New Definition of Perfect

I’m honored to have my friend Jen Curley guest post today about her daughter Emmaline Kate, who was born with Down syndrome. Like my friends Jessica and Paul, Jen and her husband Nathan didn’t know their daughter would be born with DS. Like Jess and Paul, they never imagined that they would go down this road. But now that they are over five years down it, Jen says, “The future is a good place to be. I definitely wish I wouldn’t have been so afraid of it when Emmy was born.”  Jen is a teacher by trade and currently homeschools Emmy and her siblings Jacob, almost 10, and Gabrielle, 8. (She is also my very favorite Usborne books consultant!) Her hubby Nathan serves our city as a police officer.

I was living my dream life, married to my kindergarten sweetheart, mother to our two perfect children and pregnant with another sweet baby.  How was I to know that on February 21st, 2007, our lives would change in a way we never anticipated?  Labor and delivery were perfect and after just a few pushes, Emmaline Kate joined the world.  My doctor and all the nurses oohed and aahed over how perfect she was, but I could tell something was different from the moment I laid eyes on her.  A look flashed in her eyes, and at that moment, I noticed a resemblance to my niece, who has Down syndrome.  When Emmy was taken for her evaluation by the pediatrician and everyone else had left the room, I mentioned my concern to my husband.  While we were both suspicious, nothing could have prepared us for the bombshell we were about to receive from the pediatrician.

I don’t know that anyone is ever ready to hear the words “Down syndrome” in regards to their newborn baby.  Nor were we prepared to hear that our precious girl had a hole in her heart, along with several other health complications.  In the 30 years that I’ve known my husband, I can only count a handful of times that I have seen him cry.  After receiving Emmaline’s diagnosis of Down syndrome, we held each other and shed countless tears.   While we loved this sweet baby, we were also grieving the loss of the perfect child we had waited 9 months to meet.  The baby we had dreamed of was not the baby we got and honestly, we weren’t quite sure what to do with her.

The pain and grief we felt in those first few months of her life seem like a distant memory now.   I wish I could go back and tell myself that things would be okay.  I wish I could go back and tell myself that things will get easier.  I wish I could go back and tell myself that life resumes a new normal.  I wish I could go back and tell myself that my definition of perfect would change.

Emmaline is now an active 5-year old and in kindergarten.   She loves to play with play-doh and blocks.  Her creativity and problem-solving skills are amazing.  She loves to put on puppet shows.  She makes friends wherever she goes and is so sensitive to the feelings of others.   She is a heart-surgery survivor and one of the strongest people I know.

Who knew that someone so small could change my perspective on having the perfect life?  Emmy Kate filled a hole in our family we didn’t know existed.   She made us appreciate the little things in life and value what is really important.  She continues to bless our family each and every day.   I couldn’t say it five years ago, but I am amazed at God’s goodness in providing us with a child that had a little something extra.  It was just the something extra we needed to truly make our family perfect.

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Could you have loved that post any more? Thanks so much for sharing your girl with us, Jen! She’s such a rock star, and so are you!

Get your share on! It’s Down Syndrome awareness month – please share this post with a friend!

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13 Replies to “New Definition of Perfect”

  1. You are an AWESOME writer Jen!!! So proud of you! What a fantastic article! Hugs to you and your family. Jessica

  2. Love you, Jen C! You are the one who initially introduced me to Mommin’ It Up, and here you are. You have a beautiful family and a beautiful story – I love your description of the new definition of perfect.

  3. Fantastic post, Jen! You so perfectly described the feelings of us parents with children born with ANY birth defect, not just DS.

  4. What a beautiful love story of your family and God’s grace. I have a 14 year old severly handicapped grandson, Zac, who is the joy of my life. You said it so well, he also “filled a whole in our family we didn’t know existed”. Thank you so much for sharing.

  5. Wow, Jen, that was beautifully written! And, what an awesome testimony to how truly blessed we are to be raising a child with Down Syndrome. I hope you’ll be a mentor for a new family in our area. Loved this!

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