VIV Moments

Hometown

Santa Clarita, CA

Joie de VIVre

Mentoring women in need, and seeing the light in their eyes when they first realize how amazing they are!

VIV Moment

It had been a long day and I was totally spent. As I leaned over to tuck in my daughter for the night, she whispered, “Please sit with me for a while, Mom.” She was distraught and I knew she needed to talk. She was practically the third parent in the house, a big responsibility for a 7-year-old. I crawled under the covers and cuddled up close to her. We spoke quietly so as not to wake her two severely disabled brothers who lay sleeping just inches away. Her baby sister, who also has a genetic disability called Fragile X Syndrome, was asleep in the next room.

She proceeded to tell me how unfair her life was, how limited she felt being the oldest sister of three disabled siblings. She wanted to do things “normal” families do and go places “normal” families go — outings like going to the movies or walking through the mall, or attending school functions or community celebrations, all of which were out of the question for our family as a whole. She cried and I held her in my arms.

I gently told her how fortunate she was to be able to do all the things children do, like hang out with friends, swing on the monkey bars and go bike riding. I explained that when she turned 16, she would be getting her driver’s license, that she would date and eventually fall in love. And that one day she would move away from the challenges of our family and have a family of her own. How lucky she was to be able to do these things.

I then reminded her of the many ways in which her siblings were limited. “They will never have friends, not the way you do,” I told her. “They will never be able to walk to the park by themselves, or ride a bike. They will never be able to play sports, or read a book, or sing a song — they can’t even talk. And they will never go on dates, or to prom, or ever fall in love.” As I spoke the words, I felt myself realizing these things for the first time, realizing the precious life experiences my disabled children would never have. And I realized the experiences I, as their mother, would never have with them, like watching them play baseball, or receive a school award, graduate high school, or hear them say the words, “I love you, Mom.” These experiences would never be mine. Never. And for the first time, I truly felt the loss. As we lay there in that cramped, quiet bedroom, my little girl held me in her arms, and we both wept.

My heart changed forever that night, leaving me with a rare and profound sense of gratitude. Gratitude for all the things we take for granted, like being able to talk, to read, to learn and to love. I vowed I would never forget these things or how I felt that night. I determined to never dismiss or belittle the blessings in my life, however seemingly small. I promised myself that I would celebrate all the things my children could do, for their simple and hard-earned milestones. Maybe they couldn’t talk, but they could smile and laugh and be loved. And that was worth more than any words they could ever say.

Being the mother of three disabled children is like living simultaneously on both ends of a very large spectrum. It’s the most devastatingly horrible, remarkably beautiful experience, full of profound lows and transcendent highs, wrapped in a series of unpredictable moments, struggles, and triumphs.

The daily experience is one of 24-hour caregiving, changing diapers, feeding, bathing, behavior management, sleepless nights, therapies, doctors, medications, caseworkers, respite providers, special education, heavy financial impact and trying to maintain your sanity. There are days when all you can do is survive because you’re so depleted from taking care of everyone else that you don’t know if you can go another day. You feel ostracized and isolated from “normal” mothers with “normal” children, and you wonder if there’s life outside your front door.

But there are also exquisite moments when you celebrate these special children, when you realize what truly matters and how fortunate you are to see a side of life that most people will never see. You find strength you didn’t know you had, and a kind of love you didn’t know existed. There are moments when you don’t have any answers at all, and then there are those illuminating moments when the innocence in your teenage son’s childlike eyes seems to reveal the mysteries of the universe.

There are tears and laughter, loss and love; where every morning you brace for impact, struggle to survive, and somehow discover you’ve developed wisdom and rare insight along the way. Your eyes are opened to the world around you very vividly and you see that we all have “special needs,” there is no such thing as “normal,” and everyone has something to teach.

Photo credit: Jeff Nicholson

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