Waiting Is the Worst

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I try and be patient, really I do. However, I find myself waiting by the phone, or the letterbox, or refreshing my email account every time there are results due, or a decision to be made.

Waiting is the worst.

For the 7.5 short years that my gorgeous daughter has been in this world, I have been waiting, and do you know what? I don’t even know what for.

We have lots of answers, lots of diagnoses that we just seem to be gaining at every appointment. Like a collector managing to find all but that one most rare figure that they need to finish the collection, we are waiting for that one diagnosis that will finally bring all of those little ones together, pulling them all in and tying them all up neatly. That last figure on the shelf making the collection complete.

Except it won’t help, will it? Once that collection is finished, there will more than likely be another collection to collect. Another diagnosis that doesn’t make sense, more appointments, more letters, and more waiting.

Waiting is the worst.

I thought that my daughter’s diagnosis of autism was the last piece for us – the final piece in the collection. We had to fight, we had to plead, and we had to push. She masks her symptoms of autism, you see; she conforms to a society that doesn’t quite understand her. She holds it all in and she releases when she’s home. Her safe place – her haven.

It turns out that her Autism diagnosis was just the end of the beginning. We still needed to collect the extras, and are still hunting for the rare. Researching symptoms that point us to the middle of nowhere, several directions to take and lots of dead ends, waiting on further directions, extra referrals.

Waiting. Waiting is the worst.

As I sit here – waiting for my rare collector’s item, I can’t help but wonder how many more of us are in this situation? How many more parents are out there that thought an Autism diagnosis would be the end, only to find out it was just the beginning?

Waiting, watching, researching, wondering, consumed by thoughts that lead nowhere certain. Just a list in your head of points to remember to mention at that next appointment. Another collection, more waiting.

Waiting is the worst.

Jodie Eaton

Founder at Lots of Love and Affection
I am Jodie, the mum of three beautiful children. I write to gain awareness, understanding and acceptance of autism, which my two eldest are diagnosed with, along with numerous other disabilities. Please follow me @lotsofloveandaffection.

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