I will never forgot the day. A day that is forever engraved into my memory.
During our hospital stays, there were limited moments I could hold Bernadette. It was always complicated to hold her. It required getting a nurse to put her in my arms because of her many lines and and leads. It wasn’t as easy as picking up your baby and snuggling at any given moment.
It would also mean that I was content for awhile. It had to work around my pumping schedule. I had to make sure I had used the bathroom, my stomach was full and I didn’t need to use my hands for anything other than cradling her.
It was one of those moments. That day in particular, we had a nurse that was more difficult. He didn’t like attending to us. He would come in occasionally to take her necessary vitals and would leave for long periods of time unless her monitors called for his immediate attention.
He had lectured me about not wearing my Fitbit. A fact no other nurse had mentioned previously, and we had been there for weeks already.
I had finally managed to get everything lined up, took my Fitbit off and tracked him down to get her in my arms. We sat snuggled in the chair that faced her isolate listening to the hum of her high flow oxygen. Pillows helped support my arms and her leads and lines were tucked around us and precariously clipped to my shirt.
We had just settled in.
The ICN that day was busy. There were babies needing attention and luckily for us, her team had found the right balance between IV meds and oxygen levels that she was considered stable. I liked those days. Less poking and prodding. More quiet. Alarms would still sound often, but I had become comfortable with reading the monitor to know she wasn’t in any emergent distress.
What happened next is probably not what you would expect. I didn’t anyway.
I could hear commotion from my somewhat comfy spot. I looked around but didn’t see anything alarming. I could hear nurses talking, well their volume anyway. I couldn’t make out the words.
In a huff, a nurse slammed down a phone. I turned my head. In a loud voice, her words that followed pierced my heart. In her outburst she shouted, “That is so retarded!”
My heart raced. I looked around and immediately heard shushing sounds.
But it was too late.
Silence followed. I wanted to burst out of the room and face the woman who had just offended my heart. I wanted her to see the piercing pain that word caused.
Hot tears streamed down my face as I looked into the innocent blue eyes of my beautiful red headed baby. So little. So fresh.
It was in that moment I knew my heart had changed. From the moment she was born really. There was a new sensitivity there.
Unfortunately, it wouldn’t be the last time I would hear that word.
I know there has been a lot of hurt in the Down syndrome community in regards to that word. And it is a deep hurt. I don’t want to give any more publicity to who and what has been said. There has been plenty. And there have been a lot of moms in this community who have written beautiful articles on the matter.
I think it’s important to realize that although in some areas it seems like there is forward progress being made, it’s important to see how far we still need to go.
The “r” word is offensive. It’s hurtful. Making fun of people who are differently abled should never be tolerated.
I know it can come from a place of ignorance, a lack of understanding, a place of discomfort.
But what saddens my heart has been all of the hate that has come from all of this. The bullying. The pride. The arrogance.
Really though, one of the biggest most impactful things I can do as a mom who loves my daughter with Down syndrome, is share her with those around us. Celebrate her.
We have so far to go. We can join together, take a stand, and shout their worth from the highest of mountaintops.