DIAGNOSIS: Down syndrome TREATMENT: Unconditional Love

We found out we were expecting a child around Christmas this past year (2015).  Excitement and joy filled our hearts and home.  The beginning of the pregnancy went smoothly, and we couldn’t wait to find out if our bundle of joy was a boy or a girl.  Personally, I was pulling for a girl because John’s immediate family is full of boys, so the odds were against us.  And I like a challenge.

 

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For our first ultrasound at 20 weeks, we entered the room anxious, curious, and excited.  About halfway through the ultrasound, the baby turned just right, and surprise, it’s a girl!  Once the ultrasound was finished, the tech left the room to get the doctors to review it, and we immediately began texting and calling family members to let them know the gender.  Then we sat and waited for the tech to return.  And we waited.  And we waited.  While John began to get frustrated because we had other things to do that day (including a doctor visit that was supposed to have started about 20 minutes earlier), I began to get worried.  I’ve watched Grey’s Anatomy.  Long waits are never good news.  Eventually, the tech returned.  With four doctors in tow.  My initial thought was, “huh I wonder if this is a teaching hospital.”  But three of the doctors were looking at me with that “I’m so sorry” look on their faces.  My level of worry grew because if long waits are bad, multiple doctors coming to give you news is absolutely terrible.  Like I said, I watch Grey’s Anatomy.  I know these things.  The head doctor made a halfhearted joke about always having an entourage wherever he goes.  I think I gave a slight chuckle, and then I just stared at him waiting for whatever terrible thing he was going to tell me.  The doctor then proceeded to tell us that they found some concerns on the ultrasound.  He began explaining that the baby’s neck measured thicker than normal and before he could say the words, I knew what it would be: Down syndrome.  I had studied developmental disorders in one of my undergrad classes, and I knew the signs of this particular disability.  He then continued to say that there was also no visible nasal bone and her extremities were shorter than normal compared to her body size.  All of these markers suggested Down syndrome.  I was numb.  My mouth was dry.  My stomach began to hurt.  I remember John saying, “But this is just a precaution right? We don’t know anything for sure?”  And then the doctor hesitated for a bit and said, “Yes, right now it is just a precaution, but with all of these markers together, we’re pretty sure.”

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We were then escorted to a genetic counselor’s office.  The counselor showed us a chart of the odds of having a child with Down syndrome based on the mother’s age.  At age 24, my odds were 1 in 1,250.  That’s .08%.  She then began to calculate the percentage based on the markers they found.  95%.  That percentage is what really nailed it home for me.  Until then, I had been hoping that they were all worried about nothing.  That I’d still have a ‘normal’ child.  But 95% is a pretty reliable odd.

 

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I left the clinic in a state of shock, ready to forget what we had just learned.  While John was full of questions and worry, I didn’t want to feel anything.  In my mind, ignoring the issue was the way to cope.  That changed the next day.  I cried, and I cried, and I cried.  I couldn’t make myself excited that we were having a girl.  I couldn’t bring myself to tell my family.  I had bad thoughts cross my mind of not wanting this child.  And throughout it all, John was ridiculously supportive.  He had had his small freak out the day before, and now he was here for mine.  I had heard it said that parents of special needs children are grieving the normal child they lost.  I didn’t know how true that was.

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The summer camp I work at has a week at the end of the summer for special needs children, and I have volunteered for that week for the past eight years.  I have worked with several children with Down syndrome, so I knew quite a bit about it.  This made me feel more prepared to have my own child with Down syndrome, but it also made me feel bad for being so upset about the diagnosis.  I knew how great these kids could be, and still I cried when I found out I would have one of my own.  I know now that that crying period was absolutely necessary.  I stayed in this state of grief for a week or two, but even after that period, it took me about a month to be able to say the words “Down syndrome” out loud.  Slowly but surely, I came to terms with it and once again became excited about having a little girl.  Down syndrome or no Down syndrome, she would be a part of me and a part of John and we would love her.

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I am so grateful for the technology and knowledge that we have today so that I was able to learn of the diagnosis before she was born.  I was able to take my time coming to terms with it.  Because now that she is here, I can’t imagine feeling upset at a time when there should only be joy.  And oh was there joy.

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So many doctors came to see us in the hospital room after delivery to talk about the possibility of her having Down syndrome.  They entered the room ready to give me that “I’m so sorry” face, but I just smiled and talked to them about the beautiful, perfect baby that I was holding against my chest.  I look at her now, at almost 3 weeks old, and I don’t see a disability.  I just see a perfect baby who needs love.  And boy does she get it.

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I’ll admit, I have cried since coming home with her, but not because I want to change her.  I cry because I know she will face extra challenges.  She will be judged.  It’s the world we live in.  I cry because I know there will be times when I can’t protect her from the challenges and judgements.  But the smiles outnumber the tears.  I am so excited to go through life with her.  To teach her.  To watch her grow and overcome her challenges.  Sure she’s a little different, but who cares?  Maybe it’s just her superpower.

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12 thoughts on “DIAGNOSIS: Down syndrome TREATMENT: Unconditional Love

  1. Congratulations on your beautiful baby girl! Please give that beautiful angel a hug and kiss form the Hinds family at Ratliff! I loved your blog post and look forward to keeping up with her adventures. Sending love to all

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    1. What a beautifully written blog. I KNOW without a doubt that GOD GAVE HER TO YOU BOTH. He knows that she will always need your love, support, encouragement, & protection.
      Love you both!
      Shannon
      aka: Miss Weatherly

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  2. She is so loved already by so many. I can’t wait to see the blessings that God will reveal to you and your family. Such a beautiful baby girl!!
    Love, Spark
    P.S. We want to see more pictures!

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  3. Children are a gift from the Lord, they are a reward from Him~Psalm 127:3 Avalynn is perfect for the purpose God has in mind for her. He couldn’t have picked two better parents to love, nurture and cherish this precious gift! We Love You 💗 The Ware Family

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  4. She is BEAUTIFUL! I cannot think of anyone who would make a better parents for her. I love you and am so happy for you. I am excited about seeing her grow up and learning to use those super powers 🙂

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  5. Kayla, I am so glad you wrote this and shared this with the world. I know and once read that children are given to specific parents because those parents will help them have the best life!! Avalynn is so blessed to have you two as parents and her life is going to ROCK!!

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    1. Kayla your blog is absolutely awesome. But you are an absolutely awesome person. I know of no one that I could be prouder of than you. You made you on your own an what a great job you did. I agree with Aunt Kaye, God makes no mistakes. And he certainly knows you are awesome and I know John is just as awesome. He only gives special children to very special people. And that is you and John. Love you, John and AVALYNN with all my heart. Keep your blog going so we can keep up with this Angel. All my love !!

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  6. Thanks for sharing your intimate thoughts and feelings. Thanks for introducing your beautiful daughter and family. love the pics and heart felt wisdom. Can’t wait for more!

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  7. Your daughter is beautiful and she is bless to have parents who will love her and encourage her down the road of life. Sara Stephens “Daisy”

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