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.

And we were saying goodbye to our son who we had only known for 21 days.

Since that day I have supported hundreds of families through the experience of loosing a child.

Many – indeed most – of those families have been online. A few very special folks I have had the privilege of walking beside as they’ve given birth and said goodbye to their precious children.

And in the process I have learned a few things about grieving infant loss.

Grief is far better when it is shared. We were never meant to do this process on our own. If you are grieving a child – or indeed the loss of any loved one – then there is so much value in reaching out and asking for help.

You are not alone. If reaching out to those around you feels impossible – because it seems they simply cannot understand – that doesn’t have to leave you on your own. In this digital age we have the benefit of connecting across area codes and time zones – across social and national boundaries – to find others who have also walked this path. Reach out to organizations like the Trisomy 18 Foundation or the PAIL Network or any of the multitude of local support organizations available around the world. Find someone to walk this journey with you who you know will understand when no one else does. I would be more than happy to talk with you! 

Grief is physical and tangible – and needs nurturing space to be experienced. If you know someone who is grieving a child, find ways to show up practically and regularly. Take care of groceries, dishes, laundry, or other children. Make a pot of tea and share some home baking. Allow the grieving parents space to feel whatever they need to feel – and to respond however they need to respond.

Grief comes in waves, and we have to choose to go through each wave as it comes. Pretending that it doesn’t hurt, or that you aren’t angry, or that you aren’t in a constant state of distress won’t actually help in the long run. Repressing these feelings may seem like a good idea in the short term, but in the long run leaning into the pain and hurt of loss is the only way to get to the other side.

You don’t get to go back to before, but there is hope and possibility in the ‘after’. It won’t always hurt the way it does right now. If you do the work – if you grieve your loss – there will come a time when you can get through an hour or a day or even a week or longer without tears or anger or numbness taking over. And if you do this work well, over time you may find yourself softer, more compassionate, and more capable of appreciating the complexities and challenges of life.