I would describe myself as many things; as a wife, a mother, a daughter, a Jewish woman, a teacher, a friend, a thinker, a dreamer, a believer. But tonight, as I write this, I am only a mother of one: my eldest son, my firstborn, my miracle child, the one who wasn’t supposed to survive.
If I were to tell you about him, it would be to tell you of his soulful eyes and his winning smile. I would tell you of his gentle nature, his beautiful, shining presence and his innocent need to hug every person he meets as though he really means it, putting our polite social conventions to shame.
But if you were to ask others, they would describe only his outward appearance. A thirteen year old boy in a wheelchair who is unable to talk, to walk or even to feed himself. These are the facts about my son, but it paints only a fraction of the full picture. The medical files that we have on him fill an entire shelf, and on his diagnoses alone I could fill an entire paragraph.
He is the oldest child of our family, a beloved big brother to all his siblings. As I watch the way they all treat him with love and respect, the way they accept and appreciate him exactly as he is, I am in awe.
Yet, I see this family shifting and the future is coming sooner than I expected. I know a change will come soon. It is something we all go through eventually, but will be especially difficult for those of us with children who can never be independent.
One day, I am going to have to let him go.
Just like all my other children that will leave my home, so will he. But unlike my other children, he won’t be leaving of his own accord. I will have to place him gently in the arms of another and say “Please help me carry this child – I cannot do it on my own anymore.”
My heart is broken.
This Pesach we are experiencing a taste of this future. For the first time in his life, our son Doniel, will be spending a few days in a care home. We found a wonderful Jewish respite home that can take our son for those few days we are unable to care for him at home.
I can’t sleep.
I have made lists, filled out forms, spoken to all the staff at the home to explain to them every detail about him, but I still lie here unable to sleep. What if they don’t remember all the things I told them? What if he doesn’t like their food? What if he feels lonely or lost? But mostly I wonder whether he will feel unloved by those of us who love him the most.
How do you explain to a child who doesn’t understand that one day he will live a life separate from yours? How do you let that child know that, wherever they are in the world, their home is always going to be in your heart and mind? That they are branded on your soul for eternity, as you offer their name up in your prayers every day, morning, afternoon and evening.
As I stand in my kitchen cooking for Pesach, I think about the month of Nissan and the birth of the Jewish People. I imagine us walking out of Egypt as a group of people broken and lost, but still with a small flame of hope inside us. We knew, even then, that we weren’t just walking away from all that was holding us back, but that we were walking towards our greatest selves.
This seder night, I will reflect on the freedom that we were given on this day, thousands of years ago. The freedom to walk towards G-d, place ourselves gently in His arms, and ask Him to carry us, because we cannot do it on our own anymore.
Courtesy of my daughter.