Learning to let go of my son

I would describe myself as many things; as a wife, as a mother, as a daughter, as a Jewish woman, as a teacher, as a friend, as 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 that 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 us, 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 him know that wherever he is in the world, his home is always going to be in my heart and mind? That he is branded on my soul for eternity, as I offer his name up in my prayers every day, morning, afternoon and evening.

So, 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.

Motherhood, through the eyes of God

I go back to the hospital for another scan and wait (impatiently) for my appointment. I am nearing the end and can feel the baby stick its legs in my ribs. I can’t breathe and every step I take, feels like a marathon. It is finally my turn and I get ready to see the baby on the monitor. As the doctor starts his exam, he looks at my notes and questions me about my oldest son disability. I explain that my son is now a teenager but can’t do anything for himself and needs full time care.

He wants to know specifics so he can look for them in the scans. He asked me how my pregnancy was different with him. I am embarrassed to tell him that at the time we didn’t see anything alarming on the scans, there were no signs and I didn’t feel anything different. Considering the profound disablities of our son, I am not surprised that he looks at me with disbelief.

I find myself saying….it was my first pregnancy, my first baby, I was very young, I didn’t notice anything was wrong, still now fifteen years later it sounds like a poor excuse to me.

It was only after the birth, when he couldn’t breathe without extra oxygen, when he couldn’t eat without assistance, when he couldn’t even hold his own head  that we knew something was wrong.  Somehow the doctors had missed all the signs…. And so had I.

This doctor is certain he won’t miss anything, and as he starts measuring all the different body parts, listening to the heart beat and counting organs, I try to distract myself by looking on the monitor for the face of this new soul. Trying to find the answers to all my wants and hopes and dreams on this blurry black and white monitor, but I don’t see it.

Then, when I can no longer hold back, I ask the doctor the question that keeps me up at night.

‘Does everything look ok?’.

What I really want to know, what I really need him to say is that this baby is healthy.  But even when he says all those words, a part of me doesn’t believe him.

I am told that the first time we experience anything, it makes such a powerful impression, that it creates new neural pathways in the brain to teach us (or warn us) what our future experience will be.

My first experience of motherhood was all about hospitals, crisis, sickness, oxygen tubes, cardiac arrests, seizures and finally a diagnosis. The experience was so terrifying, mind numbing, exhausting and heartbreaking. Only later, much later, did I learn that all those words and feelings were carefully placed in my heart and mind under the title of ‘motherhood’.

The ‘motherhood’ experience changed me completely. I was different in a way that I didn’t know anyone could be, different in a way I wasn’t sure anyone could exist.

The new me was a living contradiction. I was able to be so strong in the face of adversity, yet feel so completely vulnerable in the face of my peers. I was able to find joy in the smallest of life’s gifts, yet still not be able to find the answer to the deep sadness in my soul.

When others would speak with me, I was so attuned, I could hear even the things they couldn’t say, but, at the same time, I was unable to articulate even the smallest part of my own soul. I loved my first born son so much that it was painful, but a small part of me felt totally separate from him. I was a whole person and yet completely broken.

When we finally brought our eldest son home, we established a usual routine for an unusual life. His bedroom looked like a hospital room and a toy shop all rolled into one, as we had bought every sensory book and baby gadget we could find. While most days were filled with appointments and consultations, we still found time to try make him giggle, dress him in cute clothes and send pictures to our relatives.

From the moment we left the hospital and brought him back home we tried to act like a ‘normal couple’, and so our relatives and friends asked us when we think we would have more children. They had our best interests at heart, It would be healing they said, it would be a comfort, it would be a new beginning. At the time I was angry with them for not understanding.

I thought we had already began, and that we had already finished.

In truth, having another child, to break me and complete me, was impossible to imagine, so we decided to consult with our Rabbi’s, teachers and mentors.

They told us the deeper meaning of all that I already knew but hadn’t been able to put into words. The ancient wisdom that they shared with us echoed in all our experiences and the reason for my internal conflict became clear.

They told us that the purpose of every soul is to bring the light of truth into the world. That the son we have, was already bringing holiness into the world by the miracle of his existence. That in this world, he may look like the child that is the most broken but if we could only see him through the eyes of G-d, we would see that it is his soul that is the most whole.

They said any other children we would bring into the world would be able to see this greatness, learn from it and reveal it. And that having another child would be an act of great faith and enormous courage, and should only be done if we had already learned the most important lesson from this part of our journey.

That the outcome of all our wants, hopes and dreams will be exactly the way G-d wants it to be, and that if we could live our lives through this truth, we will be able to see His goodness and greatness in our life  journey.

We took the brave step, and expanded our family. As we see our other children grow up alongside our oldest son, and then all too quickly over take him in every way physically, intellectually and emotionally, we see the spiritual bond they have with him. The kind of bond that moves beyond language of the mind and becomes a language of the soul.

What more precious gift can you give to your children then to teach them the language of the soul and watch them experience the deep wisdom that comes with it.

And yet still each time I get ready to bring a new soul into the world, I have to gather all my courage, let go of all my wants and hopes and dreams, and wait (impatiently) to reveal the goodness and the greatness in our life journey that is G-d.