Carmen Jones has made it. She’s been invited to the White House to meet with President Obama, started her own successful marketing company, has a happy marriage and plenty of friends – as well as a spinal cord injury that has required her to use a wheelchair for more than 20 years.

In 2001, Carmen’s first child, Marcus, was born with disabilities.

I Just Never Thought That This Would Be My Life
“When Marcus was born, I had been disabled 15 years. I was really used to my life and how it had changed and managed quite well, thank you very much!” Carmen laughs. Then her voice gets more serious.

“I knew ahead of time that he had a cleft lip, but that’s all I knew. And I had to wrap my brain around that, so we worked on that. And then it seemed like with each passing week after he was born, we discovered something else was up with him.

“And nothing really prepares you for this, I mean nothing. It is one of those shocks and even though I have a disability, I just never thought that this would be my life. And it was difficult, I mean, I can’t fib. It was very challenging, it was painful, it was emotional."

The New Normal
“You don’t know if your child’s going to die. I would look at other parents who had disabled children when I would be out and about, and I would look at them and I would say, ‘When will it be okay?’ Like, I see them, and their child has Down syndrome, or this child has autism, or this child has cerebral palsy or spinal bifida, and I know initially it’s a shock, but then by the time I saw them, it seemed like everybody had kind of gotten used to their new normal. And I thought, ‘When does it occur to be ok, when is that?’

“I was longing for that, I was like, I just want to get to okay.”

Carmen laughs again, something the lauded entrepreneur does often and easily. She has gotten to her own version of being okay, but she didn’t get there alone.

Hitting Bottom
“One week, I had two really rough diagnoses for Marcus when he was probably two and a half,” she recalls.

“Within a 24-hour period I got two really rough bits of information from different specialists, and it was like a gut punch that wouldn’t quit, like someone had taken a battering ram to me, and it just wouldn’t end.

“I sent an email to some of my friends, like 12 friends, maybe a little more, and I asked them, I said, ‘Okay, I’m spiraling down.’ I could feel myself getting depressed.  I always felt like: we can handle Marcus having a trach, we can handle Marcus having a feeding tube, but I can’t handle it if there’s some cognitive involvement, because that just changes the landscape tremendously.

“I sent a message (to my friends). I said, ‘You guys, please pray for me, because right now I can’t. I’m mad, I’m upset. How could God let this happen?’ And I went there.“I thought, ‘You know what?  I’ve [already] punched the adversity ticket; this is unfair!’ I feel like everybody punches it once, but I said, ‘Why am I punching it twice?’”

Just to Come and Love On Me
“I shared with my friends. They all started to rally. I sent that message at like five in the morning on a Wednesday. That Saturday, my girlfriend took me to lunch and she kept looking over her shoulder. In walked about 10 women. Some flew in from around the country just to come and love on me.

“They took me to a hotel, and those who couldn’t be there, we put on speakerphone. They circled me, they let me weep, they encouraged me, they prayed with me, and I have to say it was like a miracle. I left that hotel different.

“I left not comparing Marcus [to other children], not feeling the weight of all the responsibility of ‘I have to make sure he’s okay.’ All that. I just felt lighter. So that’s when it became okay for me.

Today, Carmen’s family includes five-year-old Natalie. Her adoption took only six weeks.

“The quickest pregnancy ever!” Carmen says. “She’s been a real joy, and my sister says I’ve adopted myself. It’s really great.”

Busy work days are scheduled in three shifts around the children’s routines. Carmen’s husband travels extensively for work, so when Carlton and Carmen aren’t there, Carmen’s parents “fill in the gaps” at teacher meetings and other events.

Still, Carmen says her life isn’t easy.

“With the children, it’s become more of a challenge. It’s not something that’s not overcomeable, but it is something that you have to manage and adjust to.”

Writer’s note: It is In a very short time, Carmen’s humor and kindness made her feel like part of the family here at Disaboom. Therefore, it is with extreme sadness that we note the death of her son, Marcus, shortly after this interview.