David to my brother: Does Z (his baby) have Down Syndrome?
Brother : No she doesn’t, she’s just a regular baby
David: Noah has Down syndrome and he will have Down syndrome forever
Brother: What does that mean?
David: It means he needs to go to lots of therapy and work very hard
Brother: That’s why you also need to be there for him. Will you be there for him?
David: Yes
David: You know what, I thank God that He gave Noah such a cute smile. I love Noah.
Sometimes I think we talk about Down syndrome at home too much. Sometimes I think that David shouldn’t come with us to Noah’s therapies and doctors’ appointments too often. Sometimes I wonder what he thinks of Noah’s classmates, of our DSAPI family and of Best Buddies. And then David pulls out this. I have underestimated how he has so far processed our new normal.
David represents to me the best of both worlds when it comes to awareness. He knows Noah has Down syndrome, he knows of Down syndrome and he understands who Noah is and how he is.ย I feel that David is developing empathy, which overwhelms me.ย I also shamefully realized that I’ve also been oblivious to the fact that David has adjusted so well to our new path.
Awareness is what David has, but of course he has homecourt advantage. Down syndrome is a big part of our family and we live with this fact everyday. What I am hoping for (and working it) is that awareness fuels action. I hope that he picks this up from our DSAPI community and our work with Best Buddies. I hope that by seeing me and Dan striving to create a path towards a more inclusive society that it also encourages him to do the same. My fervent prayer is that he turns out to be his brother’s best advocate when the time comes.ย My prayer everyday is that he continues to understand and that he never resents the fact that there will be times that our finances and efforts will all go towards Noah’s needs. Or if that time comes, that he feels safe with us to talk about his issues.
I write about Down syndrome here a lot too and I hope that here in my home on the web that I have created an honest picture of what our lives have been so far -from the initial shock of the diagnosis to the start of our new normal. My IG feed of course includes Noah and I often share facts about Ds plus campaigns such as End the R Word.ย I hope that because our family is out there, that at least you, would know one family who has a kid with special needs. I hope that by sharing our stories that I help demystify some things about raising a child with a learning disability.
My wish is that in the fortunate event that you are able to meet a family of a child with special needs that you look at them with eyes not with pity but with empathy. I hope that in that instance, that you will choose to talk to that family and that you will encourage your kids to play and include their child who has Ds (or autism or another learning disability) — just as you would with any other family. That you will see beyond the disability and just see the child. That you will always choose kindness because you know Noah.
I wrote this post for World Down Syndrome Awareness Day, which was on March 21. March 21 is also 3/21 and stands for the third chromosome of the 21st pair. It is this extra genetic material that causes Down Syndrome.
Joan Macawili says
April 22, 2014 at 10:31 pmI love what you wrote here. Your kids are adorable. I think you and your kids are lucky to have each other. ^.^
neva santos says
April 23, 2014 at 3:01 pmthanks for the kinds words joan ๐ noah and david have given me so much! i only wish i could be enough for them.
Liz says
April 22, 2014 at 12:30 amNoah is very fortunate to have a kuya like David.. you have a very beautifull family, Neva. ๐
neva santos says
April 22, 2014 at 9:56 pmthank you liz ๐ and noah has brought you, me and zaine together! ๐
JenCC says
April 21, 2014 at 9:47 pmAWESOME SAUCE Kuya David is!!! We tend to underestimate our kids, and oftentimes, they surprise us in so many ways! WTG!
<3 you, Noah baby!
neva santos says
April 22, 2014 at 9:57 pmthanks jen ๐ so true.
Michelle says
April 21, 2014 at 6:03 pmOh Nevs. You made me tear up.
David is so so so wise. But that’s because he has such an awesome set of parents who are present, informed, and most of all loving.
I know that my world is a better place, not just because I know Noah…but because I have the gift of knowing his whole family.
Thank you for continuing to advocate for all of our children, and know that because of Gelli-I am there beside you…
xo
neva santos says
April 22, 2014 at 9:58 pmthank you michelle. it’s such a blessing having you and team gellibean in our lives ๐
EJ says
April 21, 2014 at 2:47 pmDavid’s turning out to be an awesome kuya! Kudos to his awesome parents! ๐
neva santos says
April 22, 2014 at 9:58 pmand to his awesome titos and titas! thanks ej ๐