#29DaysofAwareness February 10th

Today is the 10th day of my #29DaysofAwareness and I must admit it was incredibly long.

But it was truly rewarding. 

Today I spent most of the day in the offices of SM. Together with members of the board of DSAPI, and later on members of the board of The Center for Possibilities, we met with different people from SM Cares for two equally important projects in our family’s life.

As we are nearing The Happy Walk, the members of the DSAPI board finalized the last details of this annual event which we all look forward to. I listened as the employees from each of the different departments of SM explained how things would best flow for our new home in SM MOA for our awareness walk. I watched as I saw the members of the board of DSAPI coordinate their efforts to make sure that all the participants enjoy the celebration honoring the presence of an extra chromosome in all of our lives.

After grabbing a quick coffee and a sandwich with my new assistant Lou, we attended a second meeting (with some of the same people from the first meeting) to try and secure a venue for the documentary in which Gellibean was featured. 

We are hoping to launch this documentary on children with special needs in the third quarter of this year.

I haven’t shared too much about the documentary…I will when the time is right. One thing that I can say is that it will create an awareness and understanding not just for individuals with special needs but also the families that love and support their precious gifts. 

We all know that Gelli loves the camera. (I have no idea where she gets that from.) 

So while, I know this is nothing like a documentary, and not filmed by a director but instead a stage mom with a shaky hand, I think you might enjoy it none the less.

#29DaysofAwareness

 

#29DaysofAwareness Febuary 9th

For this 9th day in my series of #29DaysofAwareness, I would like to share with all of you, one of the many events that took place last year to bring awareness to children, in particular GIRLS of all abilities. Miss Possibilities was born from the love of a mother and her first born child, Johanna. 

Because of Gelli’s extra chromosome I have  had the pleasure of meeting some really incredible people.

These people come from all walks of life, in all fields, and with or without families members who are extra special.

Sometimes, these people have been a source of strength and inspiration to me. Sometimes, I have shared parts of myself with them, knowing that they were looking for the same. Sometimes, these people aren’t even people whom I have met in real life. Others, are friends who were introduced to me by mutual friends or even relatives. 

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Suz with her two girls.

Today, I would like to tell you about my friend Suz. I first heard of Johnmel and Suzanne through one of Nino’s good friends, Jessie. Jessie’s son also attends the same school as Gia does, and they are in the same batch. (So that means that he and his wife Pie, were probably thinking the same things we were this past Saturday night as we sent both of our eldest children off to prom.)

Jessie expressed some concern one day and asked Nino and I for help. He said that Johnmel and Suzanne (who had just moved to Manila from the states) recently welcomed (at that time) a little girl with Down Syndrome into the world. She was their first baby. He asked us to lunch so that we could meet Suz and Johnmel, but unfortunately, because of our schedules we didn’t get together right away.

Instead, the first time we met in person was at the Early Intervention Seminar of November 2012. For that particular seminar, Nino and I were invited to share a little bit about how Early Intervention helped Evangelina reach her milestones. I should have shared more about our therapies and about the things that we did to nurture Gelli’s development. But I remembered what it was like to be sitting in those chairs with swollen eyes and that feeling of being lost. Instead, I chose to share an article I had written not long after Gelli’s birth. I read the article from my printed pdf copy of the magazine that it had been printed in earlier that year for Down Syndrome Consciousness Month. 

This same piece was something that I shared with Suz through Jessie. I felt that if I could bare my soul to Suz…one mother to another…she would see that she wasn’t alone. She would see that there was hope in what seemed like a difficult situation. 

Flash forward to 2015. Suz’s baby is now a toddler who reminds me of Gellibean when she was the same age. (In fact, sometimes, people would even say that Gelli and Joey could be sisters!) Suz and Johnmel welcomed another baby girl into the folds of their family, and Suz had a brilliant idea.

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It all started with a poster that she saw while she was on Easter break 2014 back in California with the family. She saw this poster promoting a pageant for young girls with special needs.

Oh…did I forget to mention that Suz is Beauty Queen herself?  She thought to herself that it would be nice to have such a beauty pageant here in the Philippines for girls with special needs who would want to showcase their talents.

And as she posted on Facebook, she realized that sometimes angels can come in the form of friendships. Her friend, Eric Teng, offered Mango Tree BGC as a venue for an event should she decide to pursue such an endeavor.

Out of this one hopeful post of a momma on Facebook, grew the idea for Miss Possibilities.

So, what does a momma who has an awesome idea do?

I have viber groups for each of my kids' graduating classes. This is one of my favs...SUPER MOMS activate!

I have viber groups for each of my kids’ graduating classes. This is one of my favs…SUPER MOMS activate!

She tells her other momma friends and together they make magic happen.

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Super Moms make Super things happen. Photo Credit: Betty Sy

And boy oh boy was there magic on October 7th last year!

Miss Possibilities was the first pageant for girls with special needs, here in Asia. To my knowledge, there has not been any other pageant of this kind before or since…and I’m so glad I was just a small part of it. 

Best Buddies Philippines was even able to help by fielding volunteers to help the participants through the rehearsals and the program, and leading the pledge to End the R Word.

 
 

Thanks Suz. Thanks for including me. I cried so many happy tears that I think was dehydrated by 10pm.

But I think you already know me by now. I cry when I’m really happy and really grateful. 

Check out Miss Possibilities on Facebook and Instagram.

For questions, inquiries, and ways to donate please email misspossibilitiesph@gmail.com

 

 

 

 

#29DaysofAwareness February 8th

This post for the #29DaysofAwareness is a guest post written by a friend as her final paper for one of her courses towards her degree in Special Education. 

Joy Liza Elmido-Formoso is a co-parent in The Down Syndrome Association of the Philippines, and she is momma to Angel. She decided to go back to school for her Special Education Degree to better equip and empower herself as a parent. She has shared with me that the learning in her classes of 20 somethings and her professors has been both ways, because she has been able to provide great insight for the students and professors alike. Her unique point of view as a parent of a child with Down Syndrome has offered her classmates an education of a different kind.

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Joy has hopes of managing or opening up her own SPED center one day. She has see that many children with special needs cannot afford early intervention to get the head start on life that they desperately need. A SPED center with more affordable rates would make therapies more accessible for parents who want to start their children with the right tools in their development.

ALL I REALLY NEED TO KNOW, I LEARNED THROUGH MY SPECIAL DAUGHTER

In his best-selling book entitled “All I really need to know I learned in Kindergarten,” Robert Fulghum advised his readers to look no further than kindergarten for most of the important lessons they needed for life.

As a special parent, I will attempt to make a list of the things I learned and realized for the past 6 years that helped me be to be a better parent to my special daughter.

  1. Intervene early. The first 3 years is a window of opportunity for our special children because of the plasticity of their brain thus early intervention should be implemented ASAP because it will surely benefit your child’s future.
  2. Our Family. It is essential that my whole family is involved in the development of our special daughter. There should be acceptance from them, taking into consideration their concerns and suggestions tooCSC_8630 copy
  3. Nature vs. Nurture. By nature my special daughter was born with an extra chromosome that makes her very fragile. But I also learned that if I give her the right kind of nurturing through proper care and unconditional love, she will surely bloom and blend well with others.
  4. Knowledge is power! I hunger for more information about my child’s condition so I enrolled in graduate studies major in Special Education. I realized that the more I read and learn about my child’s condition, the more confident and empower I become as a special parent.
  5. It takes a village to raise my special child. Not one professional can cater to all the needs of my special child. Parent’s collaboration with doctors, therapists, SPED teachers and other professionals are highly recommended.
  6. Parents as teachers. Parents make the best teachers but there is no such a thing as perfect parents so we should not fear to commit mistakes.52 copy
  7. Know that every child is unique. The development and learning vary from special child to another because all children have their own strengths, needs and interests.
  8. Discipline is both an art and a science. The art of applying it greatly depends on your family. It’s a trial and error for each child is unique so we need to try different approaches. Be creative; consider interests and learning style because success rate is higher once we get their attention.
  9. Join parent support groups. Groups like DSAPI (Down Syndrome Association of the Philippines) equip special parents with right knowledge and approach, educating and empowering special parents with their various seminars and events.
  10. Not a factory defect. God created everyone with a purpose and children with disabilities are NOT ‘factory-defects’. I believe that God is still perfect and does not make mistakes in creating all His children.angel shirt copy
  11. Dream child. Motherhood should really be about raising, caring and loving the child given to us by God, and NOT the child we thought or dream of having.
  12. Standing out expectations. We live in a world when everyone expects our children to always fit in a group, but as a special parent, I should teach my children to just stay the way they are, special and gifted too in their own little ways.
  13. The teacher and the student. My whole world literally turned upside down when my special daughter came into our family. She eventually becomes my teacher and I became her student. Because through her I realized that they are so many things in my life that I need to UN-learn, RE-learn and MUST-learn so that I can be an effective parent to her by providing every opportunity she deserves in this world.header JOY
  14. Embrace the experience. When I found out my daughter was special, I cried and asked ‘Lord, why me?’ After six long years of struggling and experiencing pain and joy, being in and out of hospitals and doing weekend therapies together–my daughter has taught me on how to be a fighter at a very young age. The question ‘why me’ has turned to ‘why NOT me?’ because being a special parent taught me to never give up. It has exposed me to a special world where unconditional love really exists.

I think the biggest point that Joy made, which resonates with me is number twelve. Even if I spent more than four years learning how to be an effective teacher, nothing could have prepared me for the education my children provide for me on a daily basis. Each of my kids have their own strengths and needs. 

This fact can sometimes challenge me. It can cause me to pause and dig deep. I have to get creative when parenting all of my children and the different ways they learn. Even their love languages are different, which again, is a good reminder for me to be present and aware. 

Gelli has gifted me an awareness that did not exist before…I’m thankful for that.

I am also thankful for friends and acquaintances like Nieves who wrote a guest post a couple of days ago, and for Joy who wrote for me, today. Because of support groups like DSAPI which is listed in number nine, I have been able to ask moms, dads, and siblings of kids who are members of our group to share their stories with you.  In the days and weeks after a shocking diagnosis, these support groups are our lifelines that lead to acceptance and knowing that we are not in this alone.

Thanks Joy for sharing Angel with my readers. I’m looking forward to seeing you at Happy Walk!

If you are interested  in sharing your story here for #29DaysofAwareness or The Down Syndrome Diary Philippines, please do drop me a line. I would love to hear from you.

#29DaysofAwareness Feburary 7th

We have had an eventful weekend. 

Gia attended prom, and as her mom I couldn’t have been more excited for her. 

My Senior Prom was wonderful for me. My mom helped me get ready. She not only helped me attend my fittings in the local bridal shop , she made the appointments for my hair and make up so that I was physically ready for a milestone that marks so many high school careers.

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My boyfriend and I shared a limo with Christine and her boyfriend.

It was never any question of who I would go to the prom with, since I had a boyfriend for a few years already. My prom was everything I wanted it to be. We shared a limo with good friends on the way to and from the prom venue. We laughed. We had fun. We danced as teenagers do, without worry of what tomorrow will bring.

My daughter’s experience with her first prom was a little different, but not much. 

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She has a boy who loves her. He’s good to her. I can see it. He visits her with sweet treats and brings her flowers. He courted her and waited for her to say yes to being his girl. My heart is full for her as her friend, but nervous for her as her mother. 

She loves him too. I can see it when they are together. She watches him move. She teases him on occasion and they laugh. Oh, how they laugh together!

My daughter’s preparations leading up to the event were a tad different than what I was used to growing up in the suburbs of New York. I searched magazines like Cosmopolitan for prom dresses that I liked, and visited the bridal shops near my home to try on the styles that I kept from torn out magazine pages.

Mimi from Bumblebee has been making the kids' costumes and dresses (even for me too) since we moved here in 2006.

Mimi from Bumblebee has been making the kids’ costumes and dresses (even for me too) since we moved here in 2006.

Conversely, Gia pegged the dresses she wanted for inspiration to take to our favorite designer. She pegged her make up looks and her up-dos on Pinterest to show to Tita Tyn. 

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Mimi drew more than enough sketches from Gia’s inspiration pegs for her to choose from.

There was never any doubt that Gia would go with anyone else to her prom either, but there is this movement amongst her generation to make grand gestures of love and affection through promposals.

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Gia showed her Tita Tyn the looks she wanted from her Pinterest board.

So her boy promposed. He got us all in on his grand plan. He called Nino weeks in advance. He planned with Gia’s brothers. He planned with her best friends. He even included Gelli in playing the last and most important role of his grand gesture of love by telling Gia to turn around so she could see him waiting for her and ask her to the dance. 

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Everyone was in on the plan. The beauty of technology now, is that even if Nino and I were in Cebu celebrating his birthday we could be part of it immediately after she said yes.

He gifted her flowers, balloons, and an experience she will remember forever. He let her know his feelings in the sweetest way possible. He made her feel special.

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We prepped for the event by reserving rooms at a hotel near the venue for prom. Gia made plans with her girlfriends to have a slumber party and watch movies after the prom, as opposed to attending the after party. I was relieved she opted to bond with her girls instead of drinking with her batch at a bar where there was no adult supervision.

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All dressed up and ready to cut a rug…I promise I didn’t cry (that hard.)

My girl had one last request. After the prom, she wanted to eat a burger in her prom dress. 

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She’s all grown up.

Her request was granted with burgers at The Belle and Dragon. We sat at another table with other parents so as not to cramp their style.

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I’m not sure what makes me happier. The fact that she has these girls. Or the fact that she has these girls!

I checked in on the girls this morning before going down to breakfast with Nino to see their hotel room littered with empty chip bags and Instamax photos of their fun together. They slept four girls in a bed, sharing a friendship that many girls hope for.

All of the events from the weekend made me feel a little nostalgic. They reminded me of a time long ago where I was filled with hope and the naïveté of adolescence.

But they also evoke a little bit of sadness, fear and maybe even worry.

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When Evangelina was born, I worried. 

I worried that I wouldn’t be able to handle the newfound motherhood or raising a child with special needs. I worried about the discrimination I knew she would suffer. I worried about whether or not she would be able to stand for her older sister as her maid of honor. 

But while that initial onset of worry got me to thinking about the hope of Gia’s one day marriage, one vision I didn’t foresee was the prom. 

I didn’t foresee the girlfriends that I want both  of my daughters to bond with. I didn’t think about young love and the excitement or happiness my daughters could experience at prom or in the days and weeks of preparation for their own current versions of this milestone event. 

It hadn’t occurred to me then, what either of them would envision as their perfect night of friendship and young love for their OWN proms. (If that’s what they wanted.) 

But now, as I sit here, and I am forced to think…

I think about all of the work I’m doing to further inclusion and I am prayerful

I pray for a day when girls like Gelli are not stifled or limited because of the stigma of disability.

I’m hopeful

Hopeful for the day when Gelli attends high school that she will have girlfriends to laugh and bond with, who love her for who she is. Hopeful that those same girlfriends will be present when she suffers heartache or needs the comfort of a sister from another mother who stands by her side.

I’m optimistic

Optimistic for the future that can include Gelli experiencing all the same things that I had as a young girl. 

Young love, and a courtship where she feels special and loved and honored…

A prom where she can dance the night away, wear flowers on her arm, and a boy who will adore her, because my girl loves to dance and deserves to know romantic love…

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#29DaysofAwareness is a great exercise for me. I’ve been enjoying sharing a little bit more about my hopes and fears as Gelli’s Momma.

I will not rush the days from now till then, instead, I will continue to bring awareness to these same wishes and hopes that brings so many girls like me, Gia, and Gelli to a prom that they can enjoy which is exactly right for them. 

It’s funny how things come together at just the right time. It’s funny how when I come to some revelation or epiphany in my parenting of Gelli and I share it here with all of you that things just sync…

This is why I’m excited to share how another group is bringing awareness to children and teens and adults with special needs in another way. 

This coming Saturday, here in Manila, more than one hundred teens and young adults have been invited to enjoy their own prom. The Tim Tebow Foundation will be holding a prom of a very special kind. I can’t wait to see the photos from A Night To Shine and hear of the stories that will be told.. 

 

#29DaysofAwareness February 6th

This post for the #29DaysofAwareness is a guest post written by a friend.

It was originally published on November 7, 2015 on her blog, Hooked!

Her name is Nieves Reyes, and she has a sister with Down Syndrome. Her sister’s name is Clara. I have had the pleasure of spending time with Clara and her family through quite a few events held by both DSAPI and by Best Buddies. We have partied like rock stars for the annual holiday party and we have even done some yoga together.

While I am thankful for so many things in my parenting Gelli, I am truly grateful for the people I have met. Thanks Nieves for sharing part of your story with me and my readers.

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October 29, 1994 was the day our lives as a family changed, forever. Most especially mine. Let me take you a few years back as I reminisce on the day I wished for a younger sibling. At almost seven years old, I said I wanted a sister. And, though vaguely, I recall that fateful day the universe granted my wish. She was not how I expected her to be. She is different. She was born special. She was born with Down Syndrome (also known as Trisomy 21).

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When she came home, my dad gathered the family along with our other relatives who is equally excited to see her. I sensed the sadness though. He poured his heart to us, it did not even seem that he struggled to pull himself together as he delivered what we all thought to be a sad news. I didn’t listen to the rest of his speech. I grabbed the Encyclopedia and read about her condition. In so many words, all I could recall were these words “People with Down Syndrome could not live long.” To a six year old, this translated as “my sister will die young” and by young, for me, it meant she’ll die while she’s still a baby. This information has led me to tears. Eventually, I see the whole family in tears too. Quite a heavy sight but still we share hopeful sighs. Fast forward to today, those tears turned into happy ones, fears into hopes, and uncertainties into learning experiences. How? She may be different, but aren’t we all are? So here’s how she made me change the way I see the world. Who is she? Well, here are the 21 things her extra chromosome has taught me:

  1. COMPASSION. I am now more compassionate towards other people. In becoming a source of hope in times of weakness, to be their strength when they feel like faltering. Because that is how she is to me. Her concern for me and to other people move me. It seems to me that my sister sees only the good in people that others rarely see.
  2. LAUGHTER. She taught me to laugh without a care and to just enjoy life whatever the circumstance may be. We laugh at our mistakes, we cheer each other with our achievements and just have a good time when we’re together (or in some instances, even when we’re far apart). We share our laughter in almost everything we enjoy doing – coloring books, watching TV and movies, or simply singing and dancing together.
  3. ACCEPTING. She made me see beauty through other people’s imperfections. What others may lack, may be complemented by another. A chain of life, probably linking us together to live harmoniously despite our differences. Today, I am able to accept other people’s imperfections, and see the positive in some negatives.12665815_1002533816467045_1724912219_n
  4. RESOURCEFULNESS and CREATIVITY. Adjusting our life altogether when my sister was born is no mean feat. Her toys were more DIY. We learned to make her toys and create a mobile attached to her crib from simple household items. The rattles were made from small stones inside empty bottles, to produce sound. Even the crumpling of paper and plastic bags becomes a stimulus. We were told that they learn best by imitation, so that we opted to remove our furniture and had the whole living room carpeted and had mirror on our walls. We crawled together with her and actually enjoyed it. We had a whole sandbox made in the garden for her, because she was learning about textures. Later, when she was learning to walk, we had a whole plank of wood in the sala (living room) which we pasted footprints and which Clara stepped on to balance herself in walking straight. Well, innovations have always been welcome.
  5. ANIMATED. Singing songs is not just about, well, singing it out. You have to dance it out too! So as we listen to Barney’s songs and dancing along with them, we also imitate the facial expressions and other actions that goes with the song. It does not end there. We graduated from Barney, to High 5, High School Musical and Glee. Story time is also like a mini theater play as I play one character after another. Seeing her react bubbly and lively to my stories make me want to share more of stories with her.
  6. EVERYDAY IS MAGICAL. For how can one explain her love for dancing and singing and performing it with gusto! She never had her first word, because she sang her first word “Mama” popularized by the Spice Girls. Our family never stopped the possibilities of things which she is capable of doing. Proudly, my sister aside from being a good dancer, has also become a pretty model, a fancy majorette and a pretty drummer girl. Magical, indeed!
  7. AFFECTIONATE. I have never seen someone always ready and willing to share warm hugs to almost everyone. Seeing her do this almost everyday makes me want to pay forward the act by sharing with others the love I feel from her. Everyone deserves to feel loved. As Paulo Coelho once said, “a hug adds life to one’s years”.12626215_1002533679800392_1083553024_n
  8. REASON FOR BEING. Life is not always fair, nothing is perfect. There are times when I would wish to drop out of the race so to speak, but my sister keeps me going. She gives me reason to fulfill my dreams and reach my goals, since she is my inspiration personified. I always see hope in her, and hope in myself, that together we will hurdle some failures and journey towards success.
  9. IMPORTANCE. I am able to see that people need to know how it is to live an extraordinary life when given this chance of having her in the family. “No one is indispensable” and like my sister, I discovered the importance of the people around me. I was able to discover the synergy of one’s weakness and one’s strength.
  10. AVAILABILITY. If someone is important to you, no matter how stressed you are from work you will and you can always make yourself available, anytime and anywhere for that person. And that is what I am here for as her elder sibling.
  11. PATIENCE. It has become the biggest virtue in my family. We waited because she was really growing up “slow” physically and mentally. But we managed to pull through her disability, by waiting for her to develop the fullest of her potential. And I am happy that everything is paying off.
  12. APPRECIATION. She taught me to appreciate not only the big things but the little things in life. Her achievements are milestones which I learned to appreciate. It was normal for me to see a child go up and stand on a chair, but when Clara did it with a lot of effort, it was greatly appreciated by us.
  13. LEVEL-HEADEDNESS. I never saw her to be proud of herself. She exudes another positive energy which is, humility. She humbles me by the way she talks, she hugs and says “I love you.”
  14. MAGNET OF POSITIVITY. It is through her that I realize that anger would not lead us anywhere. But with a positive mind, all impossibilities become possible. She also exudes a charm like no other. When each one of us arrives home, she is a one-man welcome committee.
  15. ADVOCACY for persons with disabilities. I am able to share with the world about their abilities and limitless possibilities. I have become a staunch advocate of “teaching” society about what my special sister could do and how i embraced this wonderful life with her. I am able to also share my experiences with her and help make people see beyond their condition. I am part of the Sibling Support Group of the Down Syndrome Association, who promotes awareness of people with disabilities.
  16. RESPECT. I have high respect for them because I know they deserve such respect. I am happy that society is beginning to respect them as well.
  17. YOUTHFULNESS. Our play time did not end in our childhood. Even up to this day, we still bond through songs and dances. Sometimes before bedtime, we even play “lugasa” or a term my parents use for “rough play”. We are all young because of her.
  18. ENERGETIC. Maybe, well just maybe, that’s one reason why I got into theatre and am more inclined to perform. Because that’s also how she is. Despite the ugly looks some ignorant people throw at her, she continues to be her bubbly self. Showing off her talents whenever there’s an opportunity. And mind you, she is always a performer too in their school programs. (For two consecutive years now, she has essayed the role of Mama Mary in their Christmas tableau.)
  19. SELFLESS.Sharing my time with others whenever I can and just pouring out my heart to others, especially with those who need it most.
  20. UNDERSTANDING. She has glued us together, and she has given me that kind of understanding, that helps me see the beauty of the people around me, despite the cruelty of some.
  21. LOVE. This is what she has given me-unconditional love. Love without expecting something in return. Love without limits, no grudges, always forgiving.

 

 

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These 21 things have made me see beyond her and beyond myself, making me who I am today. To you my dear sweetie, Clara Maria! Thank you for being you. I will forever be grateful to the one who gave you to me, to us. To sum it all up, she is like an angel personified. Indeed, you changed our lives and made it less ordinary. I love you, we love you. And we will love you more than words can say, more than you will ever know.

If you’d like to catch up with Nieves on her own blog where she writes about all things that interest here, click here.

#29DaysofAwareness February 5th

As part of my #29DaysofAwareness I have asked friends and family to write a post on anything that they would like that relates to Down Syndrome.

I have always told my kids that they are a team. One thing I didn't realize is that they were a team long before I was telling them so. Photo Credit: Jay Santos

I have always told my kids that they are a team. One thing I didn’t realize is that they were a team long before I was telling them so. Photo Credit: Jay Santos

Because today is Miguel’s Birthday, I have asked him to put something simple together for Gellibean for his guest post.

He opted to write a poem.

G-orgeous

E-pically Awesome

L-ucky

L-ike the most amazing person ever

I-mportant in my life

When Gelli was born I went through a gamut of emotions in those first few moments after her neonatologist handing me a diagnosis based on markers for Down Syndrome. I laid in a hospital bed, grappling with fear, guilt, and sadness. Emotionally, I was all over the place and I had definitely lost my way.

Earlier that morning, when I started laboring, we set some plans with the kids. We told them to finish out their day at school so that after school was over they could proceed to the hospital and have merienda together. I knew they were looking forward to meeting their new baby sister.

The kids had all given us input…we named our baby together. They agreed that she should be called Angelina. (Nino and I decided after she was born to name her Evangelina, which means God’s gift.) We decorated the nursery together, picked out baby clothes, and all waited patiently for her arrival.

The whole family was ready for our sixth and final member to join us.

But after giving birth, when I had enough time to think about it, I asked Nino not to have the kids come anymore. To be honest, I wanted time to think about how I was going to explain Down Syndrome to them. I thought that how I explained everything to my three big kids would lay the groundwork for our family, their understanding and their love for their baby sister.

US. Four and half years later. Photo Credit: Jay Santos

US. Four and half years later. Photo Credit: Jay Santos

Nino convinced me that they should still come as planned. He said it would be terribly disappointing for everyone if I changed the plans and didn’t allow them to come and see their baby sister. They would worry, and that would be unfair.

Nino said he would take care of it. He said we didn’t  have to explain her extra chromosome right away…

I’m glad he pushed me to to follow through with our plan.

When I was going back and forth to the PICU, I would come home. Prepare Dinner. Put the kids to bed. Then pack lunches and send them off to school the next day. Since Gelli was born at the end of August, we had Lingo Ng Wika to prepare for. After I sent the kids to school on this particular day, I went back to the hospital to do it all over again.

When I was going back and forth to the PICU, I would come home. Prepare Dinner. Put the kids to bed. Then pack lunches and send them off to school the next day. Since Gelli was born at the end of August, we had Lingo Ng Wika to prepare for. After I sent the kids to school on this particular day, I went back to the hospital to do it all over again.

The kids arrived. They all gave me kisses and proceeded to the PICU to meet their newest sibling, while I waited in the room. Gelli had to be monitored closely because of her condition. She was born in distress. She was blue, had duodenal atresia, and the bile had to be drained from her stomach. They were monitoring her oxygen, while testing the condition of her heart and checking for any other possible complications that might inhibit the corrective surgery that was scheduled to take place early the next day.

Because my epidural was still wearing off, it was hard for me to walk down with them.

When they entered the hospital room again, I asked each of them what they thought of their little sister. This was a moment that will forever be ingrained in my memory. This was the beginning of my education as a mom of a child with special needs. This was the moment when my three big kids would “school me” in a lesson of love.

Gia said, “She’s so tiny, Mom!”

Miguel said, “She’s cute as a button!”

Diego said, “She’s beautiful, Mom. When can we take her home?”

Their reactions, so pure and full of love opened my eyes to the gift I had been given. I went back in time to a yoga retreat I had attended when I was going through parenting challenges with Miguel. My teacher said we are always in learning situations. Sometimes we are the teacher, sometimes we are the student.

Now, I have always shared how even if I’m a teacher, what my students don’t know, or in this case, my children…is just how much I learn from them.

So excited. These three were counting the days till their little sister could come home. Here they are on the first night we were complete.

So excited. These three were counting the days till their little sister could come home. Here they are on the first night we were complete.

How lucky am I?

Today, I celebrate my son’s birthday.

I celebrate my daughter’s extra chromosome. 

And I remember to be thankful for each of them with all of the differences and their similarities, and their amazing love for each other.

Happy Birthday Miggy Mange. Thanks for writing a short poem for your baby sister. Thanks for teaching me about how easy it is to love you and your siblings each and every day.

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Happy Birthday Mig. Love you to the moon and back.

Parts of this post were taken from my very first foray in writing in a very public way.

In 2011, I pitched an article on DS Awareness to my friend Barni Alunan Escaler who was an editor at Working Mom at the time. I took forever to write that piece. I cried my eyes out and wrote a novel. It was cathartic. It was exactly what I needed to begin my journey in writing and sharing our stories as Gelli’s mom. 

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#29DaysofAwareness February 4th

As part of my #29DaysofAwareness campaign, I will continue to share all things related to my journey as a parent of a child with Down Syndrome. Down Syndrome Consciousness Month gets an extra day in 2016  because it’s a leap year, and I couldn’t be happier to add an additional post to my roster.

One of the things that I have loved about my journey as Gelli’s momma is all of the other amazing parents I have come across through the different communities I am part of. 

I have already written about (on quite a few occasions) about how important DSAPI was in helping Nino and I map out a plan of care for Gelli when she was a peanut. Starting with the Early Intervention Seminar was the best thing we could do to ensure proper care and development of our little one.

Best Buddies is an organization which furthers inclusion here in the Philippines. Together with school chapters, faculty advisors, volunteers, the Citizens group, and of course the students all involved, we are forging ahead one friendship at a time.

The online community has been a source of comfort for me. Being from New York, I have often looked to social media as a way of keeping in touch with family and friends back home. When Gelli was born, social media became so much more than that for me. It became a way to tap other moms for help and questions that I had in our everyday life. Just like I look for inspiration in packing lunches for the kids through searching hashtags, I look to twitter for the current studies and news regarding Down Syndrome and Special Needs.

Through Facebook, I discovered The Down Syndrome Diary

And of course with the help of the internet, I found the Momma BEHIND The Down Syndrome Diary. Jamie Freeman is Ben’s Momma. She pens the blog Ben Through it All. And she is brilliant. 

Screen Shot: Ben Through It All

Screen Shot: Ben Through It All

Jamie’s idea was simple. She remembered being hit with a ton of medical terms when she was handed Ben’s diagnosis. Jamie was given Ben’s diagnosis while he was in utero so she had time to let it all sink in. She shares very frankly how hard it was to accept that her son had Down Syndrome. Her story is honest and comforting to read, even if I know our diagnoses were handed to us differently. You can read about her story here.

Jamie wanted to try and give someone else who might be handed the same diagnosis of Trisomy 21 something a little different. 

The vision of the diary, when it is full, is to have it published for new parents that have just received a diagnosis to receive.  We are pouring our hearts into these stories with the hopes that someone might find comfort in our words as they are being bombarded with medical terms.

If knowledge is power.

Shared stories are comfort.

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I once read somewhere (or maybe it was in one of the talks that I attended,) that our “Stories tied together is our LIFE.”

We share our stories with others and we connect. Most of the time, you benefit greatly from sharing. I know for sure, I have always benefited when someone is open enough to their story with me.

It’s that gift of perspective that I have often referred to here on the blog as well.

Y’all know what I’m referring to, right?

So, imagine how different the experience would be if you received a diagnosis with a plethora of stories all written by loved ones whose lives were changed by an extra chromosome FOR THE BETTER?

Photo Credit: The Down Syndrome Diary. Check out Tara's blog Happy Soul Project.

Photo Credit: The Down Syndrome Diary. Check out Tara’s blog Happy Soul Project.

So, the moment I found the Facebook page I sent a private message to Jamie in the hopes that I could be a part of this diary that was circling the globe. When she responded, I couldn’t have been more disappointed. The DSD had already had so many story tellers that she had to turn people away. There was no way that all of the volunteer story tellers could fit in that one beautiful leather bound diary after all. 

Luckily, for me, when I broached the subject of possibly starting another diary in another country where we could fill in our entries in Tagalog and various dialects that are prevalent in the different provinces here in the Philippines, Jamie was open to the idea.

Together, we thought it would be a wonderful opportunity for Filipino parents and siblings to be able to share their experiences in whichever language they felt comfortable writing in.

Jamie and I skyped, messaged, and visited with each other Facebook. She planned an awesome Halloween fundraiser so that she could buy all the leather bound journals to send out to all over the world. She has already started pursuing The Down Syndrome Diary Non Profit Status in the U.S. to further her cause of storytelling. 

To date, Jamie has had thousands of requests from parents to be a part of this amazing endeavor.

And we are so lucky we can be part of it all….right…here…

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I was so excited to open my package when I returned home from Cebu with Nino. I was so emotional, I cried.

Thank you Jamie for inspiring us to share our stories if for nothing else, than to help one another.

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I can’t wait to read all of the beautiful stories we have to share right here, in the Philippines.

If you’d like to learn more about The Down Syndrome Diary visit the website or the Facebook page.

If you’d like to learn more about The Down Syndrome Diary Philippines check out the Facebook page.

I can’t wait to sit down with this diary and write just a small piece of Gelli’s story which is so intertwined with mine. Even more so, I can’t wait to pass it on to other mommas and poppas who might want to share their stories too…It’s going to be beautiful.

Would you like to take part in this endeavor with me? Please let me know by commenting below or sending us a message on The Down Syndrome Diary Philippines Facebook page.

#29DaysofAwareness February 3rd

For the third day of #29DaysofAwareness, I would like to share a little bit about what we do at Best Buddies.

Best Buddies Philippines is about three years old here in the Philippines. I first learned about Best Buddies from my friend Anj Onrubia. Anj contacted me here on the blog when I first started writing. She, too, had a blog about her parenting experiences with her son Zo. Zo has autism and just celebrated his 13th birthday. I am so grateful for Anj and her desire to make the world a better place for Zo. It is because of her drive, commitment, and dedication that we have Best Buddies here, in the Philippines.

I don’t think I could stress it more. 

As a parent of a child with special needs, I looked for a community. I looked for the connection with other parents who understood my situation. I wanted understanding, compassion, and empathy. I think no matter what you’re going through in life, it’s always a little easier when you have a friend. This is why when Gelli was born I scoured the internet and joined DSAPI. I truly believe that no matter what the challenges are that we may be handed in life, the load can always be made lighter by a friend. 

Sometimes, we just need a friend to listen. Sometimes, we just need a friend to hang out and be ourselves with. Sometimes we need a friend because we need a shoulder to cry on. Sometimes, we just need a friend to accept us as we are, without and expectations or judgement. Many times we just need a friend with whom we can celebrate the joys and triumphs of life…someone who we can celebrate with and laugh.

This is why Best Buddies is so important. 

Studies have shown that as a child with special needs grows older, his circle of friends becomes smaller and smaller. 

Throughout my children’s lives, I have nurtured the friendships that I could see were healthy. I would schedule playdates when they were smaller. Of course, as my children have grown, I have guided them in friendships that I knew were good for them, but now-they are the ones who choose whom they spend time with. They know the friends that make them feel good, and I encourage these relationships, because I know how much my friends mean to me.

Anthony Kennedy Shriver had a vision almost 27 years ago. He knew that as children with special needs grow into adulthood their friendships may dwindle, leaving a void in their lives. 

As human beings, we all look for some kind of connection. That’s a fact.

So he started Best Buddies on the Georgetown Campus. 

The idea is simple.

Best Buddies furthers INCLUSION through one to one friendships. While we have 8 different programs with many different partners furthering this cause in more than 50 countries worldwide, what I would like to tell you about is simple.

Today, I want to share what we do in Best Buddies Philippines.

WE BRING PEOPLE TOGETHER.

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During our Open House, we were able to introduce our mission of inclusion through one-to-one friendship with the help of Best Buddies International.

WE BOWL.

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Thanks to generous sponsors like SM CARES we are able to get together with our buddies for some bowling fun.

WE DO YOGA.

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Last year, I had the privilege to teach yoga to some of our buddies in an introductory class that was fun and full of laughter. Thank you Yoga + for sponsoring our healthy session of friendship!

WE VISIT MUSEUMS.

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Last summer, we all took a field trip to The Mind Museum.

WE PLAY BINGO

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In one of our first gatherings at DLSZ for our buddies we played Bingo together. Teams won prizes where they could nurture their friendships like a meal out or a visit to the The Mind Museum.

WE COMPETE IN FRIENDLY GAMES.

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We hold friendly competitions like an Amazing Race on the DLSZ campus for Buddies to compete together.

WE ZUMBA!

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We Zumba with friends like Zumba Master Roxy.

WE PARTY LIKE ROCKSTARS.

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We plan Filipino Fiestas and get together often. Photo Credit: MRLightworkz Photography

WE KARAOKE.

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Our buddies celebrate birthdays together by singing! Photo Credit: Cathy Cham

WE EAT.

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Our buddies LOVE TO EAT! Photo Credit: Best Buddies Manila

WE WATCH MOVIES.

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Our buddies make plans with one another. They watch movies and have a snack out in ATC. Photo Credit: Joie De Luzuriaga

WE SUPPORT ONE ANOTHER.

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We supported all of our buddies who volunteer with ASP through the Angel Walk. Photo Credit: Jun Cham

Right now, Best Buddies (and inclusion) is still in its infancy here in the Philippines. We are growing strong. 

We have chapters in:

  • private schools
  • a public school
  • a college

We have an active Citizens Group who get together regularly for wholesome events planned by the buddies themselves.

We have adults with autism working and leading productive lives through our partnership with Unilab Foundation.

If you would like to know more about Best Buddies Philippines, check out our Facebook page, or email us at bestbuddiesmanila@gmail.com.

Come and hang out with us. Make a friend. Be a FRIEND. Be a BUDDY. Not a bully.

 

 

 

 

#29DaysofAwareness February 2nd

The Down Syndrome Association of the Philippines Inc. was the first place I looked to for help, after I had ordered all my books from Amazon, and scoured the internet for blogs and online resources.

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Photo Credit: DSAPI FB page

They were the guiding light that I knew I needed.

There was one particular doctor who sat with me for a long while when Gelli was in the PICU. Dr. Resty was calming, in a time when I was full of anxiety and worry. He explained things simply to me, when it came to Gelli’s healing from the corrective surgery from her duodenal atresia. He encouraged me to continue pumping milk when I went home and even in the hospital while sitting with Gelli in the PICU. I remember him stressing how breastmilk aides in cognitive development, and I promised myself that I would nurse Gelli as long as I could.

I already understood the benefits of colostrum, antibodies, and the immunity my milk provided for all of my babies before Evangelina was born, but for some reason, when it came to breastfeeding them I couldn’t make it past the 8 month mark. 

He wrote down Down Syndrome Association Philippines Inc. on a piece of paper and gave it to me when I was going home one night. I told him I would look it up and join the group later that night.

Truth is, I quietly stalked the DSAPI group for about a month before I got up the courage to post. I liked the posts but did not comment. I searched the photos posted by fellow parents looking for a glimmer of hope and maybe even a friendship which would be nurtured by the commonality of our children’s extra chromosomes. 

The first photo I posted of Gelli in the DSAPI group was when she was about this age.

The first photo I posted of Gelli in the DSAPI group was when she was about this age.

I can’t remember if Adette invited me to the Early Intervention Seminar in November, or if I discovered it in the Facebook Events tab from the group. I do remember telling Nino that I wanted to go and see what it was all about. It was a nominal fee to join, and there was a map showing us the easiest way to get to the venue. I told him that we should bring our yaya (nanny) at the time as well.

She should learn as we learn, right?

Even if I was the primary caretaker of Gelli, and I didn’t let anyone bathe her or put her to sleep, I still felt that the yaya could learn more about the special care that Gelli might need if she attended the seminar with us.

Nino didn’t really want to attend the Early Intervention Seminar. I remember him saying that he “wasn’t ready.” I respected the fact that he didn’t want to go, but I said that I was going. I was willing to share with him what I learned, but I wasn’t willing to miss this EIS because I knew the next one wouldn’t be for another 4 months. 

Time is precious when you are talking about Early Intervention. The sooner, the BETTER…

Because I was adamant about attending the seminar, Nino decided to me to join me, and for that I was happy. I was looking forward to the parents we would meet and the things we would learn.

I have viber groups for each of my kids' graduating classes. This is one of my favs...SUPER MOMS activate!

I have viber groups for each of my kids’ graduating classes. This group is one of my favs…SUPER MOMS activate!

Through that EIS, we met other parents who had babies days before and after Gelli was born. We connected with them, their situations, and through the shared emotions that we were afraid to share with other parents who might not understand. 

We looked up to the parents with older children. We asked what worked, and if things got easier as our children would grow. Even now, as Gelli is approaching her 5th birthday, we enjoy getting together with the couples we met during our very first EIS, and the couples we met in succeeding seminars as well. 

DSAPI continues to hold Early Intervention Seminars for new parents. They have even added another seminar which fills the gap for growing kids. 

Together with the board of DSAPI in one of the member's homes. Photo Credit: Agnes De Lapena

Together with the board of DSAPI in one of the member’s homes. Photo Credit: Agnes De Lapena

We kick off the month long celebration in February with Tee Up for Down. This year, the golf tournament is on February 5th. If you participate in the tournament, you will know that your donations cover the medical outreaches and seminars held in all of the different chapters all over the country. From EIS, to the many other seminars catering to parents and caregivers alike, DSAPI continues to provide the support network that parents like me, need and look for. 

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Jeremy is the first young man that we met when we attended EIS. He asked Nino “You play golf?”

Because sometimes, we just want to know that we are not in this alone.

Towards the end of the month, we will be walking together with all of our friends in THE HAPPY WALK.

Would you like to walk with us? We are prepping for Team Gellibean already! 

Keep coming back all month to learn more about Down Syndrome and #29DaysofAwareness.

#29DaysofAwareness February 1st

It’s February First. 

And in our house we have a lot of reasons to celebrate.

We have Miguel’s birthday.

This year, we also have Gia’s Junior Senior Prom.

It’s the month of St. Valentine. 

And it’s Down Syndrome Consciousness Month.

We will celebrate Gelli and her extra chromosome all month. Photo Credit: Jay Santos Photography

We will celebrate Gelli and her extra chromosome all month. Photo Credit: Jay Santos Photography

Here are some facts to help you understand a little bit about Trisomy 21 and our daughter Evangelina. We were not prepared for Gelli’s extra chromosome when she was born. As soon as I understood what her extra chromosome meant from the doctor, I took to the internet and read a list much like this.

I read lots of lists. I read lots of articles. I read blogs and write ups by other parents chronicling their experiences and journey in parenting.

But what I didn’t read, was a list with personal experiences. Here is “a list,” but with my personal experiences in being Gelli’s Momma.

You can also check out this page on the NDSS website where I pulled these from.

  • Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. 
  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%.

Gellibean has T-21.

  • Down syndrome is the most commonly occurring chromosomal condition. One in every 800 babies in the Philippines is born with Down syndrome.

I think this statistic changes depending on the country you live in. 

  • Down syndrome occurs in people of all races and economic levels. 
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

SIDE NOTE: When I first started researching on Google, I somehow missed the Alzheimer’s part. Months after Gelli was born, I had finally gotten to a good place. I was ready to attack my new parenthood with gusto. In line with preparing for Gelli’s medical care, I started researching for doctors’ appointments and well visits to plot them in my calendar. In my research, I came across an article that told me Gelli has a really good chance of developing this debilitating disease, that already runs in my family.

I read the article in its entirety.

And stayed in bed for three days.

I take things one day at a time. I keep up with Gelli’s well visits, and just address each sniffle or symptom as they come. I have decided that I cannot spend my entire life (or Gelli’s) worrying about the what ifs. 

  • A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all. 

These characteristics were all present in Gelli at birth. She has the Palmar Crease, slighted slanted eyes, and had low muscle tone at birth. Even her big toe is just a little bit further apart from her other toes. She was also born with Duodenal Atresia. At less than one day, old she underwent surgery to correct her malrotated intestines and by pass the intestinal obstruction.

  • Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
  • People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways.

Ok. This is why I work so hard. Inclusion in the Philippines is in its infancy. Through the volunteer work I do with DSAPI and BEST BUDDIES Philippines, and Unilab Foundation, I hope to help create these opportunities for Gelli’s generation. I want Gelli to have the ability to seek higher education. I want Gelli to find a meaningful way to contribute to society, and I want her to achieve some sort of independence, if that’s what she wants. I want so much more than the opportunities that are being afforded her, and people like her right now. 

  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

I am sure that I will learn more about Gelli’s strengths and talents as she grows older. One strength I am sure she is capable of, it is her ability to influence change. I know that the more I share how beautiful she is, (inside and out) we will be able to subtly change people’s perception of all children with Down Syndrome…everywhere.

  • Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to lead fulfilling and productive lives. 

They say it takes a village. Our village for Gelli is growing by the minute. Even just having you read about our journey together here, your comments, your shares, and your likes on FB helps us in our cause of creating a more aware and accepting environment of ALL children with special needs.

So for that, I THANK YOU.

For the entire month of February, I’ll do my best to post every day. I want to share the ins and outs as well as  little snippets of our lives with Gelli. I will share more about the organizations that we are involved in, bloggers that I follow and look up to. My goal is to further #inclusion and create awareness of children and adults with Down Syndrome. I hope to paint a realistic, yet positive picture of what parenting Gelli has been like for me. The good, the bad, and even the ugly, but always with a positive spin. 

The Down Syndrome Association of the Philippines will lead this month long celebration of awareness. Please be sure to visit our FB group for our calendar of events.  

#29DaysofAwareness