This blog represents the first in a series of guest blogs. Each month, Jacob’s Cure will feature a post by one of our Canavan families offering a perspective on their lives and experiences living with this disease. Jacob’s Cure is proud to welcome the Ben Moshe family from Israel as our very first guest bloggers. To find out more about them and Lavi, you can find them on Facebook and Twitter or on the web at http://www.give2lavi.org. Please also watch Lavi’s video in the box on the right ———>
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Lavi with Dr. Paola Leone
On this Passover Eve we were thinking what we can give to our family, friends, and all those who joined us on our journey. We think the truest and most beautiful thing we have to give is share our personal feelings.
The holiday begins soon and finds us on a personal exodus. On the Holocaust Memorial Day (how symbolic), 23 months ago, our baby was born and challenged us to go on the journey of our life.
Our Lavi, pure and beautiful, is afflicted with a rare genetic disease that forced us to challenge everything we knew so far and travel to an unknown land.
We will never forget the moment when the doctor told us “the advice I have to give is not easy, but someone has to say it – you’re a young couple, you have two healthy children, you should give up. There are institutions to take care of such children. You should move on.”
It’s not as if we didn’t receive two wonderful gifts already:
Gaya – our oldest child. A special daughter – full of light and wisdom, sharp and smart.
Yali – our second child. An amazing son, smart, brimming with joy and always true to himself.
We looked at them and knew that for their sake and for Lavi we must do everything we can to save him.
We knew that giving up was the easy solution for us, but we chose the path of difficulties and growth.
Thus began our exodus, our journey to an unknown land. We chose a way of total devotion trusting that good things await us, as we walk in the desert and choose every day this challenging road anew.
And the pot of flesh, oh the pot of flesh which appears whenever we are overwhelmed by hardship, these moments when we remember our previous life and a thought steals in – why is this happening to us? Maybe we should give up?
And there’s the Mount of Sinai. The Mount which appears every time we need to be reminded of the fact that we are free to choose and that we can choose to be ourselves.
And since we are looking at this exodus in retrospect, we sometimes worry that we’ll be like Moses, who went the whole way, yet was not allowed to enter the Promised Land. And when we recognize this fear, we have to decide again that whatever the outcome, we will accept it, even if like Moses we overcome all these hardships only for someone else to enjoy our achievement. Lavi and us will be remembered for breaking the way. And perhaps, by chance or not, since our family name, Ben Moshe, means sons of Moses, perhaps with your help we will get to the Promised Land where Lavi lives a full life.
So on this Passover Eve, we wish you a holiday full of light and love, that you will allow yourself to experience the exodus in your own life, and choose a powerful and loving life. Remember that only those who dare to challenge their own limits, only those who dare for once to question all certainties – only they know the meaning of true freedom.
Loads of love,
Gili, Yulia, Gaya, Yali and Lavi Ben Moshe
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