366 days of gratitude

May 17, 2016

Our second son would have been celebrating a birthday today.

But he died just 10 days after his fifth birthday. He had a brain disorder that left him with multiple handicaps and had led to the death of his older brother, Tom, when he was only 20 weeks-old.

When Dan died I was sad, but I was also relieved. Looking after a five year-old who could do no more than a new-born child was demanding and I knew our lives would be easier without him but I also know they are better because he lived.

His death freed us up to do things which were difficult to do with him but his life made us realise we shouldn’t take them for granted.

It was easy to say he couldn’t do anything but he taught us to appreciate simple pleasures, to lose the ignorance we had about intellectual disability, how fortunate we are to be part of a close extended family and circle of friends, that ability isn’t a right but a privilege and that love really is stronger than death.

Today I’m grateful for all of that.


Quote of the day

April 22, 2015

“Only people who are capable of loving strongly can also suffer great sorrow, but this same necessity of loving serves to counteract their grief and heals them.” ~ Leo Tolstoy

Today would have been our son Tom’s 28th birthday but he died at just 20 weeks as the result of a degenerative brain disorder, the cause of which has not been diagnosed.

Tolstoy is right and this quote reinforces my belief in the power of love.

It also reminds me that life after the death of Tom, and his younger brother Dan who had the same condition, is better not just in spite of their lives and deaths but also because of them.

Their deaths freed us to live as we couldn’t when we were caring for them but it is only because of what we learned from them that we truly appreciate that.

Their short lives and their multiple handicaps taught us to lose the ignorance and fear we had of disabilities.

They taught us that we are blessed by extended family and friends whose love and support provided so much when we needed it.

Our sons also taught us that good health and ability aren’t rights but privileges.

A lot of people tell me they couldn’t cope had they lost one child let alone two,

I answer that it would be throwing back the gifts our sons gave us if we didn’t make the most of all that they can’t.

Tolstoy’s quote speaks of the power of love and as Robert Fulgham reminds us in The Story Teller’s Creed, love is stronger than death.

 


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