Saying the Words Out Loud

“I pray she’s okay…that she doesn’t face the same challenges as Leo,” I expressed to my Mom, a couple of months ago, as we were driving.

Pausing for a moment, silence palpable as I bit my lip, hesitant to continue on…Afraid to allow my thought a voice…

“And if she is okay,” I said, my words already cemented in guilt…

“If she’s okay…maybe she can take care of her brother when they are older.”

“I know,” my Mom responded quietly. “I know.”

My sister, Victoria, has special needs. Growing up, as my parents became aware of her challenges, and the extent of her medical impairments, I knew early on that part of my purpose was to help in some way- eventually understanding that later in life, I’d assume responsibility for her care.

There was never a conversation, or pressures by my parents to cajole me into taking on this role. This reality, was simply always inherently built into what I saw for my future, void of any alternative…

But, as my Mom and I drove down the road, I could sense the depth of her understanding, while I expressed fears I had for Leo, for this baby…of never wanting to impose that expectation on her, or place pressures on her to assume a caregiver role.

That her life…Her future…and what she will come to view as her purpose may not mirror my own.

My parents, I know now, felt these same fears…that same guilt.

And my mom’s gentle murmurs of acknowledgement yielded a sense of solidarity between us, cradled in that fear…and doubt…and guilt…

Our experiences as parents of special needs children, all vastly different, yet so boldly similar.

Some may find it a bit premature to even consider the possibility that Leo will require a caregiver as he enters adulthood…But this reality, however painful, approaches quicker than one might imagine…

Not long before speaking with my Mom, my husband, Andy and I had a conversation about guardianship- about how many parents with disabled children have to apply for guardianship of their own child so as to ensure that they will be able to make decisions on their behalf, if the child is unable to do so on their own, once they turn the legal age of 18…

I expressed to Andy that we may have to do the same for Leo as the time neared, and we should expect that he will be living with us well into adulthood.

“That is a possibility,” Andy agreed, before continuing on…

“But, he’s only 8. A lot can happen in 10 years. We don’t know yet…maybe he will be more independent than we think.”

Sighing deeply, I turned my head in bitter defiance of what I perceived as his naive, and unrealistic optimism…

Yet, all the while knowing he was right…

Knowing that Leo’s story hasn’t been written yet, and that preparing for what could be, doesn’t mean shutting out challenging goals, and existing hopes and dreams for Leo.

As I am quickly nearing the 3rd trimester of this pregnancy, I hold onto so many hopes and dreams for both of my children…

Although grandiose, somewhat superficial dreams, such as one of them “becoming president” or “an astrophysicist” have long since passed…

For my girl, I hope that she grows up loving her brother. That she is kind…empathetic…

I hope she understands and appreciates how special and unique he is…

And I hope that she will always follow her dreams…whatever they may be.

For Leo, I hope that he loves his sister…that he always holds onto his sweet spirit…that he continues to teach the world about the importance of diversity among us…

And I hope that he will always follow his dreams…

Whatever they may be.

Written by, Ellie Whetzel

Ellie Whetzel is a Wife, Mom, and blogger who writes about the ups, the downs, and everything in between of life with her extraordinary son, Leo, who is on the Autism Spectrum. You can follow their journey at: https://www.facebook.com/mylifewithleo/

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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