Ever since Talia's diagnosis I've wrestled with the identity of her as a "disabled child." As she was getting diagnosed I struggled to fall asleep while crafting plans as to how best to advocate for my child with potentially severe disabilities. What school system would I have to do battle with? What wonderful therapists would I need to push my early intervention system to include on my team. In the final days before diagnosis I was near panicked about the idea of my disabled child turning into a disabled adult who would need a long term care facility. I let my brain travel so far down the road of potential disability that when the diagnosis of terminal, untreatable Tay Sachs came, I was left both reeling, and oddly calm. It's a terrible thing to say out loud, but the knowledge that Talia's suffering would be brief was one small comfort in this obvious horrible situation. My baby, 11 months old at the time of the diagnosis was now, and had always been, terminally ill. Does that make her disabled?The answer sounds obvious. She is unable to do developmentally appropriate activities. She is differently abled than all of her peers. Of course she is disabled. The New York Times recently started a series of op-eds written by people with disability. I tried to see myself in the pages, I tried to see Talia, tried to wonder what she would say. My mother even wrote a piece early on about my experience parenting a child with disabilities. I refused to see myself in that either. I said "I'm not parenting a disabled child, I'm caring for a terminally ill child." It's blunt, but to me there is a difference.I hadn't, at that point, felt like my experiences fit in those pages. I hadn't struggled against the system yet. Her disability has been hidden in plain sight. Talia was still a baby and despite her diagnosis she looked like a calm, sleepy child and that's how the world treated her. I don't plan on pursuing medical intervention designed to extend Talia's life, so my parenting of her has consisted mainly of snuggling and feeding her, as I did when she was truly a baby.Talia is now 20 months old, and my feelings on disability are changing. Attending the NTSAD conference helped me to see Talia in the greater spectrum on children with this disease. I saw her as both more alert than I had given her credit for, and had to come to grips with the fact that she may live longer than I expect. One of the challenges of this disease is that no clear timeline exists telling us how much time we have. 18 months is a typical time children start to experience seizures, but Talia hasn't had them yet. Many children live to the age of 2 1/2, and those with feeding tubes can live well beyond that.The unclear timeline is a huge challenge to mentally prepare for. It's also a challenge literally prepare for. I've held back on bringing equipment into the house that is purely medical or designed for special needs kids. Why? Partly because her baby high chair, stroller and car seat have worked out very well for us so far, but I'm sure a part of me is trying to hold off the disabled label for as long as possible. I want to keep us in the bubble of babyhood. I want to keep the world looking at Talia and commenting on her wild hair and calm demeanor rather than avoiding eye contact because of fear of the unknown.As Talia continues to grow, but not develop, the choice to see her as a child with or without a disability is no longer a choice. She is beginning to grow out of her baby equipment. I have begun to research special needs car seats and high chairs that can hold her body upright. The most obvious change is that I got a disability parking tag to use in the car when I have Talia with me. I feel guilt when I use the tag that I'm taking the spot of an elderly person who needs it. I have fear that someone will confront me about our hidden disability. I prepare answers in my head to rude questions that remain unasked. I prepare answers too for my children who wonder why we now get to park in the special spots. This marker is physical confirmation of the disability that exists in our home.As large part of me wanted to magically slip from parenting a dying baby to grieving that baby without having to experience the disability and medical decline will inevitably precede death. As I've certainly learned by now, I don't have control over what is coming, I have control only over my feeling and actions. I can choose to see this new phase as a devastating reason to hide from the world, or I can continue to confront my life with openness and reality based optimism. The reality is, my child is both disabled and dying and fear of labels doesn't change that. I'm fighting every day to provide her a comfortable life. I fight daily to bring happiness into my house and to make all of my children feel bathed in light and joy. I fight daily to allow my mind to see the reality of the situation without allowing that reality to drag me into the dark. I fight, and for that I'm not a brave mom of a disabled child. I’m not a heroic mother to a dying child. I’m a mom, with all the heroism and bravery that that title has always demanded.
What is disability?