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Advocate Down Syndrome Special Needs

“I need to meet this girl!”

Last month, I went to a restaurant opening of a friend of mine. My two sons were with my in-laws in Baguio for the weekend and Nino and I just had our daughters to take care of. It’s always easier to move around with half the brood…there is less fighting (in this case-none at all) less to carry, and less to mind and look after while leaving the house. (And of course less kids to keep counting while we are in a busy mall.)

This also means I have a little bit more time get ready…maybe even put on some make up before leaving the house and it also means I’m a lot more relaxed. That day was especially nice because Gia and I got to play dress up with Gelli before leaving the house. Mama (my mom) bought her quite a few new dresses so we had a plenty to choose from for such a special day. I felt good when we left the house, not just because I was going to a dear friend’s restaurant opening but because I was going to spend the day with my girls (and my man) and we were going to try and do a little Christmas shopping for those last minute gifts.

Gellibean at Spaghetti Factory

It’s always nice to meet new people at functions like this. My friend Vangie had lots of her friends attending the opening and there was a lady that I was introduced to that caused me to pause. These little moments where I pause are moments that I often like to write about. It’s usually a realization, an epiphany or something to ponder that I hadn’t given much thought to previously.  Sometimes, these are moments filled with gratitude and wonder, but this moment as I reflected on it later that night, was so heavy on my heart that I had to cry out loud.

Tina came over with my husband Nino, and said “I just had to meet you because you came into the restaurant so proud of your special child. You were holding your baby and I could tell you were so proud of her. It’s not often that I see parents like you.” The whole introduction was friendly, in fact, Tina was a very pleasant woman who right away took to Gelli and started telling me about her ina-anak (god-child) who also has special needs. She explained that her Kumare (the mother of her god-son) had established a foundation for special children and that she was very involved with the foundation. She invited me to get involved with their organization and she also shared her love of helping others thru the gift of her ina-anak and her friend.

After the day was over, while I was sitting on the sofa with Nino going thru the events that transpired during the day I was overwhelmed and filled with melancholy.  We usually sit around and talk about the events of our day so I look forward to the quiet time when the kids are asleep and Nino and I have a chance to talk without interruption. When I was recounting the self introduction of Tina and her kuwentos (stories) about her god-son, I realized what her words really meant. While she was paying me a compliment, the weight of that compliment  carried so much more than I had time to think about earlier that day. As I explained to Nino how upset her seemingly kind words made me, I really couldn’t hold back the tears.

Let me set the record straight. I wasn’t crying for my daughter and I wasn’t crying for myself. My daughter is loved and cherished not by just me and my husband, but also her siblings. She feels love every morning when she wakes up with a smile on her face, and every night as I rock her to sleep. She experiences the true joy that each of her siblings has in coming home to her after a long day at school. She knows that with every bone in her body, we love her and care for her and couldn’t imagine our world without her. What I was crying for, were all of the other children that Tina was referring to. I was crying for the children who weren’t loved as much because they were special, or because they were different, or because they weren’t what their parents expected them to be.  I realized that while Tina was just a little bit older than me, she had lived her life in the Philippines longer than I had and had been involved in a special needs organization. She had also seen and met many more parents of special children before me. I cried for all the children who somehow felt their parents’ shame or who had not felt the love that they deserved. I cried for the children who were always left at home because their parents chose not to take them out in public.

I cried again for the guilt that I still carry. The guilt of my initial reaction in those first few hours after Gelli was born and I was told she had “markers for Down Syndrome.” I asked God again in silent prayer for forgiveness of my reaction while I was still in shock from the news of my daughter’s special needs. I reflected again, on my promise to God when I went down to the NICU to hold my daughter for the second time, just hours after her birth. I promised that not one tear of sadness would ever fall on her precious little body while I held her. I promised that she would only know love, and happiness, and belly laughs from our family. I promised to nurture her the way a mother nurtures her child so that she would reach her full potential. I promised that I would always fight for her and her rights. I promised  that I would do my best to educate people about Down Syndrome by sharing the love I have for Gelli with everyone that we came across, as a family.

It is because of the love I have for my Gellibean that I want to share with all of you that February is Down Syndrome Consciousness Month. Throughout the whole month of February, The Down Syndrome Association of Philippines will host activities to bring awareness to the communities we all live in. Our two big events that we host are the 10th Annual DSAPI TEE UP FOR DOWNS GOLF TOURNAMENT and the COUNT DOWN 3-2-1 HAPPY WALK. Sandwiched between these two celebrations will be other activities that showcase our children’s talents and abilities.  If you would like to make a donation to the association you can contact our office for information on how to give.  If you would like to attend any of our events in support of Down Syndrome and Gellibean, feel free to check out our FB page for details on dates and times.

 

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Comments

  1. neva | manilamommy says

    January 22, 2013 at 11:35 am

    Hooray for Feb and Down syndrome awareness!

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It’s December 1st! Is there anything more delic It’s December 1st!

Is there anything more delicious than the smell of Christmas and the new found freedom as we anticipate celebrating the holidays with our families again?

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Such a great musical!

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