A mother's journey of grief and hope

Hope has been in short supply lately.

Its presence is hardly felt when you are preparing yourself to receive a devastating diagnosis for your two year old daughter.

When you are researching the worst possible scenarios that will soon be your reality. Learning more than you ever wanted to know about genetic testing and neurological disorders and all kinds of other scary medical things.

When you are heading to countless appointments and assessments and tests and meetings, never getting any answers.

Hope is not what you feel when slowly, one by one, all of the “simple” answers are taken off the table and you are left with the truly devastating ones.

In the midst of all of that, any hope you once had slips away. And for a while, you are lost in a sea of grief.

Grief for all the “shoulds” you were so looking forward to. Expecting. Had taken for granted as a given reality.

Grief for the life you imagined for her, for her sister, for you.

That grief? It consumed all hope. And replaced it with Pain. Worry. Fear. Stress. Depression. Overpowering and consuming. Swallowing the bright future you so desperately wanted for your beautiful girl.

You are drowning in that grief. It is a dark and cold and dreadful place.

Soon resentment and jealousy rear their ugly heads, threatening to confine you to a lonely life as a hermit, hiding away from the “lucky” ones. The people who will never know this grief, this pain, this worry. Who don't know how lucky they are. Who can't know.

You find yourself stuck in a place of pity, wallowing in the unfairness of it all. Why her. Why us. Why me.

You blame yourself; mother’s guilt – possibly – but of course this is your fault. You had one job: to grow and nurture a healthy child – and you failed. You worked too hard while pregnant. You exercised too much. (Or maybe not enough?) That one time you had a bite of brie – that must have been it. Maybe it was the stress of trying to do too much at once. Was it the birth? Should you have said no to the induction? Breastfed exclusively or for a longer time? You went back to work too early. Maybe it was the time she fell off the change table when you were exhausted and overwhelmed. You weren’t paying close enough attention. You didn’t catch the delays early enough. You didn’t fight hard enough to be seen and heard. To be taken seriously. It’s your fault. You did this.

The rational side of your brain knows this is not true. You made every decision for her. You sacrificed so much for her. You loved her and cared for her and prioritised her from the moment she came into existence. Before that, really. There was nothing you could do. This was outwith your control.

But the emotional side is not so quick to back down. The guilt lingers – however unwarranted it may be.

And yet you go on. You drag yourself out of bed, you put one foot in front of the other and you show up for your girl every day. You have no choice. She needs you.

You find a community. Seek out support. You find other people who truly get it. They are living the same nightmare and are still fighting strong. Their strength and resilience bring hope too.

You make sure you are staying on top of all the treatments and therapies and cutting edge research. You read stories of progress and development and you see more hope.

You arm yourself with knowledge. You read and seek and listen and learn. You prepare for the worst, so that nothing can catch you off guard.

You fight. You ask and you chase and you demand. You don’t take no for an answer. You make the awkward calls and ask the uncomfortable questions and challenge the information you’re given. You make it clear that you won't back down. You can’t. She needs you.

And it is here that you find new hope.

You find a strength in you that you didn’t know was there. A bravery and determination you never knew was in you.

A new perspective: one of acceptance, of courage, or finding joy in different places than the ones you expected.

You find acceptance that while things look different than you wanted them to. There is more than one version of motherhood, of childhood, of a life that is beautiful.

You find new purpose and there is so much hope there for a future filled with meaning. More meaning than the one you had planned, even. Hope.

How strange that we find hope in the darkest of places, in our most desperate moments. If we can just find the strength to claw our way through, and once again cling on to that shred of light that keeps us going.

Today, hope shines through. For her future, for ours as a family, for mine.

I know that some days, the grief will creep back in; like the dark, foreboding Scottish clouds that overpower a clear blue sky. For a while there will be rain again. Rain and wind, thunder and lightning, maybe some hailstones too. Beating down on the land, relentless and merciless.

But the sun will peek back through, in its own time, ever burning and bright. Knowing it’s needed for growth, for light, for life. Sure to return; a constant, reliable faith to hold on for.

Hope.

If you've been affected by this piece, please see our support page(this link will open in a new window) for help and advice.