finding a voice

It's been 3 years.

I only come back now because so many issues have been weighing on me AND they are so different from the ones that affected us 3 years ago.

Who would have known that I would think about my own death so very much in a year?

I say this not because I naturally am thinking of my own mortality.  I say it because it a subject of conversation with others.  It comes up in very uncomfortable ways.  The first is in my profession. I'm a wedding photographer and a frequent question is, "what happens if you die?  who photographs my wedding?"  The other is in relation to what happens to my youngest when I leave this earth.  It comes up in so many scenarios these days, more so than when he was a newly diagnosed 5 year old.  I now think about this part all the time.

I think about it admittedly most at night when I can't sleep and his sweet little self is nestled close to me.

I think about it a lot when I realize I don't have the answers to big questions like how are we going to potty train Henry?  What motivates him?  Do strangers understand him even if we do?

It comes down to the fact that no one knows him as well as we do.  We are hoping beyond hope that one day he can communicate and participate in ways most of society can understand.

Last week, we went to Adam's Camp for the first time.  There was a session addressing sibling issues which in fact, became also this question, what happens to our children once we are gone?

Because of these questions and many others, I am back writing and photographing and thinking and exploring because I feel like I am way too much in my own head.

I'm back out here because I know so many others don't want to think these things in the middle of the night and think they are alone.

So I put this out there- how do you deal with questions of your mortality when you are a caregiver to a child with special needs?