My favorite non-profit organization DS Action:
DS Action holds monthly meetings in San Diego to identify the unmet needs of people with Down Syndrome and to find creative solutions to meeting those needs. As an example, DS Action determined that many children with Down syndrome do not receive the same level of recommended medical and developmental care, and that parents often find it difficult to get referrals to a variety of available intervention services. To meet this need, DS Action worked to establish a Down Syndrome Center, where all children with Down syndrome would have an equal opportunity of receiving recommended evaluations, referrals and intervention services. Working with Rady Children's Hospital - San Diego, DS Action has made this idea a reality. The Down Syndrome Center is a much needed resource to the entire region of Southern California as well as neighboring jurisdictions including Mexico.
Over the past few months, a few of you might have heard me talk about DS Action. I was fortunate enough to meet this group of people thanks to an event Fun Bike Center agreed to host. I feel so fortunate to meet such amazing people with huge hearts. I am still getting to know everyone, but I especially took to Sharla and Corinna. What amazing women. I truly look up to these women in admiration. They are completely dedicated to helping meet the needs of people with Down Syndrome and their families and they are such an inspiration to me.
Sharla and her husband Mike have two children, Adam and Nicole. Nicole is a darling little girl with eyes that light up my heart. I believe she is 2. And little 4 year old Adam is my “boyfriend" (Adam and I are pictured below). He’s adorable when he “pounds it” and hits my fist then blows it up, and when he says he’s 5 then says “Joke!” I look forward to seeing these two kids whenever they come in or there’s a DS event. They warm my heart.
I think I decided to become a DS Action volunteer when I met Adam. He won me over. When I learned he had Down Syndrome and acute lymphoblastic leukemia I think I became curious. To be honest, I was sad. I remember someone saying “I’m sorry” to Adam’s parents about him having Down Syndrome and they responded, “Don’t be, we’re not.” They are so thankful for the time they have with him and they love him so dearly. And I don’t really see them treat Adam like he has a disability. I may be naïve, but I don’t see DS as a disability. I do see that they may need an extra little nudge, and I hear the stories of the extra therapies they attend as they grow, but they are no different from you or me. They might be more joyful or loving, but not different. They just have an extra chromosome. Adam’s family has been through so much, and they have always pulled through victoriously. Adam has a strong will. I know he will be okay. I love you guys, and you ever need anything, you can call on me.
I believe I actually met Corinna before the event. She and her husband were members of a riding club Fun Bike Center supports. But she and I didn’t really get to know each other until we started planning the event. Corinna and her husband Slade have two little boys named Elijah and Bryce, and one more on the way. I believe Elijah is…5ish? So cute. He looks like a little Harry Potter and is super smart and talkative once you get to know him. Bryce is almost 2? He was born with Down Syndrome and is definitely a ladies man. All the FBC girls at the Ride of Inspiration hung out around his stroller being silly, playing and laughing with him. Bryce is pictured below. I wish Corinna would bring the boys by more often! Hello! I’m having baby urges and want to see children all the time! Corinna and I clicked. She has such a good soul and welcoming heart. She is completely dedicated to her family and a wonderful mother. I truly look forward to working with her more often and can’t wait to see the new addition to the family. I love you too Corinna, and let me know if I can ever lend a hand.
DS Action holds monthly meetings in San Diego to identify the unmet needs of people with Down Syndrome and to find creative solutions to meeting those needs. As an example, DS Action determined that many children with Down syndrome do not receive the same level of recommended medical and developmental care, and that parents often find it difficult to get referrals to a variety of available intervention services. To meet this need, DS Action worked to establish a Down Syndrome Center, where all children with Down syndrome would have an equal opportunity of receiving recommended evaluations, referrals and intervention services. Working with Rady Children's Hospital - San Diego, DS Action has made this idea a reality. The Down Syndrome Center is a much needed resource to the entire region of Southern California as well as neighboring jurisdictions including Mexico.
Over the past few months, a few of you might have heard me talk about DS Action. I was fortunate enough to meet this group of people thanks to an event Fun Bike Center agreed to host. I feel so fortunate to meet such amazing people with huge hearts. I am still getting to know everyone, but I especially took to Sharla and Corinna. What amazing women. I truly look up to these women in admiration. They are completely dedicated to helping meet the needs of people with Down Syndrome and their families and they are such an inspiration to me.
Sharla and her husband Mike have two children, Adam and Nicole. Nicole is a darling little girl with eyes that light up my heart. I believe she is 2. And little 4 year old Adam is my “boyfriend" (Adam and I are pictured below). He’s adorable when he “pounds it” and hits my fist then blows it up, and when he says he’s 5 then says “Joke!” I look forward to seeing these two kids whenever they come in or there’s a DS event. They warm my heart.
I think I decided to become a DS Action volunteer when I met Adam. He won me over. When I learned he had Down Syndrome and acute lymphoblastic leukemia I think I became curious. To be honest, I was sad. I remember someone saying “I’m sorry” to Adam’s parents about him having Down Syndrome and they responded, “Don’t be, we’re not.” They are so thankful for the time they have with him and they love him so dearly. And I don’t really see them treat Adam like he has a disability. I may be naïve, but I don’t see DS as a disability. I do see that they may need an extra little nudge, and I hear the stories of the extra therapies they attend as they grow, but they are no different from you or me. They might be more joyful or loving, but not different. They just have an extra chromosome. Adam’s family has been through so much, and they have always pulled through victoriously. Adam has a strong will. I know he will be okay. I love you guys, and you ever need anything, you can call on me.
I believe I actually met Corinna before the event. She and her husband were members of a riding club Fun Bike Center supports. But she and I didn’t really get to know each other until we started planning the event. Corinna and her husband Slade have two little boys named Elijah and Bryce, and one more on the way. I believe Elijah is…5ish? So cute. He looks like a little Harry Potter and is super smart and talkative once you get to know him. Bryce is almost 2? He was born with Down Syndrome and is definitely a ladies man. All the FBC girls at the Ride of Inspiration hung out around his stroller being silly, playing and laughing with him. Bryce is pictured below. I wish Corinna would bring the boys by more often! Hello! I’m having baby urges and want to see children all the time! Corinna and I clicked. She has such a good soul and welcoming heart. She is completely dedicated to her family and a wonderful mother. I truly look forward to working with her more often and can’t wait to see the new addition to the family. I love you too Corinna, and let me know if I can ever lend a hand.
It’s strange how life works sometimes. After meeting the members of DS Action, becoming more involved, what are the chances of Down Syndrome becoming a part of my family? On October 24th, 2009 my sister-in-law Mary gave birth to Baby Neko Dalve. I received a call from Mary at 3am telling me she was going into labor. I was so excited I could hardly go back to sleep! And that next day dragged on while I waited for the call to come down and see Neko. But it never came. Sunday came and we finally got a call saying everything went well and momma and baby were resting. I didn’t care! I wanted to see those two! But I was patient. Kind of. I called throughout that day and the next and never got an answer. Melo and I figured the new family just needed some time to relax. A week of tests later Mary called me with the news that Neko had Down Syndrome. She said they were thinking about adoption. Immediately I was concerned for her. I wanted to make sure she was making a clear decision and the right decision for herself and Neko. I was worried. I went to see Mary and Neko the next day, and I fell in love. Neko is beautiful. I spoke with Mary about the family she found for Neko and I couldn’t help but feel sad for her, Neko, our family. But after listening to her with an open heart and reading about the new family I do believe Mary has made the best decision for Neko. Elizabeth, his new Mommy, is an extraordinary person and Mother. I can’t begin to express my gratitude to her and her family. Neko will live an amazing life full of love and laughter. We will all miss him dearly, but he will always be a part of our family and forever in our hearts. Love you Neko.
This new life brought into this world is another reason for my dedication to DS Action. I hope that we are able to build an even larger foundation of hope and help for those who have Down Syndrome, or for their families. Someday, no one will feel as though they don’t have the means or the support necessary to raise a child with DS. DS Action will be there, ready to teach, mentor and comfort.
I’m thankful to my parents for teaching me to be a part of my community and to help or volunteer my time to those in need. But, I also feel a little guilty because I feel that when I volunteer it’s actually for my benefit. It makes me feel good, and I feel selfish for taking any credit for being a “good Samaritan.” I guess I always thought people were just supposed to want to lend a hand. I know that I have a hard time expressing myself. My heart becomes overwhelmed with emotion and I end up a sobbing mess anytime I try to express myself. I'm hoping that by taking the time to write down some of these feelings I will be able to share more with you. So thank you to Mom and Dad for raising me to be who I am today. Even if I am a little over emotional sometimes.
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