By Elena Croy
Trigger warnings: miscarriage, fertility, traumatic event, child abuse
Hope is a rainbow baby. When I try to figure out what part of myself I accessed to advocate so fiercely for her before she was even born, I often explore the purpose of the baby before her, who was gone weeks before developing a heartbeat. All it took was one positive pregnancy test to unlock an area of my soul I hadn’t known existed. I dreamed about this baby with absolute certainty we would meet. I drafted a wish list for what we would need in the apartment and fast forwarded our lives to this baby’s high school graduation and beyond. Life was about to become everything I ever wanted, but my body had other plans.
An entire lifetime imagined was snuffed out in only a few short days when I started to bleed. The only way I could heal was to try to make a new baby, and we did. We made Hope.
We’ve ticked off a lot of the medical complications that are associated with Down syndrome, from time in the NICU adjusting to room air, along with a delayed discharge as a result of her being unable to breathe in the car seat we had purchased; heart failure, poor response to medication, and an earlier-than-anticipated open heart surgery; conductive hearing loss; minor obstructive sleep apnea…you’ve been there, you know.
Long before Hope, my now-husband had introduced me to rock climbing, and through our climbing and travel adventures I fell in love with alpinism—in a nutshell, climbing snowy mountains and trekking across majestic glaciers. Blogging became a way to hold myself accountable to my goals while sharing insight into a world I couldn’t bring my family and friends to when I was out. I loved that blog.
In 2016, when Hope was still a baby, we traded our Jersey City lifestyle, which was rich with parks, grocery stores within walking distance, and a quick ride through the Holland Tunnel for access to all the deliciousness the West Village has to offer for a more subdued existence in the suburbs, where we would be closer to Hope’s doctors and therapists. Upon our move, I was itching to work again but Hope wasn’t in any sort of place to be without her mommy and I wasn’t in any sort of place to be without my baby. And so I logged back into WordPress after more than a year off and thought about whether a new writing venture would yield the same satisfaction I had previously felt. I decided to give it a try and purchased AtHerOwnPace.com.
When I started my new blog, I set an intention to only ever celebrate my baby girl. Nothing was ever going to upstage her beauty, at least not on this platform, this safe little space I had carved out just for her. I dug my heels into this notion with a tagline for the site that reads, “Navigating Down syndrome care in northern New Jersey and celebrating the life of my daughter and her friends.” Having pushed back on pressure to terminate based on a Down syndrome screening eight times over the course of twelve weeks, I suppose there was a part of me that felt if I forced our lives into a pretty little bucket, I could shield my Hope from negativity, and she could look back to read with her own eyes the unconditional love her mommy has had for her all her life.
We have truly had a lot to celebrate. Hope is about to turn six years old and is bilingual in English and American Sign Language. Her empathy is as present in our home as that sticky 21st chromosome is in her little body. Her milestones are delayed, and we’ve found a certain stillness in the journey. She looks like me, although a prettier version with hazel eyes and the biggest smile I couldn’t imitate if I tried. We have struggled through a lot of diagnostic overshadowing (when a physician doesn’t recognize a manageable symptom because of its association with a diagnosis, such as Down syndrome), but through each struggle we persevere and succeed, and we do it all together. Our family is impenetrable from the negative forces placed on us by individuals and society as a whole and trust me, we’ve been tested.
Over time I’ve learned to unapologetically cut ties we’ve had with anyone who has not treated Hope the way she deserves, but never more so than since the day she was abused in her self-contained preschool classroom in December 2020 when her teacher fastened her shoes to her ankles with packing tape.
This won’t be an easy story to share, and it won’t be an easy story to read. A friend recently told me her path from trauma has been to remove emotions from the words that comprise her story and I seek to do the same. I’m sharing this so that you can feel confident in your advocacy if something doesn’t feel quite right, and I am sharing this to release the power Hope’s bully and those who deprioritized Hope through the process of discovery have had on the part of my soul that used to shine.
Thank you for joining me over the next few weeks as we disempower ableism and discrimination as a community and forge next steps to dismantling a system that was never designed to foster our children’s greatest potential.
This is the introduction to a series of posts written by Elena Croy. We are honored to share her story.Elena Croy is an ordinary mom learning life’s lessons from her two extraordinary children, one with Down syndrome and one with an upper limb difference. Elena chronicles their challenges, triumphs, and all of the goofiness in between at AtHerOwnPace.com.