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Every Juana: Down with Love

Juana Love Down

5 years ago, Mish Aventajado ‘s life changed forever- for the better. Her daughter Gelli was born with Down Syndrome. Today, she and her family are a wonderful example of how  strong family love have overcome all obstacles.

Editor’s note: I saw Gelli and her family on a flight back from Hong Kong a few months ago. The first thing I noticed was how together this family was, older siblings watching over the younger ones. The only thing I noticed more than this was the pure happiness that radiated from this family as they all got on the plane. Their story is one that will inspire so many others.

Please tell us a little about your family.

 

Nino and I got married 18 years years ago.
We knew we wanted to have kids right away. While we were still young.

So…

Gia was born 3 days before our first anniversary.
Miguel was born 2 years and 6 months later.
Diego 3 years and 3 years and 3 months later.
Gelli was born 6 years and 3 months later.

So Gia is 17.
Miguel is 14.
Diego is 11.
Gelli just turned 5.

How did you find out about Gelli’s condition? How did you react when you first found out? How did your family take it?

I didn’t have an amnio when I was pregnant with Gelli, even though I was 37. I asked my doctor for it, but she talked me out of it saying it was too risky.

So, we didn’t find out about her extra chromosome until she was born.

 

I knew it from the first moment I laid eyes on her. She had the almond shaped eyes that I knew kids with Down Syndrome typically have.

I have so many regrets about how I reacted. I was in shock. I didn’t know the gift that I had been given. I cried. I thank God for my husband during this time because he was my rock. Nino’s faith in God and his love for our daughter saw me through the pain, the doubt, the fear, and the sadness that I was experiencing.

My sister wanted to research. Test. Find answers. She’s very logical. She wanted to know more and she wanted proof. I knew what the test would say already. I didn’t need the genetic test (even though we asked for it) because I could see it in Gelli’s eyes.

My father said “It was God’s plan for Gelli to join our family.” At first I didn’t understand this statement. I realized just a short while later, how lucky we were that she chose us as her parents.

My mother didn’t say much. I found this ironic because my mom always has  A LOT to say. Instead, she just offered herself to me in ways that she always has. She cooked for my children when I couldn’t bring myself to do much. She stood by me and told me that she knew I was a good mother, even if I felt like a fish out of water with my new baby.

 

Gelli changed the playing field. I thought I would be able to welcome my fourth baby into the folds of our family with my eyes closed. I was shocked when I found myself searching for answers online. I felt like a new mother but a new mother who knew absolutely nothing about how to care for a baby with special needs.

Because Gelli had duodenal atresia, she had to be operated on within 24 hours of being born. Duodenal atresia is when the duodenum is blocked. We baptized her the morning after she was born, just minutes before she went into surgery. My family was there, and so was Nino’s brother and sister in law. This was a big moment for our family, and it was important to us to have those nearest and dearest to us support us during that time of uncertainty.

One thing was for sure though, when I walked my daughter, who was in the incubator being wheeled off into the operating room, I made a deal with God. I asked him to just please make sure that my daughter made it out of surgery so that I could hold her, and nurse her, and take care of her, and watch her grow. I apologized for not knowing the gift He gave me through her and I begged Him not to take her from me, before I could even love her.

Gelli has grown to be a little charmer (from what I see on IG and at the airport that one time) I am assuming this is because of all the love and care and time you and your family have focused on her. How does each member play a part?

Because there is such a big age difference in the kids, it’s easy to see how Gelli interacts with her big brothers and big sister. We all take care of Gelli. Her Kuyas and her Ate are the best playmates and teachers.

 

But she plays favorites. And we don’t mind. Because her favorites rotate. I have to be honest…

When she says “Mommy ONLY,” I do get a little excited. I know that she’s totally loving me and I take it all in. I drink it up like a tall glass of water because I know the day will come when she will not need or want me around so much.

What are some of the biggest challenges you have faced so far?

Before Gelli’s first birthday she started having infantile seizures. I sometimes forget about this fact when people ask me, because she really came out of this unscathed. She didn’t have to go on medication. Her seizures just miraculously stopped.

Gelli also has a delay in her development. This means that it might take her a longer time to do simple things, and that she will need help (for sure) with bigger things.

Tell us about the group/ foundation you have ( Best Buddies). What do you do and how does it help other families?

(Taken from the website.) Best Buddies International is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities (IDD).

We do this through different programs. Our programs foster one to one friendship, integrated employment, and leadership development. We are present in public and private middle schools, high schools, colleges, in the community and through our partnership with Unilab Foundation, our Buddies are employed in meaningful work and contribute to society.

Here are the link in case you want to learn more about what we do here in Manila.

Here are a few blog posts about my DLSZ chapter, so you get an idea of what they do at the high school level:

 

These are some of these things that we do for the country activities and awareness:

 

Does Gelli attend a regular school? How is she doing there and how helpful have the staff been?

 

Yes. Gelli attends a preschool here in Alabang that caters to children with mostly typical needs.  She is doing well. She has her therapy sessions outside of school with all her therapists. She has OT twice a week, PT once a week, and Speech once a week.

Aside from that she has tutoring twice a week to catch up with some of her letter and number recognition.

She is doing pretty ok. Right now we are working on some behavioral issues that might hold her back if we don’t nip it in the bud. Her teachers at The Little Apprentice are amazing. We communicate regularly, and start the year off with a PTC to set goals and expectations. This way, all the therapists, and teachers are on the same page with how to help Gelli reach her potential.

Please send us the details of your foundation so that other mothers can reach out to you and seek advise/ help.

For parents of new babies with Down Syndrome:
Please contact Down Syndrome Association of the Philippines

For parents of young children who have been diagnosed on the Autism Spectrum:
Autism Society Philippines

For children and adults who are looking for friendship 13 years and older you can contact Best Buddies:
Best Buddies Manila

What advise would you give someone who is struggling in a similar situation?

Well, I think the best thing we can do for ourselves as parents is find other parents who will understand what we are going through. Life is so much easier if you have someone you can identify with, who you can talk to you and understands your situation. Someone who can with hold judgment because they have been where you are.

So, my first advice would be to seek out a group you can be included in. Parents share information, doctors, therapists, and new breakthroughs in our children’s care. Sometimes, it’s the parents who are even more up to date because they are on the constant look out for treatments and what works.

 

My second piece of advice is “take it easy.” Things may seem overwhelming and too much to bear with an initial diagnosis, but at some point, you realize that you can’t fix everything in one day. (and you shouldn’t beat yourself up over it either.) Taking things one day at a time is probably the best thing you can do. When it came to Gelli’s care and her doctors appointments, I just followed the schedule that he gave me as to when we should set the appointments, and set appointments if she was feeling under the weather. Initially, I didn’t even know where to begin. So, I took it day by day and stopped worrying so much.

In fact, Gelli is so in the moment that she actually helps me be more present. She is so in the moment that it’s amazing.

 

My third piece of advice is really simple. You know how to do it already. Just love on your child. All your baby or your child needs….IS YOUR CARE. Kisses. Cuddles. Hugs. Your loving arms. If I didn’t know what to do or how to care for Gelli physically because of her surgery before we left the hospital…those fears quickly subsided once I nursed her from my bosom, held her in my arms, and kissed her delicious cheeks. Everything else just followed…and I am thankful that she has shown me the same love in return.

What do you do for yourself- when you take a break from the kids?

I wish I was better at this. As of the recent summer, I have been getting a little bit better. But I still feel guilty taking time for myself.

I DON’T feel guilty spending time with my husband. We make time for each other without the kids to nurture our relationship in many ways.

But if you had to pin me up against a wall, I would say the time I spend with some of my girlfriends doing yoga, spa time, and lunches would be the time I take for myself. I enjoy reading when I can, and I love the sun (don’t tell my derma).

Please tell us about the other things you do.

 

I enjoy cooking with my friends and gathering women who feel the same connection to their food.

Cooking and preparing meals 4 burners at a time is actually therapeutic for me. It’s how I would quell the homesickness that I suffered when I first moved to Manila 10 years ago.  If I could prepare the dishes for me and my family that provided us comfort, then I felt better two fold. I am taking care of myself, and taking care of my family.

Through my blogging, I have experienced so many different things, and met so many different people. Since blogging has opened up my world to many different people, I have found so many other parents to connect with and learn from.

I enjoy crafting. Doing yoga. Going out with the girls. And reading.

A friend and I also stared Mothers Who Brunch. This  came together when Sabrina Go and I decided that we wanted to share the joy we find in the kitchen with other Mommas who might find the kitchen intimidating. We realized the fun and friendship that we found cooking up goodness for our families was multiplied when we shared it with other mommas, thereby inspiring them to do the same for their own loved ones.

No matter, whether we are in the kitchen, crafting, or putting together ideas for the next event we would like to host for Mommas of all ages the basic premise is this:

We love brunch because it’s our favorite meal. It’s the most versatile meal of the day. The versatility in this meal mirrors the same way that mothers adapt to meet their families’ needs. While the possibilities for brunch are endless, so are the possibilities when we gather other mommas together.

We inspire one another. We learn from one another. We support one another.

Our mission in Mothers Who Brunch is to encourage hands on moms to do more fun and beautiful things not only in the kitchen, but also in the home, and with her family.

If you want to share your own Juana story, send us an e-mail at hello@www.juana.com.ph or leave us a message on Facebook

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