The Journey of A Special Needs Parent

Here, I'm just like every other kid on a swing.

By: Melinda Lancaster

There are times, as a parent of a child who cannot communicate, that I have no idea what my child is thinking, why she cries, why she laughs, why she says “ow”. None. Why does she sometimes burst into tears…is she thinking of her sister so far away, is she lonely, is she missing someone, did something happen? Is she thinking of all the things she can’t do, is she grieving the loss of what she might have been?

I do. Not as much as I used to, but I do. There are many parents who will understand this, those who've lost their children, those who have severely disabled children, and others whose children aren't. But, I can only speak for me.

Once, I had a perfectly normal baby girl, one who was going to grow up, fall in love, have her heart broken, who would want me to “do” her hair, and put on makeup. She would go to the prom, be a scientist or a teacher or an astronaut or none of those things. She would get married, I would dress shop with her and cry when she found “the one.” I would watch her change her name with a kiss and cradle her children in my arms. And, then….I didn’t.

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Doing my part to find a cure.

Poof. All those dreams sucked from my heart in one fell swoop of “your child will be disabled for the rest of her life.” Did I love her less? Of course not. But grieve, oh yes, I did. I cried for days. She was not one bit different than the day before, but I was different. I was now a special needs parent. How can that happen in just one moment? One moment you’re a normal mom, and you’re just wondering…”I wonder why she’s not talking anymore?” It’s just a wonder, not a real worry, just a thought, almost discarded. And then it’s YOU, the normal regular ole mom full of dreams that you have to discard.

But, you adjust. You do. You move ahead, because what else can you do. But then, Kindergarten comes along, except no one cares about your child’s class on parent night. No one’s even there when you go. You don’t get to meet the teacher, see the other students. And that little tiny bit of normal you were hoping for, well that’s just sucked right from under you again.

And the playground, full of laughing, running children is hard to face, as you place your child in the baby swing at seven because she can’t hold on yet, but you do it because you know a smile will greet you and it’s a little gift of normal, a part of a dream you once had of taking your perfectly normal baby girl to the playground and watch her play. It’s not exactly the dream, but it’s close, and close is good in this world of special needs.

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Somewhere in all this lies the answers to every question.

These sorts of moments come when you least expect them, the ones that almost break you. Like when you realize Halloween will never ever be fun and you stop dressing her up for it. Or when there aren’t any children at her birthday party and she never has a sleepover and she never, not even once, gets an invite to someone else’s birthday party that isn’t family.

And JUST when you think you’re through, you have no loss left to grieve, bam, she’s a senior and she should be going to the prom, but even if she could, you’d never find a dress to fit, and who would take her-no sweet boy, who was so nervous he could barely get the words out and then jumped up with a fist pump because she said “yes”. 

But, there are great joys that counter all of that. A new skill, a new word, snuggles beyond the teenage years. And while I now realize there will be times I will grieve what could have been, the journey for a special needs parent, at least me, is to learn that the achievements are sweeter, the laughter more melodious, and the adage that “something worthwhile is never easy” becomes more true.

So, that’s why against almost all the odds, I strive to teach my daughter to read, to communicate, and on more basic levels to feed herself, to find ways to open the world to her despite her limitations. And now I have new dreams and hopes. They are no less wonderful, because what could be more wonderful than putting a book in her hands and having her understand.

I know that “what might have been” will stay with me, though Time will lessen its pull, but Hope for what might be, that’s what’s filling up the space left behind.

~Melinda

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Melinda Lancaster is a children's author and a poet. Her books ("Tyler and the Spider" and "Grandma, Tell me If You Can) are published through Wiggles Press and her poem "Echoes" hangs in the Hyannis JFK Museum. After studying 
Russian Studies and Biology at Manhattanville College in Purchase, NY she enlisted in the US Navy. Her experiences in the Navy brought a deeper appreciation for the Freedom and advantages available in America and she is an avid volunteer-local veteran's center, library, and reading for the blind, and through "Wish Upon a Wedding". She began writing in her mid-thirties and is inspired by her experiences as a single mother, a parent of a disabled child, a step-mother and a grandmother to reach out to children. She is currently working on promoting her custom poetry through DKS Verse and starting the process for establishing a non-profit organization that provides terminally ill and disabled children with their own story book-where they are the hero! It is her hope to eventually be able to provide art supplies, writing supplies, books and equipment to facilitate writing, reading and drawing to these children.  She is a member of the Cape Cod Writer's Center, Cape Cod Children's Writers and SCBWI. She has several works in progress and hopes to branch out from picture books into Middle Age and Young Adult arenas and is available for readings/crafts at schools, libraries and charity functions. In her free time she enjoys reading, knitting and going to the movies.