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I’m lonely.

Not typical loneliness…

A special kind of loneliness that I think is reserved for parents like me….us





No matter what I try, it won’t go away.

I really feel like nobody  here, physically, in my life gets ‘it’.

They try.

I am so grateful for that.

But at the end of the day.

It is me.

Diego’s dad isn’t helping.

With a statement last Sunday of:

“if I don’t see him more, I won’t see him at all” 

he has solidified for me that he will never accept his son’s special needs.

Rickey is wonderful, seriously….but we think and process things so differently.

Sometimes I wonder if Diego was his flesh and blood, that his reaction to things would be different.

He says no.

I’m not so sure.

He is also gonna be pissed that I mentioned this in the blog, but oh well….he barely reads it anyway.

Diego’s MRI came back…..

Our Neuro is out of town and if I rely on the radiology report alone, D has two lesions on his brain.

Once the neuro gets back, she will look at it and tell me if it is nothing big to worry about like Virchow Robins Spaces (which may only increase risk for seizures when dilated) or if we are looking at something bigger. 

This consumes MY days and nights.

Nodody else.

I’m tired and worn out.

So over the happy face facade I have been rolling with,

Trying to stay on top of everything (unsuccessfully) leaves me so damn tired.

Does any of this ever get easier?!

I am strong I know.

But even the strongest man needs to rest.


About sonidoinquieto

I hate writing bios *bio pending*

6 responses »

  1. I hear you, and I “get it” as much as possible by not actually walking in your shoes. Remember how great you’re doing with major life changes. Hang in there, and try to be as good to yourself as possible!

  2. I agree with beth, Rickey IS a weirdo…. i love you shibongers ❤ and if you ever wanna trade my newborn for a night to sleep 8 hours straight and play sharks with d I'm totally down : )

  3. Oh boy, I would be up at night worried about that MRI too. I’m so sorry that you got results but no one to read them and make sense of them for you! That’s a lot to sit and wonder about. I feel for you and hope you get answers soon.

    The loneliness – I GET IT. Oh man, do I GET it. I feel that way many times and it’s a frustrating feeling. Know that even though we can’t come over for a nice stiff drink, we get it, and we’ve got you.

    And the man thing – I agree with Beth, trust in him. My husband just doesn’t process things about the Roc the way I do. I’m the ONE who researches it, studies it, seeks advice and then does it, lives it, breathes it. He does things in his own way and over time I’ve tried to let go and just let him do it his way… because there is value in his way too. And if we were both as nuts as I am, things would be pretty unbalanced around our house!

    Thinking good thoughts and sending them your way. (Oh, and a nice martini and a hug too.)

  4. Oh, honey! I’m so sorry about the MRI and the lack of clarity about what the results mean yet; that would keep me up nights, too. Hell, who am I kidding? It HAS in the past.

    I totally get it about the loneliness, too. We’re in similar boats on different parts of the ocean, I think. 😦 FWIW, Rickey may actually be right about not feeling differently if Diego was is own flesh and blood. I know sometimes I get so frustrated with my husband because he seems to see certain things about Nik and his challenges VERY differently from me. It’s just how he’s wired, I think. But I know he would lay down his life for Nik in a heartbeat if he thought it would make things better.

    Trust in the man you love; let his perspective be a balance with yours. And let the people around you who love you but might not entirely “get it” love you as best as they can. In the end, we can all use as much love as we can get, right?

    Sending you a giant dose from the east coast.


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