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Down Syndrome

#28DaysofAwareness February 9th

I met Suz four years ago through one of Nino’s friends. His friend Jessie, said he had a nephew who’s wife just gave birth to a little girl with Down Syndrome. Suz and Johnmel did not know of Joey’s extra chromosome before she was born. I was sure they were both in shock and disbelief the same way that Nino and I were just one year before. 

I wanted to be sure that Suz knew that she wasn’t alone in her thoughts, or her feelings. The February before Joey was born, I had pitched an article to my friend who was an editor at Working Mom at the time, and I had the idea to share the article with Suz with a handwritten letter as well. I just wanted Suz to know that she wasn’t alone.

Shortly after we made contact and chatted via text a few times, we were able to meet exactly one year to the date when Nino and I attended our first event by The Down Syndrome Association of the Philippines. Nino and I were able to share a little part of our story with Johnmel and Suz at their first event by DSAPI as well.

Early Intervention is the first event that I encourage any new parent to attend when they have received a diagnosis of Trisomy 21. 

Four years later, I have seen Suz take charge of her daughter’s care in a way that inspires me to be a better, more well informed mother to Gelli. She is on top of the latest studies, supplements, and ways to ensure Joey’s continued success in reaching developmental milestones and Joey’s growth as an individual. 

I have seen Suz put together a foundation to further our joint cause in equality for our daughters. 

She has done so much for all of the organizations that she is involved with, but Miss Possibilities is her baby. From an idea that came to her when she saw a poster while she was back home in California, to a foundation that gives both boys and girls with special needs a night to showcase their abilities and create awareness for all individuals of ALL abilities.

Thank you Suz for sharing your thoughts here on the blog for #28DaysofAwareness with my readers. 

Recently, I tagged along on one of my brother-in-law’s training flights. Looking down on Earth, it really gave me a different point of view. Down below, cars were probably trying to speed up to pass other cars on the highway while comparing who has the most luxurious or fastest car. 

But from the view above, all the cars appeared roughly the same and I couldn’t tell which cars were traveling fast or a little slower. All the man-made structures seemed less significant, and God’s creations of valleys, mountains, and forests were amplified. My next thought was how lucky my brother-in-law will be when he gets his professional license and is able to fly and see this perspective, that the majority population do not get to see, whenever he wants to. 

 

Looking at Earth’s landscape in this way which differs from my every day perspective, made me think about how having a child with Down syndrome has forever changed my perspective of life. Before having Joey, I was like one of those cars on the highway. Driving along, noticing models of cars, and trying to keep up with the speed set by others driving on the same highway. 

Now, raising Joey has sometimes made me feel like all the other cars are better and faster. That they are all traveling to a different place than our family. And we don’t have a GPS. 

But having Joey as the best life coach, is all I could ever ask for.

She has taught me it’s not about how fast we can get from point A to point B, but it’s about being immersed in the journey. 

She has taught me to celebrate our own family’s moments, instead of comparing or being envious of others.

She has shown me to take the scenic route and to celebrate  the small accomplishments and blessings in life. 

I no longer take family and friends for granted. I no longer think milestones just happen. I no longer look or feel entitled.

Instead, I have realized that every day and every thing, is indeed, a blessing. 

Joey, and her extra chromosome, has opened my eyes, heart, and mind. She has opened doors to new friendships I would never have had. She has filtered out the fairweather family and friends and has shone light on the goodness of some family and friends that we would have missed.

She has presented us with opportunities to pay it forward by helping others, just as so many people have helped us. 

Having a child with special needs is sometimes time consuming and filled with ups and downs and winding roads.

But it’s also amazingly beautiful and makes me marvel at God’s perfect creations.

Just like taking the scenic route. 

 

To learn more about the foundation that Suz has put together with the help of other mommas just like here check out: Miss Possibilities
To follow Suz’s online journal with tips and tricks for therapy, what works, and how she cares for Joey, check out:  Down Syndrome – A Little Bit Extra

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