Shauna’s Story

I learned of London's diagnosis on the day she was born. It was early Sunday morning. Just the day before, my husband and I had moved from Lubbock to a house in a nearby town. I was excited that all the heaving and hauling of boxes paid off and put me into labor!

My pregnancy was pretty typical - the doctors never saw any signs that anything was wrong. They didn't even catch her heart defect. When I first saw my daughter, I thought she looked just like me when I was a baby. She had the fattest cheeks; she was so beautiful. I can still see her face perfectly in my mind.

The mood of the doctors and nurses immediately changed when they saw her. Suddenly, no one was joking around. The room was very still. I knew something wasn't right, but I wasn’t sure exactly what was going on.

About twenty minutes later, our pediatrician showed up still wearing his church clothes. I knew something was serious-- otherwise he wouldn't have rushed up to the hospital like that, especially not in a suit. He examined her for a LONG time.

Then, he rolled his chair up close to me and said, as he patted my hand, "I think our London has Trisomy 21, Down syndrome. We won’t know for sure until we do some blood work, but I wouldn't be telling you this unless I was 95% sure this is what we are dealing with here."

“There are certain grotesque features associated with Down Syndrome,” he told me. “Upward slanting eyes, a flattened nose, a small mouth…”

He actually called them grotesque features. That word still resonates in my mind. I told him that my baby did not have Down syndrome and he needed to go ahead and go to church and pray for her. I thought if I denied it, it would go away.

It might sound superficial or vain, but the first thoughts that passed through my mind weren’t pleasant. I thought she wasn’t going to be pretty, that she wouldn’t ever learn to read, that people were going to make fun of the way she talks, that she would be overweight. I worried that her sister, Saylor, would never experience what having a "normal" sister is like. I thought my new baby and I would never have a mother-daughter bond. I even wondered if the name we picked for her, London, would even still fit her!

All of those thoughts are wrong, but that was my warped knowledge of what Down syndrome was. I didn't know anything - and my doctor didn't have a very uplifting way of telling me about Down syndrome, either. He told me she would never breastfeed. He had a long list of all the things she would never do, of all the things that she would be incredibly slow in learning, but not a word about all the things she could do. He was wrong, too.

I hope that one day doctors will walk in with a smile on their face and say to the new parents of Down syndrome babies, “You are very lucky! You will be blessed with a child that will show you what real love is.”

That is what they should say.

Down syndrome is a chromosomal disorder that affects cognitive ability and also causes many anatomical anomalies that will lead to increased risks of having other diseases. It is also called Trisomy 21 because it is the 21st chromosome that is affected. Our chromosomes are duplicated, but what basically happens with Down syndrome is that the 21st chromosome gets an extra copy, so there are 3. There are also different types of Down syndrome, but Trisomy 21 is the most common, occurring in 1 of about 800 live births. When I learned that statistic I was shocked, because 1 in 800 sounds relatively common. I wanted to go buy a lottery ticket-- maybe I should have!

After awhile, I had time to process what was going on. When I finally realized that my baby really did have this condition, I started asking God why. Why me, why now, what am I supposed to do with this, what is your plan...blah blah blah. My husband Levi and I sobbed in the hospital bed together. We were mourning the child we were expecting to have. I would not equate it to the mourning of actually losing a child, but it did feel like a great loss.

I remember telling my family in the hospital that day, "One day we are going to wonder why we were so sad this day." Because deep down under all the sadness there was a peace.

It was God telling me to calm down and get a grip - this is going to be a good thing. So, by the end of my hospital stay, I put my big girl panties on and realized that if it didn't happen to me it would have happened to someone else and that wouldn't have been fair, either. Actually, it didn't happen to me - it happened to her. She is the one that has to work harder than everyone else.

I got over it and got to work studying on how I could improve her life. I am a member of a local support group in Lubbock called B.U.D.S (Better Understanding of Down Syndrome). I immersed myself into the world of therapy and found out about ECI (Early Childhood Intervention). London needs extra help learning to do things other kids do naturally, like talking and walking. For the past eighteen months, I have taken a day off work every week to participate in these therapy sessions.

Sometimes, you have to make tough decisions. It is very important for London to have consistent language models everywhere, so I need her babysitter to accommodate and participate in her therapy. I love London's babysitter, but she doesn’t want ECI coming into her daycare because she’s afraid it might disrupt the routine. I can't blame people for not understanding, but they are going to have to understand that I am Mama Bear and I will protect my Baby Bear! So, we have now found a different daycare that embraces ECI and what they do with open arms.

Other than that, Down syndrome doesn't usually come up during our regular day. London is still a baby. She is cute and sweet and makes us laugh, like all babies do. We don't think about DS. What I wish everyone knew about Down syndrome is that people with DS are more like us than they are different.

Still, she is pushing 30 lbs and is not walking independently yet. When I pick that child up she goes limp and she is dead weight on my shoulder. It’s because of another physical characteristic of DS, hypotonia, which means she has low muscle tone. It would make things a lot easier for mom if she could walk.

The great news is that she will walk!

Life is a vapor and our kids will only be little for a very short time. One advantage of being London’s mom is that I get to savor some of those “first” moments a little longer than other parents. How many times do most parents watch the video of their child’s first steps? I get to watch London's first steps everyday LIVE! At least until she figures it out - then she will be off and running, too.

The best part of every day with London is seeing her smile. She puts her whole being into every smile.

It goes something like this:  she pushes her fists down and her shoulders squinch up, her eyes close into their little rainbows and each little tooth shines. Most of the time, it is a silent smile, without a laugh. She could melt any one's heart with that smile. Her happiness is so innocent and true. Yes, I know she is only two, of course she is innocent-- but look at anyone with DS and they have that same smile.


I know London will be close to God. She talks to him daily. This may sound strange, but she will go on and on and on like someone is listening, is understanding, what she is saying. She is just having a conversation with her Father in Heaven...and that is the most special thing to me.

That, and her whole-being smile.