The Contradictions of Being a Special Needs Mother
For the entirety of my son Nicholas’ life I have kept two halves of my identity separate.
My professional life as a therapist has been isolated from my life as a mother, specifically a special needs mother. The impetus for this came from my training as a psychoanalyst, an approach that teaches that a therapist should keep her personal life private from her clients. Of course this is one extreme of the therapy spectrum and often impossible, in particular in the age of google. There are valid theoretical reasons for this approach, in which I still believe, and yet for me this paradigm has felt increasingly in opposition to my urge to share my experience with other special needs parents.
Despite my psychoanalytic training, several years ago I made the difficult choice to make a personal video for a health news organization.
This was during the Zika outbreak that had resulted in many children being born with Microcephaly, the same condition that Nicholas has. This video was an intimate interview of me and my husband and showed us interacting with Nicholas in our home. In the video I spoke candidly about how hard parenting a special needs child was and how fortunate we were to have resources. The most difficult moment was when I shared, had I known while I was pregnant that the baby would be born with Microcephaly I would have elected to terminate the pregnancy. I grappled with this choice, but the urgency that I felt to bring more attention to Microcephaly and to be honest outweighed my reservations.
To my surprise the video went viral and was picked up by other platforms. To this day I still receive messages from people all over the world who express gratitude for my honesty and ask for advice about a myriad of issues around Microcephaly or raising special needs children in general. My hope is to help these people feel even slightly less alone, more informed, and less ashamed.
This year, Nicholas turned seventeen, and I felt the urge to further marry the professional and personal sides of my identity.
Perhaps, I’m anticipating the next phase of his life as he enters his second to last year of high school. Though he will not follow the “typical” trajectory of going off to college, I hope that I will have more mental and emotional space for my own work, of which this is a large part. In addition, perhaps enough time has passed since the trauma of his birth and early life, that I am able to tolerate reflecting on my experience. Indeed, maybe I am no longer willing to exert the energy required to keep these parts of myself separate.
During Covid I started Grounded Women’s Wellness, a group practice based on the belief that womens’ lives could be improved by being true to themselves despite the many societal expectations.
I firmly believe that we would all be happier if we were honest with ourselves and others and lived authentically. Writing this post, self-disclosure and all, is an exercise in doing that for myself.
Being Nicholas’ mother is an exercise in contradictions.
Often I am simultaneously filled with pride and grief, or love and resentment, or joy and anger. Every year on his birthday these contradictory emotions are heightened. This year Nic turned 17 and I was caught off-guard by a flood of feelings.
Society tells us that a child’s birthday is supposed to be a joyous occasion and mothers are supposed to feel adoration and gratitude for their child and their role as a mother.
Yet, every year I grapple with the opposite emotions. Nic’s birthday is a visceral reminder of the day he was born when my husband and I learned that he would be disabled.
The day Nic was born we were given a grim prognosis. The doctors predicted that he would be in a vegetative state unable to walk or talk. We were told to watch him vigilantly for signs of seizures as that would further damage his already compromised brain. We anticipated that we would be forced to care for him without any hope of a connection.
Of course these were guesses by the neurologists. In reality they had no idea. In retrospect, I wish they had simply been honest and admitted how little they know about neurology and that they could not predict what Nic would or would not do. Instead, on that day we were given almost no hope, there was no celebration, only grief.
Thankfully, the outcome has been quite the opposite. Nic is the most social and connected child that I have ever known. He thrives on attention and communication. He does walk and talk, though his disability makes it hard for him to communicate as he would like. To be clear, Nic’s disability is readily apparent in his movements and speech. He will never be able to live independently. He attends a school for children with special needs that has a small student to teacher ratio and meets 10 out of 12 months of the year. When Nic is at home he requires almost constant supervision to accomplish basic tasks such as showering and dressing.
And so every year on his birthday I am brought back to the shock and grief of the day he was born. Some years are harder than others. When he turned one or five or 10, I was prepared to feel the pain and the flashbacks of his birth. I emailed and messaged my friends in advance knowing that I would need their support. But, this year when he turned 17 I was caught off guard.
Seventeen anticipates eighteen, the year that one is considered an adult.
Seventeen is when I got my driver’s license. I looked at colleges and eagerly anticipated the milestone that is eighteen. I am witnessing my friends progressing through this stage with their own children. I “like” their posts about college acceptances and proms as they, full of pride, launch their children. I will never have these moments with Nic, a fact that leaves me with an ache that is impossible to adequately verbalize. I feel guilty for feeling envious of their “normal” milestones, and have to catch myself from sinking into shame and embarrassment at my jealousy.
There is a strong pull to avoid, to distract myself from these thoughts and emotions. Yet, I know it doesn’t work, it is only a temporary fix. Instead, I am better served by acknowledging these feelings, as hard as they are to admit.
On his birthday we celebrated Nic. We cut cake, sang happy birthday and gave him presents. In order to do this I had to temporarily push aside my feelings of despair. I emphasize temporarily because I have learned that suppressing emotions is toxic. As I write this I can feel the all too familiar coping mechanism of dissociation creeping in. I feel light headed, not fully in my body, my chest is tight, my muscles braced in an effort to keep my unwanted feelings at bay.
Despite the almost two decades that I have grappled with the contradictions of my feelings about Nic, they remain unresolved.
How can I simultaneously love and resent my child? For those of you that think, “that’s just part of being a parent”, respectfully you are mistaken. This is a resentment that at times is all consuming, a resentment at Nic’s very existence. Acknowledging this shameful feeling makes my heart feel like it might crater in from the pain. It is a full body experience that can cause panic because in moments it is inescapable. I can’t un-think or un-feel it. It’s always with me even when it’s not a conscious thought.
And Nic is innocent. He has done nothing wrong. He has no control over being disabled. In these moments his adoration and longing for closeness from me make my resentment feel even uglier. How can I feel this way about a loving, joyful child?
He is on the cusp of adulthood. Yet, even that statement is full of contradictions. While biologically he is seventeen, he isn’t remotely close to that age developmentally. He acts more like a seven or eight year old, and in some ways even younger.
Writing this piece is by no means a resolution of my complex emotions.
Instead, it’s a step in a process of acknowledging different parts of my identity.
It’s a step towards publicly revealing a messy, painful part of my life.
I am writing not only in an attempt to be more authentic, but with the hope that my experience might encourage others to share their own and in turn feel less alone.
Christine Grounds, LCSW
Christine Grounds is a therapist in NYC and the founder of Grounded Women’s Wellness. She specializes in working with women ages 20-50 who are navigating transitions in work, relationships and parenthood. She also has extensive experience working with new parents and parents of children with special needs.
