May 21

May 21 Accepting disability

“Do you have a disability placard for your car yet?” Adelaide’s neuro-muscular specialist asked.

My breath caught in my throat. I looked away.

“No, but…” My voice trailed off as I realized she hadn’t asked me if we needed one - just if we already had one.

“We’ll get everything submitted for you and then you’ll have it if you want to use it.” She offered, as non-chalantly as if she’d been suggesting a dose of Tylenol.

I made it to our car before breaking down in tears - until then I had never considered Adelaide, then just a year old, disabled. But here was this doctor who after one examination determined that Adelaide was not only currently disabled but would be for the foreseeable future. Early intervention had labeled her as delayed or at a deficit but no one had ever said out loud to me that she was disabled.

Adelaide’s disability and medical differences were concepts I struggled with early on in our journey together. I was constantly questioning if this was somehow my fault - while simultaneously in disbelief that this was happening to our family, to my daughter. Recently, I realized that I have very few pictures of Adelaide from early hospital admissions. Looking back I know I was scared, an emotion which doesn’t exactly illicit an inclination for photo taking. But also I was ashamed and embarrassed. How many photos did I delete because she wasn’t looking at the camera or I thought she looked too sick or distant? I would hesitate to post pictures because she wasn’t smiling or because she was making the same expression while sitting in the same chair as the last picture I posted. Had I chosen not to take, save or share these photos because I wanted to be private that would be one thing - but it wasn’t for privacy’s sake.

At the time I knew very few families with sick or disabled children and my denial that this would be a life-long medical issue prevented me from connecting with relatable families. Additionally, I was afraid of oversharing on social media and honestly, had little comprehension of what was actually going on with Adelaide so I didn’t really know what to tell anyone anyway. What if I said the wrong thing? What if I made the wrong decision? What if I did this kind of parenting wrong?

When the placard came in the mail I cried some more and then stuffed it in the back of our junk drawer. I didn’t want to look at it or acknowledge it existed - this devastating symbol of how the world saw my daughter and what they thought she would or wouldn’t be able to accomplish - and it stayed there for almost a year.

I’m not proud of these early reactions and can only be honest about them now because I acknowledge how much I’ve grown since then. I couldn’t tell you when exactly the shift occurred - when the shame gave way to pride. But eventually I accepted that Adelaide wasn’t normal or the friendlier version of that word, ‘typical’. She was medically complex, she was disabled, she was significantly delayed in every possible way. It took accepting her and her atypical qualities before I felt comfortable sharing her and our journey in a more public way.

By the time Adelaide was two she was significantly sicker, heavier, and traveling with more equipment. Being able to park closer to building entrances was no longer a convenience but a necessity. I dug the placard out, attached it to the rearview mirror and was surprised to find that I no longer resented the bright yellow wheelchair pictured on that piece of plastic with its reflective tape strips. I was able to accept the placard just as I had eventually accepted my daughter.

In time I was able to take pride in my Adelaide’s strength, determination and fight. Yes, she was disabled and medically complex - these were indisputable and defining characteristics - but they were not cause for shame. I felt powerful as her advocate: authoritative, informed and decisive - also overwhelmed, anxious and self-doubting. But there were few situations that gave me a bigger rush than going toe to toe with a doctor and holding the line for Adelaide’s best interests.

The first time I got in the driver’s seat of our car after Adelaide died the reflective tape on that placard caught the corner of my eye. A blatant visual reminder of our loss. I resisted the urge to remove it reminding myself that her carseat also still sat behind me along with various hospital blankets that littered the back seat. But that placard had taken on much more meaning than the carseat or blankets. I made it about halfway down the street before tearing it off the rearview mirror and throwing it on the floor of the car. Once a symbol of my fear, shame and ignorance that silly placard had taken on pieces of our identity as a family with a disabled child. An identity we could no longer claim in the present but that I will hold on to with pride as part of our past.