Model Amanda Booth Dares to Defy Down Syndrome Sterotypes

From Harper's BAZAAR

I still don't understand why it's assumed you're going to have a typical, healthy baby. I did—and it took a while to let go of the blame for being so selfish and naive. When Micah was born, there were so many complications and doubts, but it was in those moments that I discovered his strength; and he taught me to see mine. I still know very little about Down Syndrome, really, but I know a lot about Micah.

Let me start from the beginning, where I had planned a natural delivery in my home with my midwife, Heather. My husband Mike and I had opted out of genetic testing, because it didn't matter to us—we never would have "done anything about it"—but needless to say, we had no idea that Micah was going to have any chromosomal abnormalities. His heartbeat was, however, pretty weak at the end, so we did a lot of monitoring of him. Some specialists said it was because he was too small, or that my placenta had "given out" and started to calcify. Others said he was perfectly healthy. After two more weeks of monitoring later that one specialist said, "You have to go to the hospital. Now." And just like that, my entire aspirations of giving birth were blown to smithereens.

The hospital staff treated us pretty poorly because they knew we wanted an at-home birth. When the on-staff pediatric doctor came to visit us for the first time, she asked if we had done any genetic testing. We confidently said, "No, it doesn't matter to us," just as we confidently denied the use of erythromycin (the antibiotic ointment applied to newborns immediately after birth to prevent blindness if the mother has Chlamydia or Gonorrhea) which we were also judged for: "Why not? It doesn't harm the baby," said the doctors. I knew I didn't have any STDs so we didn't need it. Our approach was as little medical assistance as necessary; we didn't want Micah's first blurry sights to be even more blurry! We were already on the defensive, training for our marathon race of defending our little guy. Who knew...

After giving birth and being transferred to our postpartum room, the first words out of that same on-staff pediatrician's mouth were, "I think your baby has Down Syndrome." She pointed out Micah's slanted eyes as the reason. My husband is half Mexican and has slanted eyes, so although we agreed to do the electrocardiogram (50 percent of babies born with Down Syndrome have a congenital heart condition), we didn't want to take four vials of blood from our tiny newborn, so again, we opted out of the testing. It didn't matter, even still.

Micah's electrocardiogram test came back beautifully (we got lucky), and three months went by. We would occasionally wonder if he "had it," but he was thriving—we were treating him as we had always anticipated. We sought out a new pediatrician for Micah, Dr. Katiraei, who wanted to test him at three months since other medical things would start to arise if he did, in fact, have Down Syndrome. A month later, he came to our home to deliver the news. We had already accepted it that day in the hospital, so with Dr. Katiraei's compassion and understanding pushing us up, it ended up just being another day for us.

Honestly, we were so lucky to find such an incredible pediatrician for Micah. Since day one, Dr. Katiraei has been treating him with a natural, plant-based diet. He takes a ton of vitamins and minerals every day, and his internal health has risen exponentially. We draw blood every few months (he's a big boy now) testing his thyroid, iron, blood cells, pancreatic functions...the list goes on, and Dr. Katiraei won't settle for just "getting by." For instance: Micah had delayed tooth eruption (which is typical for children with Down Syndrome). During a check-up, Dr. Katiraei addressed this and I replied, "Oh, that's normal for kids with DS." He fired back with, "But why? Tooth eruption is also linked with thyroid function." So we tested his thyroid, had to alter his dosage, and bam! Out came his teeth! It has been incredible to be surrounded by such like-minded, supportive people. I am so thankful to be living in our modern, accepting society. With that being said, we still have a far way to go.

A few months after settling into our new roles as parents to a child with special needs, we started our social media outreach. Mainly because I had found so much comfort in seeing other little ones flourish, I felt a responsibility to be that for other people. It started in those first few months when I would be quietly nursing Micah, allowing my mind to wander. I was very unfamiliar with Down Syndrome, and the internet can be a scary place, so I used Instagram as a platform for information. I figured what better way to learn about anything than from a person directly? I instantly fell in love with the babies I was seeing, the encouraging parents, and the love they were sharing. I needed to be a part of that. I wasn't scared of the reactions people would have, sharing our story wasn't for them, but for the people who needed it, and I knew they'd find us. That didn't mean my stomach didn't flip with the first trolls I encountered. I wept for my son, but I am fully aware of the battles he may face, and it just brought that reality to my doorstep a little sooner than I had anticipated. So, good! I needed some practice before he was old enough to hear the negativity, so I can know how to raise him to be greater than that. To walk this earth with a full heart, having compassion for people who don't understand him, and the courage to show them anyway.

There's a lot of antiquated information about Down Syndrome out there, and people need to know the truth. The termination rate with prenatal testing is so staggering, and I know that if people could see a glimpse of the life they could have, it might decrease. Like I mentioned earlier, we personally decided not to do any genetic screening. I wanted to birth my son on my living room floor—I fully believe that nature takes its own course. Life needs to happen and I don't think I have the right to do much more than guide my way through it, respecting its power by being present and good. Any test result would not have changed the course of the pregnancy, so I didn't see the point. That being said, the Global Down Syndrome Foundation has created a new pamphlet for prenatal testing, with honest truths detailing the new realities of Down Syndrome (that no one can know what the future holds for any baby; that what's most important is that families lead happy lives). I know that we are all different, and the majority of people will screen and that's fair—all I'm trying to do is make people aware, give them a hand to walk with, a shoulder to borrow, and clear eyes to see the possibilities of this life.

Micah is different, but not in the way you'd think. He would always stare into my eyes, and I could feel his connection. His spirit radiates through a room, and everyone else feels it, too. There is so much darkness in this world, I know people need to be reminded of the good. Micah, is the good. And so here I am, just trying to spread the good!

My life has changed in more ways than I could have ever imagined. I thought I would have a baby, go back to work after six weeks, and life as we knew it would resume. Typical unicorn syndrome, right? COME ON AMANDA. No matter what that wouldn't be true! But for me, it really, really wasn't true. The hardest parts came with me knowing I had a responsibility to Micah, to push him really hard, and to give him all the tools I had for him to grow and learn. I was a competitive athlete my entire life, so I knew that you get back what you put in. I wasn't going to let him have the easy way out just because he "couldn't" do things. No way. He just needed me to show him how. That has been the blessing throughout all of this, really. I have never been able to just let Micah exist, allowing either of us to float through this life missing all of the magical moments. Everything comes and goes so fast for everyone else. That's not the case for us.

Now that Micah has grown into a very typical, tornado of a toddler, I'm able to give myself a little shift in my parenting needs: I am starting my advocacy for my son. I need people to see him for who he is. I need them to recognize his ability, and to allow themselves to give him the opportunity to succeed. I need them to not miss out on the love that he has to give. He won't miss out, that's my job. Here, I dare to undo all the stereotypes laid out before you. What is stronger in this world than love and bond? Life would be boring if it were easy. And Micah, it won't be easy, but it would please me to watch you push hard, and to raise the bar.

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