Heartbreak: Gavin has recognized his fragile health

One of the things that I left out last night when sharing what happened to Gavin was a new realization. This realization is going to make things way more complicated going forward.

Last night, I realized for the first time that Gavin has become aware of his deteriorating health. 

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Up untill now, it never appeared as though he was self-aware enough to understand what was going on. However, after talking with him last night, it’s clear that he is.  It’s not like he understands what’s going on but he’s getting worried.

I asked if he wanted us to talk with him about what’s going on with his health.  He said maybe.

This changes everything….

Now we have to worry about whether or not he’s intentionally hiding things because he’s afraid of what they mean. We have just entered a new phase
of unexplored territory.

I’m not sure what to do or how to explain to Gavin about his fragile health. Lizze and I have no idea what to do.

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Carl Young

How do you approach that?

In Marc's case, he wants a home visit in the worst way. I hesitate because he isn't stable for more than 24 hours a time. I struggle because we have other children that are still at home, who after a year are beginning to feel safe at home again.

Last week Marc started pounding his head against a wall. No idea why. And the facility where he lives says that he needs to move to a facility that is better able to care for him. I get regular reports about his deteriorating mental health and stability.

We visit Marc for two hours a week. It is all that he can handle at one time.

Marc knows that we are looking for a different facility. And he doesn't understand why. I don't know how to explain it to him.

Trish Morrin

All my love .

Cate Sforza

{{HUGS}}

Rob Gorski

That's a good idea. We see Dr. Pattie today and see what she thinks as well. Chloe, you never cease to amaze us. Thank you for being such a good friend.

Elizabeth Ann Lendrum

Chloe – that's a great idea, I was going to suggest finding someone who can help you guys know what to say, and just how much to tell him. The specialists are the best resource for that… that's what they have to do day in day out. Honesty is the best policy, especially with kids/teens – but how much is too much where Gavin is concerned! I completely understand your worry about him hiding stuff because he's afraid… adding another layer of complexity to an already impossibly complex situation. You guys are always, always in my prayers.

Chloe Rothschild

Could a Child Life Specialist at the Children's Hospital give you some ideas?

AMDuser

When you do I suggest your and liz be there and also Dr. Patti to help. I know if I was in Gavin’s shoes I would want to know all the issues going on with me. I think his processing of things is starting to realize that something is not right.

Raynette Jones

That would be one for Dr. Patti as she has helped yall in the past. If it is not one thing it is another to worry about.

mkosmicki1

Oh dear.  So sorry to hear this Rob.  I’ve got two words…Dr. Patti.  Hugz and Love to you guys.

Lost and Tired

@DurhamCraig Lost_and_Tired Thank you so much 🙂

DurhamCraig

Lost_and_Tired So sorry..

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