Last night, I had a chat with my grandmother in South Africa. We had the usual chit chat about what she is up to, the family, etc. She asked me how Caily was and I shared some cute stories. She commented that even though she is cute now, I will need to look after her the rest of my life. She then sighed and said: What can you do when G-d gives you challenges?
Her voice had the resigned tone of: “The poor Samuels, their lives are full of tragedy.” My grandmother has two disabled grand children and now a disabled great grandchild…..from her world view things are rather pessimistic.
We spoke at 3:00 a.m. NY time and, instead of collapsing in bed, I pondered this conversation. I am a realist: While I hope that Caily will achieve great things and be the poster Downs syndrome kid, I also know that she simply may not. This is where our differences in approach come in. We call it active acceptance. In contrast, passive acceptance is resigning yourself to the fact that you have a disabled kid and pretty much sounding like my grandmother. Basically, through lack of choice, you play the hand you are dealt.
Not us–from the day we heard the news, we have reframed the world. We have a special needs child–yes, she has challenges, but she also brings us joy. She has opened our eyes and made us better people. So often, I think about the typical people in my Manhattan world who have jobs, health, live in a city with so much to offer to make them happy and yet they are so unhappy. Caily’s world is simple and happy. I am grateful for the message she teaches us each day.
I have read many blogs of singles sharing their pain, people with disabled kids, stories of bad marriages, financial woes. People questioning god, bearing their pain. You name it. However, I have never seen a statement in Torah that says, G-d shall grant you a life of perfection, free from issues.
While I love my grandmother I disagree that my life is one worthy of sadness, even if I have to look after Caily for the rest of my life.
Metroimmas, share a situation that brings you joy that others empathize with…
Originally published: April 5, 2011