Relearning Motherhood From My Disabled Child

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’s 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 asks 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 disabilities 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 son home we established a normal 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, toy 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.

Now that we lived back in our own house, and acted like a “normal couple”, concerned relatives and friends asked us when we would have more children. 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 teachers.

They told us the meaning that echoed all the experiences we had so deeply, that all my internal contradictions 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 than 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.