Yesterday was World Down Syndrome Day. March 21 because Down syndrome happens when chromosome pair 21 gains another chromosome, thus resulting in 3 copies of the 21st pair — 3:21. I was on leave yesterday because of David’s PTC at school. I took advantage of the day off and enrolled him in swim class and also scheduled Noah’s PT session that day. It was a full and steady day and I relished it because I was not at work and instead I was at home with the two boys and my mom.
I wanted to do something important for World Down Syndrome Day. I’ve been thinking about doing a post about awareness, advocacy, awareness and advocacy, awareness vs. advocacy but I felt that I may not have walked the path long enough for me to write about these things. I think I only tweeted a couple of times about World Down Syndrome Day but I had to shut down my laptop and drive off to David’s school. Besides, I found a blog that already does an awesome job of advocating awareness of DS. I would have loved to have joined a blog hop and chimed in with the mommas over at this blog too but I couldn’t find the time.
I felt that as a new parent, coming into this whole new world brought forth by Noah’s extra chromosome that I must always, always do something to raise awareness of any event celebrating my son and his condition and to do less would just be unacceptable.
But no, I was at the swimming pool of a local sports club choosing schedules for David’s swimming classes and picking out goggles for him to wear.
Of course there was Instagram and it was Michelle/Mommanmanila’s photo of her darling Gellibean that really pushed me to post Noah’s collage of him practicing of the new things we learned in therapy. Below is the pic and message I posted, a collage of our darling cutie pie learning how to prop himself up using his chubby arms hehehe 🙂 He was moving so fast when I took the pics so they all turned out blurry pero kebs!
3/21 is World Down Syndrome Day. 3:21- 3 copies of the 21st chromosome pair. This “extra” has brought our family joy, love and community. Noah is our joy, he personifies love and because of him we have connected with so many other families. There will be challenging days ahead but we will get through it. Noah is a fighter. I think the extra also means he’s extra brave 🙂 Love and light to all our fellow families in the Down syndrome community especially DSAPI 🙂
But that was it though. After errands, I was left with a couple of hours to pump, keep David busy, eat lunch, fix the room where Noah will have his PT session in, do the actual PT sessions, play a bit with the kids after and then feed, bathe and put Noah to sleep. By the time I had some time to myself to think about World Down Syndrome Day, it was already 9:30 pm. The day has passed and I did not do anything to commemorate Noah’s first World Down Syndrome Day.
Then Eli sent me this pic.
To which I replied, “GANDARA PARK!” and then I thought baka nga kumalma na ako. Maybe this whole day represented our new normal. That PT session has just become one of those things that we do. We’ve gotten our groove. Maybe I (we) have finally gotten a handle on things. I am always aware about DS but it has turned into something that we deal with on a daily basis just like David and his school assignments for lack of a better analogy. It was mind boggling to have come to this realization especially for me, the eternal pessimist and worrywart. I had to pinch myself because hindi ako ganito. OA ako with my hyperawareness of Noah’s needs but yes baka nga kalmado na ako. (Thanks Eli for sending the pic!)
I hope I don’t jinx it but what a big thing to realize on World Down Syndrome Day. What an awesome way to commemorate Noah’s first WDSD. (But promise next year, may gimik tayo Noah for WDSD hehehe!)
Jess says
May 18, 2013 at 7:01 pmHi! I just wanted to share this with you..I came across this very touching story when my then 9 mos old baby thru ultrasound was misdiagnosed to have DS because of short femur length. I was searching for articles online to educate me more about DS. That’s when God led me to this article. It makes sense. I guess you already know about this, but to other parents who still have not read this…its just to good to not share! Here is the link:
Eliza Santiago-Ypon (@PaintersWifePH) says
March 22, 2013 at 5:32 pmI love you Noah! Chill na chill na si Neva o! Naks!
manilamommy says
March 25, 2013 at 9:59 amlove you ninang! mwah!