Mom of the Week: Having a Special Needs Child Makes Life Extra Special

Every mother prays for a healthy baby.  And no mother expects that prayer not to be answered. Cathy Webb was no different.  She assumed her pregnancy would be normal.  Perhaps she would experience morning sickness, swollen ankles or a pinched nerve. Other than minor aches and pains, she would have a smooth pregnancy, labor and delivery. Then in her second trimester, she went to a routine doctor’s appointment with her husband.  That’s when everything changed.  She discovered her daughter would be born with Down syndrome–a condition she knew only by name.  Her doctor told her to get an abortion.   After she got over initial denial and depression, she was determined to learn more about the genetic disorder and give her child a happy, healthy life.  She didn’t stop there.  She educated others. She started with her family, then her friends and then her community.  Now, she’s telling the nation everything she knows through her organization Shining on Down Syndrome.  Because of her courage and commitment, she is Diary of a First Time Mom’s Mom of the Week.

When did you find out your unborn child was diagnosed with Down syndrome?  What was your initial reaction?  I was in my second trimester when Victoria was diagnosed with Down syndrome. It was discovered after a routine amniocentesis and confirmed by a perinatologist with the use of ultrasound.  Initially, I was in denial after the diagnosis.  I knew the results were false positive, and the doctors were wrong.  Everything was going to be okay. At that time, I didn’t have any knowledge at all of Down syndrome.

Six-thousand children are born with Down syndrome each year.  That’s 1 in 691, which makes it a common condition.  Yet many mothers are still surprised when they receive the news.  Why do you think that is the case?   When my daughter was diagnosed,  the occurrences of Down syndrome was not that common or the diagnosis was not reported as it is now.  Although I was of advanced-maternal age (35), I never thought it would happen to me.  I am an optimist, and this case was no different.  I had normal delivery of a healthy baby boy– full term, no complications.  Why would this be any different?   But in life, we must overcome many obstacles that are placed in front of us.  We never expect or never know when problems will arise.  These challenges always happen to someone else.  So, I think many mothers are surprised, because they never expect anything except a normal pregnancy and delivery of a healthy child.  Also mothers are surprised because it was once believed that Down syndrome children were only born to mother’s of advanced maternal age.  Younger women didn’t think it was possible.  But it is.

Down syndrome is hereditary in only 1% of cases.  But most people, including myself, think it has to run in your family for you child to be diagnosed with the disorder.  Did you think this as well?  Did it run in your family? There is no genetic evidence of Trisomy-21 in either my husband’s or my family.  Although I do have a third cousin by marriage on my mother’s side, I am not aware of any other family members with Down syndrome.

How did you educate yourself about Down syndrome? When Victoria was diagnosed, I immediately turned to my OB/GYN for answers and guidance.  I was stunned with the lack of knowledge and lack of compassion I received.  When your health care provider tells you that a child with Down syndrome will never amount to anything and will be a burden for the rest of my life, it devastates you.  He encouraged me to get an abortion.   It was only after reaching out to our local Down syndrome organization that I received a positive outlook on what to expect while raising a child with Down syndrome.  I spoke with a parent liaison whose son was 13 at the time.  It was comforting to hear from another parent who experienced the journey which I was about to embark on.  I also searched the Internet for information, but I only found outdated material from the 1970s.  I searched the library and ended up with the same results–outdated research, disheartening statistics and a gloomy outlook.   I decided to disregard those findings and become educated with more current information through our statewide Down syndrome organization, conferences and a social worker from the state’s early intervention program.

Why didn’t you change your doctor?

Did you receive a lot of family support in the beginning?  My husband and I decided not to share the diagnosis with family and friends until after her birth.  Both our families were very supportive as they are now.  I asked them to treat her like any other child in the family, and they do!  I send them pictures, articles, website addresses and any other pieces of information I came across to help them learn more about the disease.

Why did you decided to create a support group for parents of African-American children with Down syndrome? I started the support group to share resources and experiences with other African-American mothers.  Then I realized there was a need for awareness in the African-American community nationwide.  I wanted other parents, caregivers, teachers, family and friends to see our children as we see them–smart, loving, caring and mischievous.  I thought we were the only Black family in Georgia with a child with Down syndrome, and other families thought the same thing.  It was only through chance meetings in grocery stores, malls, etc., that I ran into someone else that had features like Victoria’s.  Sometimes I’d meet someone who said Victoria looks exactly like their niece or sister.  They were just as surprised as I was about African-Americans with Down syndrome.

Your middle child was diagnosed with Down syndrome.  Were you fearful about having more children with the condition? No. I have to admit that we thought long and hard for two years before deciding to have another child.  The more I learned about Down syndrome and talked with other parents with younger siblings, the more I felt comfortable about our decision to have our third child.

You were in need of support at one time.  You even called in Super Nanny.  Talk about that experience.  

Despite the initial stress, I read on your blog that having you daughter was a big blessing, not a burden.  Please explain.  Victoria has been a blessing to our family, because of her genuine, unconditional love.  She makes you smile, laugh and cry all in the same day. Because of her unconditional love, I now see other special needs children in a totally different light.

Talk about your daughter.  What do you love most about her?  What is the best part of being her mother? There is so much to love about her.  What I love most is her charming smile that melts the heart of everyone she meets.  The best part of being her mother is having her for a child.  I love her sense of humor and the practical jokes she plays on everyone.  I love celebrating each one of her milestones.   I love it when she holds my face and says, “Mommy, I love you”.

What is a typical day like caring for your daughter?  What type of medical care must she receive? A typical day caring for her is like a typical day caring for any child.  Some days are more challenging than others, because she is developmentally one age and chronologically another age.  She is treated like my other children around the house.  She has chores, computer work and outside play time.  She’s held accountable for what she does.  She is definitely not a morning person, so our day starts with us not being friends.  She loves riding the school bus, because her best friend since preschool rides the same bus.  Her best friend also has Down Syndrome.  They are partners in crime and very mischievous.  After school, she has a snack and starts homework.  An hour later, her older brother comes home, and they “wrestle” for a while and then he’s off doing his homework.  After dinner, is quiet time.  She still hasn’t grasped this concept, because she talks and sings.  After that, it’s bath time and off to bed!   I am so fortunate not to have any medical problems with Victoria.  She is healthy, a little overweight and developing physically like a normal pre-teen.

What advice would you tell new parents with a child diagnosed with Down syndrome?  One of the reasons I started the support group is to educate new parents about the endless possibilities for their child.  I would tell a new parent to seek out other parents, and not just health care providers, for answers. I want them to know that a diagnosis takes you on an emotional rollercoaster.  As a new parents, they may experience denial, guilt and depression.  I will tell them that child with Down syndrome develops just like a normal child.  It just takes them a little longer.

What has your daughter accomplished thus far?  What are her dreams for the future? Victoria has excelled in school. She loves to swim, dance, play tennis and bowl.  She loves to sing, and I use that term loosely.   Her dream is to become a ballerina or as she puts it, a “children doctor”.  She wants to date, have a boyfriend and get married.

How do you want other people to see your daughter?  What must be done for that to happen?  When other people see her, I want them to see a beautiful young lady with many talents and abilities. I want them to glance and smile at her and not point and stare.  I want them to see her beautiful brown eyes gleam. I want them to see her joyful eyes and not show pity in theirs.  I want them to see her as a future contributor to our community and not a burden to our society.   I want them to see here just as she is–a bright, fun-loving young lady with endless opportunities.   By bringing awareness about Down syndrome to families, friends, teachers, caretakers, medical professionals and our community is what needs to be done for this to happen.  We are more alike than different!   You can catch up with Cathy and Paige online.  Click here to like her Facebook fan page, Shining the Light on Down Syndrome and here to follow here on Twitter.  Meanwhile, meet Paige!

Hey DFTM members, how did you overcome a challenge in your pregnancy?  Are you raising a child with special needs?  If so, where do you go to find support?  How do you make your child feel normal–if there is really such a thing?