An open letter to those I lost along the way…

I was browsing Facebook at 2am. Kiddo had been awake since midnight again. He insisted that I lie in his bed with him and since I couldn’t sleep through the sharp kicks into my ribs (shouldn’t that end with pregnancy?!) I thought I may as well attempt to connect with the outside world.
As I flicked through the colourful passing snaps of everyone’s day I came across some of you. You looked so happy, and it warmed my heart, it truly did. In some you were with people I did not recognise, your life had moved on as had mine. There were families, maybe children, holidays galore. I couldn’t help but feel a pang of jealously. For you have a freedom that I do not. Still, I wouldn’t give up my world for anything, not even a cease in repeat karate kicks now targeting my back…

Then I saw it. A different photo. A group of you I knew from so long ago, a sea of elated smiles and joy, all delighted to be in each other’s company. And it brought a tear to my eye. In fact, it brought several. Because I know that only a few years ago I belonged in that photo. I was there, smiling without a care in the world, completely oblivious to the path the universe had planned for me. 

I can only imagine what you felt when I stopped replying to your messages. Stopped making the effort to see you in person. But when autism took hold of our house, it took hold with unapologetic vengeance, and it didn’t let go. My entire life was swallowed up by this one word. I couldn’t breathe. I couldn’t see a way through. Everything I had ever known was about to change. And in that hurricane of chaos you were lost. But it was me that lost you. And for that I am sorry. You may or may not have children of your own now, but all I can say is that when you do, they are your everything. Your world. Your priority. Kiddo didn’t ask to be brought into this world, let alone with autism in tow. So I shoulder that responsibility for him until the time comes, until he is old enough to flourish and fly and use his autism as a gift. But until that day, my life is consumed by his needs, and I firmly believe that’s the way it should be. Perhaps you will be patient and one day welcome me back into your life? I can only hope. 

Back in the present and the night is unfolding in front of me. And all of a sudden it seems endless. I think back over such fond memories of us. Growing up, school, university, holidays, wherever I knew you from. Such bittersweet feelings arise. For the memories are so beautiful and strong, but that’s what they are. They are memories.

When I decided to start my blog there were many reasons. To educate, to campaign, to raise awareness. But above all, it was so I could let my friends and family have a way into our world. For how else do I tell you? I can’t sit down with you and explain it all over a cuppa. The stories and lessons are endless. But writing, writing may just work. So I began to put pen to paper (or finger to iPad in this modern world) and let the world know what raising a child with autism is truly like.

A few weeks on and so many of you have got in touch, and I cannot tell you what this means to me. I realise now that I have not lost you, we just took a vacation from the past. And slowly and steadily I’m finding my way home. Only this time, I’m able to bring the kiddo with me. 

The fact you even took the time to read my musings shows me that our bond still exists, we still hold a mutual respect. For you must know how much I respect you. Although I have felt disappointed and despair at our situation at times, none of that was ever directed at you. For how on earth could you have known? How on earth could you have understood the impact that Autism has on someone’s life? You couldn’t. So I write these blogs for you now in the hope that one day we will meet up again, laugh through the day and dance the night away. If I can stay awake anyway…

Kiddo has settled, this is my chance to sleep. But as I close my eyes I will be lost in fond memories of a time I have not forgotten, and one day will re live again.

I say this and I mean it, thanks for reading.

Danielle 

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