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Advocate Down Syndrome

Sharing is Caring

 

Weekends are normally very busy in our household. This past weekend we had the normally scheduled birthday parties (of which the children had three to attend) as well as attending an event for DSAPI.  Nino and I were asked to speak for a little while at the Early Intervention Seminar which is given for new parents by The Down Syndrome Association of the Philippines. I would say that it a very important event of our activities this past weekend because it gave Nino and I the opportunity to come full circle.

We got up extra early on Sunday morning to drive over to San Carlos Seminary on EDSA. What’s important about this little fact is that we did this very same thing exactly one year ago. However, the difference in how we felt in November 2011 is worlds away from how we felt two days ago. What a difference one year makes!

It seems like only yesterday when Gelli was born and Nino and I were new parents trying to find our way and make sense of the new situation we were in. Our daughter was born with special needs and we were not sure how to rise to the challenge of raising a child who was born with Down Syndrome.

 

Evangelina just days after her surgery to correct Duodenal Atresia. She was still receiving nourishment intravenously. August 2011

One of our neonatologists in St. Luke’s had told me about the Down Syndrome Association of the Philippines while Gelli was still in the nicu. She was still recovering from her surgery and I was equipped with a journal, a pen and the internet. Google became my best friend. Dr. Bautista told me about DSAPI and when I had the time I researched the group on fb.

Like many things that are new to us, I approached the fb group with a certain amount of apprehension. I didn’t know what to expect so instead of jumping in (like I usually do in life) I just scoured the pages for some sort of comfort and understanding. I saw parents proud of their children, posting pictures of kids in costume for Halloween and smiling babies. I read anecdotes of parents sharing moments of pride. Even my first interaction in the group was just to “like” some of the photos of the children that I thought were cute. I was being cautious, for I wasn’t sure about the group, how they would receive me and my daughter and if I would find a place there for us to grow together.

Shortly after I joined the fb group, one of the members invited me to the Early Intervention Seminar. I was sure I wanted to attend this seminar because I needed as much information as I could get my hands on to help Nino and me in raising our daughter. I had ordered quite a few books from the States to help us on our journey, but I wanted more. Nino had reservations about attending a large group gathering because we were warned not to bring Gelli around lots of people. I wouldn’t allow anyone else to take care of her while she was still that small so I convinced Nino that we could bring her with minimal risk to this event that I desperately wanted to attend.

With Gelli in tow, we attended our first gathering hosted by the Down Syndrome Association of the Philippines Inc.

We listened as another couple shared their story and watched as their almost one year old daughter played quietly near them. Seeing Adeline Lois at that time gave me hope. Seeing her somehow reassured me that everything would be ok…that Gelli would continue to grow with our help, and one day soon she would be like this happy little girl I was looking at.

I listened, I took notes, and I cried. I know that all of it was really uncomfortable for Nino at that time, so as the morning progressed into afternoon and the speakers were speaking straight tagalog, it seemed natural to make a quick exit so that we could wrap our heads around the day’s activities. (I have a pretty good grasp on Tagalog if it is spoken slowly-but sometimes, if it is really fast I get lost in translating in my head the words that I can pick up on.)

Information and handouts available for those who attend the seminar

Fast forward one year later. An invitation comes this time to attend the Early Intervention Seminar NOT as a new parent, but instead as parents who might want to share a little bit of their story with parents of brand new babies.

 

New Parents and Grandparents attending EIS

Nino and I didn’t want to over think what we were going to share so we just said we would speak from the heart. And we did. And we cried again, but this time for different reasons. It’s not that we were sad, in fact we were crying and filled with gratitude.

Welcoming the new parents to the DSAPI family.

There is something to be said about sharing your story. I know I’m one of those people that feel good after I share. It’s cathartic. Sometimes even just talking about something with another person who “gets it” can ease the pain and fear of a new situation. And in DSAPI, the parents do “get it.” We are all fighting the same fight. The fight to raise our children the best way we can with the tools that are accessible to us here in the Philippines. Fighting that fight and knowing that there are other parents just like you with whom you can share your plight with somehow makes me feel like the odds are already in my favor.

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Comments

  1. Lia Bernardo says

    November 13, 2012 at 6:47 pm

    You and Nino are such awesome parents, no wonder Gelli chose you guys. Keep this up Michelle, you will be touching many lives and will be healing all those who come to this space. Love and light to you and your family, lia

    • michelle says

      November 14, 2012 at 4:30 pm

      Thanks Lia. I am so glad that Gelli chose us too. I didn’t know how lucky I was when she first entered our lives, but I sure do know now. xoxo

  2. rey reyes says

    November 13, 2012 at 7:40 pm

    you had me at sharing… i just gave in with caring… great! wow! speechless… <3

    • michelle says

      November 14, 2012 at 4:35 pm

      Thanks Rey! T’was good to see you and Bang on Sunday. See you both again next month?

  3. Jennifer Madigan Jenkins says

    November 13, 2012 at 7:42 pm

    Beautiful, Michelle, Beautiful!!

    • michelle says

      November 14, 2012 at 4:34 pm

      Thanks Maddy. Miss you.

  4. Marilyn Narson says

    November 13, 2012 at 10:31 pm

    What a beautiful told journey. You are blessed in having Gelli and she is blessed in having such loving parents and family. Wishing you a Blessed and Happy Thanksgiving as all your children continue to grow in warmth and love.

    • michelle says

      November 14, 2012 at 4:36 pm

      Thanks Aunt Mar. It truly is a wonderful journey we are on. AND she is only one year old! Imagine all the wonderful things she will continue to teach me as we grow up together!! Happy Thanksgiving to you and Uncle Paulie 🙂 xoxo

  5. neva | manilamomy says

    November 15, 2012 at 8:21 am

    thank you so much for sharing your story michelle last sunday and most especially for saying that it’s all going to be ok. i needed to hear that from a mom who totally understood me and dan. i pray that your family be richly blessed always. see you online and in DSAPI activities too 🙂

    • michelle says

      November 20, 2012 at 7:28 pm

      Thanks too Neva!
      Thanks for being there to listen and for being open. Thanks also for sharing my blog! I know I can learn a ton from you since you have been doing this for so long! I look forward to learning more about blogging and hopefully, I will have fun in the process. 😉 Noah and Gelli came into our lives for a reason. This much I know. It really is amazing how much our children can put things into perspective for us. How much we can learn from them. How much we can grow just by having them in our lives. I know there might be days that will be challenging, and days that might be more than I can handle when it comes to caring for Gelli. But, being involved in an organization where there are other parents who are willing to offer advice, help, or what worked for them makes the load a lot lighter! I was just talking to Nino this weekend since we took the family to the beach. I was watching Gelli laughing and playing in the sand and I had to share how I was feeling with him. As you know, in those first few days after Gelli was born I questioned what I did wrong for God to give me a baby like Gelli. At that moment, when I saw her playing, smiling, and belly laughing with her siblings in the sand, I turned to Nino and asked him what did we do that was so right to be gifted with such a special little person who has given us so much? (And she’s only 1 year old??)

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