Literary Mama writing about the many faces of motherhood
Special Needs Love

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My son was born weighing little more than a pound. I didn't fall in love when I first saw him, but felt instead -- taking in the lines and probes and syringes and fluids that kept his tiny, imperfect form alive -- a deep and remarkable appreciation for his strength, his will to live, his desire to be here on earth.

As his hospital stay dragged on and he endured countless surgeries and procedures, I forged the first bonds of love with my son. I came to know love as fierce mother attachment, the sense that if I did not protect his defenseless self, who would? My lessons in love continued when Evan finally came home. I discovered that loving him involved taking care of him in ways I had never imagined, like watching eye exams and heart scans and EEG tests. Love meant not only having to do all this, but being able to when no one else could. That was love, doing what was necessary, no matter what.

In those early days, I also learned that love meant standing up for Evan and for myself, easing his pain and suffering and learning who he was, beneath his disabilities. To see him apart from his disabilities.
~

Over the years as Evan's mother, I have often wondered: if a typical mother's heart is strong, is the heart of a special needs mama even stronger?

Many of my friends who have children with special needs will testify to the profound need we sense for that child to be on this planet, teaching us about love. I have felt that with Evan, and I've seen that with others. These children show us how to open our hearts in ways we never knew were possible. Perhaps that makes our hearts stronger, braver, or kinder. Or perhaps our hearts are simply, by virtue of being open, wider and more expansive.

But inside this wider space we have discovered that amidst the love there is also the heartache, and within the heartache, the joy. The will to live and the will to love.

~

I love that my son loves his bed the way his mother does, that when I put him into his crib he smiles and sighs and says "Aaaah," the same way I do when my head hits the pillow. I love that I know this about my son even though he can't tell me directly, even though he can't say "Mommy, bed!" I love that despite not being able to see or talk, my son is without question a person, someone who loves his bed and his school and the swings.

I used to mourn the person my son was not: the boy who would talk and eat and see and run and call his friends by their names. He may still do those things some day, and more, but the progress is so slow I can no longer allow myself to think about those possibilities. And yet I wonder: what would I love about him then? Would I love his sense of humor? His voice? The songs he might sing? The facts that he fidgeted in his seat at school or told silly knock-knock jokes? Would I love the way he pushed my arm aside or argued with me, rather than accepting my help?

Instead of what I love now -- his ringing laugh, his beautiful smile, the way he swings his cane around like a weapon -- what would I love? If Evan were a typical boy, What about him would I love?

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I'm not supposed to wonder who my son would be apart from his disabilities. I'm supposed to see him as a person with disabilities. I'm not supposed to think about who he might be or what I might love about him or how he might tell me he loves me.

But I do. I do because I love him and because he has taught me that inside a wide-open heart, loss is sometimes a part of love.

~

In the case of my son, the mechanics of love include knowing I am loved back -- because of the intense mother love that helped him survive those early years, because of my care and attention and defense of him -- but not in a way that is obvious or transparent. My daughter, who is a typical nine-year-old, tells me a dozen times a day, "I love you, Mommy," or "You're such a great mommy." She will kiss me on the mouth and give me hugs and sit in my lap, all arms and legs, and just pour on the love.

Not so my son. He doesn't use those words or give those hugs or kisses. He turns away from a kiss on his cheek, swipes my hand from a caress. But still I know, when I pull him from that same bed in the morning and see his smile and laugh and hear his attempt at "mum-mum," I'll know, right then, that I am loved.

~

A few months ago, I watched Evan crawl into the arms of the same neurologist who once brought him back from the brink of a catastrophic seizure disorder. I saw my son take shuffling steps across the room, lift his arms to be picked up and hoist his legs into this man's lap, a man who is world-renowned for his ability to help kids with seizures and all else. I met the man's gaze as he looked at me with Evan in his arms and smiled as he said to me, "Now that's love."

Yes, I thought. That is. That is love.


Vicki Forman is the author of This Lovely Life: A Memoir of Premature Motherhood and
teaches creative writing at the University of Southern California. Her work has been nominated for a Pushcart and has appeared in Philosophical Mother, The Santa Monica Review, Writer to Writer and Faultline. She lives in Southern California with her husband and child.


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oh, so beautiful. thank you for writing about this mama love. i love the image of evan saying mum-mum in the morning with his smile and laugh and, i imagine, arms held high, reaching for you, his wonderful mama.
I love this line--"Many of my friends who have children with special needs will testify to the profound need we sense for that child to be on this planet, teaching us about love." I was just talking to a friend today about her decision to have a child (or not) and how once that child is here, on the planet, in your life--no matter how much work it can be or how challenging it is, you are happy they are in your life. Thanks for writing this, Vicki. I think it is extrememly difficult to articulate how and why we love and you've done it so beautifully here. Grace
That is love and you expressed it eloquently. I love who my special boys are, although some days the going gets tough. I wrote a brief poem in December expressing my thoughts on proper "Focus" as a mom of special needs children. Here's the link: http://slurpinglife.typepad.com/slurping_life/2006/12/focus.html
There's not nearly enough written about love. It's the only thing that makes any sense! Thank you for sharing your, and Evan's, love!
Once again, tears in my eyes. I wonder all the time how things would be different if my daughter were typical, and I instantly feel guilty for that, or for the sadness I feel that she is not. I often take fierce pride in knowing that I love her as no one else can, because I am her mother, because she depends on me. And as you wrote, I've already learned so much more about love just from knowing her. The inherent ego that I believe is tied into parenting has had to be set aside, or at least dealt with on a daily basis. It hurts at times, and yet there is a purity there that is so beautiful. I can't change things and so instead I just focus on the good...because there's a lot there.
My 4 year old son Asher was born with multiple disabilities as well. I immediately recognized similarities between your experience and mine. Today is my 35th birthday and reading your essay was a fine present. Thank you.
Oh my gosh, I am so choked up. This is terribly moving. Thank you, Vicki.
Vicki, I am so glad you wrote this. Sometimes I feel that having a special-needs kid opens up my senses in ways I could never have imagined. I think it's that when verbal communication is absent, or unconventional, you have to work harder to understand. So maybe the other senses overcompensate? I don't really know how to explain it. One of Isaac's therapists confessed to me one day that she sometimes gets annoyed with typically-developing kids...that they seem so loud and brash and self-centered, and when she looks at my son, or others who have to work so much harder for the simple things, she feels a deeper appreciation for their courage and their sweetness. I am so glad you're using this forum to offer a window into what this feels like--the sorrow as well as the joy. Thank you.
Vicki, Thank you for sharing from your heart what I hear from so many mothers...you have a special gift. It is so exciting to hear of Evan walking and waving his cane around...As I visualize what you discribe, I smile and it warms my heart...thanks
When my son was alive, I fought fiercely for the best care for him. People would tell me they thought I was an RN or a doctor, used both as a compliment and indictment. I grew increasingly insecure - was it my Type A personality, was I being selfish? Thank you so much for reminding me. Of course! it was always love!
Vicki, You have such an amazing insight and ability with words. Just this weekend at a church function, all of the "typical children" (including two of my own) were running and playing together while the adults ate. As I sat there struggling to feed my sweet angel Emily (age 9) with moms that really have no idea how hard it is to even function in a social setting while people are staring and questioning without asking, yet not once asking if they could assist, it became so apparant that many people do not have a clue. My husband later told me (after an early exit by Emily and myself and many shed tears that afternoon) that there is no way for those people to understand or even comprehend how difficult it is to have a blind child trying to eat in the midst of chaos with senses completely overwhelmed without the ability to communicate how she feels. Don't get me wrong, Emily doesn't cry in those situations or even get crabby, she just shuts down and then everyone gets the impression she is an unhappy child. On the contrary she is amazingly happy with the sweetest smile in the world. She just has a hard time in social settings with 50 kids running crazy indoors (I myself have a hard time too). It's at times like these that the love I have for her reveals itself in the form of protection and defense. I don't love her any more or less than my other 2 sweet children, but I think it is really difficult for other people (even at church) to understand that kind of love and understand that with that love comes an amazing amount of heartache and disappointment. I just choose as her mommy to not dwell on those things but on the small achievements in her life that allow her more independence and on the happiness that she brings to our family daily and in the process is making each of us a better person. Thanks so much for your column. It is an amazing support to know others feel the same things.
Wow! (tears) yes THAT IS. That is LOVE:) Thank you. Kim and Miss T
Vicki, I love your words. Thank you for talking about the full spectrum of love that we have for our miraculous kids.
Your writing is like weaving material from immaterial thread. Describing love within loss, beveling it with such detail. I can smell Evan's sleepiness as you pull him from bed and, of course, revel in his revelry in bed the night before. I wonder why the apparent taboo w/parents of special needs kids re: envisaging things to be different to the way they are. I understand that it's tragic not to embrace & be grateful for the myriad things there are to be grateful for, and that wishing for things that are not can blind us to the nature of things that are. But don't we all carry out thought experiments in so many ways, at so many junctures?
You're my favorite. My girlfriend loaned me a book recently named The Memory Keeper's Daughter. There was something terrifically honest and beautiful, something that felt familiar, in one of the character's voices. She is a special needs mama, too, and the way this character loves--and I mean LOVES--her daughter Phoebe is magical. It reminds me of your love.
Vicki, thank you for this. I've just been writing about the first time I placed an NG tube for my preemie son with Down syndrome. I'll never forget that moment of knowing I had to do something that seemed impossible, because I was his mother. And I did. So your whole essay touched me, especially this line: That was love, doing what was necessary, no matter what.
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