Meriah Nichols Talks About Disability Meriah Nichols

This was originally published on September 7, 2012. It's a personal post on strength, love and courage.



You can listen to me read this post by clicking the player below, or on my podcast on Spotify or iTunes.











Maya Angelou once said that courage is the most important virtue, because without it, we wouldn't be able to consistently practice the others. I've always agreed with that, because it can be hard to be kind. It can be hard to be forgiving, hard to summon the love sometimes.



In The Gifts of Imperfection, Brene Brown reminded us that the root of the word courage is cor - the Latin word for heart. I've thought about that a lot, about how courage is really something that goes deeper and beyond bravery, waving a sword around on a battlefield or something like that. Courage is heart-based. And heart based means it's central to who we fundamentally are, central to our physical and spiritual lives. You can live without your brain. You can't live without your heart.



Love, to me, seems like blood. It's the blood that keeps the system working. It's the energy behind movement, the Force from Star Wars, it's the link between the brain and heart, the connection between us all on the deepest level possible.



I've thought about this a lot, as choosing to keep my daughter after an amniocentesis revealed she would be coming with Down syndrome, was difficult. I am pro-choice, and I have disabilities: I know how hard it can be to navigate a world that wasn't built for you. I didn't know if choosing to bring her into the world was the right thing to do.



And I was scared.



I've been scared, so scared.



Scared to have her. Scared to mess up. Scared to make the wrong choices and alter someone else's life in radical, negative ways. Scared of not being able to hear, of my neurodivergence and how my disabilities might make parenting even more difficult. Scared of being unable to provide for my family. Scared of poverty. Scared of bad things happening to my child, to my children.



Lao Tzu said that being deeply loved by someone gives you strength, while loving someone deeply gives you courage.



The love that my kids have blessed me with has been the mojo - the moxie! - that I've sustained myself when I'm too tired, too weak, when my brain feels paralyzed or whatever I am going through. Their love quite literally, as Lao Tzu says, gives me strength.







My love for them comes from my heart, the source of courage.



It's an interesting thing to feel this subtle difference between the strength received from being loved by them, and the courage I am able to pull up through dint of my love for them.







Read more in my book, the first 4 Years with Moxie -











4 Years: Essays With a Little Moxie





$5




Meriah's essays from the first 4 years of living with Moxie: Down syndrome, disability, ableism and more. 142 pages of essays, original artwork and photographs. 












Buy Now

This was originally published on March 6, 2013 It is an account of the time that I was pregnant with Moxie. Please be aware this post discusses violence, sexual abuse and abortion.



You can listen to me read this post by clicking the player below, or on my podcast on Spotify or iTunes.







I.







The beginning of my pregnancy with Moxie feels jumbled, as I recollect it now, some 3 years later.



It’s a blur of happenings, events moving swiftly upon each other like quick waves that peak in a tsunami. The blur may be due to the events themselves or may be to the way my mind works – I am neurodivergent. I also rammed my head into the windshield of a car when I was 4 years old. Memories for me often shape themselves in unusual ways.



Like the day that we went to see our daughter for the first time.



I remember being in a black short dress with pirate sleeves that was from H&M, with black flared yoga pants. I liked that dress. I remember wanting to wear cherry red lipstick and not having any. I remember I wore my Earth moonboots and that Mikey didn’t like them. I remember that we passed a moss green Nissan Cube on the way there. I remember the weather was crisp, dry and clear. I think I was about 10 weeks pregnant. I know I was 36 years old (I just did the math). I also know that I was pregnant after just having had a second trimester miscarriage.



We were on our way to the special clinic, the one where they send “higher risk” pregnancies to be examined. Once there, in the dim room with the brightness of the ultrasound machine in front of us, my belly exposed with glistening gel slathered on, we saw the blinking of our baby’s heart, knew she was alive and for that, were happy. But we knew that the long pause and the lack of chatter from the technician signaled a problem.



She left, and returned with the very same perinatologist who had told me that my last child had died. My heart sank as I saw him and I blurted out something along the lines of, “but the baby is alive! I know it! I can see the heart beating!”



He nodded. Yes, our baby was alive but there were problems. He showed us the line of her skin and the line of her body: they were clearly separated. She had a condition called diffuse fetal hydrops, in which her skin was completely separated from her body, with fluid lying between the two. She had heart holes. She was unlikely to make it to term. “0%” chance of survival, he gave her.  He suggested that we have an amniocentesis before she died to find out the cause of the hydrops – not necessarily for her as she was clearly beyond saving, he said – but for future pregnancies.



Numb, and with aching hearts, we consented and returned a few weeks later for the test.



II.







The amniocentesis revealed the presence of an extra chromosome. It also revealed that the baby was a girl. And miraculously – her diffuse fetal hydrops had completely resolved itself.



Despite being strongly encouraged to terminate her life on account of the Down syndrome, we chose to keep her.



Perhaps I should be more honest here: my husband chose to keep her. My husband was adamant about keeping her, saying that we needed to “play with the cards we are given.”



Continuing in this vein of honesty, I am not sure I would have kept her, had I not been with him.



Having grown up deaf, with brain injury and with my auditory processing disorder – not to mention with scars all over my face, I know what it’s like to grow up with a disability. I know what it’s like to be excluded, mocked, and outcast. I know what it’s like to literally have stones thrown at you, because you are different, an “other”. I have a chip in my front tooth from a time that I fought back, but the (much larger) boy was wearing a ring when he punched me in the mouth.



I have been abused. I have been raped. And I am the norm in this: statistics clearly show that up t

This is a personal post that wraps up the first part, Almost 50







Listen to me read this by clicking the player below:





Almost 50, Part 2: Details



You know what bothers me about the post I just sent your way, “Almost 50”? It bothers me that I was talking about real things in a vague way. Time passing faster. Be here now. That stuff.




I want to add more detail to make those real statements less vague.





In 2022 a few things happened: I completed my second master’s degree, this one in counseling psychology, and was headed to the world of full time work (outside the house and for someone else) again. I had also realized that I am on the Autism spectrum myself, with ADHD. In 2022, I was ushering my oldest son in to high school (- can we just sit on that for minute?! HIGH SCHOOL!!!) with his 504 in place and was going through many of the 3am panic-wake-ups at the thought of my daughter entering middle school next year (- MIDDLE SCHOOL!!). In there, I was also trying to figure out what is going on with my youngest son, who is currently in speech therapy for his speech differences. I didn’t know if he’s hearing impaired or has an auditory processing disorder… or what? So there was that.





In between these things, my oldest son morphed into a REAL TEENAGER. I won’t get into the details but suffice to say that a month and a half were completely swallowed by all the things that were going on with him. Gulp. Swish. That time: Gone.





Meanwhile, I was in a job search, remember? On a large island with very limited opportunities. Ha.





While I love the private counseling that I do, and I love this blog and the freelance work, I have missed being a part of a team. I miss working with other people in real life, miss the human connection. I also miss economic stability and the greater financial security.





I don’t think that can happen now, though. I don’t think I can work outside the house in something full time.





That’s where I was vague in the ‘time passing faster’ and ‘be here now’. I see these kids of mine growing so fast, and needing me right here, right now. I need to drive them to this place or that, check in on this or that, organize something or other, and I have no idea how I would make that happen if I was working a regular full-time job.





Added to that, my neurodivergence and my hearing.





I’m trying to get a handle on the 4 million projects I take on, all the creative explosions that plop out of me. I’m trying to feel more grounded in this time-space reality that is moving so quickly and use my time here in a way that will help me become the person that I would like to be when I die. My hearing doesn’t help – focusing on what people say to me can be exhausting the listening fatigue is real. I don’t know if I can realistically handle that AND the full-time parenting that I do AND supporting my family.





I think turning 50 this year for me is about taking stock of the decisions that I need to make with the time that I have. What are my bottom-line priorities? What is my “prime directive”?





Knowing what I’m working with now – my ADHD/Autism –and hearing, it’s actually easier, because I can recognize what I’m doing and pull myself back. I can create systems for myself that are game changers. I LOVE getting older, knowing this. I LOVE knowing that the way my mind functions is perfectly fine, all of this has a reason and there are simple ways forward. This knowledge helps mitigate some of the absolute agony of ADHD and the fatigue I can feel when the hearing gets to be too much.





“Time passing faster” and “be here now” also applies to my love life. I think it would be nice to be in a relationship again. But I can’t do that with all the things that have been going on with my kids and my ADHD. I can’t focus on that many things at once, I’ll get derailed and it takes too long to get b