Life As A Special Needs Mother

I’m standing in the toy aisle of a Babies R Us, looking for something that is tactile and engaging, that will not be toxic when it inevitably goes into my daughter’s mouth.

To my left, there is a mother with an infant sleeping in a stroller who appears engrossed in the teething toys. To my right, there is a mother browsing through the books. She is with a toddler who looks to be about two years old in a shopping cart, idly kicking her pudgy sandaled feet and singing the alphabet song repeatedly while munching away on animal crackers.

The little girl points to a book and asks, “Mommy, can we get Dora the Explorer?” I watch the toddler intently from my peripheral vision. A familiar wave of sadness washes over me. Intellectually, I see that girl for what she is, a happy child. Emotionally, however, I see what my daughter, Ali, will never be. Chronologically, my daughter is 13 years old. Her body has entered puberty and she is almost as tall as I am. Developmentally, however, this toddler singing a song, feeding herself, and able to speak (in full sentences yet), has surpassed what my daughter will ever be able to do. It is a fact that I have come to accept, but that still breaks my heart.

Being the mother of a special needs child is challenging and exhausting, but is not without its happy moments. I don’t wallow in the “Why did this happen to our family?” or the “It isn’t fair” because that would not change anything or make anything better. Yet there are times, particularly when I see a young child running or playing with a friend, that I feel the weight of grief that choked me the day we received Ali’s diagnosis. I am feeling that now as I watch this toddler turn the pages of the Dora the Explorer book and pretend to read it out loud to her mother. I usually take Ali out with me when I am shopping, but I am actually glad she is not with me right now. I know this young girl and others in the store, including many adults, would be staring at her. They would look at her wheelchair and hear the sounds she gurgles and slurps and they would stare. This happens wherever we go. Today, I am glad I spared both of us from that. Usually, when people catch me staring back at them, they look away. When I ask if I can help them, they stutter and quickly walk away. In all of these years, no one has ever come up and smiled at Ali and just said hello or told her that she looks pretty. No one acknowledges her, even in our own extended family. But when Ali wraps her fragile arms around me and leans into me with all of her weight to give me a hug and then looks up at me with a huge smile, it reminds me how lucky I am to have her and how much they are missing by the choices they have made. We are an island; it is the four of us, my husband and me and our two girls. I also have a “typical” daughter, who is 16 years old. Being the mother of a typical teenage girl is also challenging and exhausting, but not without its happy moments.

Having one foot in the special needs world and the other in the mainstream world presents its own issues, but that is another story for another day.  My two girls were born on the same date, three years apart. And, no, I didn’t plan that, sometimes these things just happen. The girls have similar smiles and dispositions, yet they are so very different. Both are nosy and stubborn. Both are sweet and gentle. One is non-verbal, has no self-help skills, and will need around-the-clock care for the rest of her life. The other has what my mother would call “verbal diarrhea,” is in Honors classes, and is already looking at colleges. Each has kept me awake at night, though for different reasons.

When I am at home with my kids, our life is “normal.” It probably doesn’t resemble many other households, even those with special needs children in them, but we have a rhythm and a routine that works for us. It is when I venture out that I sometimes get caught off-guard by my feelings of being lonely and overwhelmed, so different from everyone, so disconnected from who I was before the diagnosis, the doctors, and the endless therapies. On a different day, seeing that same toddler with that book, I may be able to smile at her and say something to her mother about how smart she seems. Today is not that day. Today, I pick up a brightly colored zebra with chewable and noisy toys dangling from its hooves. I know Ali will enjoy this toy. Today, that is enough.