Down Syndrome turned Michelle Aventajado’s world upside down at first, but taught her how to appreciate life with daughter Gelli more fully.
In real life, mother-daughter relationships are not always perfect. There comes a time, especially during the teen years, when daughters want to–maybe even must–exhibit their independence, much to a mother’s dismay. While allowing offspring to be independent and to spread their wings, so to speak, for Michelle Aventajado and her daughter, Evangelina or Gelli, as the family lovingly calls her, this is something to be handled with a degree of caution. Not because Michelle is the usual helicopter mom of a daughter, but because Gelli was born with Down Syndrome.
“When I learned that she had Down Syndrome, it didn’t take me too long to realize that just as easily as God gave her to me, that she could also be taken from me. I promised Him that I would do my best and take care of her so that she would know my love. Faith is what got me through. God knew better than I did. God knew we needed each other,” Michelle shares when asked how she managed the challenges she faced from Gelli’s IDD (Intellectual or Developmental Disability).
“Well, Gelli is 11. She’s feisty. Sassy. Strong-willed. We are on the cusp of pre-teen and adolescence, so this means her hormones are raging. She may not even understand why she feels the way she does during the day. Our latest argument is why it is important to take a shower every day in the morning and the evening. This is quite typical of kids this age. My boys went through it, too. That’s the thing I think many people might not understand about kids with Down Syndrome. Gelli is a lot like other kids. More than most. It’s just her extra chromosome that makes her different. She is moody. She wants to make friends. Is picky with her food. Fights with her brothers. Loves coloring, Barbies, and plays jokes and pranks on her siblings. She loves vlogging and can talk for a long time about things she loves. She’s kikay and has her dad wrapped around her pinky finger,” Michelle proudly describes her daughter.
Favorite activities to do together for this pair include cooking and baking together. Gelli loves swimming and she likes doing this with her dad. As a family, the Aventajados like to explore different restaurants and fun places in BGC. “We read books at bedtime. We color. She loves stickers. She loves dancing and singing, and watching movies. She super loves staycations, and actually is the barometer of when we need to spend time together disconnected as a family.
When she says she wants to go to “the hotel,” we know that it’s time to put everything away, disconnect, and spend time together,” Michelle shares. Beyond quality time with the family, #TeamGellibean also understands the importance of being part of an active community for their littlest member to always be included. This is why it was easy for Michelle to step in the executive director’s shoes for Best Buddies Philippines. Attending Best Buddies events and activities with other families is something they all look forward to.
Michelle adds that they all help out and pitch in: “Even the boyfriend of Gia and the girlfriend of Miguel are volunteers in the organization. Everyone who knows Gelli wants to get involved too! Her extra chromosome showed the family the importance of serving in the community.”
How about when they’re apart? “We Facetime all the time!” Michelle laughs. “She has FT on her iPad so she can call any of us when she wants and is connected to WiFi.”
This pride and love radiates on Michelle’s face and in her gentle tone when she speaks about Gelli. So much so that when asked what true love to each of them was, Michelle quietly turns to her daughter, “Gelli, what is true love?”
The reply sends tears to everyone’s eyes including Michelle’s.. “You Mom. I love you.”
“Nothing can compare to the love between a parent and a child. True love is so much more now than what I knew it to be before. Sometimes it’s just getting through the day with one another. It’s honoring each other-and in my case as a mother-it’s allowing Gelli to lead me in my motherhood, and my life. It’s her loving me in all of my flaws. It’s me knowing that her extra chromosome has brought a lotta “extra” to my life. It’s doing my best every day for her and her siblings and of course, for my husband. But also knowing that they are still present for me even when I’m not at my best.
Sometimes true love is raw and real and filled with emotions and lots of forgiveness. And other times it’s just going with the flow in quiet moments,” Michelle replies.
Many parents can certainly relate to his view and it’s so fortunate that Michelle seems to have found this meaningful wonder, peace and acceptance of her role as a mother. When enumerating the things she likes about her daughter, she offers, “She is my greatest teacher.
Her extra chromosome turned our world upside down, and after we got over the initial fear of the unknown, she changed everything. She brought our family of 6 to a different level of understanding. She holds a mirror to me that none of my typical children could do. She has required us to become more inclusive in every decision we make. She has made me a better mom, dare I say, even a better human.”
The future of their relationship isn’t so easily predicted. It is clear that there is no way to predict how their future will go. However, Michelle does look forward to seeing Gelli grow and develop in the world and standing right there beside her when she does. “In 5 years, she will be 16 years old. Sweet Sixteen. I hope by this time she would know that I am present for her in more ways than one. I’m sure she will struggle for independence. At 16 I was interested in boys already. I’m sure she will have a crush. I am sure she will want to spend time with her friends, away from us. Teenagers have it different now.”
Michelle goes on with her concerns, “Individuals with IDD are often bullied and abused. If I have fears of sending my kids out into the world, multiply that by the fact that she is a girl. Then multiply that again by the fact that she has a disability. The fear is real. So as her momma, I will have to be able to temper that understanding and fear of the world outside and empower my daughter enough to go out into the world and also claim what is hers, shine her light, and chase her dreams.” Michelle gets emotional as she utters these words because, “I know it won’t be easy, but I will owe it to my daughter to allow her to explore and foster her independence when she’s ready.”
In terms of her life’s purpose aside from being mom to 4 kids, namely Gia, 23 studying to be a doctor, Mig, 20, a Multimedia Arts student in De La Salle College of Saint Benilde, Diego, 17, a Senior in De La Salle Zobel, and Gelli, Michelle shares a quote from Pablo Picasso that stuck with her from a leadership training she attended a few years back, “The meaning of life is to find you gift. The purpose of life is to give it away.”
This has prompted her, even before Gelli, to volunteer and serve in the community.
“In fact, I was always drawn to serving individuals with disabilities. I have been volunteering in the community since I was 14 years old. Even when I moved to the Philippines in 2006 and pursued my yoga certification in 2008, I chose to teach children and individuals with disabilities.
I have taught in inclusive classrooms, and thought I understood disability. Gelli continued my education and gave me a completely different perspective.She made us Team Gellibean. She made me better. She gave the volunteerism that I had always participated in, the opportunity to grow into an advocacy.”
This advocacy has translated to the organization, Best Buddies, of which Michelle is the Executive Director. “What we do with Best Buddies Philippines is build on the communities through awareness, education, and acceptance. After we lay the foundation, we can foster inclusion in the community through the community. We build with the kids. Middle School, High School, and University students who are involved with our friendship programs provide opportunities for others to be included because they know and understand at the very basic level what individuals with IDD need to be included,” she explains.
Does she have a message to parents of children with Down Syndrome?
“Congratulations. You have a beautiful gift. 1 in 800. That’s plucky lucky! We are part of the same club, and not everyone is chosen for such a premier membership. Once you can catch your breath and count your blessings, you’ll see that the tears came from a place of fear.
However, faith and fear cannot exist in the same place. Once the fear subsides, you will see just how much good there is in the world when you view it from the perspective of a parent who has a child with an extra chromosome. This does not mean your child will live a life without challenges. But it is exactly these challenges that will help you understand things differently. You will no longer take things for granted. You will cry tears of joy and happiness. As my big kids say ‘It hits differently.’ Everything hits differently.”
For new parents of special kids, Michelle has this to say,
“I have three things I usually advise new parents.
1) Find your tribe. Looking for other parents to connect with who are in your situation is always comforting. We don’t want to feel like we are alone, and even talking about things with someone who understands your situation is already a comfort.
2) Live in the moment. If it’s anything that your child will now teach you is how to be completely present.
3) Don’t sweat the small stuff. No explanation needed.”
It is here that Michelle waxes poetic on what true wealth and luxury mean to her. “My understanding of these definitions has shifted because of the pandemic. The Gift of Time is a luxury. My understanding of time changed when we lost people during the pandemic. We thought we would see them again. Many families lost loved ones. To be able to choose how you spend your time is the ultimate luxury, and perhaps that is also a reflection of wealth. At any rate, we know that while we need a certain amount of wealth to be able to provide for our families to enjoy life’s little luxuries-we also know that time is the ultimate luxury that cannot be taken back.”
With this, we see that Michelle is indeed using her precious time well by making the world a better place for Gelli, all the kids are similar to her, and the rest who are fortunate enough to have special people like this in their lives.
Photographed by Excel Panlaque of Kliq, Inc.
Shot on location at Admiral Hotel Manila-MGallery.