I just watched an HBO documentary film called Monica and David. It's the story of two newlyweds in their 30's starting their lives together. They both have Down syndrome. I always get so emotional when watching films that are Down syndrome-related. I teared up in parts especially when Monica's mom said "She's my life's work."
I've always thought about Matthew's independence since he was a baby. Watching the film was validating of how truly important it is for Matthew to learn to do most things by himself. Like David's mom, I think about what would happen should I leave this earth. It's hard to think about but it's part of life. We can't prevent it from happening but we can sort of prepare for it. Bill and I set up a trust and will two years ago. I have prepared a letter of intent which I update when needed. And hopefully, there would be strong support networks like family, relatives, friends and special service coordinators who'd willingly lend a hand.
I've thought about the process of "letting go" when Matthew is older. I'll have to remember (or someone will have to remind me) to take a step back and allow Matthew to find his wings - go out with his friends without me tagging along, order his own food at a restaurant, work. Thankfully, I've got many years to go before taking bigger steps like that. For right now, we'll focus on self-feeding, undressing and dressing.