From Daddy

Happy Birthday my sweet boy. Yes, it is your 40th birthday today. We are not at home together so I am writing you an email just as I have every day that I was away from you. I could tell you about my day and send you some pictures that you loved to put in your scrapbook. The world knew that you waited for the email from Daddy each evening and your day was complete when it arrived and you were happy. I have a confession to make today that I think you already knew. I wrote those emails as much for me as for you. I needed to connect with you. I needed to feel your love and appreciation. You gave the work I did all day meaning and I wanted to share it with you. I think I am ok now, but I may write to you again if I need to. I love you
Daddy

From Mommy

Dearest Jeffrey. Happy 40th Birthday. I hope you remember the train of treats we made for your 6th birthday because you loved chips much more than you loved cake. So that is what we did. Love Mommy.


The Birthday Train of Chips

Writing class with Auntie Dilys and Cookie Montster


Family 1990


Serious photo work with Auntie


Auntie Dilys and Jeffrey 2022


Birthday 2022

From Aunty Dilys

Forty Years of Fondness

The memories come cascading… Those early years when a bundle of energy with large eyes and a bright smile made a beeline each morning to “Aa- Didi’s” room, climbed up the foot of my bed using my trailing blanket as a rope that I clung on to on the other end; me fearful that you would fall, you fearless that you would not. “Dancing” in my arms to the entire “Footloose” album, bouncing wildly to “Holding out for a Hero” and “Let’s hear it for the Boy”; still not sure who had more fun.

Bouncing to the music

Camping in the Allegheny forest, “sploshing” stones in the stream by our campsite; Years later, being mesmerized by the waves at the beach on your first trip to Sri Lanka; Welcoming Sanjay into your life as a new cousin, the beneficiary of all your toys, clothes, baby furniture; making sure that his parents were swiftly attentive when/if he cried; Your very special, forever indelible, performance of Red Riding Hood in sign language at Sanjay’s baptism, when the priest flashed you the sign for love;

Red Riding Hood in Sign

Your various projects at elementary, middle and high school that once had us debating on how best to write “Klondike” in Sinhala; your love of school (that all children should have) and the ride on the school bus; the special teachers who reminded you (and the world) that education is about joy and love;

There were many smiles generated in the ordinary of each day. Your capacity to chug large glasses of milk in a single breath; returning from McDonald’s carrying your cup of Sprite by the lid; trips to the library with your bag of books and videos to return and retrieve each day’s new treasures; obligingly trying on t-shirts that we gifted you the minute you unwrapped them; operating the stereo with your toes as you played Michael Jackson; the footfall on the ceiling as you cruised the house at night while we slept downstairs. Little escaped you whether it was a conversation on the phone, a package smuggled into the house, or the smell and sound of your dinner being prepared.

Your young adult life came with new challenges: Aunty Dilly sometimes showed up at inopportune moments – on those very rare occasions when Daddy and Mommy left town together. You decidedly rejected what was written in the book as your daily schedule those days, begging me to “try again” as you willed them back home. Yet, you were graciously tolerant of me and appreciated that I could make rice the way you wanted it and that I knew your daily routines. Although those were likely the most painful moments of your life, I am grateful for our time together and the bonding it allowed us.

Your love of Lego brought us a new chapter of joy as we shopped for the next exciting design - Sesame Street, Pooh, the Paris skyline, the beach house, the jazz band - that you learned to assemble patiently one section at a time.

I will forever treasure our many family gatherings, you on your computer entertaining us with your selection of Sesame Street old favorites; ensuring that our conversations were about happy topics and in happy tones; or occasionally sharing a blanket on a wintry evening. Tolerant of the smells of our food, even if only till we had finished what was on our plate.

As I have grown older and more reflective, I have realized that there is a little bit of Jeffrey in me; like you, I agree that dishes can be put away quietly, with minimal clatter; dinner is best eaten hot; inventories and back up supplies of daily necessities make for worry-free consumption; burnt out light bulbs must be replaced; life works more smoothly when we have a plan in the book for our day’s or month’s activities; calendars are important; birthdays deserve a cake and candles; and the love of family is life-giving.

You kept us disciplined, structured, predictable, reliable … vital elements for a world in which you felt safe. Your intuitive judgment of the character and caliber of people - as you read the world around you with piercing insight - reminded us that “fake” and insincere were not part of your world.

Thank you for opening our eyes to a view of life that was unique; pushing us beyond our limited perceptions to see, hear, smell, touch, taste and feel the world differently. You made us kinder, more sensitive, appreciative of needs and perspectives of which we had been unaware. You made our world a better place and made us better people. “Aa-Didi” will do her best to carry a little Jeffrey into all she does as she honors the forty years of your life for the rest of hers.
July 10, 2024

From Cousin Sanjay

When I first heard the news, all I could think was “this is not how it was supposed to be”. It was supposed to be just the two of us cousins in the end. I have spent a lot of time thinking how I’d navigate the passing of both yours and my parents, and how I could make you feel assured that their love continued on. How much more did I need to put in now, to catch up on that love? You were part of that first generation of people diagnosed with autism, and with that came more questions than answers. I did what I did best when searching for answers. I sat back and observed our parents be the adults. I always felt guilty that while doing that I held myself back from action, thinking I had more time. All this time the answer I was seeking was “don’t focus on the complicated things, focus on the simple things.” But I can’t negate what I saw on the sidelines. I saw the bravery and reckless abandon when you were young. I saw the the curiosity you sought in books, videos, and the outside world. I saw how your seizure diagnosis forced you to create safe spaces within your home. I saw you read all of our emotions with eerie accuracy. But most importantly I always saw those moments of joy, and as I grew up I would find comfort in your giggles and jumping, knowing that you found your happy place and we shouldn’t disturb it. Life didn’t go to plan, it never does. I have to find a way to be grateful that you left peacefully in your bed, with your blankets, and with all of us still in your life loving you. It’s not only your birthday, but Disability Pride Month. Thank you for being my introduction to neurodiversity and for being the trailblazer you didn’t ask to be. Your mother will see you as her Little Prince, for mothers should always see their sons still as little boys. I will remember you as a Golden (the color for neurodiversity) King of Joy. Full of life, experience, wisdom, love, and happiness. Happy 40th Birthday Jeffrey. 7/10/1984-7/2/2024

Sanjay Saverimuttu


Under the Quilt


Over the Quilt

From Cousin Mari

What I will remember of you Jeffrey moving forward is very simple, it is this:

You were never conditional with the love you showed anyone. To me, that is family.

When we first met we were babies and then toddlers and then suddenly we were teenagers. The last time I saw you in person I may have been twenty, two entire decades ago. The last time I saw you at all would have been on the side of a screen, peeking around Aunty Sandie's shoulder on a video call.

What I also remember is this: you were always exactly who you were, that never changed. No apologies given.

I have tried to live my life in a similar way, going the way I need to, to make things make sense to me, to be happy with the life I lead, to not provide apologies for anyone else's discomfort with who I am. Perhaps I knew that before we met, perhaps I got that from you.

I love that you got to live a life that was full of the things and people you loved and enjoyed, I could wish for nothing more for anyone than that. It didn't have to be a life that looked like anyone else's or that followed any other determined path. I love that your parents gave you that grace and space.

I don't regret for a moment that we didn't get to spend more time together. The few times that we had together, we saw each other, we understood the measure of who we were and that was, in a way, enough perhaps. It was enough to know that you loved me as I was and that I loved you as you were and so even half the world away if I knew you were happy and loved, then that was enough.

I agree with your mother that you now are off on adventures that we cannot fathom. And I am sure every so often, right around the corner, just out of earshot, I will hear your giggles and spot your smile out of the corner of my eye.

Auntie Damaris' Birthday - all the cousins