Macy Gilson

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Ashton

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You never imagine you will be a special needs mother. 

Photo property of Brooke Miller

 We went in for our 12 week ultrasound so excited and were devastated when told something was wrong with our baby. We were told a long list of scary diagnoses, that there may have a heart defect & our risk of stillbirth and miscarriage the rest of our pregnancy was high. Then, I was told I could simply go upstairs and terminate the pregnancy. I was terrified, confused & angry. All I wanted to do was to protect my baby. We agreed to a blood test to rule out and determine the most likely diagnosis. Waiting was rough. I cried all day most days. 

A few days later I was reading my Bible looking for answers. I felt God tell me, “It’s a boy and he is going to be okay.” Then, my phone rang and it was the doctor. 

“I’m sorry, I think your baby has Down syndrome.” 

I hated that “I’m sorry” would be told to me so many more times by doctors, friends and family during my pregnancy instead of “Congratulations!” I was relieved it wasn’t the other things, but still didn’t have a definitive diagnosis. There was a 61% he had Down syndrome.

 We spent the 2nd trimester in limbo. As we enjoyed our babymoon in Europe, I laid in our bed in Italy searching out families who had kids with Down syndrome and found the poem “Welcome to Holland” by Emily Perl Kingsley. In that moment, I knew my baby had Down syndrome.

 Our 19 week ultrasound rolled around, and we decided to do an amnio to plan and be prepared and was told he had a heart defect and that I needed to see a cardiologist. Shortly after, we met the amazing cardiology team. They were so compassionate and very confident they would repair the heart around 3-6 months old.

 Finally, we got that cold phone call. “Your baby has Down syndrome, I’m sorry.”

Photo property of Brooke Miller

Photo property of Brooke Miller

 We hung up and I felt a mix of emotions - happy we had a diagnosis and answer and scared of health complications. We connected with the amazing RMDSA and met local families. This eased our minds.

 Our third trimester was filled with anxiety when my placenta wasn’t functioning well and his growth slowed way down. At my last ultrasound at 36 weeks, I was told I needed to be induced for low amniotic fluid.  

We told all of the labor and delivery nurses how excited we were for our extra special baby and how the Down syndrome community welcomed us with open arms during our pregnancy. We had time to adjust to the news and gain excitement. When our eyes locked for the first time, my fears disappeared. I felt so much overwhelming love for Ashton. 

I want other moms to know, a Down syndrome diagnosis isn’t a death sentence. This isn’t terrible news. It’s okay to grieve the child you thought you would have. It’s normal to feel angry and confused. Meeting milestones is so exciting because our children work extra hard to do those things that most children take for granted. Ashton has taught me unconditional love and how to respect everyone. No matter what.

I want the world to know how every time we bring him anywhere, he makes everyone he meets smile. He is the happiest child I have ever been around. His giggle is infectious. If you have a prenatal diagnosis or if you know someone who gets a diagnosis, I want to say “Congratulations!” This is not a journey you expect to go on, but it’s worth it.

Truly, you will soon realize why we call ourselves “the lucky few.”

To learn more about Ashton, follow along @down.with.the.millers on Instagram!


Photo property of Brooke Miller