I have asked quite a few friends and family to post here on the blog for this personal campaign of #29DaysofAwareness. I ask people to share parts of their story with all of you here because I know that it’s through our stories that we are all connected.
Today, I asked my friend Neva Santos to share a little bit about her journey with her son, Noah. Noah has also been gifted with an extra chromosome. It’s through Gelli and Noah, and even blogging that I have gotten to know Neva a little bit better. While I know we are still in the beginning of what I know will be a life long friendship, I feel close to Neva because we share so many of the same hopes and fears when it comes to raising our youngest children.
3 Years In
It always happens. At nighttime, when the kids are asleep, David in the middle of our bed and Noah in his toddler bed, I always let out a sigh and I always wonder out aloud, “Ang laki na nila”. Both David and Noah are long and lean and it seems that in a year or two I will see their feet hanging off the bed.
I linger over Noah longer though. His face has filled out and he looks more and more like a young boy. I really can’t imagine that he’s only three. He came into the world so precariously.
Three years in. It’s a short time and a long time. There are memories that are so palpable that I have to figure out how I ever got out of it and some are just a blur, and I couldn’t even figure out if it was just actually a dream. But there is one constant. Noah.
And now he rumbles and tumbles in, out and around our house with his kuya so carelessly and with a laugh so infectious, it’s impossible not to laugh with him.
His weekdays are busy. He has therapy sessions every day, twice on some days. He is also enrolled in KinderMusik every Saturday. I read the notes his teachers leave for me in his notebook. Some days are hard, some days he’s distracted and on most days he’s doing well. For a three year old who has been in therapy when he was just a few months young, he is constantly learning and growing.
I used to imagine that our lives would stop because of Noah’s diagnosis. I feared that I would never laugh loudly ever again and that I would always be somber because, I would be “that” mom with “that” child. I feared that the world would not be kind to a kid like him. I was sad that David might miss out on having a brother he can really play and have fun with.
Three years in, I realized how petty some of my fears were. It was when we have settled in with our “new normal” that I figured that life will be challenging no matter what. It doesn’t mean that I am not cautious though. I still am – sometimes too much. And sometimes whenever I feel too happy…I feel that something tragic will happen soon. It’s a terrible feeling to always feel that the other shoe will drop anytime. And I panic. And I over prepare until Dan snaps me out of this haze.
I am still working on overcoming my anxiety but I know in my heart that if I want to live life to the fullest, I need to live life NOW. From a 3.3lb baby to a big ball of energy that he is today, Noah has gone through life’s paces with a huge smile all the time. In fact, Noah wakes up every day with a bright smile.
Three years in. What an amazing three years it has been.
You can read more about Neva and what she shares on her blog Manila Mommy.
