This 10-part post is a summary of the past eight years of my life. During those years, I’ve been frequently asked to share my experiences and lessons as a father of a child with disabilities. I found myself speaking to other parents of children with disabilities, entrepreneurs, business leaders, impact investors and donors, as well as the general public.
It was a good way for me to raise awareness for a great cause: the need for a wider inclusion, and greater participation of people with disabilities in our society. Also, by raising funding for the non-profit organization that cares for my daughter, I was able to give something back for all that they have done for my daughter and our family. This funding enables them to expand their impact, and improve the lives of other children with disabilities and their families.
Along the way, I found that in addition to the specific issues and challenges faced by people with disabilities, there are some profound lessons that are relevant to anyone. And although my personal experiences were a result of raising a child with disabilities, the lessons are universal. Because, at some point or another we all have to deal with adversities, and problems in our lives.
So, now after eight years, I’ve decided it’s time for me to summarize my main lessons in writing so I can share them more broadly. Hopefully, you will find some of it helpful and useful in your life.
My eight-year-old daughter is a child with disabilities. She was born prematurely, in week 31, weighing less than 1 kg, and with a rare defect in her brain. She has been diagnosed with a significant delay in her development. This includes delays in her cognitive, motoric, and speech development.
Raising a child with disabilities is a continuous, daily effort. It becomes your #1 priority in life. It consumes most of your time, attention, energy, and patience. It’s a burden, physically and mentally.
But, it can also bring meaning and purpose into your life, and provide you with some valuable lessons.
1. Life is short and can change in a minute – Make it matter!
To us it happened on a nice Sunday afternoon in the middle of life. My wife was in the 31st week of her pregnancy with our daughter. Until then, all the medical indications, as well as her doctor’s opinion, were that it’s a perfectly normal and healthy pregnancy.
I was also doing well. Having a successful career as a hi-tech executive, and providing a good standard of living for my family.
On that day, we went to a final ultrasound checkup with a specialist doctor. This was an optional checkup. My wife’s OBGYN said it wasn’t necessary. But, for some reason, we decided to do it, even though it wasn’t cheap.
Two minutes into the ultrasound examination the doctor told us that there is a serious problem. One of those “Houston, we have a problem” moments. There was a significant lack of amniotic fluid. The fetus was very small and underdeveloped, and he couldn’t take her heart rate. He told us to go straight to the emergency delivery room in the closest hospital.
After four days of waiting to see if we can continue with the pregnancy, the hospital doctors decided that the risk to the baby is too high, and that they should intervene. That meant doing a C-section operation. Their assessment was that the baby will be more than 1.5 kg, and in week 31 that puts her at a low risk for a premature baby. That was the right decision.
But nothing prepared us for the next major shock. Soon after the baby was taken out, in what was a successful C-section, they did a brain ultrasound on her. It’s a common practice for all premature born babies. What they found was a rare brain defect known as a partial agenesis of the corpus callosum.
Our lives changed forever.
After our daughter was born, my wife and I decided to make it a defining event in our lives. We both felt that this happened for a purpose, and that we should see it as an opportunity. We knew that this will be a challenging ordeal, and yet we knew that we will prevail.
My first decision was to quit my job so that I can dedicate myself fully to my daughter, her needs, and her development. I also felt that I need to be available for my family in this difficult period of time.
Being at home gave me valuable time to think. Think about my life so far, my true priorities, and how I want to live my life going forward. I decided that I want to spend my time only doing things that are meaningful to me. As a result, I left my career as a high-tech executive to become an entrepreneur.
One of the main advantages of being an entrepreneur is the opportunity to make a choice. You can choose what problem you want to solve; choose the partner you want to work with in solving this problem; and choose how.
I also decided to dedicate some of my time to volunteer work.
Being a father of a child with disabilities makes my life more challenging than before. And yet, today I feel that my life has more purpose, and more value than before.
Don’t waste your time on things that don’t matter to you. Find what is meaningful to you; what makes you come alive. And go do it. Now.