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Eyes Wide Open

Eyes Wide Open

Our disabled son has taught me to embrace the simple and everyday beauty of life.

by

When the doctors initially told us that our first born infant son would never walk, talk, see, or live to age ten, I thought that life was over. I had no idea that it was actually just beginning.

Jacob has Canavan disease, a rare, fatal neurodegenerative illness for which there is no known cure or treatment. We were told that he most likely wouldn’t live to see his third birthday. He is ten as I write this article. Jacob’s diagnosis taught me with brutal force to open my eyes and to see the positive. What choice do we have? Often, our life is completely out of our control, Jacob has taught me to only control the things that I can and to just go with the flow with everything else. When I follow this mantra it’s amazing what can unfold.

Jacob’s diagnosis taught me with brutal force to open my eyes and to see the positive.

I love the expression “We plan and God laughs.” We always seem so surprised when things don’t go our way.

The motto in our house is “Welcome to Holland”. The phrase originated from a story written by Emily Perl Kingsley, a writer for Sesame Street. I received this just as I was trying to make sense of the fatal diagnosis Jacob been given.

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Ten years later I can honestly say that I love Holland. Yes, we will eventually get to Italy, but we have become stronger, more resilient and wiser along the way.

Jacob has taught me to take a situation, any situation and make it positive. He has demonstrated great resilience, as he has bounced back from Gene Replacement Therapy, Meningitis, Hydrocephalus, lengthy seizures, a coma, numerous neurosurgeries, and constant bouts of pneumonia. When Jacob is ill he will sleep for days on end. Nothing can rouse him, only time. His breaths are extremely laboured and just watching him attempt to inhale and exhale is painful. He continues to regain strength after each heartbreaking episode. Jacob will gather enough strength to open his eyes and form a beautiful smile. A small smile from Jacob is one of life’s greatest gifts.

When Jacob is healthy, his smile resonates. His eyes sparkle and he giggles and laughs at the littlest things. A spoon dropping to the floor will put Jacob into fits of hysteria. Jacob loves to be held, walked, sung and spoken to. He loves to be surrounded by other children and his family members. When my husband Jeff opens the door and yells “Daddy’s home!” Jacob’s eyes brighten up and gaze towards the front door. He isn’t able to see us, but he hears everything. Jacob appreciates everything, and expects nothing in return. He is grateful for a light kiss on the cheek, a gentle hello, a walk outside, or a push on his retrofitted swing.

Because of Jacob, Jacob’s Ladder was born. In just seven years this small charity created by our family has grown into a multimillion dollar foundation raising funds for education, awareness and research into neurodegenerative illnesses. Once again, my eyes have been opened to the goodness in this world. Every newspaper is filled with horrifying stories. Jacob’s Ladder is about community support and love. The positive energy is contagious and every person or company that has become involved has benefited.

Watching Every Move

Recently I was driving my seven-year-old daughter home. Out of the blue, Beverly said, “Mom, please don’t be mad at me, but I have to tell you something.” I sighed curiously, answered a non-judgmentally, “What is it honey?”

“When I grow up I don’t want to have a child in a wheelchair.”

I swallowed, not expecting this discussion but couldn’t help to wonder what was developing in her creative mind. I responded, “Beverly, your Daddy and I didn’t wish for a child in a wheelchair either, but sometimes things happen in life that you don’t expect or plan. Look how special Jacob is and look at all of the lessons that he continues to teach us every day.”

She was silent for a few moments, but I could almost hear the many question marks popping up in her brain. “Mommy, did you and Daddy start Jacob’s Ladder because you didn’t want other parents to have sick children in wheelchairs like Jakey?”

I nodded my head in agreement. I didn’t know how to answer that question without sobbing. After a silent moment, she asked me one more question. “Mom, when you die, can I run Jacob’s Ladder?”

I knew that Jeff and I must have done something right. Our seven-year-old daughter wanted to make a difference.

I knew that Jeff and I must have done something right. Our seven-year-old daughter wanted to make a difference.

I didn’t realize that while for months on end she was watching every move we made. We were in the midst of planning our Jacob’s Ladder Giving Gala. Every night I was engrossed with e-mails, telephone calls, pick-up and deliveries. She took it all in. She listened at the top of the stairs at 9 at night when 15 of us sat weekly to discuss and plan every detail of our upcoming fundraiser. She came with me for deliveries and pick ups. I realized that she is learning this lesson by osmosis.

Kids learn from their models. They learn from our actions and behaviours. They don’t miss a trick Our children our so accepting, so resilient, and so honest. We should follow their lead once in a while and let them teach us.

Looking through the eyes of a child, we see who we wish we could be: that unbelievable excitement they feel as they first open their eyes in the morning as they embrace the new day ahead. The appreciation of the simple pleasures in life, as they stop to examine that rock or stick lying by the roadside. Children are immersed in the moment. Their highs are so high, and their lows are so low yet only lasting for a moment until something wonderful breaks the spell to bring them right back to the wonderful moment again.

Trip to Italy

For my 40th birthday present, my husband Jeff offered to take me on a special holiday trip to Italy. I couldn’t believe it. I accepted it with great appreciation.

Later that week, I was tucking my four year old son Ben into bed. We had just completed reading Green Eggs and Ham for the 89th time, and I lay silently beside him stroking his back as he fell into dreamland. I looked at his sweet face and began to sob. I couldn’t even fathom going on seven hour airplane ride across the Atlantic for a week. Who was I kidding?

I walked down the stairs and asked Jeff, “Is this birthday present about making dreams come true?”

He smiled at me, knowing full well that there was no way we were going to Italy. After 13 years of marriage he knew me well.

“If this is about making memories and granting dreams," I said, "I do have one wish. I would like to take our family to Disney World while Jakey is still with us. I would love to take him to Disney with his sister and his brother and we can create a very special memory with all of us together as a family.”

He smiled and promised me that my wish would be granted. I was offered the dream of visiting Italy, and I chose to stay in Holland.

This essay will appear in Liz Pearl’s Book called “Living Legacies for our Daughters: An Anthology of Contemporary Canadian Jewish Women”

Published: December 8, 2007


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Visitor Comments: 25

(25) Anonymous, November 6, 2013 3:40 PM

Bless you

We adopted a baby boy being told he was a healthy child, only to learn he had Neuroblastomo Stage IV. We were told he would not survive to age 10. He is 33 years old. Every day is a blessing. I thank HaShem every day for giving him life and for giving him to us as a child. I am willing to bet you do the same thing. We do not look for what could have been, we are thankful for what we have. Thank you for creating Jacob's Ladder.

(24) Rudian, October 6, 2013 4:14 PM

a true perfect soul in a handicapt body

as a single mom with an 14 year old son with autism and a brainhandicap (the term mental does not fit the problem exactly 'cause mentally he is perfect made by Hashem but in this world he doesn't fit in) living in real Holland, it felt as needing to travel to the North Pole ;-)

A dear friend sent me the Holland-story and I needed to re-evaluate my being a mom and change my parent expectations too in a very early stage !

I really believe that Hashem choose in His wisdom to give me this responsability for my son so Hashem could reveal to me how great His Love and Care is me. He started his life without speech, but he proved the docters who warned me he would never speak wrong, because little by little he learned to speak and eventually learned by lots of trying to communicate with words. I think Ellen will agree that the communication with a special child exceeds far beyond words and that heavenly form is so precious.

Be blessed and we wish you, Ellen with your family in the care for your Jacob all wisdom and enjoyment of the little wonders that can be seen everyday. Please give Jacob a very big big from us both .....

with lots of love from Holland !

(23) Sharon, February 27, 2011 10:57 AM

a very apt analogy

This is an inspiring article. And your analogy correctly shows us how our feelings toward anything are so much a function of expectations. We should never compare ourselves to others, but only consider how G-d's orchestration of our lives might bring out the best responses. Obviously a disabled child is capable of bringing joy to his family, but not if they are forever focused on what they believe should have been. I personally don't have the emotional strength that the author possesses, but have come to accept that also.

(22) Anonymous, January 5, 2011 10:42 PM

canavan disease

It's so tough to see kids go through tough times. Whether it be something short term or something like canavan disease. It's inspiring to see people that care and want to help. Keep it up!

(21) alyssa, April 3, 2009 7:45 PM

Thank you so much for this article.

I have a little brother that sounds so much like your son.He is eieght years old and doesnt walk or talk but he has always found a way to verbalize in his own special way.He also thinks it is hilarious when you drop something or if he hears any loud bang! My family adopted him when he was two years old and he has changed us so much and taught us more than we could ever teach him. He has been an incredible blessing to our family and I dont know how we can ever thank G-d enough for him. We have adopted two more special needs children and love every second of being w/ them and caring for them. I can understand the unique,wonderful,awesome love you have for your special little guy.

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