So I belong to this group on Facebook: DS Mommies.
Last week a Mommy posted this:
“I had a moment today. Another mother was talking to me about her grown up children and their plans for the future. It made me sad. I looked over at my sweet Alyssa and I just wanted to cry. I smiled politely & nodded my head like a good listener does. Does anyone else have moments like this?”
One Mommy had this statement in her reply:
“I know people who are so focused on their child’s successes, and I’m not sure what will happen the first time their child doesn’t perform.”
And then there was this reply:
“Yep – it’s hard. I do remember it being much worse when Belle was a baby, but it’s still hard some days. I do completely love what [was stated above] though – my brother John, who was 17 years older than I am – really hit it home for me when I told him Belle was born with DS. John was the ‘golden’ first child in our family – ridicuously smart and althletic and charming. People expected great things from him – but John suffered from a different genetic challenge called addiction (well, I believe it’s genetic.) By 17 John was across the country selling drugs and when he came home at 19 it was because his health was too poor to live on his own anymore. He suffered from an autoimmune disease that attacked his joints (triggered by an STD) and spent much of the rest of his life in a wheelchair – most of it living with my parents. He did eventually have a successful rehab and was straight for a decade but in his late 40’s his health was really declining and he was pretty hooked on painkillers. When I shared with John how devestated I was about Belle’s future he said something like – ‘Well, look at me. Mom and Dad never thought they’d have to take care of me my whole life but that’s how it ended up. Jen you never know what’s going to happen so don’t count anything out.’ John got to meet Belle twice and then died very suddenly from pneumonia when she was just 3 months old. He was miserable physically and I think God knew it was time to take him. But that was by far the greatest gift I had ever gotten from my brother – when people are planning their futures and I start to feel sad I remember that we don’t know what’s going to happen – God is in control”.