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What Doctors Failed to Tell Us About Raising a Child With a Disability

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After our son Bennett was diagnosed with a rare, neurodevelopmental disorder called CDKL5 deficiency disorder at 11 months old, I was told that the future was unknown for him, that he would “write his own story.”

That was the most positive thing we heard.

Then we were given some websites to visit and we read about the statistics for a child like Bennett. It was grim, to say the least. The neurologist and the geneticist chose their words carefully, careful not to be too devastating and careful not to be too positive, in case we were to become disillusioned about our son’s condition. We were also told to call our regional center to seek an assessment and services as soon as possible.

What they didn’t tell us was how we were in for the fight of our lives.

The fight for services, for medical equipment, for the best care possible for our child.

We have to fight for medical coverage.

We have to fight for the safest and most effective anti-epileptic medications.

We have to fight for therapies.

And we have to fight for the best placement in the school districts.

Every day that I am not working, I am making phone calls and emails to case workers, therapists, doctors, specialists or advocates whom I have questions for. In between that, we are at therapy and doctor’s appointments, or completing our home therapy programs for physical therapy, speech, occupational therapy, early intervention, vision, and feeding and oral motor development.

Having a child with a severe disability and medical needs is indeed a full-time job.

But here’s one more thing they didn’t tell us.

the author's child smiling

They also didn’t tell us that our son Bennett would make even the grumpiest stranger smile. That his pure, sweet innocence would make anyone’s day better. That a cuddle or giggle from Bennett would feel like sunshine on my heart.

They didn’t tell us that Bennett would lead to living a life I never knew I wanted, and to experience feelings I never thought I would understand.

They didn’t mention that Bennett would be a true gift and enrich our lives in every way possible — teaching us empathy, advocacy and unconditional love.

They didn’t tell us that our son would be our angel and we would want to do anything to make his life the fullest, happiest life possible.

So remember, when you’re given a diagnosis for your child, there’s a great deal doctors won’t tell you. Some of it may feel like insurmountable challenges, but some may also be the best surprises of your life.

This story originally appeared on Bennett’s Wish

Originally published: May 14, 2019
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