An Open Letter to Mothers of Disabled Children

As a disabled mother, I can’t help but reflect sometimes on my own entrance into the world. As a member of several online (primarily nondisabled) parenting groups, I find myself triggered by social media posts about babies born disabled or young children being diagnosed with disabilities. As a way to process my own emotions, I decided to write this letter. It is a letter I wish my own birthmother could have had, and I something hope new mothers of disabled children will read.

Dear Mom,

I know you’re confused and scared. I don’t look exactly like you expected. The doctors tell you I’m deformed, that I’m defective. You are supposed to be devastated. Don’t be. Look at me – touch me. Suspend judgment while you explore my tiny new self. Notice how the contours and folds of skins are uniquely mine. I came from you – you made me, and I’m perfect.

As you observe yourself having unpleasant and distressing thoughts and feelings, refrain from criticizing yourself. Realize those ideas about disability are not yours alone – they are the product of the world and society in which you have lived. Later, you will remember this time as the beginning of your journey into a different culture, one where the social order is a bit different than what you’re used to. You don’t know it yet, but you will meet people along the way that will radically change the way you think about bodies, brains, wellbeing, and life.

Right now you’re hearing only what a burden I’ll be, all the care I’ll need, and the many things I won’t be able to do. Don’t listen. You’ll figure out exactly what I need in time – you’re my mom. Take all the pictures of me and get some of us together. You’ll want to have these to show me when I’m older so you can tell me how special those first few moments were. To the people saying “I’m sorry” – tell them, “don’t be.” Say, “piss off” to people’s condolences.

Tell them I am exactly what you were expecting – a baby. I’m the same baby who has been growing inside you these months, the one you conceived out of love, and whose arrival you’ve been eagerly anticipating. Why would they tell you that you need to mourn?  Instead, celebrate my new life and the growth of our family.

Soon you will know me fully. You will learn that the difficulties we face will have very little to do with my disability and so much more to do with the attitudes of others and the lack of adequate resources for disabled people. You’ll be angry, and you’ll turn into an advocate. Some people will try to minimize my disability and say that I have “special needs,” or that I’m “differently abled.” You’ll know that’s ridiculous, because you are aware of both my limitations and those imposed on me by others, and you won’t sugarcoat it. You’ll be connected to the disability community and you won’t avoid calling me what I am – disabled. You’ve seen pride in disability identity and you hope that someday I’ll feel it too.

You won’t ever regret having me or keeping me, I promise.  Your nurturing acceptance will provide me a strong sense of self. As a result of your unconditional regard, I will come to love and trust myself. You will look back on this time and appreciate the people who said “congratulations” and meant it. You’ll just as authentically say that you wouldn’t trade me for the world and that you wouldn’t change a single thing about me. Because, mom… you already love me exactly the way I am.

Love,

Your (proud) disabled child

 

 

 

 

 

 

 

 

To the Adoptive Moms: You didn’t save us. We give you as much as you’ve provided us, and you’d be the first to say that. You chose us and you didn’t try to change us. That kind of love is a true gift. I love you, mom!