Luke was so loved by everyone who knew him, and we have been so blessed and honored to have had him in our life for 13 years. He passed away suddenly from a seizure.
On July 23, 2007, on a warm Monday morning in Cambridge, Luke came into our life, completing our family with Rebecca and Nathan. He was our dark-haired dark-eyed baby, full of chunky baby rolls and blissful contentment. When he was 5 months old, we said farewell to friends and family in Cambridge to come and live here in California. Life was exciting and challenging, navigating our new home and life together.
The normal baby milestones that parents look forward to – rolling over, crawling, sitting up, were missed, and “developmental delay” was a new term we started to hear. Despite that, Lukey was full of smiles and giggles. Early intervention started in earnest when he was 9 months old, followed by an MRI and tests, as it became clear that something wasn’t quite right. At 17 months a genetic test revealed Duplication 15q syndrome which would change our lives forever. That was a very difficult time for us, but life went on and Luke kept smiling.
We settled into our new normal, made wonderful friends, had parties, traveled, moved house a couple of times, but our daily life was filled with therapies, special education, and music. He flourished. He loved playing with his toys and his iPads, he ate well, and our home was filled with noise and love. He was a healthy happy little boy, who loved the water, spinning toys, and watching Yo Gabba Gabba.
We knew that his genetic disorder could cause seizures, but we felt lucky that they had never been a part of his life. We understood though that there could be a turning point at puberty.
It was hard to believe that Luke, who had been so small for most of his childhood and wore clothes at least 2 sizes down for his age, seemed to grow overnight during this summer of 2020. He had put on 15 lbs since January, and his feet and hands seemed to double in size. He still had that baby-like sweetness but was definitely cheeky in his demeanor at times and had worked out quite easily that if he cuddled with his teachers, he may get out of having to do work.
While COVID was so difficult for all of us during 2020, we are now so unbelievably grateful that we were all together as a family. He slept well, was so happy, and just loved being at home, as well as at our beach house where we spent 6 weeks of our summer. Luke discovered the beach, the joys of the sunset, and jumping off the lifeguard towers.
It is still so difficult to believe that he was taken from us so suddenly and unexpectedly.
Luke taught us…
That life is in the present.
To have empathy, kindness, and gratitude.
That life with Pringles, pretzels and sugar cookies with tea was the perfect way to sit and be cuddled.
Hand squeezes and tickles.
His soft duvet.
Jumping and climbing, especially on his bunk bed and on the barbeque.
His CD Player, DVD Player, and listening to loud music.
YouTube, and his favorite songs in different languages.
His chewy necklaces.
Trips to the park.
Cheerios, marmite toast, jam sandwiches, and milk in his sippy cup.
But most of all he loved his home and family.
Luke’s journey ended sooner than expected but his beautiful soul touched all those he met, and he was deeply loved by all those who have cared for him.
Although he had no voice in this world, (as he was non-verbal) he is now singing all his beloved songs, and one day, we will all be sharing our adventure with him, hearing that sweet voice.
Our home will be so quiet without him, but his presence will always be in our hearts.
We are forever grateful to have had him pass through our lives and find a love that was wholly unconditional.
Rachel Segars (Luke’s Mama)