One of the more surprising aspects of being the parent of a child with special needs is the reaction — or lack thereof — of close friends: people I believed would be there for us have faded into the background. At the same time, other people — some new and some old — have come forward in remarkable and wondrous ways.
I try not to judge why some long-time friends aren't there now. Perhaps they feel awkward or uncomfortable; perhaps they feel we might need too much; perhaps they're unaware of how much a little help might mean; or perhaps they're just too busy with their own lives and don't think they can take on someone else's problems — each of which is a valid feeling.
Whatever the case, it can be hard to let go of the sting when you realize those old friends are gone, but I take great solace in the fact that some friendships have grown stronger, and some new ones have blossomed to fill any gaps. Many of these new friends get it; they're facing similar challenges. There is no need for awkwardness, since we're in the same boat.
But I would say this to those friends who have faded away: don't. We need you now more than ever. You're a crucial connection to a time before these problems. We want to laugh like we used to and, in return, we'll try our best not to burden you with our woes.
About two years ago, shortly after C was put on oxygen, we went on a family picnic. Once situated, C began to toddle around, exploring the area, when his oxygen tube got tangled in the backpack. I was struggling to untangle the mess when C reached the end of his tether and was yanked backward. In a moment of frustration, I threw the tube down on the ground.