A Mother’s Story – How a Child born with Down syndrome Changed her life!11 min read

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Debra Ruh, CEO of Ruh Global Communications, Founder of TecAccess

Debra Ruh, CEO of Ruh Global Communications, Founder of TecAccess

By Debra Ruh, Founder of TecAccess and CEO & Founder of Ruh Global Communications

Do you believe you were born for a purpose?  I believe we all have many things to accomplish in our lives.  Since I was a little girl I dreamed of being a Mom.  I used to think all little girls dreamed of being a Mom but then I learned that some of my amazing friends had other dreams and realized that was okay because we each get to have dreams and then take steps to fulfill those dreams.  I played with Barbie dolls at an early age and my Barbie would get married and have babies.

Debra Ruh as a child and growing up

Debra Ruh as a child and growing up

When I got older and met my husband to be I told him that I wanted to have a baby.  He was 6 years older than me and was also ready.  I was 24 when we started “trying” to have a baby.  We did not do anything special we just did not use birth control.  It took us several years but finally we learned that I was pregnant.  I was so thrilled and terrified—oh wait, maybe I am not ready—but ready or not we were pregnant.

I am an optimistic person and it never occurred to me that something could go wrong with my pregnancy.  I had a wonderful pregnancy, feeling the baby grow inside me was a beautiful experience and I could not stop smiling and feeling like the luckiest person in the world.  I remember we were going to wait to learn the sex of the baby and when we went to get the sonogram we told the technician we did not want to know. To be honest, I already knew in my bones that our baby was a boy.  I knew because I consider myself very intuitive and a little bit psychic.  So for months I had known it was a boy.  After the sonogram we went into the lobby to leave and my husband Ed looked at me and said, “I know the sex of the baby.” I said, “What? How?”  He said that when the technician looked at the baby she had referred to it once as a gender instead of a neutral term.  I demanded that my husband tell me what he knew but he laughed at me and said, “No. You wanted to wait, so wait.”  Well, being the mature adult that I was…I ran back into the room and demanded that the technician or doctor tell me the sex because I could not wait for 5 months to know if my husband Ed knew.  They laughed at me and told me that we were having a girl.  So much for my psychic powers.  A girl?  Really, a Girl? But I had known for months that this baby was a boy!  It was funny how many plans and dreams I had already made based on the fact that she was a boy.  I readjusted my dreams to have a girl play the main part.  I was thrilled to be having a girl, just not as cocky about my psychic abilities.

A photo of Sara Ruh as a baby

A photo of Sara Ruh as a baby

Sara was born on Easter in the late 90’s.  She was born about 3 weeks before we had all projected her arrival, but she was not premature.  The poor little thing looked pretty rough.  She was bloated from being in the birth channel for many hours and had forcep marks on her cheek; she looked like a little Sumo wrestler.  When they did the Apgar test they gave her 6 out of 10 because they thought she had poor muscle tone.  I remember looking at my precious baby after I had given birth and they had given me morphine. The weirdest thought quietly floated through my mind, “The baby looks like she has Down syndrome.”  I immediately rejected that quiet whisper!  I had never known anyone with Down syndrome and had no idea what those babies looked like; plus, wouldn’t the doctors know?  I did not mention that whisper to anyone.

We named our precious gift Sara Renee.  I wanted to be fancy and make it Renée, but the nurse asked my husband and he decided the fancy way was not necessary.  So we brought our Sara Renee home and fell madly in love with her.  She was the best thing that had ever happened to our family.

For months, we enjoyed this miracle of being parents.  We dressed her in amazing outfits, took her to the park and the zoo, and threw ourselves into parenthood. We showed her off to anyone that would glance our way.  What an amazing time.  A male friend asked me one day, “Can you believe how much you fall in love with these babies?”  The depth of my love for her was surprising.  I knew that I would love her but the depth surprised and delighted me.  We would do anything for this baby.

I took her in for her regular checkups.  During her 4 month checkup one of the doctors became concerned because she was not gaining weight.   He called it “Failure to Thrive,” and blamed it on breast feeding.  I loved breast feeding her and refused to give it up completely so we agreed that I would supplement with a bottle.  He told me that we had two weeks to show she could gain weight or he was admitting her to the hospital and I had to stop nursing her.  So for two weeks we pushed food on Sara.

A photo of Young Debra Ruh and Sara Ruh as a baby

A photo of Young Debra Ruh and Sara Ruh as a baby

Ed took her back to the doctor and she had gained weight.  However, the doctor wanted to do some tests because he was still concerned.  Ed took Sara for additional testing and a few weeks later the nurse called me and said the doctor wanted to see us in his office that day at 2pm.  I asked he why and she would not tell me.  I figured it couldn’t be good news when a doctor demands you and your husband in his office.  I started praying and I asked that small voice inside my head if everything was okay.  That whisper came back saying, “Yes, everything is fine.”

Still, my head told me that when a doctor calls you into his office to talk about test results it’s going to be a scary meeting.  The doctor quickly announced that Sara had a chromosomal syndrome called Down syndrome or Mongolism.  He said, “Don’t worry, she’ll be easier to raise than a child with ADHD.”  We thought, “What?  Seriously? We are comparing disabilities and deciding which child is the easiest to raise?”  He also said we could check into institutions but most people raised their Down syndrome babies at home.  On our way home, my husband started to cry and that scared me more than the doctor’s office.  I had witnessed my wonderful husband cry twice at that time; once when Sara was born and after the office visit.  Marrying this man was the BEST move that I had ever made.  He was and still is the love of my life and the gentlest soul I have ever met.

Our doctor sent Sara to be tested for other issues like heart problems.  We were told she had the strongest heart that they had seen in a long time.  Next we headed to the geneticist.   The geneticist had a team of student doctors with her hovering all over Sara and it was unnerving to say the least.  During the examination she told us that she would probably never walk or talk and that she might get pregnant at 16 because girls with Down syndrome tended to be promiscuous.   I looked down at our precious baby sleeping in my arms and stood up and said, “Okay, we are done!” and left the room.

Debra Ruh and Sara Renee Ruh

Debra Ruh and Sara Renee Ruh

We told our parents but did not tell others for many months because we wanted to have time to come to terms with the news.  I had to once again reset my dreams for this baby.  Maybe she wasn’t going to grow up get a PhD, marry and have 5 children and find a cure for cancer. Darn my daydreams.  I remember driving through a fast food restaurant a few weeks after the diagnosis.  The teenager leaned out of the drive through window and said, “Does your baby have Down syndrome? She is so cute. My brother has Down syndrome.” I smiled at her and said yes and then drove away like a crazy woman.  I did not want her to have Down syndrome and certainly did not want people to be able to look at her and see she had Down syndrome.  What a dumb name anyway—Down syndrome.

My husband and I had to walk the stages of grief and learn to accept the diagnosis.  Plus we still had the cutest most amazing baby in the world.  Nothing had changed, she was still Sara Renee.  We enrolled her in a wonderful early intervention program run by Easter Seals.

Debra with New-born Kevin

Debra with New-born Kevin

Life proceeded on, and 15 months after Sara was born we had a new blessing, her brother Kevin.

When Sara entered middle school (6th grade) she was not reading or writing.  We met with a transition team to plan out the last years of school and consider future employment options.  Since she was not reading Sara had few options.  Someone suggested a job bringing in shopping carts at a grocery store.  I was shocked. Seriously? That is the goal for her to reach for?  Those words haunted me and propelled me to create an IT firm that understood the value of employing people with disabilities.

Kevin and Sara Ruh

Kevin and Sara Ruh

The company was named TecAccess and the majority of the team members were technologists with disabilities.  Sometimes over 80% of our team were represented by people with disabilities.   We focused on ensuring Internet, Communications and Technology (ICT) Accessibility.  When ICT is not accessible to everyone including people with disabilities the digital divide widens.  According to a World Health Organization (WHO) 2011 Study, 1 in 7 people in the world have a disability.  According to the National Organization on Disabilities (NOD), 1 in 3 American Households are impacted, and this community is the largest minority community after women.

Sara Ruh, Chief Inspiration

Sara Ruh, Chief Inspiration

TecAccess worked with multi-national organizations, federal, state, local and foreign governments, universities and non-profits.  Sara speaks at conferences all over the world with me about why people with intellectual disabilities add value to the workforce.  She also chatters on social media using Facebook, Linkedin and Twitter.  She is now in her twenties, can walk and talk and has not made me a grandmother.  She has taught me many life messages and touched the lives of many people.  TecAccess merged with SSB BART Group, a former competitor that offers the same type of services and is also committed to employing people with disabilities.  Sara has become a spokesperson for them and continues to add value in the lives of the people that she meets.  She is a global leader and advocate for people with disabilities.  She has spoken in Qatar, Germany and all over the United States.  She has also won awards for her work including the Top 40 under 40 in Richmond, Virginia, the Award of Excellence in Advocacy from NorthStar Academy, and the Raby Award for most improved special education student in Hanover County, Virginia.

Sara and Kevin

Sara and Kevin

I have been blessed to be Sara and Kevin’s Mom and with them in my lives all my dreams have come true.  I have also been able to find great love in my life with their father and my husband of over 30 years.  Plus, I have had the pleasure to follow my passion to help include people with disabilities in the global workforce and to be a Thought Leader in the ICT Accessibility field.  I took my passion, joy, heartbreaks and opportunities and helped start a new industry.  Sara is my North Star and she blesses me every single day.

Follow Ruh Global Communications

To follow up on Debra Ruh’s current endeavors, follow her on social media: @DebraRuh or visit Ruh Global Communications

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