I share a lot of our struggle. I need it to be seen. It cannot be the part of autism that gets ignored to make others more comfortable. And I feel like so much of severe autism gets minimized. It has to have a voice!
I don’t just want people to be aware or accept, I want you to be a voice, an advocate and see the whole picture. You have to see the dark, because it is there whether you want to see it or not.
However, with that being said, I don’t want you to think our world is all sad, full of stress and heavy. We have so much joy!
The whole picture, I want you to see it!
My beautiful girl has joy! She has so much of it! The struggles of autism do not define her life and her whole being. And just a moment of my girl’s joy can fill my heart full of love. Her joy can cure my dark.
The older she gets, the more I have to let go of the stress of the fix, the cure and the verbal voice that may never come. I hold hope for these things and always will, even with the push from those who disagree. But letting go of that stress will help the flow of our joy.
Her joy comes in waves. Just like yours and mine. And lately, even with the hours and hours of lost sleep, we have seen so much of her joy.
My girl is waking with a smile more often than not. She is coming out of her room, wanting to be in our space, which we so badly want her to be in, and she is including us into hers. This went away for a while and it was heartbreaking and hard! Hard to witness, hard to figure out but it helped shift the focus back to find her joy. The hard times sometimes give us direction. And I love seeing her joy break through more and more every day.
She wants my head next to hers and to stare right into my eyes with a smile on her face.
She wants to play and to be tickled.
She wants to giggle and skip.
She wants time with her daddy when he gets home from work.
She even gives her brother a smile and laugh here and there.
Her music toy’s repetitive sounds fill our house along with her laugh.
Her joy has not been erased by her struggle!
And I know she does not want you to see her dark, she needs you to see it. But she most certainly wants you to see her joy!
Our canvas is not all sunshine and rainbows. Nobody’s is. Our picture goes from light to dark and back again.
So when I show you the struggle and the pain, know the joy is still there! It is always apart of our whole picture! We want you to see it all!
Lots of love,