Grief, Not Guilt

And the prevailing responses in all of these cases is either to become defensive or to grovel in guilt or wallow in shame.

The problem with all three of these responses, is that all of them create big emotions that we then use to distance ourselves from the pain of the one we’ve hurt. If our emotions are big enough to take up the whole room, we don’t have to see the emotions of the person who is suffering. They are actually just different forms of self-protection.

Infant Loss and Awareness Day

Today is Infant Loss and Awareness Day – and the 15th one I’ve observed as a mother who lost her child.

The little boy at the top of this screen is my son.

He was born the day before my 23rd birthday – the second of my three children – fifteen years ago this past August.

He was beautiful and a fighter and had these intense ‘old eyes’ that felt like they could see into the depths of your soul.

But he also had Trisomy 18 – a chromosomal abnormality similar to Down’s Syndrome that causes each and every cell to end up with too much genetic information. In Jeremiah’s case – and in the case of the 1:3000 live births with Trisomy 18 – this meant that Jeremiah’s chances of reaching his first birthday alive were less than 10%.

So I slurped up every ounce of my baby, knowing that his time was limited, but with no knowledge of exactly how long we had.

Until one day I knew.

Canaries in Coalmines …

There is this tendency to want to “fix” people. To make it so that they stop responding “inappropriately” or “fit in” better. But what if we viewed those with disability, autism or mental health issues like canaries – vulnerable yet valuable members of our community, who had the capacity to help us see when we might be in trouble, and make adjustments to the way in which we were living sooner rather than later?

Lean In

The other day, my partner and I were talking about when our (now 17-year-old) child was a baby. 

We were talking about how scared we both were.

How unprepared.

How completely out of our depth we felt.

And it was the first time either one of us had heard that from the other.

You see, we were young, and scared, and both of us were valiantly trying to hold it together for the other.

But that only got us so far.

We both ended up feeling awfully alone. horribly unsupported, and very isolated that first year. And although part of that was because of a lack of a good support system, part of that was because we were scared to lean in.