As for me…


To be clear, When I look at this view I am not filled with excitement or exhilaration. I am filled with fear and anxiety.

It’s said that fear can’t kill you…I wonder.

I’ve mentioned before about my father and brothers, they often make decisions pursuing pleasure, whereas I often make decisions based on avoiding pain. In fact, I wonder if we even process pain, and the memory of pain, in the same ways.

In the strengths finder application, my brother, Tim (who took this photo) and my dad are both “Futurists” – basically it means they are optimistic about the future. And they are both, truly, visionary men with a keen eye for possibility in unique areas with incredible ideas.

Futurist Vs Strategist

My talent comes in taking that vision and working out the kinks. Asking questions. Clarifying and Cheering the development. Digging in and mapping out. I have to see where we’re going and plot the progress.

My father is a jump-and-build-a-parachute-on-the-way-down, kind of guy. I, on the other hand, am not.


At the moment, I am struggling with jumping at all. Particularly when it comes to implementing plans for Marcus’ long term future. In fact, this picture is what planning Marcus’ future feels like to me.

Everything may be OK, or it may end in the most horrific way. There’s no in between in my mind.

In our community of self-advocates and allies there is the phrase “Dignity of risk.” The first time I heard this was at a World Down Syndrome Day Conference at the UN years ago. It felt more like a kick in the stomach than a gentle nudge. It’s my struggle to balance Marcus’ opportunities for further independence and his safety.


I have vivid nightmares, based on true circumstances of horrific trauma to people who look a little like my son, people who are vulnerable, which wake me into a cold sweat and I think: “Nope. No way. “

Am I the evil witch in Tangled? Keeping my son in a secluded tower? No, not that bad. We’re pushing the lines, teaching and learning more each year, but…

I’ve said it before, Options are Open Doors.

Options are what we hope and look for. Generally, there are more options today for adults with developmental disabilities than ever before. However there are also many (way too many) vulnerable people and families in our own country who don’t have, don’t know that they have, can’t see or understand, or are logistically cut off from options; these families are trapped into making tragic decisions. It’s heartbreaking.  Real. Happening  all around us. One miscalculation or accident away from us, too. 

There are so many complexities to protecting  my Marcus and still enabling him to pursue his own life goals.

Honestly, we are too far from success on this point. However, we keep learning. Marcus shares with me and others in his life his ambitions and we work together to facilitate his growth in the areas of life he wants to pursue.

Still…We are short of optimum.

I need to have more lined up, a better harness before someone or something pushes me/us.

Next year Marcus turns 30. Among all the feels, there’s a little bit of panic.  The time has come to build a parachute,  a circle of support, for Marcus (and for me).

It is important for Marcus to have a team, his team, to help and support him.

We (Marcus and Quinn and I) have talked about including the talents and capabilities of those close to us to be a part of Marcus’ planning and life goals. We will ask for help. We will listen and respond.

Better to have a parachute or harness ready, even if we never jump, than the other way around, right?

Deep breath.



This has been a photo prompt Finish the Sentence Friday.

Join us to and write to this photo or the title “Jump.”

Hop is open all weekend!




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