Diagnosis Day.

On Thursday June 7th, this year, my daughter was diagnosed with Spinal Muscular Atrophy. 

I’ve been meaning to write this post for the last month. I wanted to put this out in the world so that when other parents get the same diagnosis for their children they can read about how we felt and know that the way they feel is ok. I have found it incredibly hard to find the right words to describe the experience, have written it out in my head a couple of times but have never gotten to the point of typing it out.

Here goes.

When your child is diagnosed with a condition that is not only degenerative but will likely shorten their life and, before it takes their life will take their ability to sit, move, eat and even breathe, it’s ok to grieve.

It’s ok to grieve for dreams that must be given up. It’s ok to grieve for what will never be. It’s ok to grieve for what will be and for what may be. 

I have grieved for the dream of my daughter's wedding, of watching her walk down the aisle on my husband's arm. I know that marriage may not happen for her, for so many reasons, and that grandchildren are very unlikely, and this hurt deeply in ways I wasn't expecting. I kept my wedding dress in case she wanted to wear it some day. I kept home made baby clothes for her children to wear one day. I keep them still but for different reasons now. I hope that even as old hopes die, new ones may be born.

It’s ok to grieve, and it's ok to grieve multiple times, for new things and old things and in different ways. Your child’s disability and the consequences of their condition are something that you will carry around with you for the rest of your life. It won’t go away, it may or may not get easier with time. It’s ok to return to grief when you need to and for grief to resurface as circumstances change.

But you can’t live in grief.

Because you have in your life, a living, breathing, smiling child who wants you and needs you and loves you.

The necessary companion to grief might therefore be joy.

Joy is different to happiness. There can be joy in pain, joy in struggle. It is a deeper, more long-lasting emotion than happiness. 

There is intense joy in watching my daughter do the things she does well. I watch her scribble with textas and note how well she grips. I watch her stack blocks. I watch her pretend to feed her doll. I watch her drink for a toy teacup. I marvel at how dextrous she is.

She babbles away and points at things she sees follows simple instructions like “put the block in the box” and I marvel at how connected she is with her world and how much her bright little mind is processing. 

I marvel at the love she displays for her family and friends. She is affectionate and open and charming. 

There are a lot of things that she will never be able to do and I think about those things a lot. We spend a good portion of the day doing gentle physio and exercises to keep what muscle tone she has and in my head I have a check list of activities which will each target a specific area, like leg strength, standing, torso strength, range of motion, arm strength, reach, rolling, posture, joint straightening, head control, and more, while trying to incorporate imaginative play, art, outside play, exploration and the puzzles and building games she favours. That’s all in my head, and sometimes I worry that we aren’t doing enough, or worse, that I’m pushing her too hard, but when I am interacting with her, my focus is on praising her and letting her see the joy I feel at her achievements, at her joy.

Joy and grief.

If I could add one final thing it would be: don’t forget your other children. My son is a sensitive and intense boy. He picks up on the emotions of others even at the best of times and he magnifies them. This last month has been a roller coaster for him and despite my attempts to shield him from my grief, my husband’s grief and the emotions of our families, he has felt it, and at times it has left him bewildered, scared and down right angry. He has needed me this month (and in the months leading up to the diagnosis) to show the joy and love I feel for him too. He has needed me as a safe place to fall, as a safe place to crash into and rage against, as a safe place to come back to when the rage is finally spent.

As focused as I am on providing the highest quality of life possible for my daughter, I refuse to let my son feel that he less loved, less noticed or less important.

It’s a hard task.

You need to be kind with yourself. You need to go at a marathon pace rather than at a sprint and you need to be aware that the race track could change direction at any time.

I have really only just begun this journey but these are some of the things I have learned so far, in the wake of the diagnosis, the D-day that changed our world forever.