A few days ago I found myself in the car with my husband and 5 children. We were on our way to UCSF Genetics Department building in San Francisco. We have a special needs baby who is 11 ½ months old and this was one of many appointments which we travel to.
In trying to prepare my children for the 2 ½ hour appointment I calmly begin explaining that even though these doctors will take a look at every detail of our baby, the most important thing is that we love him. That when we look at our baby brother, we feel happy inside and accept him just the way he is…you know, one of those heavy conversations you have as a mother…
So I continue to explain that the doctors that will see our Chaim Boruch are doctors that are trained to work with special needs children.
Before I could say another word, my little Mendel, age 3, with his beautiful smile and with pudgy hands patting his legs, triumphantly says;
“ Yeah! Special Knees!!!”.
And all the heaviness in my heart, and the seriousness of the moment before, melted away with the deep laughter of my entire family.
And yes indeed, our little baby just has ‘special knees’ – there’s nothing more to it.
Just ‘Special Knees’.
I suppose it has been a recent challenge, a mountain in my life to climb.
I suppose it has been a heavy weight, crashing waves of emotion, dread, fear and ultimately strength.
I look back at the last seven months of my life – the moment I became aware of complications with my pregnancy of my 5th child.
My son Chaim Boruch was born with Duodenal Atresia – a blockage in his intestines. Twelve hours after birth he underwent complicated surgery, and there I found myself in a Neonatal Intensive Care Unit, Feeling very alone.
It was Friday night…my husband had returned home to prepare Shabbos for my other children , creating a sense of normalcy in a stressful time.
It was that very night that I found Him.
Holding my new baby’s hand in mine. His fingers so delicate, so tiny and so very new to this world.
A sterile world, filled with machines and monitors, beeping and rhythmic.
I looked at his face, oxygen was flowing to his lungs, tubes, IV and so many wires.
I held his hand tight. I let the tears flow. They were tears of anger, hurt, self pity and wonder.
Dear G-d, how could you have sent me this nightmare? How could this be happening to me? How could it be that this is my life? My very life full of chaos, fear and the unknown.
It was that night that I found him.
I cried as I left my baby in that small cold bassinet. I cried as I walked down the sterile scented hallway. I sobbed as I fell into bed feeling so empty, so very empty.
It was then that I realized with a profound gratitude that I really was not alone.
I had been thrown into a room in my mind. A room without oxygen, a room without light, a room in which no doors existed.
Yet I had to breathe, I had to see and I had to find a way out.
How? Where? Who and what would save me?
It was that night that I found G-d.
He held my hand. He gave me breath, he gave me strength.
He gave me closeness that I have never felt before.
I found G-d.
I found strength, faith, belief and the tools to cope.
G-d was with me, sharing in my pain. Soothing the ache in a mother’s heart.
I found G-d inside me.