As parents, we are on a journey that is filled with emotions that shake us to the core both positively and negatively. We tend to embrace the good and share it with whomever we can. I remember telling a friend about a time when I talked Lila, my oldest, down from a code blue tantrum. Somehow I managed to calm down a 2-½ year old who was fixated on getting a baby doll and gaining attention from the entire store as it escalated. It felt like I was negotiating with a terrorist, but I did it! I couldn’t help but share my accomplishment.
But I rarely shared the feelings that accompanied the bad days. I questioned whether it was even okay to feel the way I did while simultaneously thinking I must be the only one who had these thoughts. We’ve all been there. We’ve all had those days where the tantrums won’t stop, the nap never happens and dinner never gets made. But we only share those innermost thoughts with our closest confidants, the ones we think would never judge (or worse de-friend us).
After my son was born, I had several of those days. I continued to share the good and keep the worst feelings closest to my heart, almost like a disease. At five months, he had neurosurgery for Craniosynostosis (premature fusing of the plates in his head). He rarely slept, barely gained weight and suffered from back to back infections. At the same time, he continued to move forward developmentally but at a much slower pace. There was nothing glaring beyond a subtlety to his development that had alarm bells going off in my head.
As a parent with experience in special education law and teaching special education, I knew I had to get to the bottom of the situation. We were desperate beyond belief and horrified by the thought of never having answers. Despite being turned away by some professionals, we finally did find doctors who took our concerns seriously. It took us almost a year to get a formal and diagnosis and it was nothing like we expected. Elliott has two separate chromosomal syndromes, Mixed Gonadal Dysgensis and 18p Syndrome. Much to our dismay, there are no other reported cases of a child affected by both. Statistically speaking, the chances are approximately 1 in a trillion.
The moment you become a parent of a child with special needs, something inside of you changes permanently. For me, that was my “filter,” which was never quite as good as it should have been. Some of the things I felt were so incredibly painful (and shameful) to feel that I knew I couldn’t keep it to myself. I also knew I couldn’t be alone and surely other parents can relate.
At our appointment with the Elliott’s geneticist, I learned that if I had an amniocentesis done, I would have found out about Elliott’s conditions. I remember stammering out “but we had no reason to do amnio.” Later I was plagued with thoughts of what I would have done and how my husband would have reacted. Would we have chosen to continue or terminate? I know some people might think that I am looking for them to say, “Of course you would have had him.” But I’m not. I am just being honest with my feelings right now in this moment. Would I have carried through with the pregnancy or terminated knowing that my child had two chromosomal disorders that had never been recorded as coexisting and potentially has a degenerative brain disease? I can’t say for sure. I choose him every day of my life. Elliott and Lila have made me, for better or worse, the person that I am today.
Through them, I have learned that the good and bad feelings come together. And to deny yourself the right to feel the raw painful bad feelings or worse, to be ashamed of them, is toxic. We have to embrace the good with the bad. As parents, we have to embrace each other and give ourselves permission to feel freely without judgment.
Courtney Leonard is a Bloomfield mom of two children, one with special needs. She has a law degree with experience in education law and taught special education in New York City. She also organizes a Mama’s Poker group.