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  • September 03, 2019 12:09 PM | Anonymous

    Just His Sister
    By, Torri Attebury

    Mia was prenatally diagnosed with Down syndrome via amniocentesis. Besides possible medical complications, my biggest concern was her older brother, Nathan.

    Nathan was 3 ½ and had just started preschool. We had told him he was going have a little sister a few weeks prior to Mia’s diagnosis. His biggest worry about being a big brother at that time – “where was she was going to sleep?” After her diagnosis, though, my biggest worry was if Nathan would know she was different. Would he even like her? What would their sibling relationship look like? Would he be able and willing to take care of her when we were gone? Would he defend her from others? How would we tell Nathan his baby sister would be different than his friends’ baby siblings?

    As part of the preparation for Mia’s birth, I reached out to the Down Syndrome Association for Families (DSAF). I was placed in contact with a DSAF First Call mom who had a prenatal diagnosis with her second child as well. I met with her while I was still pregnant and after Mia was born. She supported me and gave me advice on how to prepare our family for life with Down syndrome. She suggested the book, “We’ll Paint the Octopus Red,” by Stephanie Stuve-Bodeen, as a way to tell Nathan about his sister’s diagnosis.

    We read, “We’ll Paint the Octopus Red,” to Nathan. He didn’t understand what Down syndrome meant. He understood he was going to have a baby sister, though, and that Grandma was going to come stay with him while we were at the hospital. When asked for his opinion on what to name his sister, he said, “Devious Diesel.” Diesel is the name of one of the characters in the “Thomas the Tank Engine” stories who sometimes tricks Thomas. Thomas and his friends include Diesel even though he is a diesel and they are steam engines.       

    Mia was born on a Friday, she was cleared by the NICU team within 10 minutes of birth, and we left the hospital with Mia on Sunday. Nathan was most upset he didn’t get to spend more time alone with Grandma.

    From the moment we brought Mia home, her Nathan has been there for her. First, trying to figure out how to play with her. He built train tracks around her and would wait for “Hurricane Mia” to destroy them. Now, it’s how to keep her out of his room.  

    As a mom, I have loved watching their relationship grow. When Mia was about 8 months old, I was wrapping Christmas presents. Nathan was diligently writing name tags. Mia wanted his attention. She rolled over and grabbed a wrapping paper tube and hit him with it. He yelled “Mia, stop!” She laughed. Then he smiled and laughed! In this one moment, my fears of their relationship disappeared. She was going to stand up to him, annoy him, play with him, and love him. He would do the same in return. 

    Now, Mia is a preschooler and has proven to be a strong, outgoing, and opinionated little girl. She tries to sneak into Nathan’s room to play with his toys when he is not looking. She will convince him to dress up as a fairy ninja. She will persuade him to do what she wants with a smile and a giggle. Her favorite part of the day is picking Nathan up from school. She waits until she sees him come out the door and then runs up and hugs him. She high fives his friends and teacher. He then takes her by the hand and walks with her back to the car. She has her devious moments with him, but mostly they love each other. To Nathan, she isn’t a sister with Down syndrome, she is just his sister. #JustASister

    Step up for a great cause and support siblings just like Nathan and Mia by participating in the 2019 Step Up for Down Syndrome Walk on October 5. Your generosity will help change lives.

  • August 29, 2019 10:30 AM | Anonymous

    Learning Through Lily
    By, Tracy Kadavy

    I wish I could go back in time and give myself a pep talk when I was a scared and worried expectant mom sitting in the fetal maternal specialist office. I was swallowed up by what I thought was devastating news that our unborn daughter had Down syndrome.  I didn’t realize at the time that I had actually just been given the greatest news of all time. News that would forever change the course of my life for the better.

    If I get a hold of that magical time machine this is what I would tell myself:  

    I know this news is unexpected and you are in shock and disbelief and can barely see through your tears. That is a normal reaction when the life path you are on suddenly changes directions. You have to take a deep breath and allow yourself to be open to a bigger, brighter plan around the corner. I will be honest; it will take some time. After you grieve the family you thought you wanted, you will start to celebrate the family you needed. Your family will be changed in ways you never thought possible.

    Go ahead and allow yourself to enjoy your pregnancy. Agree to have a pink princess baby shower for Lily instead of declining one because you don’t want anyone to feel awkward. Believe me you will regret that later.

    Go ahead and meet your new neighbors on your new street. Not only will they support you, but one will be the first nurse to greet your daughter in the NICU.

    I know it is impossible believe all of this as your well-meaning fetal maternal specialist bumbles through trying to explain what Down syndrome is with random stories of all the people he knows with an extra chromosome. The only saving grace from this appointment will be the big, white binder from some local organization called the Down Syndrome Association for Families of Nebraska

    Sure, some of your legitimate worries and challenges will come true – an all-or-nothing lifesaving heart surgery at nine weeks, oxygen for a year, airway and feeding issues, hypermobile joints, and leg braces. But let me tell you, those medical complications will resolve, and the challenges will make the accomplishments so much sweeter. Many of the irrational fears running through your head will not come true and in fact will have the opposite outcome.

    Don’t worry that Lily will be shunned and snickered at in public. The biggest challenge in your public appearances will be controlling the mobs of fans and remembering the names of everyone who knows her. You will wonder sometimes if you need to hire an agent for your star. No one will remember your name. From now on, you will only be known as “Lily’s mom.” A title that will mean much more to you than the doctorate you earned.

    Don’t lose sleep about Lily not being able to walk for over two years. Sure, it will take a bit longer, but in in a couple of years you will find yourself chasing after Lily in Target thinking to yourself, “That physical therapy worked a little too well.”

    Talking? Don’t worry about that either. Lily walks up and talks to everyone she meets. And when she gets sassy and demands Barney on the kindle, you also question the Catch 22 of the excellent speech therapy.

    School? Not a problem. She will run out to the bus and barely look back to say bye as you are crying about her maturity and independence. Don’t waste your time and tears worrying if your daughter will be able to learn. Lily will come home from Kindergarten after the first week and tell you she is bored with learning preschool stuff.

    I know you love taking Jayden to music and swim class, the zoo, and museum, and you assume this is not in cards for your unborn daughter. You are convinced Lily won’t be able to do the things your typical child is able to do. What an unbearable thought. Shhh. I’ve got a secret to tell you. The child you are carrying with that extra-talented chromosome will not only participate in music and swimming, but she will sign up for cheer, dance, t-ball, and theater. In six years, you won’t be heartbroken because of the lack of activities, you will be heartbroken because there are not enough days in week for all the activities.

    And don’t think about giving up family vacations. By the time Lily is five, she will have a couple stamps in her passport taking her on journeys to swim with dolphins and sea lions. Something you didn’t do until you were in college.

    Friends you say? Lily will have friends of all ages, races, and beliefs. She makes friends and melts hearts wherever she goes. I will challenge you to find a more extroverted child than Lily.

    Will her siblings like her? Jayden and Brynn adore, protect, and help Lily on the bus, at school, search for glasses she lost for the hundredth time, tuck her in at night, and watch her perform in front of 2,000 people at the Lied Center. They will laugh and play, and be better people because of Lily.

    I assure you every day will be a gift and a joy. You will grow as a person, mom, advocate, and friend. Right now, you don’t think you can be a parent of a special needs child, but that will all change when you open that white DSAF binder and make that first call. The uncertain pregnant mom you feel like today will quickly be transformed into a proud, fierce Mama Bear. Your grief will resolve and your heart will be full. You will never look back at the tears of sadness you feel today. You will only look forward to the tears of joy you will feel tomorrow.

    Hang on, you are in store for a wild ride!

    To support moms just like Tracy and their beautiful children like Lily, join us for this year's Step Up for Down Syndrome Walk on October 5, 2019. Every  donation makes a difference and an impact on a local family of a child with Down syndrome. 

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