Celebrate Happy Hearts

February is known to be the month of love. The month of roses, I love you’s and conversation candy hearts. Everyone knows this. But few people know that February is Congenital Heart Defect Awareness Month. And why would you unless you were personally affected? I was uninformed until my daughter, Harper, was born with a complete AV Canal Defect and Down syndrome, in August 2011. Now we celebrate February 1st by wearing red for heart disease awareness and celebrate World Down syndrome Day on March 21st.

These celebrations wouldn’t have meant anything to me 2 years ago. I was early in my pregnancy in February 2011 and selfishly unaware of Congenital Heart Defect Awareness month. And also unaware that, my newly created daughter, was going to be born with defects.

Harper was prenatally diagnosed with both Down syndrome and a complete AV Canal Defect when I was 20 weeks pregnant via amniocentesis and ultrasound. We chose to continue the pregnancy. We chose to have her heart fixed. We chose Harper. We chose love.

I’m not in the medical field so I will leave the specifics up to the professionals but basically; this heart defect consists of multiple holes in her heart. This defect occurs in two out of 10,000 births and is common in children with Down syndrome.  She was 4 months old when her heart was successfully repaired at American Family Children’s Hospital. During the 4 months before her surgery we worried, cried, prayed, and wished that Harper would survive and then thrive. We were unprepared for the amount of support we received from family, friends, complete strangers, and especially the staff at American Family Children’s Hospital. When given a chance, people want to help and to become aware. During Harper’s hospital stay is when I decided to pay it forward. I needed to payback society for all of the love they gave my family.

I think about Down syndrome almost on regular basis and talk about it to friends, family, and complete strangers often. It’s a part of our daily life but it is not the only part of Harper. She is much more than a syndrome or a defect. Harper has taught so many people that it is perfectly normal to be different. Down syndrome is not scary. Her heart defect was scary but fixable. She is not going to break. Her strength drives me teach others. As her mom, it is my job to help others become as accepting as I have become. That is what Harper’s “defects have taught me.

My family tries to do our part. We are members of the Madison Area Down syndrome Society, took part and fund raised for the Step Up for Down syndrome Walk in October, and my husband is taking part in the Polar Plunge. I can see the questions in stranger’s eyes. It’s ok to be curious. Acceptance is achieved through knowledge. Knowledge is widely spread with events such as the Wear Red campaign or Spread the Word to End the Word among a dozen others.

Harper

We want our community and the world to not be afraid of Down syndrome. Harper is a loving yet sassy 17-month-old girl. We want the world to know that she is a fighter. She survived open heart surgery and will thrive in her everyday life, Down syndrome or not. It’s important to celebrate days and months like Wear Red for Heart Disease Day, Congenital Heart Defect Awareness Month, World Down syndrome Day, or whatever day is important to you. Take a stand, help bring awareness, and celebrate what you care about.

February is the month of love but more importantly the month of awareness. Whether you become more aware of how congenital heart defects can affect someone’s life, you attend a Down syndrome fundraiser, or you just open your heart to acceptance. Celebrate your love on February 14th but help celebrate happy hearts all month long.

Posted in Parenting | Tagged , , , ,
Celebrate Happy Hearts
About Kaitlin Bohacek
Kaiti lives in Verona with her husband Andy and daughter Harper. She blogs about her family at http://smiletomyface.blogspot.com
View all posts by Kaitlin Bohacek

Comments

  1. Kari says:

    Kaiti is a blessing as the director of my son’s daycare. Harper is a joy and my son gets excited to talk with “baby Harper.”

  2. Holly says:

    A beautiful article by a truly beautiful mother. Thank you for sharing, Kaiti. Sending you, Andy and Harper big hugs this Valentine’s Day!

  3. deb says:

    Kaiti writes an excellent blog and this article was very informative. Thanks, Kaiti.

  4. Michelle says:

    So inspiring! I can feel the love in what you wrote. God bless you and sweet little Harper!
    Right now I am watching my son who is just over a week old, sleep soundly in the St. Mary’s NICU. He too has down syndrome and has a few minor heart defects. We are hoping to bring him home soon. I agree that these are not “defects”, but special differences. I only see my sweet little angel when I look at him. :) Maybe we’ll meet through MADSS?

  5. Tara says:

    Kaiti and Harper have taught me so much about acceptance, love and how we are all more alike than different. I am proud to call them my friends.

  6. holly says:

    we love harper too! she’s so lucky to have kaiti as her mom and fortunate to have had such experts take care of her heart.

  7. Cheo says:

    You have written a beautiful, thoughtful, and well-explained tribute to sweet Harper. Thank you! Love to you, Harper and Andy.

  8. Diane Bohacek says:

    Well said k!

  9. Barb says:

    Harper is a very lucky little lady to have such great Parents that are so open about Harper’s life and gives us a window of what they go through on their journey we call “life”. I am a better person for knowing about Harper and will do what I can to inform others. God Bless you Harper & her Mom & Dad

  10. Jacquelyn Landgraf says:

    Very grateful that the Divine Ms. Harper is stealing my heart this February. Thanks Kaiti!

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