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  • Down Syndrome Awareness: An Interview with Brenda
    Added by My Identity Doctor March 20, 2016
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    Tomorrow is World Down Syndrome Day. While I’m lucky to get to see these two awesome ladies every week when they attend the Special Olympics program I coach, I couldn’t keep their awesome to myself–luckily, they excitedly agreed to share their stories for World Down Syndrome Day! A first for the Identity Doc Blog, we are sharing a two-part interview–today, you’ll meet Brenda, as she shares about her daughter, Holli, who has Down syndrome. Be sure to check back tomorrow for Holli’s interview!

    Brenda, with short dark brown hair and glasses, sits to the right with her arm wrapped around her daughter Holli, 12, who has Down Syndrome as they smile at the camera.

    Hi Brenda! Tell us about yourself.

    Im a 51 year old Winnipeg gal with 3 children and a husband.  Brooke is 22, Kennedy is 19 and Holli is 12, and my granddaughter is 3.   My oldest daughter and my granddaughter live with us.  We feel that we are a super fortunate household to have so many kids and so much action.  The cherry on top is that my mom lives next door.  The kids adore their Grandma and Grandma adores them.  If I didn’t make a tasty supper we can always run over to Grandmas!!!  We are blessed with fresh homemade cookies and soup on a regular basis.    We have a dog and a cat as well and a swimming pool!  Summers are spent in our back yard having pool time and bonfires.

    I took 10 years off to spend at home with Holli and have recently gone back into the work force in a customer service position. My husband,  Ken is a massage therapist working from out of our home.

    What was your initial reaction when you learned Holli has Down Syndrome?
    I gave birth to Holli at home with a midwife.  The midwife did not tell us that Holli had Down syndrome [DS] for a few hours. It was a gift. Holli got a good breast feeding start, even though her low muscle tone allowed milk to trickle out her mouth.  The midwife allowed me 24 hours to bond with Holli before she insisted we go the hospital for further testing.  I remember thinking it was the end of my world.  I loved this baby but how could I handle a special needs child?  How could this happen to me?  What will become of our lives?  I remember reading that the life expectancy of a DS child is 55 years.  I cried my head off at the thought of outliving my child.  My husband said, “What makes you think you are going to live that long?”  I would be 93 years old!  I was so relieved!!!
    I worry about the future, of course.  I worry about Holli being happy. And I worry about Holli’s safety.  Will someone hurt her or take advantage of her.  I have asked my older daughters if they would take care of Holli if something happened to me and they said “yes.”  That makes me happy.
    Now that Holli is older, how have your thoughts changed? What have you learned from her?
    Holli is amazing.  So loving and kind and sweet and stubborn. I have two older daughters that have given me more grey hair than Holli.  She is emotionally stable and always appreciates life.   We have been so lucky that Holli has been healthy.  She has friends and enjoys everything other kids her age do.
    Have you engaged with other parents online? Do you connect with other parents of kids with disabilities in your community, and if so, where have you found them? How has that helped you as a parent of a daughter with Down Syndrome?
     
    When Holli was younger we participated in a few play groups through the DS Society.   Then a group of us would get together once a month or so at someone’s home and play. The kids are all so different.  Holli finds boys too rough and the group didn’t have a girl Holli’s age. I felt the group was more for the parents.  We did try to support each other but in the same way “normal” parents support each other.  I raised Holli the same way I raised my other girls.
    We really enjoy Special Olympics.  It gives Holli exercise and makes her feel special.  These are her sports while other kids are going to hockey and soccer.
    Holli has 2 very nice friends.  She met them in preschool.  The relationships are getting a little tough as the kids get older.  It would be nice to have a friend for Holli with the same, or close to the same personality/capabilities.
    Any final thoughts?

    Holli has been a joy for our family.  The older I get the more I realize how fortunate I am to have Holli.  She is always super happy to hang out with me and I always have a partner to go for manicures and movies with!!!

    Thanks Brenda! I also consider myself fortunate to know you awesome ladies, and exchange a few smiles with Holli every week at Special O!
    Stay tuned for tomorrow’s post, for a fun video interview with Holli as she shares who she is in her own words!
    To learn more about Down syndrome, visit the National Down Syndrome Society, or the Canadian Down Syndrome Society. Learn more about Special Olympics and how to get involved in your area by visiting Special Olympics International.
    Published by My Identity Doctor on March 20, 2016
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