#28DaysofAwareness February 8th

For today’s post in my series of #28DaysofAwareness, I have asked another friend of mine to share her thoughts and sentiments on having a younger brother with Down Syndrome and how it has affected her life.

We know Teacher Sarah for two reasons. She is not just one of Jeremy’s big sisters. She is also a teacher whom my younger son, Diego is very fond of. She has moved on from teaching at De La Salle Zobel, and is now enjoying her life teaching and exploring Japan. 

I love observing her life as a spectator, through her social media posts because we are Facebook friends, but also through her Momma, whom I consider a good friend. Agnes Lapeña is someone who continuously shares her experience with me as Jeremy’s mom, and has done so since Gelli was born. I have looked up to her and often shared very intimate parts of my story with Gelli with her as well. 

Like I have said before, when you become the mother of a child with special needs, there is a shift in perspective that occurs. That shift also allows for a greater understanding that we are all in this together, and the instant bond that is created when you meet someone like you.

It is through my close relationship with Agnes, that I was bold enough to ask for a guest post from her family. Luckily, Sarah didn’t mind taking the time to reflect and share a little bit about what she has learned through her experience as Jeremy’s Ate.

Jeremy, my ikigai
February 9, 2017
Sarah Lorenzana Lapeña

“Absence makes the heart grow fonder.”

When it comes to Jeremy, this is most definitely true. But as I stare at my laptop and reflect on what to write, I wonder whether I should go on rambling about the same things I had been writing about Jeremy for the past 20 years.

Jeremy, our runaway kid?

Jeremy, our super golfer? Passionate altar server?

Jeremy, our blessing in disguise?

Jeremy the cutest little boy in town?

I’ve done this so many times, I figured I should try and change things up a bit. But let me warn you, I ramble. A lot.

Last December, I flew home to Manila from Japan for the first time in eight months. Eight months away from the Philippines taught me a lot about loving my family from afar. But since February is Down Syndrome Consciousness Month, I’d like to tell you about what it’s like loving Jeremy from afar.

Along with learning the ins and outs of working on our family’s newfound long distance relationship, one of the other things I picked up was a new language – Nihongo. Part of learning a new language means learning words that are not translatable to any other language.

I take long, 20-minute scenic walks to school every morning. Today in particular, was a snowy day. As I walked through the forest behind my school, I tried to recall the Japanese word for “sunlight filtering through trees.” It’s a cold, winter day, so there’s barely any sun, but just enough to make me try and remember the word.

Ah, yes. Komorebi.

Then, I think of wabi-sabi わびさび.

“A way of living that focuses in finding beauty within imperfections of life and peacefully accepting the natural cycle of growth.”

Of course, my mind continues to wander.

And through all the stories I’ve read about mothers who write about their children with Down Syndrome, and fathers who love playing golf with their sons, and ates and kuyas who unendingly dote on their special siblings; through all the “Welcome To Holland” stories, I’ve come to associate the imperfect perfect beauty of nature with my perfectly imperfect brother, Jeremy.

Nobody is perfect. Including Jeremy. I remember the stories of my parents about the day Jeremy was born and the weeks that followed after he 8^th of March, 1996. I remember them saying how sad and possibly broken they felt. I remember that my dad had cigars he was hoping to pass around after the birth of his very first son – only to put them away after finding out Jeremy had Down Syndrome. I remember that after a month he took them out and finally gave them to his friends.

Don’t get me wrong, we were never a broken family. And I’d like to think that because of Jeremy, because of the love and joy he has brought to our family, we never will be.

Jeremy is the glue that holds us together.

Jeremy is our kintsukuroi 金繕い.

“Kintsukuroi is the art of repairing pottery with gold; joining the pieces and understanding that the pieces put together with gold have become even more beautiful for having been broken.”

Jeremy is our gold. He is brighter and shinier than gold. He lights up any room and fills everyone he meets with so much joy. He is the gold and we are the pieces that he keeps together. He is the gold that makes our rough edges look beautiful when glued together.

When it all comes down to it, Jeremy is the reason I am in Japan because Jeremy was and will continue to be the reason I wanted to become a teacher. Before I became a teacher with actual students in an a real classroom, I had two students: Meimei and Jeremy.

Jeremy is my ikigai 生きがい.

“The reason for being; the thing that gets you up in the morning.”

I wake up every morning eager to teach because many years ago, I was Jeremy’s first teacher. I wake up every morning eager to teach because I grew up watching Jeremy during therapy with all his incredible teachers. I am here because Jeremy is my ikigai.

So, yes, far as I may be from my ikigai, Jeremy continues to fill me with love. Through our long distance relationship, he has mastered the art of calling me via Facetime using our mom’s phone. He looks for me when he feels unwell and makes me cry whenever he cries. He is forever going to be our kintsukuroi. Jeremy will always be the most perfect imperfection I’ll ever have.

Komorebi 木漏れ日 – sunlight that filters through the leaves of trees.

Wabi-sabi わびさび – a way of living that focuses on finding beauty within the imperfections of life and peacefully accepting the natural cycle of growth and decay.

Kintsukuroi 金繕い – the art of repairing pottery with gold, joining the pieces and understanding that the piece is more beautiful for having been broken.

Ikigai 生きがい –  the reason for being; the thing that gets you up in the morning