How do You Cope with Having a Child with Disabilities?

Savannah

Did you know something was wrong?

When we finally understood the extent of Savannah's issues: brain injury, cerebral palsy, seizures, quadriplegia, and blindness (to name a few), Tamara and I felt angry and depressed. 

People would ask, "Did you know something was wrong before birth?"

I would say, "Everything leading up to the birth was normal. This kind of thing just happens in 1 and 9714* births in the United States. It was statistics... we won the wrong lottery. And, unfortunately, it's more common than people think."

One in a Million

So, when I saw a pod cast called "The One in a Million Baby" and read that the show's creator, Tessa Prebble of New Zealand, held a similar opinion, I was intrigued. Like me, she didn't think she would win this particular lottery.

Tessa says that much of life is determined by the odds. When you buy a lotto ticket your odds of winning first division (in New Zealand that is) are 1:38,000,000. By contrast, the rate for Downs Syndrome can be as high as 1:800 babies, but no one seems to worry, even though they probably buy a lotto ticket each week.

Tessa and Eva

"I assumed my baby would be healthy and normal in the medical sense of the word," Tessa says, "and never even thought of the possibility of her having a complex medical story." 

Her daughter, Eva, was born with CHARGE Syndrome, leaving her blind, deaf, and with heart and brain abnormalities. Eva died unexpectedly about a month before Savannah, in February of 2015 even though she'd been showing health improvements. Eva was only 10 and a half months old. 

"Eva was a happy, funny, loving baby. She is missed by many, most of all me," Tessa says.

She started the The One in a Million Baby as a personal blog. It has grown into a resource for special needs parents, families and communities.The blog and pod cast are a way for Tessa to explore her own journey with Eva and also the journey’s of other parents and their one in a million children.

I'd like to thank Tessa for taking time out of her busy life to help others struggling with care-giving, disability, and mourning. She could have gone on with her life and left this all behind.

Such a privilege 

There's one more thing I'd like to say about the lottery my family won: It was hard to watch a child suffer such pain and terror. It was crippling at times to take care of her. I would never wish that life on anyone, but I am grateful that I had the privilege to know such an extraordinary soul and be her father for fifteen years. She taught me that the truth is horrific and beautiful and that fully embracing life takes courage.


Click here to hear Savannah's story: Episode 18.

The One in a Million website is at: http://theoneinamillionbaby.com/

*http://www.birthinjuryguide.org/birth-injury/statistics/


#disability #specialneeds #caregiving #traumaticbirth