That special kind of hope

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Christmas is over and the New Year is upon us. This year I witnessed a number of close friends watch their own special angel transition, the sorrow of which has been indescribable. I put up our Christmas tree early in November to honour one such angel on the  day he passed. Today, I have decided I will take down our Christmas tree. I think this is the earliest I’ve ever done so, but it just feels like it is time.

It is time to embrace that special kind of hope.

Pretty much everyone looks at the New Year as a time to reflect, and then a time to look forward. A time to hope for better things to come. But when it comes to a parent of a child with a life-limiting illness, our hope is magnified. Ten fold. A hundred fold. Who am I kidding, we hope like there is no tomorrow! Ah, wait. Therein lies the key to exactly why we hope as we do…because for our angel, we never know if there will be a tomorrow.

Now, this isn’t a negative way to think. Once this gut-wrenching fact is accepted, it can (and should, and in time will) evolve into a new way of looking at life. And oh how we do! In fact, some of us are thought of as eccentric. Some as too outspoken. Some as a bit mad in the head. But at the end of the day, what it is about us…what makes us HOPE like we do…is our understanding of the fragility of life. The fleeting nature of life. With that comes a respect for it that brings us to a level of passion for life that many others cannot fully grasp.

We live life to the fullest. With hope. With passion.

We know life is made of moments, not years.

Bring on 2016! We carry hope for our angels that this year will bring stable health. We have hope for the siblings that they will continue to thrive as individuals in their own amazing way. And, very importantly, we hope for ourselves. Yes, we must remember ourselves on this journey too, and remember to live our lives to the fullest, with passion and hope, nurturing the person we are outside of the role as the parent to a special child.

So, here’s to life lived to the fullest…with passion…with hope!

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