Annie was at her routine 12-week ultra sound appointment. Her belly just beginning to protrude with a brand new little sister or brother for the newly turned one year old, Liam waiting at home. Each measurement made by the sonographer was met with a smile and nod, until they measured the nuchal translucency. This test measures the clear space in the tissue at the back of the baby's neck. Babies with chromosomal abnormalities tend to accumulate more fluid at the back of their neck during the first trimester, causing this clear space to be larger.
The doctor was called into the room and she shared that this finding could indicate a red flag for Down syndrome. She referred her to a geneticist for further blood work. Together, these tests are known as the first-trimester combined screening and the Down syndrome detection rate is shown to be about 96%.
The next day Annie went for blood work, where the geneticist let her know that they would be screening for a few different chromosomal abnormalities. Every cell has 46 chromosomes. A set of 23 courtesy of Dad and a set of 23 from Mom. Down syndrome, also known as trisomy 21, occurs when a baby has an extra copy of chromosome 21 in some or all of his cells. They would also be looking for other chromosomal problems that babies can be born with which include trisomy 18 and trisomy 13. She was told at this time that trisomy 18 and 13 usually aren't compatible with life.
One day you are day dreaming about smelling their sweet baby scent after their bath, and the next you are told to start discussing as a couple whether or not you are willing to terminate your pregnancy- just like that. Sometimes life just isn't fair. Annie was told that the results can take from 7-10 days. In those situations, time is never kind. Each moment that passes carries a loud and excruciatingly slow tick of the clock. The cell phone was her constant companion. Is the ringer on? Is it charged? Is there cell coverage? It felt like she checked her phone every minute. Within days she was calling them to see if she could get any information yet. On day seven she was in a surgery center waiting for her Mom to come out with a new knee. Annie's phone rings and she knows by the number displayed that this is the call for which she has been waiting.
Time stood still as she was given the information that her gut already knew. Annie tested positive for trisomy 21 and the child she was carrying had Down syndrome. Her first feeling was overwhelming relief. Compared to the other abnormalities, Down syndrome was a blessing. While on the phone she attempted to remain strong. She was grateful that her child would live. And when she hung up the phone she started to sob. The other people in the waiting room faded away and what was left was only Annie and her pain. She needed her rock, her husband Daniel. Daniel is soft-spoken and kind hearted. She didn't want to tell him on the phone but she needed him to know immediately. She squeaked out the news. His words hugged her tight, It's going to be okay, he said. Together they focused on the positive. We can do this. Our baby will live- that's all that matters. The entire process, the fear, the waiting made them grateful they would have a child that would live.
Annie will never forget driving home in the pouring down rain that night, crying. She couldn't call people or talk to anyone, she couldn't explain the news she hadn't yet processed. It's so painful to have to tell your story over and over again. She called one sister at random and asked her to share the information with their seven other siblings (YES!! SHE IS ONE OF 9!!!) . She couldn't catch her breath she was crying so hard. She felt so much pain, and then guilt for feeling so much pain.
As the days and months went by she processed all the information. She worried about all the unknowns. What will his life look like? How will parenting be different? What about the added health risks that are associated with trisomy 21? The increased risk in her pregnancy warranted an ultra sound every two weeks. During those moments of seeing her baby on the screen the fear of the unknowns vanished. Moments of peace would settle deep into her bones. She saw and bonded with a beautiful little baby while the diagnosis faded into the background. One appointment would carry her into the next.
With the diagnosis carries an increased risk of premature delivery and at 31 weeks pregnant, Annie went into labor. On June 11, Sawyer Daniel came into the world. 2lbs, 15 oz of pure love.
Annie is positive -God brought him early which shifted our focus to his health, Down syndrome wasn't even a thought in our mind then. Groggy and fuzzy after her C-section, Annie was wheeled into the NICU on her way to recovery to meet her precious son for the very first time. Was Daniel able to hold him? She remembers asking. And when she was told yes, she knew if the baby was healthy enough to be held that it was a very good sign.
Despite a million tubes and wires, sweet Sawyer was placed on top of Annie's chest and directly into her heart. Just like her sweet husband Daniel had faithfully promised, once Sawyer was here it wasn't as scary. It was just love. They had a long road ahead in the NICU, but their miracle baby was here on earth and beginning to thrive. They had God by their side the whole time.
And Liam... Sweet Liam loved his brother Sawyer from the instant they met. Isn't he the sweetest? I call him Noodle, because Doodle was already taken.
Here are Annie and Sawyer now.
Ten months later...They both make the world glow brighter.
Annie and I met while she was still pregnant with Sawyer. God put us both at Nordstrom Rack at the same time. Anytime He calls on me to go shopping, I am there-- and Annie is by far absolutely the best thing I've ever gotten at the Rack. I love Annie because her Starbucks order is even more complicated than mine, plus a million other reasons. I like the way she looks at life. We can talk about anything- surface or deep. She loves big. We'd be friends even if we didn't have Super Powers in common- but it makes it even better because when I am sad or elated- she truly understands what it feels like. Sharing Daniel, Annie, Liam and Sawyer's story is a genuine honor. One day many months ago I was scared, but I asked her anyway. Annie- if you ever want to tell Sawyer's story, I know just the place. I knew her story would find a perfect home here. I know something about Sawyer is very special, and I know this boy has big plans in this world. I told her the offer would never expire, and if she never wanted to- that was okay too. And then I launched the Beautiful Super Powers photo shoot idea and she came to me and told me her and Daniel were ready.
When describing Sawyer, Down syndrom is the last thing I would use to descibe him. He's adorable and squishy. Squishing Sawyer should be an accepted form of therapy because it causes high levels of happy. He's a sweet little baby boy. He's curious and happy.
And dapper. Did I mention totally dapper?
The way his head instantly whips around when he hears his Momma's voice stops my heart.
Mostly he's just Sawyer, which is already pretty amazing.
The whole family is pretty amazing.
The love we all have for our babies is so much bigger than these fears and diagnosis, Annie told me today. Once Sawyer came- the instant love healed everything. The diagnosis didn't matter. I wish I could tell the old pregnant Annie laying in bed with so many fears and thoughts and worries-- None of that matters.
I asked her what she wanted out of life for Sawyer. She said she wants the same opportunities. She doesn't want him put into a category. Assume he has the potential to be on the swim team or to be a Kerman Kicker like his Dad. (I forgot to ask her what that means but I'm guessing football). She hopes the world won't limit his future potential. She hopes that the helpers will always show up. She used to Teach, and she agrees with me that there is at least one helper in every classroom in the world.
As long as he is happy, that's all that matters. No matter what the future holds.
Daniel and Annie- thank you so much for sharing this very important story and very important boy with the world. If you have any love or encouragment to send to this sweet family- send it to me. I'll make sure to send it their way. firstname.lastname@example.org
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