Dreams
Thoughts on love, disability, and parenthood
Dear humans:
I am sitting near the window at a coffee shop, the remains of my Earl Grey beside me. Alex took the day off to watch Phoebe, which means I have both hands free for more than 45 min. Before parenthood, I did not appreciate just how rare and beautiful a gift this is. Also before parenthood, I did not appreciate how rare and beautiful a gift spending time with a baby is. It is, as my friend Beth always says, a both/and.
As is the case with most of my writing these days, I started writing the below piece via dictation, while pushing a stroller up Mt. Tabor. Part of me always feel silly doing this, judging myself for “not being fully present.” Another part remembers that Mary Oliver always brought her notebook on her morning walks, ready for when she was struck with inspiration (and we all know how that turned out!).
I am finding that inspiration strikes a lot these days; it’s the finished product that comes slower. (Isn’t that always the case?) But this morning, after nearly a month of this piece hanging in purgatory, I am calling it finished. It’s about love (as usual), pregnancy, disability, and parenthood. Whatever your relationship with these things, I hope you enjoy it.
Now if you’ll excuse me, I have a baby to go snuggle. Maybe I’ll see you in April? Until then, Happy Spring, and take good care of your hearts.
Love,
Abby
Dreams
I had a dream that Phoebe started talking and lost her baby nose. She had become skinny, her hair, curly and blonde, and her eyes a light blue. She was not even three months old, still needed to be carried everywhere, but she spoke in full sentences and had the presence of a grounded adult. I should have been proud, but in my dream, my first thought was, “Oh no, she is no longer cute.”
A moment later, in the dream, I noticed her spine. At the base of her neck, her spine jutted out aggressively, her shoulders scrunched up toward her ears. Even though this was the first time I had noticed this, I could tell her spine was fused this way. There was a name for the condition, and while I don’t remember it now, I knew it in the dream. I knew that it was irreversible, and that it would prevent Phoebe from growing any taller. Forever, she would be the size of a skinny baby, with a fused spine, crimped neck and a big nose.
When I woke up, I was ashamed that my first thought in the dream was about how she looked. I was ashamed that I could not focus on the fact that, despite her stiff neck and awkward posture, she was delightfully happy, kind, and curious. She did not seem bothered that she could not turn her head, or stretch her arms alongside her ears. She did not know or care that her nose was no longer a tiny, adorable button. I was ashamed that I could not enjoy who she was becoming, and who she already was.
I remember when I was 12 weeks pregnant, awaiting the results of our genetic test. The test would tell us if there were any chromosomal abnormalities indicating Down, Edwards, or Patau syndrome. Down syndrome, by far the most common of the three, varies widely in how it presents. Some people with DS live independently and hold traditional jobs; others rely on full time caregivers for their whole lives. While the life expectancy of those with DS is shorter than average, many go on to live into their 60s. Those born with Edwards or Patau syndrome on the other hand usually do not survive past their first year. I could not imagine: Twelve months to hold and love a baby, knowing she will die.
I remember being terrified, not just because I feared a positive result, but because I feared what my response would be if I got one. Would I consider terminating the pregnancy? Would I dread the birth? Would I raise the child, pretending to be happy on the outside, but cry in secret? Or would I still be delighted as ever to bring a child into the world, even when it meant her life and my life would be far more difficult than I had imagined?
It wasn’t the first time I had asked myself how I would feel, raising a child with special needs. Years before I got pregnant, I decided that if I was not prepared to have a child with a disability, then I was not prepared to have a child (not that anyone is ever fully prepared for any of it). It also dawned on me that I technically had a disability, or four.
Technically, spinal fusion, generalized anxiety disorder, ADHD, and complex PTSD – all of which I have – could all be considered disabilities. There is no prenatal screening for any of these conditions, and none of them developed until I was in my mid-teens. It wasn’t until I was well into my 30s that I learned I had been diagnosed with generalized anxiety disorder and C-PTSD, and it wasn’t until last year, at 38, that I received an ADHD diagnosis. I still have a hard time declaring that I have a disability, let alone four. It’s not so much that I feel stigmatized; I simply don’t feel “disabled enough.” Maybe I’m not. Or maybe it just depends on the context.
Some mundane activities, like sitting upright in the backseat of a hatchback, or removing a Diva Cup, are quite impossible with my fused spine. Other things, like practicing yoga or doing a Turkish Getup, simply require modifications.
When I cannot find my wallet, or my husband leaves balled-up dish towels on the counter, it’s not that my anxiety can’t handle it; I just need to employ a few more coping strategies than some people do.
Everyday tasks, like replying to a text, or being on time for an appointment, are entirely possible with ADHD; I just need to give myself more time and fewer distractions.
And relationships, especially intimate ones, are certainly not hopeless with C-PTSD; I only need plenty of communication, patience, and time to build trust. (Weird, right?!)
When I consider my diagnoses, I wonder if they need to be “diagnoses” at all. Don’t we all simply fall somewhere along the spectrum of “human”? Aren’t we all unique, with experiences, hearts, and brains distinctly our own? Then again, isn’t there something validating, affirming, even relieving, to know that there are other people in the world with the same diagnosis, having similar experiences? Yes, we are all so different, and also, we are so much the same.
Sometimes when I change Phoebe’s diaper, I wonder if I will always have to change her diapers. I consider the fact that she might never learn to roll over, to walk, to speak in full sentences. I remind myself that this is a distinct possibility, because it is always a possibility. I am comforted that my first thought is that it will be okay. I love her so much that I will do anything.
I can see why parents become obsessed with milestones. I do not want to be one of those parents, but of course, it’s hard not to think about them. Comparison, as they say, is the thief of joy. It is also how we learn. Without comparison, we might never understand people’s differences, or appreciate the unique.
While I know I cannot control Phoebe’s worldly experience, I still want the absolute best for her; I also want to believe I did everything right. I want her life to be as joyful and easy as it can be; I also want that for me. I want to look at Phoebe and feel the immense love and connection I have for her, always; I also want everyone who meets her to feel the same.
But the fact is, at some point, she will experience pain, grief, and loss. She will, at some point, get hurt. Sometimes, it will not be my fault; other times, it will. Some people will meet her and decide they do not like her, that they hate her, even. There may even be times when I don’t especially like her, and times when she hates me. I cannot imagine these things now, but I know they will happen.
The only comfort, I’m learning, is that I will still love her. Even when I am scared for her, even when she is embarrassed by me, and even when we cannot stand each other, I know, deep in my bones: I will do anything to show her that I love her.
Upcoming events w/ Abby:
