wanted to do further testing. I chuckled. Yes, I chuckled, and told him about the picture my friend had shown me earlier that day. He said that he would read up on Achondroplasia and we would do some testing the next day. Hurriedly, my sister jotted down the diagnosis. JJ walked into the room and the doctor explained it all again. I had no clue what to say or do. I don’t think I even asked any questions.
My sister asked how we were doing. Fine. I couldn’t argue with his diagnosis, I had noted it earlier. The biggest shock was the realization that JJ and I, both average sized people, could make a little person baby. I didn’t know it was possible. More friends arrived, my sister left. I told them that Kelsey was being tested for dwarfism. Their reactions were safe and cautious, “Really?” and that’s all. Looking back, I realize that everyone was just in shock. Thoughts were running through my head as I tried to smile and answer all of the post-delivery questions. Thoughts such as… Kids will make fun of her, I was a mean kid, now this is payback… This is not the sister I prepared Annie for, she will be disappointed… Will Kelsey be okay, will she die… This is not our baby, maybe they mixed her up in the nursery.
At some point, Kelsey came into the room. Everybody was gone and it was just me, JJ, and Kelsey. Hours had gone by since we had heard the news. JJ held the baby and sat on the sofa. He snuggled her so closely and he began to cry. It shocked me, I wasn’t expecting his reaction. I didn’t know what to do or say so I just blurted out the first thing that came to mind, “What’s wrong? You’re just tired, huh?” He nodded, but his eyes were bright red, saddened, and concerned. He is always so strong, I had not anticipated this reaction. He was so frustrated that we had not had any time together and alone all day. He said he wanted some time to think and process this information. I wished I had thought of that earlier, but it just never occurred to me. I don’t remember specfically what happened after that, I just remember that things got real. I couldn’t stop thinking about kids making fun of her. I remember telling JJ, we will not be afraid to say ‘dwarfism.’ She has dwarfism and its okay to talk about it.
We were just so shocked. It never crossed our minds that we might have a child with dwarfism. Cancer, yes. Down Syndrome, yes. Dwarfism, no. Never. After a spinal ultrasound, head ultrasound, and skeletal x-ray, our doctor confirmed the diagnosis of Achondroplasia. My cousins, Becca & Rivers, were visiting us in the hospital when the doctor called with the confirmation. I burst into the hardest tears I’d ever cried. My whole body hurt, I couldn’t breathe. I don’t know why I had been holding on to that one little strand of hope that she didn’t have dwarfism and that he would come back and say he was wrong and she was totally 100% physically perfect. But it all vanished very quickly when we received that call. Becca was so strong saying, “Avie, some things are just beyond our control.” She was right. I had a good cry. I needed to get it out of my system. It’s okay to cry… Our family and friends told us what great parents we are and God chose the best parents for Kelsey. I never wondered why He chose us. I just tried to think of it as an honor that God would see us fit, worthy, and strong enough to take care of our sweet girl.
A-CON-DRO-PLAY-SHA. We all practiced until we could pronounce it correctly.