"How do you do it?"
That was a question I got from a random stranger today as Chloe and I were on a walk at a park. Chloe was in her wheelchair and she was having more myoclonic jerks than usual. I kept grabbing her hands to calm her down, then helping her bring her head back up.
I was a bit taken back, then responded with a smile saying, "It's a privilege."
The stranger looked at me like he thought that my response was the lamest thing he had ever heard. To which I thought, 'Whatever, Dude.'
During the rest of my walk, I thought about what I wish I could have said to that guy if we had the time. I wished I could help him understand our life and how much we don't want his pity, but hope for his ability to see Chloe as she truly is, such a special and unique individual.
I decided that if I could, I would start by showing him this picture....
Isn't she beautiful sitting up? Tilting her head just so and showing off her beautiful blue eyes.
What the picture doesn't show are her Grammy's two hands on her left side and my two hands on her right side holding her up. What the picture doesn't explain is that she was only able to hold her head up like that for a fraction of a second. What the picture doesn't show is the fancy camera that was used with an extremely fast shutter. It doesn't show the time the photographer spent on Photoshop to edit out our hands and blend in the background. It is only after you find out these things that you see how her dress is ruffled up on her left side from where a hand actually was. But all the time and effort was worth it to have this picture, this moment frozen in time.
I would explain that 'how we do it' is much like this photograph.
Just as the picture captured only a fraction of an instant and didn't explain all that went in to getting that photograph, the stranger passing us in a park and watching us for a few moments doesn't give him the full scope of our life.... the challenges AND the blessings.
Also, just like the picture, there are unseen angels holding us up and giving us help. Some days we are each others' angels. Many days our family and friends are the unseen angels. But always there is a heavenly presence with Chloe. It is not visible to most people.... it has been edited out by the chaos that is all around us, but angels are indeed there.
I would ask him to look into Chloe's eyes to see how much love and wisdom she gives, rather than the burden he saw her as.