CHD Awareness Week always seems to creep up on me, but this year, I wanted to make sure to use my voice to add more awareness for this very personal cause. Things came together pretty organically because I am a member of a program called Leadership Fremont. At our January meeting, representatives from our local newspaper (Tri-City Voice) and a local NBC producer came to speak.
I told them about my story and a little bit about CHDs. They asked me to send them pitches for consideration, which I sent out the next day. Tri-City Voice agreed to let me write a piece for the paper and NBC's show "Asian Pacific America" invited my family to speak on the show. It was really amazing to have had those connections work out so seamlessly. Then when I posted on my Facebook about these opportunities, my local Macaroni Kid publisher said she could publish a story on her website and newsletter.
For the Tri-City Voice article, I focused on making it interesting and informational, including quotes from Ripley's pediatric cardiologist and another pediatric cardiologist we know, as well as personal stories from another local heart mom and me. Because this is a publication in general circulation, I wanted to make sure this would be a good read for everyone.
For the Macaroni Kid story, I tried to make things more personal and wrote it in a first person point of view. I wanted to focus on the difficulty of the journey as a mom since the primary readership is local moms of young children.
The other heart mom who I included in my pieces reached out to Fremont's mayor about a proclamation for CHD Awareness Week, which was granted. She accepted the proclamation and spoke about her story at city council.
Our interview for "Asian Pacific America" will be taped on February 26. They told us that the segment will not be edited and only taped once. It is a little nerve wracking to have two preschoolers on television and have no idea how they will react or respond. I hope that means it will be more relatable. Particularly for Asian Americans, there is a taboo about children who have medical complications and who to blame for it. Even though I was told time and time again that the heart defect's cause is unknown and it is not my fault, I know that culturally, many may believe I did something wrong. So I really want to use the time to first, show that CHDs are so so common, and second, demonstrate that Ripley is a loved planned child and CHDs can happen to anyone, regardless of age, ethnic background, socioeconomic status...
February 7 was also Ripley's 2 1/2th birthday. We spent some of the day at UCSF for a couple of developmental assessments (Ripley is a participant in a research study on how CHDs affect development). First, we brought some CHD materials, cookies, and copies of the Tri-City Voice article for the cardiac unit. Then, we went up for almost two hours of neurodevelopmental and cognitive testing. Ripley did a great job listening and following instructions. Though his preschool does a great job telling us how he is doing and giving us pictorial evidence of this, it was really cool to see Ripley in action. He worked so hard to figure out puzzles, match pictures, answer questions, and show his physical skills. He did take a few snack breaks, but overall, was able to stay focused.
We still have a few more days of CHD Awareness Week and really, I try to bring up Ripley's story and the prevalence of CHDs when I meet someone new or it is appropriate to do so. Ripley is such a special heart warrior...I am keenly aware that there are many children whose heart defects are more severe than him and that there are still too many children passing away due to their heart condition. As I tell people, no one wants to join the heart family club, but I believe I have been put on this journey to use my voice and my skills to spread more awareness.
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