To the 'Typical' Moms Who Find Me 'Inspirational' Because My Child Has a Disability

A cousin sent me a message saying how inspired she was seeing me loving my child, giving my life for him and being happy and positive “in spite of his disability.” She was kind and well-meaning, but like so many others who haven’t been touched by disability, was unable to understand my life.

So here is my response to her and everyone who wishes to understand the heart and mind of a parent whose child has challenges beyond what is typical:

I would have written a message like yours two years ago, since I could not imagine how anyone could keep it together and seem positive when faced with I perceived to be an unimaginably tough situation. I have met moms whose kids have more serious disabilities and medical issues than mine, and my initial reaction was to treat them as heroes and put them on a pedestal, much the same way you are doing to me. I slowly came to realize their life and challenges were their normal, even though it looked different than my definition of “normal.” They were doing for their child what any mother would do, what I would do for my child if he needed it, what you would do if your kid needed it. I realize that putting yourself in my shoes is so scary that you choose to put me on a pedestal instead. But if you put your child in my child’s shoes, you will realize you would do the exact same thing for your child as I am doing for mine.

The day a child is born, he can be anything in his parents’ dreams: an astronaut, an NFL quarterback, a Nobel prize winner, a Hollywood star. As the kid gets older, the future NFL quarterback might show zero hand-eye coordination or interest in sports; the future astronaut would rather dance; the future Nobel Prize winner might have no aptitude for math or science; the future Hollywood star might have no interest in performing arts. Though your original dream is gone, you might not even remember it as you discover what your kid loves doing instead, and celebrate their unique achievements.

The diagnosis of Down syndrome initially felt like a punch in the gut, a shattering of the “regular” parent dreams. I am now cautiously piecing together a new set of dreams for my kid: that he will get to go to regular school, that his classmates will include him in their play and social circles and not ridicule or bully him, that he will graduate from high school and possibly go to college, that he will find love and companionship in adulthood, that he will find a fulfilling job and build a life that keeps him happy and content. But as I type this out, I realize if my cautious dreams are realized, it is the life most people live and is actually quite an awesome life to have. I won’t lie, it took me a while to adjust to and accept my new reality as a parent of a child with a disability. As time went on, I found support and community and I relaxed into my new role and finding a new normal.

As far as expectations and frustrations around unmet expectations go, you and I are more alike than different. I also set goals for my son, make him work towards them, and get frustrated when he doesn’t do it at the pace I expect. I add a hearty dose of patience and we try again, and we celebrate heartily when he finally achieves his milestones. Like all mothers, my love for my child is unconditional and independent of what he achieves; I love him just because he is my child. This love is probably what makes us care so much about our child’s achievements and progress.

I am a regular parent, not very different from you, and certainly not inspirational! Each parent goes through the journey of becoming the parent your child needs, whether it is learning all about dinosaurs or spiders because the child is obsessed with them, or all about the anatomy of the heart and lungs because the child has congenital heart disease.

We are all on a journey to become the parents our children need, and that is something we all have in common. Let us support each other through this incredible journey and be there for each other. I need you in my corner, and I will always be in yours.

Follow this journey at No BS About DS.

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