When our son Shlomo was born, our other children were too young to understand the implications of being a sibling of a child with Down syndrome. No, my 5 year old, 3 year old and 1 year old understood nothing about stigma, knew zero about the "burden" of having a mentally retarded brother, were unaware of the "devastating" effect a sibling with a disability could have on a family…
Well, here we are 14 years later. Shlomo's siblings have certainly grown to understand a lot. They've learned so many things they never knew 14 years ago. They've learned how to be involved in caring for each other. To pitch in and help. They've learned how to take responsibility. How to be flexible. Much the way family members do when any family experiences illness, let's say, among one of the children. Gosh, they even know how to dispense medication in a dosage syringe! How to work the nebulizer!
Devastating effects? Disruption? Burden? Of that they've remained rather ignorant. What have they learned? What have we all gained from Shlomo's existence in our family? How has including a child with Down syndrome in our family affected us? We, as parents have learned that "chanoch l'naar al pi darko" applies to each of our children. We have learned that each and every one is unique, a special neshama. All of us have gained a deeper appreciation of the individuality of other people - all types - no matter their abilities, their appearance, their level of frumkeit.
We have learned to care. To share. To hug. To love. How many hundreds of times has Shlomo heard his siblings say, "I love you so much"? Sometimes it's in response to his endless display of affection and gratitude. Sometimes it's unsolicited. (Shlomo's younger sister, 8 years his junior, also has to endure her brother's doting over her. "You're so koooot," he says in as mature a voice as he can muster).
His siblings - all of us - have learned the meaning of true hakaras hatov. Are there other children who have a brother who says "thank you Ima" before every bracha on food?! Does every child have a chance to see a sibling who thanks the doctor with a big smile, a big hug and a slap on the back after every blood test?!
We have learned how to smile. How to laugh. To be happy even when we're stuck in a traffic jam. How to bounce right back only a few moments after we fall and skin our knee. To feel b'simcha just by making another person happy.
There is so much Shlomo's siblings didn't understand when he was born. Things that they've never needed to know, that they were never forced to know. Negative concepts of shame and burden and devastating effects that have been relegated to pure myth and misconception. That have been buried under an onslaught of ahava, emes and simcha. Indeed, our children are our greatest bracha. Little did any of us realize, 14 years ago, that our child with Down syndrome could be a most wonderful matana as well.
This article first appeared in issue #12 of Down Syndrome Amongst Us