Year: 2012

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 21^st, 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!

Ok, fine, so I ripped that post title off of C.S. Lewis. But I think it’s appropriate.

My friends Jess and Paul were blessed this past spring with a beautiful baby girl they’d been waiting for for years. They were surprised to learn moments after her birth that she has Down syndrome. Joy and her amazing parents and big brother Jay became the inspiration for me to raise funds this year for their Buddy Walk for Down Syndrome team, “Peace, Love, & Joy”. I’ve asked Jess to tell you in her own words about giving birth to Joy, who is now a sweet, smiley 6-month old. Oh – and since Jess references ASL in her story, I should also tell you that Jess is an Instructor of American Sign Language and her husband Paul is an American Sign Language Interpreter.

Our story really begins about six years ago when our doctor told us that it would be almost impossible for me to get pregnant, but six months later we were expecting a little boy. Motherhood was ‘it’ for me. I was so happy with that sweet little boy, that I often caught myself dreaming of my next baby. I wished for a baby girl! One wonderful day when our son was four, I took a pregnancy test and saw two little lines! We were so freaked out and excited at the same time! But by early evening I began to start cramping and Paul and I went to the ER. They didn’t see any heartbeat in the ultrasound, and my stomach sank. The next day we visited my OB for an ultrasound and like a miracle we saw that little heartbeat going nice and strong. I was so happy, I thought for sure my heart was going to bust open!

At twenty weeks we found out we were expecting a baby girl! And the shopping began! Bows, shoes, dolls, tutus and everything pink I could find. My pregnancy was tough, I got gestational diabetes and had to have weekly ultrasounds and non-stress tests. Finally, on April 2 it was time. She was ready to be born. I went in for my repeat c-section and we were so excited!!! In the OR my surgery began, and she was born quickly. Before she even began to cry my doctor took the separation screen down and told us that our baby girl had Down Syndrome. My entire world froze, my mind went 100 different ways, but Paul was cutting the cord, taking pictures and ohhhing and ahhing like a proud daddy. I felt like I was falling through the floor.

Acceptance took time. It took nurses who just rubbed our hands and stroked our hair. It took unwavering family support. It took grandmas and grandfathers who lavished our baby with love. It took friends that listened and didn’t judge. It took our sisters and brothers holding us up. It took random strangers sending gifts and cards. It took a friend who photographed her and showed us her sweet face. It took entire classes of students sending their love. It took loving each other as a couple for better or worse. But most of all, it took seeing our baby through the eyes of her big brother. She was perfect, she was just the way she was meant to be and she was beautiful.

We named her Joy. And she is beautiful! She is strong and sweet. She is now 6 months old! There are so many things she can do! She can roll over, she signs four ASL signs (milk, eat, mom and dad), she is now saying Momma. We are proud and we love her just the way she is!

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Thanks Jess for sharing your story and your beautiful family with my readers! I am so proud to be your friend and thrilled that I get to bear witness to Joy & Jay and their awesomeness!

Did you learn anything about Down syndrome in this post? If so, please share it with someone today!