When Andy and Mercedes Lara began sharing Sunflower Mae’s story, . Sunflower has Down syndrome, a chromosomal abnormality that is caused by an extra chromosome in each cell of the body. Individuals with Down syndrome have special physical and developmental needs, and the Laras were ready for the challenge when they intentionally sought out a child with special needs during their adoption journey.
Today, the Laras have two children: Sunflower, who is nineteen months, and Rhodes, who is a newborn. We spoke to Andy about the joys, challenges, and lessons he’s experienced raising Sunflower. Andy’s perspective is refreshingly direct, and his fatherly love is palpable. You might be surprised to know that the Laras would love for Sunflower to grow up and marry a man with Down syndrome, or that Andy thinks all of us can see Down syndrome as a “road map” to our own challenges in life.
The cutest thing Sunflower does:
Recently she has started reading, so she will grab one of her favorite books, tuck up her knees and rest it there, flip through pages and talk (very loudly) and point at whatever she is looking at. It’s really adorable.
The most frustrating thing Sunflower does:
Considering that most folks might suspect there are more of these moments than there are, it’s quite the opposite. There aren’t a lot of frustrating moments. However, she has this bad knack of trying to scratch my face every time I pick her up out of the bathtub. It’s like clockwork, I try a new method each day to avoid and correct. She’s learning not to, and I’m sure this won’t be the only experience like this.
What Sunflower thinks about her new brother:
She is really sweet to her new brother. She looks for him in his cradle and will stand next to it, reach in and run her hand by his face a hair, just like we trained her to do with our dog Juno. So that skill carried over well! She gives him kisses too.
How strangers respond when they meet Sunflower:
Thankfully, most people are very positive. I feel more of the responses have to do with the dynamic of our ethnicity more than her DS. I’m half Filipino and Caucasian, and Mercedes is Black and Peruvian, and Sunflower is primarily Scandinavian. People smile quickly, seeing immediately that she’s most likely adopted, or that we’re her caretakers (chuckle). But that’s ok, we’re truly the American family nowadays.
In regards to her DS though, we strike up many good conversations with folks who, after 10 minutes of talking, will introduce that they know someone or are related to someone with DS and are so happy that she is providing us a wonderful journey filled with joy. We are affirmed often for our intentions to adopt her, and at the end of the day her effect on the world thus far has been larger than we could ever expect.
How life is different for the parent raising a child who has Down syndrome:
Life looks different raising a child with special needs. It’s a full-time job for mom, as it is with many mothers. She currently attends physical therapy, occupational therapy, a mommy and me group therapy and in-home therapy weekly. That takes place Tuesday-Friday. We were fortunate that she did not have any heart complications which is common for children with DS. Had she, we’d find ourselves at more doctors visits I believe. But, she does have a genetics specialist, a cardiologist, an ear, nose and throat specialist, and will also start speech therapy early this year in 2015. We’re hopeful she will walk this year. In addition to all of that her low nasal bridge is complicated. When she gets sick she gets backed up a lot with congestion. And it takes a long time for her to recover from being sick. If you have a child with DS and have not discovered the NoseFrida® you need to. It’s a life saver tool for us. It was weird to get used to using it, but it really really helps her to breathe better and recover faster.
Andy’s dreams for Sunflower Mae:
Firstly, I pray she lives a full and joyful life. It’s our hope to travel with her and show her the world. Show her what it’s like to love, have community, and inspire others to humbleness and peace. Mercedes and I are perfectly happy being with her indefinitely, but we’d love one day for her to marry a man with Down syndrome and live in a guest home on a future property. That would be our ideal dream. I would support her living independently if that’s what she wanted.
Secondly, I believe she came to us very intentionally from God. The circumstances that surround her placement with us are far beyond coincidence. I’m not entirely sure of what that mission is on her life, but it’s clear from the tens of thousands of social media interactions and ongoing media attention she has had that her story and life was intended to be told and shared. Considering the responsibility of that impact, I believe that’s not an accident.
How Sunflower has surprised her parents on the journey:
In regards to physical performance she’s on track cognitively, and a little behind physically. We are overjoyed about how bright spirited and smart she is. I am surprised at how far this story has been told through the social realm. I imagined an effort farther in the future to begin sharing our history and we’ve been positioned to share it now, in the midst of everyday life with it. Comments about people’s lives being changed through our decision to adopt her have been the biggest surprise. We’re blessed and honored to have her in our life.
Andy’s advice for a parent who has received an unexpected prenatal diagnosis:
“They will bless your life more than you can bless theirs.” Many of us know the personal ramifications of either abortion, giving up for adoption, losing a child of your own, or having a miscarriage. And what do these all have in common? They change our lives forever. My advice is to consider what effect you want it to have on your life. I can assure you that raising a child with DS will be the maximum and most whole and complete choice to make when receiving that prognosis. No matter what you believe, abortion is a tragedy. What side of that tragedy do you want to be on? You are not alone. There are thousands of parents everywhere raising people with DS waiting to support you in your choice to join them. It’s not easy, but neither is it impossible. And if you’re scared? Contact me or my wife and we’ll help you through it. No judgment. No cost. In addition, if you’re a parent looking to adopt a child with DS, let us know. Our lawyer and placement workers are always asking us if we know people. Since Sunflower, we’ve helped place two children with DS with families.
How society needs to adjust its view of people with Down syndrome:
I think that society and communities need to start standing up for something again. Be bold and courageous in a world that is beginning to allow mediocrity to reign the media and we obsess over celebrities, technology, comedy, and satire. I think if more parents took risks and altered their lives to demand attention about how they love people with Special Needs we could begin to help society see that life is better when grace abounds and healthy relationships flourish.
The primary issue lies with people who look down on Special Needs. We have our own communities in the Special Needs world, and the invitation needs to be extended to those without Special Needs to join in the love, grace, and joy we get to experience every day. My broader suggestion is for parents with Special Needs to embrace the gift they have and let grace abound. Be bold and share the experience.
The biggest misconception about people with Down syndrome, and how to overcome it: Interestingly, I think the biggest misconception is that people with Special Needs are all the same, which couldn’t be farther from the truth. People often assume individuals with DS are always happy and joyful. I think often in social settings they thrive and exude a positive attitude and joyful demeanor. But, they all wrestle with frustration, hurt, and from what many of us would agree upon a full dynamic of emotions very much like those of us who do not have special needs.
Another misconception is that people with Special Needs need pity. They don’t. They need opportunities to thrive as people full of life, no different than us. We all have “special needs”. No human soul is made without unique needs, and we are all living in imperfect bodies. Seeing Down syndrome, we have a bit of a road map.