Life happens every day. There is no “with or without us.” It carries us along on its current whether we fight against it or simply relax and go with the flow.
My mom was holding Emily’s tiny hand, palm up, studying it, and I knew what was going through her mind. She broke from her reverie and looked up at me, “You know. It’s just so hard to believe that there’s anything different about her. She’s so perfect. I have to look at her palm just to make sure.” I brought the infant tub with bath water for Emily and set it on the kitchen table, where our three-year old, Maggie sat coloring, and Serrah, our eighteen-month old was fixing a puzzle. I scooped Emily up from the towel Mom had her wrapped up in on her lap, and deposited her into the little tub, “I know. I’ve caught myself looking at it, and Lyle’s been studying it too,” I took her little hand, glanced at the telltale “simian” crease, and kissed it. That single transverse palm crease, where everyone else has two, was the one concrete tell that there was truly something different about her. There were times that we couldn’t see the Down’s at all. She truly was perfect.
During the week that Mom stayed with us, I felt strong. We needed to be proactive. Social Services was the starting point. Medical assistance due to disability was the precursor for us to get any other agencies involved or programs in place. In order to satisfy them, there had to be a blood test confirming that there was an extra twenty-first chromosome. Having the blood drawn was hell. By the time the medical staff had tried several different methods, Emily had cried until the whisper of a cry she had displayed day to day became naught more than air silently coming out of her tortured red face. The method that finally worked required a butterfly needle through which they seemed to, very slowly, suck the blood from her defeated little vein. That’s when Mama Bear showed up in me, “This is ridiculous. We have to prove that she has Down’s? Look at her. Is there any doubt in YOUR mind?” It wasn’t the nurse’s fault, of course, and she was gracious, “I realize that. She’s adorable, you know. Yes you are, pretty girl. I’m sorry we’re hurting you. We haven’t been very nice to you at all today. I promise, we’re done now, and Mommy can hold you and make it all better.” Kudos to that nurse! She talked TO our girl, rather than around her, as many would in the future.
The test came back, and sure enough, there was that beautiful extra chromosome that made Emily wonderful in a thousand different ways. I took the lab results with me to the county social service agency. After filling out a mountain of paper work, we found ourselves in a waiting room with a chatty little old lady who opened her mouth and stepped right into it, “Oh, is she a mongoloid? I’m so sorry. They’re so loving, you know.” My thought bubble read, “Well, she isn’t from Mongolia. She was born right here in Fargo North Dakota. Her father and I aren’t from Mongolia either. We’re all quite Anglo Saxon. It’s so funny that you would think we were immigrants from Mongolia.” In reality, I smiled and said “Oh, don’t be sorry. This is my daughter, Emily, and she was born with downs syndrome. She’s such a good baby. Isn’t she cute?” She was elderly. She didn’t know better, and there wasn’t anything malicious about her lack of pc.
We went about our lives. We dressed our little girls up and went to church on Sundays. There were people who encountered us, who were uncomfortable, struggling for words. We heard, “I’m sorry” several times. The only answer we had for any of them was a gracious, “Please don’t be.” We weren’t offended. It was a natural reaction, in a way. We had been thrown a curve ball. We were determined to knock it out of the park. People would become more comfortable, and they would eventually see the wonder that was Emily as we saw her.
We found, also, that those ties that bind were, once again, a mighty force in our lives. Lyle’s sister, Laurie and her husband, Tim lived only an hour away, and were there often to love and adore the new baby with us. My aunt, Karen and her daughter, Sherri came to see our Emily and marveled over everything beautiful about her as they would all and any new baby in the family. My cousin, Denise had a little boy who attended my daycare. Her husband, Jared had an aunt and a cousin with Down’s. He talked freely with us about them, often bringing a smile, and sometimes laughter. These people brought meaning to our lives and helped us to celebrate our beautiful new baby. I’m not sure that any of those people know how deeply their acts of love and kindness touched us. I will never forget, and will always be grateful.
Maggie and Serrah were delighted with their baby sister. She was their very own living doll, and they loved everything about her. Emily has never been their sister with Down’s. She’s been their little sister, period. When Serrah was in third grade, a lady came to her class and talked about living with people who have disabilities. She tried to use Emily as an example, “Serrah you know what its like to have a person with a disability in your home.” Serrah, oblivious, responded, “No I don’t.” A little bit flustered, the woman persisted, “But what about your sister, Emily? She has downs syndrome. There must be some challenges for you in your home with her.” A very bewildered Serrah shrugged her shoulders and gave a response that will make me burst with pride until the day I die, “I don’t know. Emily is… She’s Emily.”