Down Syndrome Awareness Month

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Today marks two important dates for my family. October 1, every year, kicks off Down Syndrome Awareness Month. And this October 1, our Annie turns 18 months.

Happy Down Syndrome Awareness Month! Our family is happy about Down Syndrome, we want to share it with you, and we want you to spread the word in turn!

Eighteen months is not that long. I never imagined that in just eighteen months I would acquire such awareness. Down Syndrome Awareness, yes. But more importantly, awareness of what really matters in life. I have learned more about life and love in the past eighteen months than I had in my twenty-nine previous years. I have learned about the world, the kind of person I want to be, and the kind of people I want in my life. I have acquired more knowledge in these eighteen months than in 20+ years of schooling. I have learned about acceptance, patience, and a mothers’ love. I have learned that God’s gifts are great and mysterious, and He really knows what He’s doing. I have learned these things not entirely because of an extra chromosome; but it’s appearance sure had a lot to do with the unexpected gifts in my life for which I am eternally grateful.

Eighteen months is not that long. I would never dare claim to be an expert on Down Syndrome. I could list facts and statistics from my research and important information about my daughter’s diagnosis. But I hope to bring Down Syndrome Awareness this month, by the only way I know how: Sharing our Annie with you.

Eighteen months ago, as my tiny one-month premature baby girl was laid on my shoulder for the first time, I immediately knew something was “wrong.” The pain I felt in those moments when I realized that my life would never be the same, that starting my family wouldn’t be what I had dreamed; I thought that pain would never subside. How could it with a daughter with Down Syndrome? What would we do? What would she be able to do? How could we cope with this in a foreign country? Would she be healthy? Would she read? Would she walk and talk? Would she ever get married? Work? I hate to admit it, but I even wondered if she’d be beautiful. These questions flooded my brain. The fear broke my heart. I didn’t want the challenges attached to having a child with special needs; but even more I didn’t want her to suffer, be made fun of, be treated differently. I was scared.

How ignorant I was. There was nothing “wrong” with my gorgeous baby girl, just different. And when we look past the labels that society has so wrongfully placed on our children, we can realize it’s just a difference and aren’t we all different anyway? Having an extra chromosome isn’t that different from me having curly hair or blue eyes. It’s something in our genes that makes up a part of us. It doesn’t define Annie.

What a beautiful journey we’ve had in the past eighteen months. And we have so much more to look forward to – NOT to be scared of.

I didn’t know then that Annie would bring more love into my life than I could have ever imagined. That every time she reaches a milestone we weren’t sure she ever would, my house is filled with celebration, surprise, and tears of joy. That things that I would have probably taken for granted as a mom of a “typical” child (like learning to drink from a straw) are tremendous feats and worth celebrating.

I didn’t know she would make us laugh everyday.

I didn’t know she would have a sign language vocabulary of 25 words by now. I didn’t know she would be able to transform strangers’ bad days into sunshine just by a mere chance encounter. She may not be walking yet, but she sure is getting into things just as much as any other 18 month old. And trying to stand too!

My bet is that not many people know that October is Down Syndrome Awareness Month. There is hardly a doubt in my mind though that they know it’s Breast Cancer Awareness Month. The towers in cities all over the world will be lit in bright pink. In stores you can make donations to the cause. There will be hundreds of thousands who participate in walks and runs. Pink ribbons will adorn clothes and houses and businesses. I am not trying to say that it is not a worthy cause. Of course it is! Women are reminded to go get that mammogram. It is incredibly important that we continue to fight for the cure and have the funds to do so. It is important to ensure that people are educated about breast cancer and to remember for families who have lost loved ones to the terrible disease and for the survivors who have won the long hard fight. With the alarmingly high statistics of cases of breast cancer in the U.S. alone, there aren’t many of us that haven’t been affected by it. I, along with Down Syndrome Awareness Month, celebrate Breast Cancer Awareness Month and applaud the tremendous efforts that bring the awareness throughout the year, but especially in October.

I bring this up only because I had no clue that October was Down Syndrome Awareness month. Not until last September, when five months after my daughter was born with Down Syndrome, I started this blog. I felt foolish. How could I not know there was such a month, for such an important cause?! But then I realized that many don’t know about it because it hasn’t touched their lives. It’s not something like cancer. It’s something that most of society chooses to turn its head away from. Many, sadly, even decide to terminate it from their lives.

I grew up with an aunt who was born with spina bifida. Wherever she goes it is impossible for her physical handicap to go unnoticed. As a little girl on outings with my fabulous aunt, I observed how others reacted to her. They usually turned away trying not to look, uncomfortable, but trying to be polite. Or on some occasions they stared, blatantly and rudely. It’s because, for most people, birth defects and physical and mental handicaps make them uncomfortable. So they turn away because they’d rather not look, they feel bad or sorry for the individuals and their families, or feel guilty that they’re thinking “I’m so glad it’s not me, not our family.”

It’s not until a friend, family member, or yourself has a child with Down Syndrome that most find out about what it’s like to live with an extra chromosome. Not until it’s touched your life. From what I have learned through the small chance of becoming a mother of  a daughter with Down Syndrome is that that extra chromosome really does come with extras one could never dream. And those extras are not the challenges and struggles, but tremendous joy, laughter, love, and pride.

So for today, I’d like you to be aware that individuals with Down Syndrome are not to be pitied. That our families don’t want you to be sorry for us or sad. We want you to embrace us, especially our children. We want you to celebrate their lives as much as you’d want anyone to celebrate your children. We want you to teach your children the importance of treating everyone – no matter how different – equally, and with love and respect. When you see a child or family with a child with Down Syndrome or whatever “syndrome” that makes them different, smile and say “hi,” not because they are different, but because they want to be seen and appreciated in our world as much as anybody else. We’d like you to challenge our children with the same expectations you’d have for any child.

If you learn of a friend or family member or stranger who has just given birth to or been given a diagnosis of a baby with Down Syndrome, do NOT cry for them, especially don’t tell them you cried for them. (This happened to me, and it only hurts more that people you love were sad on the day your child was born) Do NOT say you are sorry. Congratulate them and celebrate with them. Because I promise you, having a child with Down Syndrome is a rare, special, and glorious gift. I have said it before and I will say it always….Having a child with Down Syndrome is like winning the lottery of life.

The love our Annie shares with those around her is tremendous to witness. I know that the world is a better place with her in it. And we celebrate her everyday!

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3 responses »

  1. Thank you for educating us! I was thrilled to have met Annie and you at Mary’s wedding. We look forward to stories about Annie at Pinochle. I am a breast cancer survivor and had no idea it was National Down Syndrome Month! God bless all of you!

  2. Besides getting educated every time I read your blog, it is such fun to see the pictures of Annie. She is SO HAPPY and that reflects her family life as well. 🙂 She can “rock” the “Pebbles” ponytail (for those of us old enough to remember The Flintstones LOL)………..and I particularly liked the picture of her in the chair with the pink toboggan on – too cute!!!

  3. I liked your blog and I trully agree with you.. my daughters name is jazlyn destiny and she has down syndrome also. Jazlyn has been the greatest gift in our life, she will turn 10 this june and believe me you have long ways to go when she starts walkng! It geets better and more fun. She started school at the age of 3me and she has learned a lot and she speaks a little.. but with the sign language they learn its easy to understand them. Congrats and cheris her every day.

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