When I was pregnant with Noah, I imagined that David’s first meeting with his baby brother would be at our room at the hospital. I would be tired but happy from having just given birth and Noah would be in his bassinet sleeping. David would come with my mom and dad, and he would finally get to meet Noah and at that moment, David is officially Kuya. Warm lights, fuzzy music, crying mother and father. All would be well in the world.
Well, things didn’t go exactly as I had imagined. Noah was born 6 weeks early and so he had to stay in the NICU to grow until the doctors deemed he was ready. David didn’t see his little brother until Noah came home — that was a full month of him waiting for his little brother, wondering why I was always at St. Luke’s and why his brother couldn’t come home. He wanted to come with me to the NICU lots of times but of course that was impossible. I waited for all of David’s questions. This wasn’t the scenario I planned in my head so I knew David would have a lot of questions. He was probably confused but I wanted him to feel that everything was still alright.
So David asked, “Why can’t I see Noah?”
And we had to explain to him in the most basic way about prematurity and how the hospital will help Noah get better.
When Noah came home, David asked “Why does Noah look like that”
So we had to explain to him why Noah was tiny and why it was so important to be gentle with his brother.
So we also had to tell David about Down syndrome (Ds).
Dan and I were candid with David about Ds, we told him matter-of-factly that it was something that Noah has. Like some people have brown eyes or blonde hair. We didn’t want David to think that Ds was this overwhelming force that is taking over our lives. I wanted for David to understand that Ds is something that Noah has and it’s not who Noah is.
Then one day, David asked, “Mommy why does Noah have Down syndrome”
I braced myself but then he added, “Why not Up syndrome?”
I breathed a sigh of relief then told him that what Ds has was named after Langdon Down, the doctor who studied about Ds.
But this past weekend he asked again “Why does Noah go to therapy?”
Then followed it with
“Why does Noah have Down syndrome and I don’t?”
To the best of my fried frazzled brain, I told him that Noah already had Ds when he was still in my tummy and that Ds made his muscles weaker (actually his muscle tone) and that he needs therapy so he could be strong and ready for all the fun stuff that he could do like crawling, standing and walking. I told David that the reason why he didn’t have Down syndrome well because that’s how it is and that he didn’t need to go to therapy because his muscles are strong already. I told him that Noah needs help in things that some kids can do by themselves right away and that it may take time for Noah to learn skills that some kids know how to do already. I also taught David another name for Ds, which is trisomy 21. He thought that was cool.
David just nodded and said Ok. I was surprised I didn’t cry although my voice was almost quivering when I was answering his questions.
Sunday saw me and David going to his first movie with his cousins. While we were on our way to the mall, David, who was seated at the back with his two other cousins was telling stories about his day which included an announcement that Noah has Down syndrome and that he goes to school. His cousin J, asked David if Noah does well in school to which David answered “Yes he does! He’s very good!” And he said like he was an expert. David was bragging about his brother and he was beaming. I was so proud of our boy.
I’m amazed at how David can be such a big boy sometimes. He is so precocious and curious. I’m not sure if he already sees that we’re not a typical family and that our path is different. For sure there will be more questions, some would be funny and maybe some would be heartrending. But my goal is to nurture his curiosity. My hope for me and Dan is that we are able to honor all his questions even the ones that we don’t have ready answers to.
I look forward to him exploring and knowing the big wide world along with his little brother.
When he asks, he grows. I can’t wait to hear what he asks next.