Baruch, Our Special Child

It was about fifteen years ago when we embarked on our exciting position to establish a Jewish educational network in Glen Waverly, Australia. We were about a thirty minute drive from the main Jewish neighbourhood, and it was quite a challenge for a young and seemingly inexperienced couple with two small children.

Soon after we moved, a woman began coming to a playgroup I had started. She had one little boy and was soon expecting another child. You can't imagine the smile on her face when she told me she was pregnant with twins. Unfortunately, toward the end of her pregnancy, she no longer felt movement and tragically, gave birth to stillborn twin girls. Their grief was unimaginable.

These devastated parents, a young couple themselves, came to spend Yom Kippur with us so that they could walk to synagogue on this holiest day. We spoke, and I shared some thoughts from Chassidut about dealing with tragedy and about G‑d and His mysterious ways. But, all along, I felt that perhaps I had no right to speak. I kept thinking that she was probably wondering, "What would she know? Here she is, young, with two healthy children - what does she know about life's challenges?"

Yet, I spoke from the heart and tried to be there for her. This fear, however, lingered in my mind. How could we speak to couples and offer counseling to people who had much more life experience than we had? How could our words penetrate the hearts of others who went through something that we would never want to experience?

And then, our son Baruch was born.

My third pregnancy began like my others, with the excitement of knowing we were bringing another child into this world. Yet as time went on, I began feeling unwell. I seemed to be much larger than I was in my previous pregnancies, and would often get dizzy spells and sudden periods of intense hunger. My obstetrician kept assuring me that all was normal, but in my heart, I did not feel it was so.

Two weeks before my scheduled C-section, my water broke and we went immediately to the hospital. It was not long before the doctor arrived and I was prepped for surgery.

When I awoke, the first thing I wanted to know was whether I'd had a boy or a girl. The nurses would not say. They kept saying, "The doctor will come in soon." Their avoidance of my question made me panicky and I remember crying out to them, "Why won't you tell me? Is the baby okay? What is wrong?"

The doctor finally came and told me that all was not well. The baby had some problems and was being transferred to the newborn intensive care unit of one of the major hospitals as we spoke. The ambulance officers brought my baby in, in his humidicrib, and all I could see were tubes and more tubes... and then they took him away. It was a few days before I was strong enough to go to the other hospital to see him.

He had a cleft lip and palate and his esophageus was not complete. The nurse informed me that this condition, known as a tracheal-oesophageal fistular, was repairable, as were his cleft lip and palate. A few surgeries and he would be just fine was their prediction.

We named him early on since we knew it would be some time before he would have a brit. The name Baruch Refael (which means "Blessed is the One who heals") seemed most appropriate for we knew that only G‑d would be the one to heal him. This seemed especially appropriate for the Hebrew month of Iyar (in which he was born), since the name Iyar is an acronym for Ani Hashem Rofeicha - "I am G‑d who heals you."

At three days old, our son underwent his first surgery and thus began a seven month stay in the intensive care unit. It was not as easy as they first predicted. Yes, they fixed the esophageus at three days and his cleft lip at three weeks, but he was unable to nurse, and even using a bottle with a special teat for cleft palates did not help. He would just get distressed and breathless and was having episodes where he would turn blue and stop breathing.

Finally, at five months, the doctors decided that something else might be happening. Scans of his heart showed an abnormal valve that needed to be opened. Complications with this heart procedure led to open heart surgery which, while successful, revealed that he had a hole in his heart.

It was then that we discovered that our son had CHARGE syndrome. CHARGE is an acronym for six abnormalities that tend to appear in clusters. It is a condition with no known cause and is not hereditary. Something happened during the early weeks of gestation, they told me. The diagnosis led to a hearing test since ear abnormalities and/or deafness (the E in CHARGE) is common. We then found out that our son was profoundly deaf in both ears.

Because of his problems with swallowing, he underwent surgery for a gastrostomy to insert a tube in his stomach for feeding. When this wasn't successful in stopping his "turning blue" episodes, he needed a tracheostomy, a tube through his neck. The care of a tracheostomy was quite daunting and it was a few weeks before we were confident enough to look after him ourselves.

Those first seven months of Baruch's life seemed like a lifetime. I spent all day, every day, at the hospital. I was pumping so that Baruch would have breast milk for as long as possible. Looking back, I don't know how I did it, but I kept this up for months. My two other children, aged two and three-and-a-half when Baruch was born, were in preschool. I would leave the house after my husband had left to take them to school, and I would try to be home by the time they returned.

My life was a blur and most of my friends did not know what to say, so they did not say anything. It was very isolating, yet I was also probably not ready to share much at that point either. A bi-weekly session with the social worker at the hospital was quite helpful. Not knowing all the problems at once probably helped as well. We focused on one issue at a time, since it was always "just one more hurdle" to overcome.

We scheduled his brit to take place in the hospital before he went home. The mohel came and we had a small family affair. The next week, at the age of seven-and-a-half months, Baruch Refael finally came home, but he needed twenty-four hour care. He could not be left alone at all since every few minutes his tube needed to be cleared for him to breathe.

We had no idea what the ramifications of full-time care meant, but fortunately, a friend of mine did. She took matters into her own hands and raised the necessary funds so that we could afford a live-in "nanny" to help with his care. I had night duty since I could at least catch some sleep during the day. My husband had to leave early each morning for work in order to support us, but was a tremendous help with our other two young children, not to mention that he handled all the cooking (fortunately, this has continued until today!). The constant care needed for Baruch went on for two years until Baruch was finally old enough and strong enough to cough his secretions out so that he didn't need to be suctioned every five minutes!

Interestingly, Baruch was born in the month of Iyar which is the middle of the school year here in Australia. Just that year, I had begun to teach Chassidut at the girls' high school (in addition to the Bible, Prophets and Judaic classes that I had already been teaching for a few years.) We had just finished the topic of Divine Providence and dealing with tests and challenges, when I was given my own personal challenge.

One of my first thoughts was that G‑d had sent me the ability to heal before sending me this challenge. Teaching something allows the subject matter to be internalized in a way that cannot happen if you just learn it yourself. It was the teaching of Chassidut that helped me through those months, and many a time I said, ashreinu mah tov chelkeinu - "how happy our we, how good is our portion." I don't know how I would have made sense or found meaning in our situation without the Torah.

One of the first people I thought of was this young woman who had lost her twins. I wanted to tell her, "Everything I told you then, I still believe! I have not changed anything even though I am now faced with this tremendous challenge myself." (I did see her a few months later and a new relationship was formed. Since then we have been fortunate to celebrate together the births of two more children for her, and for us as well.)

Just when we thought we were over the biggest hurdle, at one year, Baruch Rafael was back in hospital for a cleft palate repair when he caught a virus. His temperature was so high that his muscles literally melted. He went into kidney failure and was put on a respirator.

I was sitting with a cousin of mine as the doctor started explaining to me that the heart was also a muscle, and that with the amount of muscle meltdown my son had, his heart was definitely affected, and that he would probably not survive the weekend. I remember looking at the doctor and thinking: "You are not G‑d. That is your opinion, but anything can happen." My lack of verbal response to the doctor was unnerving for him. He kept asking me if I had understood what he said.

We prepared ourselves for the worst and I remember getting phone calls from around the world from people telling us that they were reciting Psalms for our son. But, I also remember so vividly that I did not pray for him to recover. Rather, I prayed for G‑d to give me the strength to go on no matter what He decided. If He wanted to take my son from me, then I asked for the strength to cope with that. And if He chose to let my son recover from this situation, then I asked for the strength to go on and to care for him, for we did not know what state he would be in.

Miraculously, his kidneys did kick back in and he was weaned off the respirator. We took him home as a "vegetable." He had lost the ability to move, to sit and even to smile - all the things he was doing before we had entered the hospital for his palate repair. It took a week before he smiled again, a few weeks for him to begin rolling round, and a few years before he was able to sit again unaided.

He began using a walker to walk at about the age of four or five and continued to depend on that until he was around nine. Now he walks independently, although with a very distinct gait. He wears a helmet at all times to protect his head in case he falls. We communicate entirely in sign language and he goes to a special school. Unfortunately the tracheostomy never did come out, which severely limits our options for care or respite. There are also the challenges of trying to do the best for him as well as for the rest of the family (he has four siblings, two older and two younger), in addition to our outreach work.

Baruch Refael HaCohen is turning thirteen this Iyar, but his overall function is more like that of a six to eight year old than it is to his true age. How to mark his Bar Mitzvah is a dilemma that we are working through right now.

But believing that one definitely has the ability to cope is the most important factor in actually coping with day-to-day challenges. I often think about how fortunate we truly are for so many things, and most importantly, that we have a Torah that assures us that G‑d does not give us any challenges that we cannot overcome - perhaps not completely on our own, but they are within our grasp. Reaching out to the right support is, to me, a corollary of this concept.

I am continuously grateful that we have Chassidut, which helps us to see this world through a different set of glasses. Special children are just that - "special" souls sent to this world for a very specific mission. When we open our eyes, we begin to see the positive affects they have on the people around them, ourselves included.

It has been twelve years since the doctor told me that my baby wouldn't live. And contrary to what we were told, he didn't remain a "vegetable." Baruch Refael is a very happy child and whoever meets him cannot help but be positively affected by him. He has given us all a deeper understanding of life, and the ability to reach out to others in a way that other people cannot. He has touched many lives while he has completely changed ours.

Whether it is the outpouring of goodwill and loving-kindness, the saying of Psalms, learning to be patient or the simple appreciation of life that we so often take for granted, they are all a constant reminder that there is a G‑d in this world who works in ways that we do not always understand. Yet, He is there, sending us His messages, intertwining them in our lives. It is merely up to us to unravel them.

I wrote this poem shortly after Baruch Refael's birth:

The Waves of Life

Ride the waves of life, my friend
Some high, some fierce, some with no end
But you'll not be washed away by them
If you can ride the waves of life, my friend

Weights may try to pull you down
Emotions full of pain
But hold on to a board
And ride the waves, my friend

A board will keep you up above
The water deep and mean
And let you ride the waves of life
Ride the waves with ease

And what's the board, this heaven sent
To hold on to in the sea?
This board, my friend, is nothing new
You had it all along with you
But you have to know it's there before
You can use its strength to hold and more
The board, my friend, is nothing new
It's just the strength of the inner you

So ride the waves of life, my friend
Ride the waves with ease
Let the water splash your face
Like grass sprinkled with dew
For you can still keep the pace
IF you hold on to the strength of the real you
And ride the waves of life