Never an Empty Nester

When your child turns 18 you celebrate adulthood— graduation, maybe college, maybe moving out of the house…. Teens count down the days it seems.

I recently took some classes about what happens when Kaylee turns 18.

Spoiler: it’s not all those things I listed.

At 18 we will have to file for guardianship with the state.

At 18 we will need to have a trust in place with trustees and POA… utterly overwhelming.

At 18 we will receive SSI and begin “charging” room and board for filing purposes.

At 18 she will still have 4 years of high school left because of a retaining schedule- then we look for adult programs.

Not the exciting launch into adulthood that a parent typically awaits.

I’m still processing.

I tend to ignore these giant hurdles when I’m overwhelmed.

I can’t see much beyond the current season so absorbing all the future holds is too much.

Raising a disabled child just means you eventually, and hopefully if health allows, care for a disabled adult.

But no one talks about adults with CP.

There’s no sweet inspirational photos of adults with the severe complexities that the children have.

Insurance cuts off supplying equipment and certain medical supplies. I mean, how wild?! Like suddenly the age changes and a disabled person with a diagnosis without cure will simply no longer need the same supplies?

It is truly maddening and terrifying to digest.

During these heavy transitions —

I see you.

I am you.

I’m just as heartbroken.

I know there are online resources and attorneys and advocates to guide us through the impending season, I’m just not mentally and emotionally ready to dive in yet.

Ya feel me?