The Outside Light-published in Ami Magazine chanukah edition 2021

The Outside Light

It is a natural human instinct that in times of darkness we look for the light. When the power goes out, we immediately reach for candles, flashlights, open the curtains, try to find any source of light to brighten our surroundings. When my daughter was diagnosed with Dravet syndrome, a rare, severe, form of epilepsy, I felt like I was plunged into darkness. We went from being a bright, happy family with four healthy daughters, to a family living in constant fear, always waiting for the next seizure. The darkness and fear were so heavy, it was almost tangible. 

Over the last 2 years, ever since her first seizure, there have been many, many moments of darkness. The first seizure she had at 7 months old, pretty dark. The doctor telling us it was not just a “one time thing”, even darker. Seeing the fear on her sisters faces the first time they saw a seizure, as dark as night.   And the seizure that lasted almost 2 hours? Pitch black. 

In each of those moments of darkness, it felt impossible that there would ever be light again. To be honest, in the beginning of her illness I was not even sure I wanted the light. There really were days that I just wanted to lay in my bed and cry (and sometimes I did that). It was much easier to sit in the darkness and fear than to get up and face the reality. 

The interesting thing about darkness is that even the smallest sliver of light makes a huge impact.  One small match can illuminate an entire room. One small act of kindness can fortify a person with the strength they need to keep going.  Throughout all the dark moments of my daughter’s illness there have been constant flickers of light which give me the strength to get up and be there for her and my family. 

Sometimes those sources of light came in the form of big gestures, like my aunt flying across several states just to give me a hug, the organization that spent hours in traffic just to make sure our freezer was stocked with homemade food, or the hours and hours dedicated by a “big sister” just to make my other children feel special.  Sometimes it was  the smallest gestures that gave just the right amount of spark to keep me going. Family from around the world sending dinner twice a week, to them it was probably “just” a slice of pizza, but to us it was a slice of light, a friends who sat with me and held my hand in the hospital during an MRI, or the woman who brought us dinner, but then stayed an extra 15 minutes to help the other kids with homework. She probably doesn’t even remember those extra few minutes, but we will never forget it. Being on the receiving end of these little and big gestures, I see now that even a short text saying “thinking of you” can never be underestimated. 

Despite being immersed in darkness, I have learned to appreciate the light that exists. If everyone experienced the same level of darkness, there would be no space for light. We are created to have empathy for those around us, but not share their exact experiences. You see, if everyone who loves me felt the same pain, exhaustion, and suffocating fear that I experience every second of every day, no one would be able to function. No one would be able to surround me with love and light which give me the strength to carry on, get up and out of bed every day, no matter how difficult it may be.

Every morning when we wake up we say the blessing of “pokeach ivrim” (opens the eyes of the blind) and again before shema we say “yotzer or” (blessing the one who creates light). Even a blind person recites these blessings, though he cannot not see or experience the light he is praising Hashem for. The blind person himself is surrounded in darkness, but it is through the light of those around him that he is able to benefit from the light and allow him to acknowledge and thank Hashem for that light. 

On Chanukah we light the candles on the menorah to publicize the miracle that took place after the war with the Greeks. One small jug of oil lasted 8 days, creating light in the darkness. When we light the menorah today we are instructed not to use those lights, simply to see them. This restriction on using the lights is a reflection on how we must respond in times of darkness. Sometimes the light is tangible, the solution may be simple. Yet other times, we may find ourselves in such deep darkness which seems helpless. It is in those times that we must channel the light of the Chanukah candles. Just the sight of them, the knowledge that they exist, that Hashem is close by,  serve as a reminder that there is always light in the darkness.