Having A Child With Down Syndrome: What Nobody Tells You

kayla-michelle-big-blueberry-eyes

October is National Down Syndrome Awareness Month. This week, I’m featuring a guest post by the wonderful Michelle from Big Blueberry Eyes. She’s mom to Kayla, 8, and Lucas, 3, and is an amazing advocate for kids with special needs. I know you’ll like what she has to say.

This is National Down Syndrome Awareness Month. Eight years ago I wouldn’t have known this, nor would I probably have cared. Down syndrome wasn’t part of my life and honestly, I just never heard much of anything about it. My only point of reference to Down syndrome was from when I was younger and watched that TV series Life Goes On which featured Corky, who had Down syndrome. Sometimes I would notice someone and think to myself that they had the tell-tale facial features that indicated Down syndrome, but I don’t recall ever having any interactions, or communication, with anyone with Down syndrome

Then I became pregnant. I started reading pregnancy magazines which led me to articles and discussion about prenatal testing. I remember thinking I wouldn’t end my pregnancy for Down syndrome, I could handle that diagnosis – although not ever believing that I would really get such a diagnosis. That sort of thing happens to other people, right? Besides, I was 29, doesn’t it happen to older women?

When Kayla was born and they placed her on my lap and I took that first look at her eyes, I just knew she had Down syndrome.

Even though I could tell by looking at my baby that she had Down syndrome, I really didn’t know what that meant. I didn’t know what that meant for her, for us as her parents, for her future, or how we were supposed to raise her. I didn’t know what to think. My mind went blank as the doctor talked to us about the characteristics she had that indicated Down syndrome. When I called my dad to tell him the news he responded with, “So? What does that mean?” I didn’t have an answer for him. I mumbled something about it was like “Corky, you know, from the tv show Life Goes On that we used to watch.”

I learned that Down syndrome was caused by an extra chromosome on the 21st pair. I learned it happens at conception; a little extra material doesn’t split right and there ends up being 3 copies of the 21st chromosome (which is known in medical terms as Trisomy 21, or T21). I learned there is nothing I, or my husband, did to make it happen. I learned there is nothing to prevent it from happening. I learned it is not related to race, religion, nationality, or socio-economic status. I learned about all the potential medical problems that we might have to deal with as a result of this diagnosis. I learned that developmental milestones will take longer to reach. Everything I read seemed to be a negative.

No one told me I was going to take my baby home and love her and raise her and do everything I would have done had she not been born with Down syndrome. No one told me the Brushfield spots in her eyes would make them sparkle and shine and people would comment on her eyes all the time. No one told me she would act like, and do, all the things other babies did. No one told me how pleasant and easy-going she was going to be.

No one told me she would continue to amaze me and I would underestimate what she could do or think or say or learn. No one told me she would go to school and make friends. No one told me how quickly it seemed everyone in the school knew her name and who she was. No one told me what an integral part of our family she would be. No one told me people with Down syndrome are valued members of society.

No one told me how infectious her giggle is, or how much she enjoys playing dress-up. No one told me how much she would enjoy riding the school bus, or how much fun she would have in a body of water. No one told me I would fall more and more in love with this child of mine the more I got to know her.

Down syndrome is not a death sentence. It is not something to pity. It doesn’t mean kids with it should be discriminated against. It is not a burden. It is not unhealthy. It is not bad. Down syndrome is different, but different doesn’t mean bad, it’s just different. Down syndrome is just an extra chromosome.

Down syndrome is not some foreign race of individuals that can’t be identified with; Down syndrome is part of the human race. People with Down syndrome have wants, needs, feelings, hopes, dreams, desires, and goals just like any other person. They are more alike their peers than people realize. People with Down syndrome are included in school and can graduate, hold jobs, go to college, live on their own, and get married. There are individuals with Down syndrome who are self-confident and articulate self-advocates.

I hope that National Down Syndrome Awareness month continues to grow and get more publicity. I hope that people who have no connection to Down syndrome will become more aware of what it is and what it isn’t. I hope that people will realize those with Down syndrome are  just as deserving of courtesy and respect as any people.

The next time you come across a child, teenager, or adult with Down syndrome, I hope you won’t avert your eyes and pretend you didn’t see them. Instead, make eye contact, smile, and say “Hi.” I’ll bet you’ll be greeted with a big smile and hello back.

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  1. by Debi PT

    On October 6, 2011 at 9:14 am

    I’m so proud of you, Michelle! And, of course, proud of Kayla!! You are a beautiful role model for all mothers. I will continue to cherish our friendship and bond for a lifetime. Keep writing, keep advocating!

  2. by Sarah

    On October 6, 2011 at 9:16 am

    Beautiful article!

  3. by patti

    On October 6, 2011 at 11:29 am

    Love this post! I wish it could be printed out and given to every expecting mama in a doctor’s office, after receiving a diagnosis of Down syndrome for her baby.

  4. by tracey - justanothermommy

    On October 6, 2011 at 12:04 pm

    Well written, Michelle! :) Sadly, we don’t run into as many children with Down Syndrome anymore because of the push to terminate pregnancies where genetic abnormalities are present. It makes it that much more difficult for the children who have DS because they are often met by children who actually HAVEN’T met someone like them before! There is a sweet little girl in my daughter’s ballet class with DS that we are slowly making friends with. She also has severe hearing loss which makes it more difficult, but it seems that everyone gets along well while moving and dancing. :)

  5. by Kathleen

    On October 6, 2011 at 12:42 pm

    This was a wonderful written and beautiful post – written from the heart of experience. Thanks Michelle!

  6. by Down syndrome month. | NPSKIDS

    On October 6, 2011 at 9:32 pm

    [...] mom writes for parents magazine and thus being national down syndrome month this is the latest. what nobody tells you. Share this:TwitterFacebookLike this:LikeBe the first to like this post. This entry was posted in [...]

  7. by Jean

    On October 7, 2011 at 6:35 am

    some of us where not so fortunate, I lost my beautiful baby boy before he was 1 month old. DS was a death sentence to not only to him, but the 6% of babies with DS who don’t reach their first birthday. For some, DS does causes health issues. Everyone told me I WOULD take my son home, love him, treat him the same as my other children. And we desperately wanted to. Instead, my heart was broken. My son is also the face of down syndrome.

  8. by Marianne

    On October 7, 2011 at 12:28 pm

    Great article! Jean – I am so very sorry for your loss. You are right, not every baby born with DS survives as heart and other health complications can occur with DS. But I bet that short time you had with your precious boy is time you will forever cherish. We found out what a blessing people with DS are through the birth of our friends’ little boy, and we adopted a little girl with DS. She is loved more than we could have ever imagined!

  9. by Robbie Kay

    On October 7, 2011 at 1:15 pm

    People with Down Syndrome have always been a part of my life. My cousin, Bret who built amazing card houses, loved country music, Snoopy *& the Gang and bowling was born with Down Syndrome. The doctors told his parents to put him in an institution and get on with their lives. I am so glad they didn’t as he enriched the lives of many. I volunteered at the state Special Olympics in high school. I gained so much from my experiences and feel blessed to have had these opportunities. Keep on being a wonderful advocate for your children and those with special needs.
    http://fracturedfamilytales.blogspot.com/2011/10/50-things-about-yours-truly.html

  10. by nathalie

    On October 7, 2011 at 2:39 pm

    What a lovley article. Personally I have met a few people with Down Syndrome and know them to be kind and loving people. Very friendly and always ready with a conversation. I think they’re great!!

  11. by Meriah

    On October 7, 2011 at 5:34 pm

    Great post, Michelle!

  12. by T

    On October 7, 2011 at 11:11 pm

    I enjoyed this article although I do not know anyone with down syndrome. I think not just women with diagnosis for potiential down syndrome with their pregnancys to read this but all pregnant moms.

  13. by Melinda Howard

    On October 8, 2011 at 3:15 pm

    Thank you for writing your article and being an advocate for people like my brother. I am the oldest of six, James bringing up the rear. When he was born 30 something years ago, the doctor didn’t even tell my parents that he was born DS. When he hadn’t lifted his head, turned over from stomach to back, and other milestones at six months, they took him to the pediatrician only to be told that they needed to put him into a home for the disabled. Since I was already attending college, I can only imagine they shed a few tears, but knowing their faith and trust in God, they knew that all would work out to glorify His name. A couple of weeks ago, James sang a special song in the Sunday evening service and was also ordained into the ministry. He has graduated high school, has taken some computer classes at the local college, has held several jobs, one of which is Wal-Mart for the last 8-9 years. He is the most lovable person, always has a smile for everyone to see, rarely gets mad at anyone, and takes care of my parents, 83 and 78. He helps clean the house, even the toilets, for my mom. He even buys the family groceries and often takes my parents out to eat, especially for their anniversary. I really can’t think of anything negative to say about him. He was brought up with lots of love and discipline, as were all of us children. We have a pet name for each other, but that’s another long story.

  14. by Shannon

    On October 9, 2011 at 10:10 pm

    AWESOME post – I love it! My baby with DS is only 8 months – but she is TOTALLY amazing! I wish I had known a year ago just how wonderful she would be – I wouldn’t have been so scared before she was born. Thank you for your incredible post – I could not agree more!

  15. by Amy Julia Becker

    On October 10, 2011 at 6:55 pm

    Thanks so much for this article. I have a 5 1/2 year old with Down syndrome, and I can relate to almost everything you have written here. I have also written a lot about our daughter Penny, and I’ve come up for some criticism by other parents of kids with DS because we haven’t struggled with some of the medical and developmental problems other families have faced. I wonder whether the same is true for you? I want to figure out a way to affirm the value of all people with Down syndrome (or other disabilities) regardless of their IQ/ability/”functionality,” and yet I also want to affirm the possibility that people with DS will overcome expectations. I feel a bit torn as a result, and I wonder if you’ve struggled with the same issue. My book is called A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. Thanks again, Amy Julia

  16. by Leticia Velasquez

    On October 11, 2011 at 5:11 am

    Like Michelle and Amy Julia, my daughter with Down syndrome made me an advocate and a writer. They have been so inspirational for me, “Big Blueberry Eyes” was one of the blogs which inspired me to begin my own blog, Cause of Our Joy, sharing like Michelle does, the unexpected joys of life with a little girl with an extra chromosome. Like Amy, whose wonderful “A Good and Perfect Gift” I have just finished reading, I am distressed by the negative attitudes which surround our special daughters. We write to help the world overcome that negativity which is a result of ignorance. Those who might reject people with Down syndrome simply don’t know anyone with extra chromosomes, and through our writing, we parents give the world an opportunity to share our gifts, our joy, and gaze into those Big Blueberry Eyes.
    My book, “A Special Mother is Born” contains stories from 34 parents of special needs children who were at first distressed at their child’s diagnosis, but now count it all joy.
    Thanks to Ellen Seidman for helping to raise Down syndrome awareness.

  17. by Ella

    On October 13, 2011 at 11:17 am

    I love love love this piece! I hope ‘no-one told me’ (as it’s become titled in my head) will become as well known and shared as ‘welcome to holland’.
    Thank you for writing, thank you for publishing.

  18. [...] can only permit The Survival Guide for Rookie Moms to reprint this short excerpt. Please do head over to Parents.com to read the rest of my [...]

  19. by Jenn

    On October 14, 2011 at 9:31 am

    Beautiful article & so true. My daughter Sophie is 10 now & has down syndrome. She is the oldest of my 3 children. When we found out (1 day prior to her birth) I wondered all the same things. 10 yrs later she still amazes me daily on just how “handi-capable” she is!!!

  20. by Sam

    On October 14, 2011 at 4:22 pm

    Thanks for writing your article. I grew up with an uncle with Downs so I have been around it my entire life. You couldn’t have met a more wonderful, caring person. He was in the Special Olympics, fell in love, and a huge extended family that loved him and have now been missing him for the past 2 years. Give your daughter a huge hug. I miss my uncle so much still!

  21. by mia

    On October 14, 2011 at 9:56 pm

    Thank you so much for your perfect article. My daughter is 10 years old and she is the most faithful, kind and funny person in our family. She has enriched our lives beyond wildest dreams and has made me such a better person! God has a plan for us all!

  22. by karyn

    On October 19, 2011 at 7:50 pm

    I’m going in for the nuchal fold test in a week. This was a wonderful article to read in preparation. I no longer feel nervous! Thanks!!

  23. by Marilyn

    On October 20, 2011 at 9:43 am

    Fantastic article! As a mom to three VERY interesting young women who all happen to have Down Syndrome, I TOTALLY related to this article! Our family has been made SO much richer just because the girls are in our lives. I can’t imagine life without them. On the flip side, there is POSITIVE stereotyping too–like when people make comments such as “They are all so loving. They are all so sweet.” On the surface, these well meaning comments are nice. But (not to be a buzzkill here), I always correct the person who says these things. My girls are all completely different from one another–as ANY human beings are! They are certainly NOT “all” this or that. The only thing they ALL are (as are all our other kids) is a BLESSING.

  24. by Christine

    On October 20, 2011 at 10:56 am

    Beautiful! Thanks for sharing your experience, as more people should understand that DS is not a horrible diagnosis. As it is, 90% of babies diagnosed prenatally are aborted. Such a tragedy.

  25. by Penny

    On October 20, 2011 at 3:18 pm

    Wonderful article Michelle – you always have such a way with words! I wish too someone had told me all of that when Madison was born and I wouldn’t have spent so much time worrying and more time enjoying her being a baby.

  26. by Tina

    On October 20, 2011 at 8:11 pm

    Couldn’t have said this any better myself!!! Wonderful article!!!

  27. by Trina

    On October 21, 2011 at 5:43 pm

    I just want to let you know how thankful we are to have someone who are in are shoes. We also have a daughter name Kaylah who has Down Syndrome Thanks for informing the world. Our Kaylah is just a jewel!

  28. by Kathy

    On October 25, 2011 at 7:10 pm

    Right on, Michelle, you put many of my feelings into words.

  29. by Michelle

    On October 28, 2011 at 8:22 am

    This article is so on point … I completely agree!!!

  30. by Samantha

    On December 7, 2011 at 9:42 pm

    This is amazing! I am 20 and right before my 20th birthday I had my wonderful daughter who has down syndrome, she’s wonderful!

  31. by thatguy

    On January 5, 2012 at 9:03 pm

    It’s not easy on anyone. Except for the barber. “I’ll have one Pete Rose, please!”

  32. by deborah

    On January 5, 2012 at 9:18 pm

    I remember when I was pregnant with my daughter and going in for the testing for everything. I really wasn’t worry, because I knew that I would love her (or him) just the same. And I do. She does not have DS, but as a first time mom, there are still things I am learning that I never even though about.

    DS is something that I believe that all mothers should read about, and I would hope that if a mother to be learns that her baby has DS before her due date, that there are classes you can take. And you are right, DS is not bad, it’s just different.

    I am looking forward to have more children, by adoption and naturally, and I wouldn’t care, in a negative way, about their medical conditions. I would learn all about.

  33. by olivia

    On May 22, 2012 at 11:11 am

    This made me cry. What an amazing mother you must be. I am so glad that you realize you jabbed three amazing, PERFECT children.

  34. by olivia

    On May 22, 2012 at 11:12 am

    2 lol. Sorry

  35. by tk ellis

    On May 26, 2012 at 4:45 am

    Yes, I do understand parents with DS children. You see, I am a special ed teacher. The most loveable children in the world are children with DS. Unfortunately when I worked in public schools, DS children are automotically placed in special ed classes. I must say to parents this is the way it is in public education. Most parents try to place their children in a private school, unfortunately these private christian schools do not want children with DS . I have worked in a private school where the word ‘special needs’ was not an issue; they are nothing but lazy. These are administrators with a strong christian background. Unfortunately this is society and it was very troublesome to me. This school did not not want any children with any disabilities. I was told by one administrator ,’that if he had known what this child was like he would never had approved her to come to this school’. Yes, this is the way it is. I left the school. Today most not all DS children are homeschooled because DS children are teased by ‘normal students’. It is a hard life for children in education with DS. What has to be changed is the educational system for these children. MOST DO NOT CARE!!!!!

  36. by Sarah

    On August 29, 2012 at 3:06 am

    Thank you! For all the encouraging words. Just had my little girl Jenna on Aug 27 to our suprise she has DS. I plan to love and care for her just like her older brother.