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.

Remembering Dan

May 17, 2015

Twenty six years ago today we welcomed the arrival of our second son.

Every birth is special and there was added poignancy to Dan’s because his older brother Tom, who had been born a little more than two years earlier, had lived only 20 weeks.

Extensive tests throughout Tom’s life and a post-mortem had ruled out all the known genetic conditions. We were told barring the one in a million chance Tom had suffered from something medical science hadn’t picked up, it was safe to have another baby.

Dan was that one in a million baby. A couple of weeks after he was born he started having convulsions. I’d watched his brother have hundreds of fits and had no doubt about what was happening.

We called our GP who sent us down to Dunedin hospital where Dan went through the battery of examinations his brother had, and like those for Tom they came up with no diagnosis.

As various diseases and conditions were ruled out though, his doctor became as sure as he could be about the prognosis – Dan’s life would be short and his development severely compromised.

Dan defied the prediction of his imminent death but not the one that he’d be profoundly handicapped. He lived more than five times longer than Tom had, dying a couple of weeks past his fifth birthday. However, he passed none of the developmental milestones and could do no more the day he died than he’d been able to the day he was born.

Caring for a child with multiple disabilities was demanding but we were supported by a close extended family, true friends, wonderful health professionals and IHC.

When he died I was sad, but I also felt some relief from the knowledge that his death would free us from the challenges which his life had presented us with.

In spite of that sense of relief, I was also confronted by grief for the baby we’d wanted and loved so much; and not just for what we’d lost but what we could never have – the hopes and dreams for his future as a happy, healthy boy and man.

The stages of grief – denial, anger, bargaining, depression and acceptance – make it appear orderly.

It’s not. It’s messy, unpredictable and it hurts. But, like a wound, it also heals.

There is no wonder treatment that can help the healing, but like Robert Fulghum:

“I believe that imagination is stronger than knowledge-

That myth is more potent than history.

I believe that dreams are more powerful than facts-

That hope always triumphs over experience-

That laughter is the only cure for grief.

And I believe that love is stronger than death.”

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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