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.
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.
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.)
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.
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.
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.