When you learn that your precious baby has a developmental disability, it is a jarring experience. It took me several months to say that my perfect Evie had a disability. My daughter... my beautiful girl, has a disability. I can't tell you what day it was that it really hit me. I can tell you where I was though. I was at work. Sitting in my office in a meeting with other therapists learning about how to help our clients get more financial coverage for mental health treatment. Someone made a comment about disabilities, and I realized in that moment that Evie has a disability. I had to excuse myself for a few minutes and cry. She was several months old by this point. I knew it on a real level, but I don't think it really hit me until that moment.
When Evie was in the NICU we received her diagnosis. Even before the official diagnosis came in, all of the specialists talked about what we could expect. Rob and I are researchers. We like to know things well in advance and have an idea of what we are going to encounter or should expect in new situations. Evie's diagnosis was no different. I found myself searching Google for Down Syndrome within a few days of arriving at the NICU. I didn't allow myself to do that for long. It was brutal. It was terrifying. Rob did it too and had the same outcome. The doctors and nurses we spoke to shared that Down Syndrome has a spectrum. Nothing defined like levels or categories, but the degree to which a person is affected can vary greatly. They made sure we understood that there is no way to know in what areas Evie might struggle or the ways she might shine. One nurse gave us the best advice I've heard to this day, "Treat her like any other baby."
Rob and I decided very early on that we would let Evie show us who she was, what she needed, and what she wanted. We would roll with those and find the help she needed. We would love her and raise her and support her interests and goals just like we do for our son. We realized that we might have to find ways around her challenges, but our girl would live her best life. We'd make sure of it.
There were so many positive, realistic, and wonderful people who we encountered at the NICU. There were also some who seemed to focus only on the worst, who seemed to have so little hope. Perhaps they were jaded, traumatized, or in a mode of self-protection. I know first hand how hard it can be to experience the feeling of resignation when it feels like all you get to deliver is difficult news. Looking back now, that part of me feels compassion towards them. In that season, I was a terrified mama who had a hard time seeing that in someone who was supposed to be there to help me. Their negativity raked across my fear as if it was a bunch of soggy fall leaves plastered to the concrete.
There was a speech language pathologist who worked with us regarding feeding and swallowing. There were two that we saw, but one of them stands out. I remember her telling me that if Evie dozed off while nursing or bottle feeding, she was silently aspirating. If she wiggled, she was silently aspirating. If her eyes were open she was silently aspirating. Basically, all I heard was "silently aspirating" which translated to "you're going to kill your baby girl." Despite all of this, I worked so hard to remember what they taught me and to do everything they said to do to keep her safe and help her learn to drink. I had no connection to instincts and didn't trust myself. That inner trauma demon was still so loud. Somewhere in all of that mess, Evie found a way to let me know "Mama I've got this." She would look me in the eyes, and though I know infants don't see clearly at that age, I swear to you she could see right into my soul. Besides my complete love for her, those are the moments that got me through the day.
The same SLP would tell us repeatedly of Evie's "low tone". Low muscle tone is a characteristic of Down Syndrome. We were told Evie wouldn't be able to hold her head up unsupported, roll over, push up, crawl, walk or pretty much anything else for possiblly several months to years. She may not be able to eat on her own and may need to be fed either thickened liquids or via an NG or G-tube for a long time. She also had mild pulmonary hypertension so she may have to be on oxygen for a long time. Rob and I started to say that Evie heard this this word never and replied, "Hold my milk!"
We weren't out of the NICU before Evie was holding her head up, unsupported, for seconds at a time. We weren't home from the NICU but for few weeks before our girl started rolling over. We had a feeding and swallowing appointment in May, and told them about that milestone. The SLP repeatedly said she couldn't have done that due to her "low tone." Thankfully I take videos and photos of everything, and showed them the video of her rolling over weeks earlier. She had nothing to say but a forced, "wow." The fact that I had to prove it to that SLP crawled all over me. Rob couldn't stand her. We hated going to those appointments, because it always seemed like we went there to be told what she can't do. I wish we'd asked for a reassignment, but we were new to this and just trying to get through. Hindsight, am I right?
"Hold my milk" became a battle cry of sorts. Evie was going to do what she wanted. She was going to find a way. I think that battle cry was our way of reminding ourselves that she will get there. She will achieve her milestones on Evie-time. We learned in those moments that Evie time was okay. It was good. It was beautiful.
