#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.

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).

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.
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”.
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.

 

 

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.