In honour of World Down Syndrome Day on March 21, we’re sharing some of our favourite stories of mothers and their children navigating life with Down syndrome. This story was first published in our beautiful coffee table book GRACE MOTHERS: Letters To Our Children.
If you follow LA-based Amanda Booth on Instagram, you would have already fallen in love with her beautiful son, Micah Quinones – not to mention been blown away by her strength and courage.
Before Amanda gave birth, she discovered Micah’s heartbeat was faint. “This is what led us down that dark rabbit hole. His heart looked great, but that’s when they said his other measurements were not so good. He was very small. Words like achondroplasia or intrauterine growth restriction were thrown around. We had the foetal non-stress test multiple times a week, until finally he wasn’t doing so well, so I had to be induced at hospital.”
When Micah was four months old, he was diagnosed with Down syndrome. “I have tons of advice for mothers of babies with Down syndrome,” says Booth. “First, that it’s ok to be sad or worried, to mourn the loss of the life you envisioned for you and your child. It is going to be different, yes. But that does not mean that it will be less, in any way! We try not to treat Micah any differently. If we don’t, then I think we have a better shot at others doing the same thing.”
Here, she shares her letter to her son.
Photography: Julie Adams
I hope you go through life loving yourself as much as I love you. You’ve given me a sense of purpose that I’ve never felt before. You’ve opened my eyes. You’ve taught me the importance of equality, inclusion and acceptance, and how to fight for someone other than myself. Every single day, you teach me to slow down and be present in the moment.
I grew up in Pennsylvania. My own childhood was very challenging, but now I appreciate all the struggles I had to endure at a young age. They not only shaped me into the person I am today, but also into the kind of parent I wanted to be. My parents divorced when I was very young. There were a lot of addiction problems in our family, and we were always moving. Nothing really ever felt stable – there was definitely nothing beautiful or poetic about it. I grew up taking care of my younger siblings, and they saw me as a mother figure. My little sister – your auntie – would call me Mum all the time.
Your grandmother worked three jobs just to keep us afloat, so I never really had a close relationship with my parents, as they were so busy working. Yet, while your grandmother wasn’t able to be hands-on with cooking dinner or helping me with homework, I was still able to observe her. I feel fortunate that, even as a young person, I could see the sacrifices she was making for us and I never had any resentment towards her.
Thirteen years ago, your grandmother moved in with me when I was living in New York City, and that’s truly when our relationship-building began. Living together as adults, it was more of a friendship than it was the standard mother-daughter relationship. Your grandmother taught me to be a strong, independent woman; to work hard for the things I wanted and not to rely on a man or anyone else for them.
She also taught me that motherhood comes with a lot of personal sacrifices, but you’ll be greatly rewarded when you have given a human a beautiful platform for a wonderful life and future. None of this she ever told me – I just knew from paying attention.
Your late great-grandmother was my role model. She did everything for her family. She worked 12 hours a day in a candy factory until the day of her open-heart surgery, which eventually led to her passing. She always made sure we had boots in winter, a warm meal on Sundays. She always made time for us kids and still worked her butt off. She had very little, but I never heard her complain, ever.
We found out you had Down syndrome when you were four months old. Towards the end of my pregnancy, things got complicated: I was on bed rest and a diet of 4000 calories a day to see if you would gain any weight. You didn’t; only I did, so we knew something was not functioning correctly. We had known about the possibility of you having Down syndrome from the day you were born, but it wasn’t until the blood test confirmed it that we knew for sure. Your paediatrician came to our house to tell us.
I did mourn the loss of the life I’d envisioned for you – a ‘barefoot on the beach’ kind of childhood. At first, when you were diagnosed, you had seven therapy sessions a week, visits to the doctor, seemingly endless blood tests… It all felt very opposite to the life that I had imagined for you.
Now, you’re four years old and we’ve gotten into the groove of navigating life, and your dad and I are trying to get back on track and give you the type of childhood we had hoped for.
One of the most incredible parts about parenting you is the indescribable joy we experience when you do something that any typical kid will do naturally. The other day, you said “pop” for popsicle and I just looked down and started crying – seeing you formulate a word was the most incredible feeling. We remember the first time you held some beads and dropped them; the first time you ate a tortilla chip and didn’t choke because you figured out how to chew it and then swallow. We get to experience the joy of you being proud of yourself when we ask you to do something and you do it. The smile you get on your face when you feel proud of yourself fills me with happiness.
I started modelling when I was 18. I drove back and forth between New York and Pennsylvania for two months until a modelling agency finally put me on their books. Most of them thought I was too old or too fat and, at that time, I had just turned 19. But I never gave up on myself.
That was 14 years ago, and it wasn’t because somebody scouted me at the mall or because I was in the right place at the right time. It was because I had an idea of something that I wanted and I never gave up on myself. And I’m still here – modelling and acting – and I’m still not giving up on myself.
I hope, like me, you will have a go at everything and do it with as much passion and love as you possibly can. If it doesn’t go your way, remember to let go. Something else is always around the corner; you just have to put one foot in front of the other.
I strive to be a far more patient mother to you than I feel. I hope you will never question how deeply I love you or how much I believe in you. I hope to be the kind of mother who slows down and looks at what you need, instead of what I need or what I think you need. I hope that I’m honest and that I can inspire other people to connect with their kids in ways they’ve never done before.
Micah, go through life with love in your heart. As I’m getting older, I’m realising that the more I nurture the relationships in my life, the happier I feel and the more purposeful my life feels.
Material things come and go, so it doesn’t make sense to equate your life to things that could be taken away from you. It’s better to put your energy into nurturing the things that no one can ever take away from you, and that’s the love you give and the love you receive.
You are my heart.
With all my love,