“I Wouldn't Have it Any Other Way”: a Mum on Raising Her Son With Down Syndrome
Amanda Booth discovered her son, Micah, had Down syndrome when he was 4 months old. The L.A.-based model says she wouldn't have it any other way and wants to dispell popular misconceptions about the genetic disorder. At 11-months-old, Micah landed a deal with a talent agency and together, the duo are bringing awareness and visibility to children with Down syndrome.
I’ve wanted to be a mother for as long as I can remember. I grew up with a bunch of younger siblings, and I've always felt as though I naturally took on a maternal role—I was a babysitter for most of my adolescence, I fostered and adopted many animals, always went to bed early, and never went out partying. I feel like I’ve been mothering for forever! But Micah, my son born with Down syndrome, changed me.
Micah has more energy than I'd ever know what to do with! He is very loving and funny and will do just about anything for a snack! I love that he’s different and that I get to connect with the deepest parts of him that he rarely lets other people see. I love that he’s my little koala bear, and my arms are his branches. I love the way he beams when I enter a room. And I love thinking that it will always be that way, and that’s precisely because of Down syndrome.
Micah was born in a hospital a few weeks early, despite our best efforts to have a home water birth. Suddenly, giving birth in a hospital put me in a pretty heightened and defensive state—we had to constantly explain why we declined most medical interventions like pain medication and the sorts.
When Micah was just hours old, a pediatrician I had never met entered our room and asked if we did genetic testing. She hadn't even mentioned her name. When we expressed that we had not, she quickly judged us as everyone else had and asked, "Well, why not?" We told her that we wouldn’t have done anything with the results so, to us, a test wouldn’t have changed anything. As quickly as my sentence ended, she blurted out "Well, I think your baby has Down syndrome," with no care to softly or patiently explain why, or even ask how I was doing.
We declined a blood test because of his weight—he was less than five pounds—and again, the result wouldn’t matter to us. She called in a social worker who explained that we were being bad parents and that most babies born with DS had a heart defect so we needed to do tests. I told her she was free to do any EKG and non-invasive procedures to make sure he was healthy—our only concern. Thankfully, he had a good heart, so we asked that they let us go home.
Three months went by with our newborn baby and that’s about all that life was. Then, Micah’s pediatrician asked if we wanted to do the testing so we could know for certain one way or the other. He had grown to be a plump little baby, so we opted for the blood test. We had to wait almost a month for the results, and during that time I just prayed that he would be okay.
For a long time, I had been trying to decipher my faith, and I asked for a sign from God that Micah was okay. At the time, I think I meant that the results would come back negative for Down syndrome. When our doctor told us for certain that he did have the genetic disorder, that changed. For months I had known our baby, and he was, in fact, okay. I knew everything else would be too.
I couldn’t imagine getting a diagnosis and not having the immediate connection that social media offers. I had never ever met someone with DS in my entire life. I had absolutely zero idea of what life would look like. Most of the books out there were entirely antiquated and had very scary things to say.
Social media is the very first place I visited to meet families like ours, to see little kiddos thriving and living the life I hoped for any child. There have been very few, and very brief encounters with trolls, and they just remind us of the importance of also having a voice on social media. I feel that people are uncomfortable with things that are unfamiliar to them. Social media can be a very powerful platform to spread awareness and love and light. I just wish that more people used it that way, too.
The main misconception people have is that all kids with Down syndrome are the same. People forget that even though there’s a genetic condition at play, they’re still children, which means that they’re made up of their mum and dad’s DNA just like anyone else. So, they’ll have unique personalities. Typically, their strengths would resemble their parents, just like any other kiddo. And Down syndrome is not a disease; it is not a death sentence. It just means that life will look a little different than you might have imagined, but I promise that that does not mean it will be any less!
I think as a parent to a child in general, it’s important to not compare your kid to anyone else. That does not change for those of us with kiddos with Down syndrome. No two children will develop exactly the same, so I'd advise other mums going through a similar experience to take a deep breath and do the best that they can. Love your child fiercely, and they will thrive knowing that they’ve got you in their corner. Connect with other parents who are living a similar life. It’s so important to feel like you can connect with other families and seek advice from those who’ve walked the path before you.
I have never felt such a concentration of love before meeting him. I never realised how impatient I was, before him. I never realised how quickly my blood could boil, before him. I realised that I took for granted having time to read books. I see how unaware of an entire demographic of human beings I was—I had absolutely no tie to the disabled community before. I, like many people, was just speeding through life before Micah. He gave me patience. He’s taught me unconditional love. He has given my life and existence, a very powerful meaning that I never knew it needed.