Disability, My Story

When Helping Hands Still Hurt – Part 2

Today I want to tell some stories of my own medical trauma, to help those of you who haven't experienced this to start to wrap your head around what medical trauma might look and feel like and how that might impact someone, and to help break the silence for those who have experienced medical trauma as a patient or caregiver.


I Always Wished …

Disability is a tricky thing.

No one would say that there was a hierarchy - we would say that everyone was equally valuable.

But the truth of the matter is that some conditions are sexy - they get money and press and attention and extra resources and walks and big, multi-million-dollar foundations.

And other conditions are rare.

Other conditions are quiet.

Other conditions get passed over and missed out.

My Story, Parenting

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.